Stepping Into The Unknown

Last Wednesday Kim and I went in to see her rheumatologist for her regular scheduled appointment. We brought our list. And now we need some help from our Rheum community.

2012-12-19 08.58.29

In October, Kim got a very bad case of the shingles and since then she has been on a downward spiral with her RAD. Because of the shingles, she had to stop taking her Humira for about 8 weeks. When she was able to go back on the Humira, she took two doses and then had a herpetic outbreak in her mouth which meant that she had to stop the Humira again. This time she stopped for a couple of weeks before she was able to go back on it. The results of course of her not being on the Humira is that she is doing significantly worse. However, while we see a noticeable difference when Kim is not on the Humira, the disease is still progressing even with all of her medications including her Humira. As Kelly stated in this post from last week, since Kim was diagnosed a little over a year ago I have watched her “be able to do less every month than the month before“. The last few months have been very rough on Kim and so we put together our list of concerns and questions as we went to the rheumatologist’s appointment.

In the last few months Kim has gone from having daily pain mostly in just her hands and her back to her now having constant pain in her hands, wrists, back, neck, knees, hips, and feet. She also has the occasional pain in her ankles and elbows. Her hand pain is so severe that simply writing a check will cause her hand to cramp up in pain for minutes after. The other night I was outside and she peeled a half dozen kiwis for the kids. Doing so causes her left pinkie finger to spasm and stick straight out as far left as it can. It also took her about 20 minutes to peel the kiwi, but she got it done! Her back pain has been incredible and has caused her to max out on all of her pain medications that she can take. Even with all of her medications, she is never free from pain. It is always there though it may be diminished slightly. Her hips and knees pain has gotten excruciating. Laying flat in bed and crossing her ankles places too much pressure on her hips and knees and has become impossible. Simply shaving her legs has become a painful and almost impossible task. She drove home last week and was unable to use the cruise control because of the road conditions. Twenty minutes of driving left her hobbling like an old lady because simply pressing on the gas pedal caused pain in her feet, knees, and hips. The base of her thumbs were still sore the following day from gripping the steering wheel. Also, as her joint pain and apparent disease activity has increased, her breathing has worsened which makes us wonder what is going on with her lung disease. These are just a few of the things we wanted to talk about at her appointment.

The rheumatologist looked at the sheet that we gave him for less then five seconds. He talked with us a little bit and then did his physical examination of Kim’s joints. When he was finished he concluded that she has no noticeable swelling. We both looked at him like he was crazy. Kim’s fingers are swollen, stiff, and every one of them is noticeably crooked, but in his examination he said that the joints didn’t feel “squishy” so he doesn’t think there is inflammation. Also, he said that since her SED rate was low that he doesn’t see her RAD as being very active. I pushed back because Kim has never had a SED rate higher than an eight even when — in his examinations — she was visibly swollen. He then said that he believed that she was in pain, but that he was confused since Kim didn’t “fit the textbooks” for rheumatoid arthritis. I managed to keep my cool. He also said, “When I saw you a few months ago you were in remission and now you’re worse then you were at your diagnosis a year ago.” Yes, she’s worse than she was a year ago. No, she has never been in remission. Not by the old standards and not by the new standards put out by the ACR last year.

We asked for an MRI of Kim’s hands and her back. He agreed to do the MRI of the hand, but he continues to think that the back pain is unrelated to her RAD. It very well may be, but the links between back involvement and RAD are many and he is choosing to ignore this issue. However, he did refer her to pain clinic and the doctor there will order an MRI of her back so Kim will still get what she needs.

The rheumatologist then went on to say that he doesn’t think the reason that Kim is doing poorly is completely related to her RAD. His theory is that since she was diagnosed last fall and it is now late fall/early winter that this is simply a seasonal thing. That she has some undiagnosed, unknown “pain syndrome” that flares in the fall. He admitted that he was completely puzzled and wasn’t sure what to do. His orders however were that Kim should stop taking her MTX completely “as it doesn’t seem to be doing anything, and the side effect risks are too great to stay on it.” He wants her to stay on the Humira even though she has had two infectious outbreaks (shingles, herpetic sores) that were likely caused by her Humira. He wants to see her again in two months after she has been to pain clinic and if she’s not improving or is worsening then he would suggest that she get a second rheumatologist opinion.

So here are our questions for the Rheum community;

  • Should she stop taking the MTX?
  • If she does stop taking it what affect will that likely have on her lung disease that is caused by her RAD? (We are waiting to hear back from her pulmonologist before she stops taking it.)
  • Should we be looking at another TNF inhibitor or another biologic since she has had two infections on the Humira?
  • Since Humira and MTX work best taken together, why stop the MTX and not the Humira?
  • Any suggestions on how to further approach discussing back pain and neck pain with a rheumatologist?
  • Kim’s constant tendon cramping in her feet and hands and the numbness in her toes, RAD or something else?

We would appreciate any feedback. As always, we are extremely grateful for the love, support, and prayers from our family and our friends.

Update: Here is the follow up to this post. Losing


Filed under Humira, Questions, RAD

45 responses to “Stepping Into The Unknown

  1. I am sorry Kim is having a rough time. So difficult to hear. My advice, stay on MTX, try a new anti TNF and get a second opinion, not necessarily in that order, second opinion would be high on my list. It took a lot of anti TNF for me to find Rituxan, and the side effects for MTX are minimal at best… Rituxan has literally changed my condition and improved my life, but I had to go thru a lot of other therapies first…kim

  2. Eric,
    Your post hits square in the center of the battle we have been fighting in this community for nearly 4 yrs. (It has been the actual battle of patients for much longer, but there was not a community where it was faced collectively.)
    Let me give this some thought. I want to address your post adequately.
    Please give Kim my love as always.

    • Dorothy

      Eric, I’m so sorry to hear how things are going for you and your wife. It took me 5 RA Doctors before I found
      One that cared. I had information off the Internet regarding testing and drugs… The first 4 doctors would not even listen to me and I was getting worse. By the time I found my current doctor I could not walk very far and I had to crawl up and down my stairs!! My bedroom was on the second floor!! I’ve been on Enbrel for 7years with great positive results for me. If I go off due to a cold I start to feel bad at 3 to 4 weeks and when i start back up it takes a good 2 weeks to feel better. Find a new doctor and one that will listen to your concerns and his goal should be your wife care. Every day for me brings an odd pain and they are never the same. I will keep you in my prayers…..

    • As an update to my above comment, here’s the link to a post where I addressed some issues raised in Eric’s presentation of Kim’s story. . .I’d also like to reply as others have, to Kim’s specific dilemma & Eric’s specific questions above. Patient to patient, here’s my best guesses –

      Methotrexate and lungs: this decision should be made with a pulmonologist who is knowledgeable of rheumatic diseases such as rheumatoid. I know patients for whom methotrexate was the treatment that improved their rheumatoid lung disease. Methotrexate can cause lung problems, but that is rare. The dr should be able to tell which caused her lung symptoms – the rheum disease or the mtx. I agree with Dana & do not see his reason for withdrawing it.
      There are many different views on switching biologics but the bottom line is that it depends on how her unique system responds to each one which can’t yet be predicted. Unfortunately.
      Tendon cramping is typical RA. I see it in others & myself, especially in hands or feet. My Dr. Smart confirmed it is very common when I asked a few years ago. Tendons are commonly affected by RA – that is the cause of much change in appearance and function (and deformity). The numbness in her toes is possibly related to inflammation in her back; but that’s just my guess since I’ve heard doctors say so.
      Finally, I’m glad you’re finding a new rheumatologist, but it may be necessary to have her back issues treated by a back specialist. In my experience, the imaging is evaluated by the neurosurgeon and if surgery is not needed at this point (most likely the case), then she is seen by other doctors & therapists who can treat her symptoms with injections, pain meds, physical therapy… And they can help monitor her to know if & when she needs surgery. If the rheum doc does not acknowledge that it’s related to her underlying rheumatic disease, that would be less of an issue if she’s at least being treated. As a single patient-caregiver, I don’t think trying to change the mind of a rheumatologist would be successful – he’s just believing what he was taught in medical school. The back specialists I’ve seen have all attributed my back problems to the RA – so if that is the case with Kim, she could also have those reports forwarded to her rheum dr. (One last thing – imaging for the spine is improving. The new upright mri machines that I’ve talked about on the blog may be more accurate – there are case studies showing that anyway. And the back specialists should examine her clinically in addition to the imaging. Not all docs do.)

  3. Teresa

    I’m sorry to hear Kim is having such a hard time, and think she’s very lucky to have you watching out for her and being so involved. My advice is find another doctor and/or another drug and don’t waste your time with a health care provider who can’t spend more than 5 seconds considering your list of concerns. After failing on Enbrel I tried Humira and got sicker than I’ve been in the 15 years since diagnosis of RA. Finally got on Remicade on October 30 and it took the 3 loading dose infusions but about 3 days after my last dose I started feeling better. I too was having breathing problems, relying on my rescue inhalers every 2 hours, and now even that is much better.

    Hang in there and insist on getting what she needs, I hope your team work can get her back to some kind of normal life.

    • Thanks for your comments Teresa. Kim has stayed on the MTX for now, but her pulmonologist also gave the “OK” to go off it. We are still torn about what to do on that one. We are in the process of looking for a new doctor.

  4. Oh my… as Kelly said, this really highlights a huge issue that so many patients have faced. I am so sorry that Kim is stuck in this mess with a doctor who “doesn’t know what to do.” This whole idea of “textbook RA” needs to be addressed, as there really is no “normal” with this disease…doctors need to be taught to expect varying results and varying disease courses. And the SHOULD KNOW what to do, at least as a recommended next course of action in Kim’s case. But, you already knew that…

    To try to address your questions…
    I am not sure why he would recommend taking her off MTX unless there were unreasonable side effects from it. My guess is that mtx alone is not enough for Kim, so combination therapy would be best. As far as switching to a new treatment, I think that’s a legitimate option to consider. I don’t know at which point doctors will typically recommend changing to a different drug because of infections — and I don’t know how much infection risk could vary from drug to drug for her. But, she’s had it pretty rough. Also, being off of Humira for that long is likely to have really messed with things, and on Humira or on a new drug, it will take time for the symptoms to rein back in. Even my switching to Humira from Enbrel and being on too low of a dose for the first month had repercussions for a few months thereafter. And Kim’s disease seems much more progressive and aggressive than my own.

    If your current doctor is suggesting a second rheumatologist opinion if she’s not better after two months, that tells me he’s not going to know what to do going forward and not likely to have any good advice for you. I’d recommend looking for a doctor who can give you a second opinion right away. I would expect a rheumatologist to give you several options from this point, which you could discuss with him and make a joint decision (no pun intended) on the best course of action.

    I would consider all of her back pain, tendon cramping and numbness to be related to RAD. I’m not sure why it wouldn’t be…seems to be the most likely reason since we already know that the disease is poorly controlled.

    Best of luck and love to Kim!

  5. NotablyNicole

    I apologize, I responded on the picture vs. seeing the full post. I agree with the sentiment of getting a new dr. I know that may not be easy as I don’t know if you have a lot of options, but thats the first step. I’m afraid without having a knowledgeable and compassionate dr. we are battling a bigger problem. Side note, I know reading this post that I am blessed to have a compassionate rheum and primary, I don’t know how frustrating this could be, I am sorry. Here is my original post without reading the full text:
    This reads like something I could have wrote, as I’m sure most in the RAD community could relate to. Sounds like you’re pain isn’t controlled and the meds you’re taking aren’t making an impact? I’m in that position, as the methotrexate is just making me drowsy but I don’t notice much in the way of benefit for my joints. I do take pain meds, I have a wonderful dr. who has worked with me through many, many meds and finally has me on a pain plan. Perhaps its time for a pain clinic? I know there are many natural ways to treat pain too, such as a TENS unit, physical therapy etc. I don’t know if you’ve tried that based on what you’ve posted? It took me a long time to come to terms with the fact that I’m taking any pain med as I’ve always gone the “natural” route. But, none of us should be in pain doing typical, daily activities. However, even on pain meds we still hurt, but they can help manage it to a degree.
    Best of luck to you!

  6. I’m thinking that a second opinion would be better sooner than later. Does he think the MTX may be affecting her lungs?
    I’m on Humira and stopped for 2 months for surgery. I’m back on it but not getting the same results as before. The rheum said that was not unusual as while I was off of it my body may have made antibodies against it.
    And even while I was on it and supposedly doing well I had a finger puff up and develop a fixed deformity (that means doesn’t move at all and can’t be fixed). The top joint of the same finger is twisting. While this occurred the sed rate was around 4 .
    Here is a small OT idea. I have a steering wheel cover that is padded. It helps avoid the bruising I was getting on my hands from the steering wheel

    Annette @anetto

    • Annette,
      We are forgoing seeing him again and going right to the “second” opinion as we search for a new rheumatologist.

      Actually, they have thought so far that the MTX has been helping her lungs as it helped slow down the progression of her RAD and it’s symptoms. We see a direct correlation between her RAD symptoms and her lung issues.

      The last few days she has felt better. Is that because she had another Humira injection last week or is because she’s starting not to flare or is it because she hasn’t worked since last week and has been sleeping 12 to 14 hours a night? Hard to say until a couple weeks go by.

      Thanks for the comment and for the suggestion for the steering wheel cover!

  7. Heather

    Kim is so lucky to have you helping her through this disease with all its nasty problems. I’m no expert, but I do have a decent GP, that has helped fill in some gaps with back/neck pain, ankles, etc and occasional cortisone shots, x- rays,etc.
    He also gives me referrals to other Dr’ s and has quick reference to my rheum Dr’ s notes. A multi care approach is helpful since there is also the possibility of fibro or other yet undiagnosed issue along with her current DX. I’ve never taken MTX alone, always with Enbrel.
    I do have a herniated disc in my back after 2 previous discs were repaired. She may have a similar problem. A good pair of RA gloves may help her hands for now too.
    Please us updated & let her know I’m praying for her!

    • Heather,
      Thanks so much for taking the time to read and comment!

      Kim does have a GP, a rheumatologist, and a pulmonologist all whom she sees regularly. So far they have worked together well to come up with a plan of care for Kim, but her back and neck issues have been passed around a little bit. We really wanted the rheumatologist to listen to us and take it seriously, but he wouldn’t. We’ll continue to fight and get the answers we need one way or the other.

      Thanks for the prayers! Always appreciated.

  8. Wow, that’s a lot to deal with. I’ve never been on a biologic, I simply can’t afford them but I took MTX 20 mg for 7 months. I quit 6 weeks ago because I simply could not handle the side effects any more. Now just taking Aleeve and using lots of Voltaren gel especially on hands and feet. My hand cramps up and my one foot is a mess. I have had a back MRI and pain block injections of Prednisone have been recommended. I see my rheumy end of January and will discuss what to do next. Life sucks with this disaese but I feel most sorry for young people who have it. Good luck…ciao

  9. Other than the shingles and herpetic outbreak, this sounds like me a few years ago when things started to get bad quickly. I’ve had RA for 20yrs but it was only a few years ago it got really bad… Fast. I’m very sorry she’s having to go thru this. It’s not fun but it’s something that can be fought with a whole lot of patience, strength, determination, positive outlook and crying (yes crying & letting it out helps) 🙂

    I think you are right. Get a second opinion ASAP. The SED rate comment is rubbish. I used to have a high SED rate when I was younger which was reduced with steroids but joint damage actually started to occur when my SED rate was low.

    The back pain is common is RA but I think he’s textbook correct as it doesn’t seem like anyone really knows if it’s actually RA or as a “side effect” of RA if that makes sense… Because our muscles /joints are out of whack and/or from adapting posture/walking/day to day tasks to deal with pain or even just muscle wasting leading to less actually “support”. I get back spasms and back pain and my RA dr treats it. 

    As for the numbness… I also have that in 3 toes of my left foot – I’ve had it for over 5 years. It’s never gotten worse and for me I feel it’s just a result of my toes moving from the RA possibly pinching a nerve or something. Definitely something to keep an eye on though. If it gets worse I would escalate it.

    Don’t ignore the fingers locking. If possible, as well as a second Rheum Dr opinion, I would also start shopping hand surgeons now just in case. A consult from an orthopedic hand surgeon will also assist in getting any braces or splits that may help protect tendons & joints. I wish someone had made me do this when I started getting trigger finger etc. Now I’m a bit past brace stage. Had right hand surgery last year and getting left hand done in 2013. After that the hand surgeon has a list of future ops I will need every few years. They are not difficult operations but he has said he wishes I had seen him sooner 🙂

    As for the lung issue, that’s tricky…  I personally get worse lungs/chest both when I’m flaring (and the bios have stopped working) as well as sometimes as a side effect of the bios. The pain when I’m flaring is worse than the medication side effect pain but sometimes it’s a bit frustrating to know which is causing it. 

    In regards to infections on the Humira… I don’t think it matters what bio you’re on. The key action of all the bios is to suppress the immune system so as far as I know they all carry increased risk of infection. We have a system in my household to reduce germs. If you are ever curious about that, just ask and I’m more than willing to share our “protocol.” It seems to work well. Obviously for shingles & A herpetic outbreak it’s not going to make much difference.

    I’ve been on almost all of the injectable bios over the past 8-9yrs and have switched to Rituxan which as I understand it works by destroying b cells rather than cytokines (TNF-a, etc). B cells produce cytokines so I think it’s like the next step up from injections. it’s working well. I’ve always been on Methotrexate weekly injections with all of the bios – it was my rheum dr’s orders but I never had a serious infection so I would leave those decisions with Dr #1 and your second and possibly third opinion if necessary.

    If you do switch to Rituxan or anything else and have any questions, please don’t hesitate to ask.

    Also, as a side note diet does make a difference but that’s a personal choice. I don’t do gluten free or any of that (but I prob should) but there are foods that make the inflammation worse. In addition continuing to be active when you’re out of spoons increases inflammation as well. If able, make sure she rests when she needs to. 

    Also, I assume rheum has checked her vitamin D level but if not, get it added to the lab slip next go round.

    All the best. Sending you prayers & strength.

    • Peaches,
      So much good information! Thank you! Some of it I’ve addressed in other comments, but there are a few things I wanted to mention. Kim is an RN and works in the surgical recovery department so she knows the hand surgeons personally. We will definitely have her speak to one of them soon.

      I had to laugh at your “being active when you’re out of spoons” comment because that is probably the biggest thing that Kim and I “fight” about. I can tell when she’s out or is running low on spoons, but trying to get her to not “push on through” doesn’t always work! 😉

      As far as the infections, we know the risks. What we aren’t sure about is why her rheumatologist seems to be completely lost about what to do. He actually said, “I don’t know what to do.” We had some ideas what he should do. Almost every comment or tweet back in regards to this post has been in consensus about what should be done. As I stated elsewhere, are her SX worse because the Humira is trying to “work” again, or is it a bad flare, or is it time for a new biologic? We aren’t sure, but “I don’t know what to do” is unacceptable.

      Thanks so much for your offer to help. Greatly appreciated and I’m sure I’ll take you up on it.

      • mummycool1

        Eric I totally smiled when I read the bit about you trying to get Kim to ‘not push through’. My husband is always doing the same & I can tell you now that from running a support group & from my own personal experience, I have learned this is probably the single hardest thing for us to learn to deal with. We’re women, we’re programmed to be ‘doing stuff’ and being the ‘care giver’. To have those roles reversed is just so hard. It’s hard to realise that we can no longer do what we used to but as you so rightly said it is also one of the most important lessons learned, to learn how to pace out everything that we do, from the simplest to the biggest. I tell my husband regularly that sometimes the things we choose to push through for, a family trip out, a shopping trip with a friend, a session of yoga or even a good clear out of a room is totally worth the pain and fatigue we know full well we’ll suffer during and afterwards. Some things are worth it, while others we are better off delegating or spreading out over a longer period. One thing I’ve learned over the last 21 years is how this disease affects the whole family & I’ve had to make changes to enable that I’m still able to be there for the important stuff!! Gilly.

  10. Eric, read your post again and wanted to pass on how I went for a second opinion without really realizing it. I was being seen by a well known local rheum. The humira was causing funky symptoms and was not controlling my crohns and landed me in a hospital in Miami, for five days, by my own insistence and refusal to go to a local hospital. I was seeking the help of a crohns specialist I knew was based in Miami. The miami crohns specialist (GI) TRIED to work with my LOCAL
    Rheum, to no avail, the rheum was old school and was not going to take advice or information from a younger Miami dr. The GI saw my RA as out of control and told me he would put on his “rheum hat” one time, and prescribed a large dose of prednisone if I promised to be seen by a Miami rheum who would work with him. I was desperate, “thought” I respected my local rheum, but was in such pain I followed his advice. I was able to get a rather fast appointment with the GI help and sought my records from the local rheum. After seeing those records, I was appalled at the lack of information and inaccurate information. My first visit with the second opinion lasted longer then ALL of the visits combIned with my local rheum. I am very happy now that I sought that second opinion… And have absolutely no regrets. My GI later told me, his own mother goes to my current rheum… So, long story longer, I know Kim is in the medical field, can she bend the ear of other specialists who treat other autoimmune conditions and see if they can give a name for a second opinion? Kim

  11. Hi Eric, I am sorry I can’t be of much help on what to suggest. I have had RA now for 11 years and the first rheumatologist I had tried mtx but it was not strong enough so he switched me to Enbrel. It really seems a trial and error with meds and in my experience, one day the meds are fine and the next I end up with an allergic reaction. I hope getting a second opinion will help Kim. I can empathize with your frustration. My hands have the most visible damage and how frustrating it is to hear there’s no active inflammation. Then, why are my hands so deformed and sensitive? Damage is already done. The first couple of years with RA was definitely the worst for me and every time I got pregnant, nursed and delivered 3 healthy baby boys, the drug cocktail had to change. I wish you and Kim the best in figuring out what works best to give her relief from the pain.

  12. Alison

    I feel for you, because I had a very similar story in the first year of my diagnosis. First my diagnosis has flipped flopped from RA to Psoriatic back to RA. The first rheumatologist put me on methotrexate and Humira and I stayed sick with infections without much change in my RA. When NSAIDS, Humira and methotrexate didn’t help, he just said I can’t do anything for you except give you cortisone injections and high dose prednisone. 6 mos. into my diagnosis, I quickly found a new rheumatologist. He quickly pulled me off methotrexate and Humira because of the awful GI side effects and infections I was having, and put me on Enbrel. Enbrel worked wonderfully well for my RA for 5 months, but I had a severe neurological side effect that left the doctors thinking I had MS. Many tests and no RA medications for three months later, the RA was awful, but the neurological effects had finally gone away. All TNF inhibitors were now off limits because they all have the neurological risks, so they started me on Orencia, with bridge therapy of steroids for 3 months until it could kick in. The first 3 months were rough, but 8 months in, I am the best I have been in two and a half years, and I have not had the infections that I had while on Humira. I am also being treated by the neurologist for the pinched nerves and damage in my spine that were incidentally discovered during the testing for MS. That was causing much of the pain in my back, neck, arms and wrists. I have seen more doctors, switched more medications and had more tests than you can imagine, but this time last year, I was where you are now. There is hope, but find a good rheumatologist who LISTENS and keep trying. Humira and methotrexate are not the only answer.

  13. emergencywife

    Reblogged this on emergencywife and commented:
    Doctord SHOULD ALWAYS listen to their patients!

  14. emergencywife

    Praying for you both. It is truly a horror that doctors, whom are PAID to listen to us, use every excuse in the world to do this, try that,…everything they can but the one thing they are PAID to do, LISTEN! I feel your pain on that part. Heres to finding new relief in the New Year! God Bless!

  15. gimponthego

    Oh Eric.. I’m sorry. We are going through much the same here. My RA seems worse every month. I’ve had periods of more relief and periods of less, but never a remission or anything close. My hands used to swell daily, now it is more unusual to see them not swollen.

    Anyhow, I won’t bother you with my list of complaints. The one thing that really stood out to me is that you need a new rheumatologist. Mine doesn’t check my SED rate anymore because it has never once been elevated, even when my hands and wrists looked like mickey mouse gloves. My doctor does a physical exam and talks to me (sure, not as long as I would like) and goes from there. He is quick to change meds if something is not working. Despite receiving what I think is excellent care, I am still sliding deeper and deeper into this disease. I would hate to see the condition I’d be in under the care of a doctor who did things based on labs.

    The same goes for your pain management doctor. If you don’t feel comfortable with the first one, try a different one. Mine is wonderful. She’s the reason I have been able to type this comment in only two sittings.

    As always, a big virtual hug to you and your wife. You are not alone.

    • So very sorry that you are not doing well either.

      We are moving on to a new rheumatologist. Got an email from her “current” one yesterday that was the final nail in the coffin, so to speak. Hoping we can match one up with our insurance, etc. Kim does have an appointment scheduled with a new doctor in February.

      Kim has felt a little better over the last few days, but she also hasn’t worked since last week and has been sleeping 12 to 14 hours a day. Also, we are wondering if her Humira might be starting to kick in again. Of course we won’t know that for a while. But even if it is, she is still getting progressively worse even on the Humira. It has slowed the progression, but not stopped it.

      Thanks for the hug! Right back at you. Hope you and your family are blessed.

  16. Pingback: Textbook Rheumatoid Arthritis: Patient Input Will Replace It | Don't miss this! | Rheumatoid Arthritis Warrior

  17. Kim is very blessed to have such a thoughtful husband. I’m so sorry that she is not doing well….most of us in the RA community can relate. I’m very interested in one aspect of her treatment that you mentioned. I was diagnosed with RA/Crohns related lung disease within months of my RA diagnosis and my doctors (rheum and pulmonologist) took me off methotrexate because they said that methotrexate can cause lung issues and they won’t know if my lung disease gets worse if it is the primary lung disease getting worse or the methotrexate. I’m curious to know what Kim’s pulmonologist suggested.

    • Patricia,
      Kim was diagnosed in March of 2012 with a lung disease that is an extra-articulate of RAD. At that time and ever since, her pulmonologist has been on board with her staying on the MTX. The reason being that the MTX seemed to be helping her RAD symptoms and as we have kept her RAD as managed as possible than her lung issues have been managed as well (with the help of daily inhaled steroids). We do see direct correlation between how “well” Kim is doing with her RAD and her lung disease. When one goes bad they both go bad.

      Also, Kim’s breathing issues were one of the first symptoms we noticed that ultimately led to her RAD diagnosis. We know that her lung disease was there and active prior to her starting on MTX. Because of that, we know that it was not caused by or brought on by the MTX. She goes in for regular pulmonary function tests to track how she is doing.

      Thanks for commenting.

      • Thanks for sharing that Eric. My experience is very similar. I presented with lung issues at the onset, but my primary doctor was hoping it was just pneumonia. Before she had my lab work back, she ordered a chest x-ray that revealed bilaterial effusions and started me on antibiotics. When my lab work came back strongly positive for RAD, I saw a rheum the next day, who started me on prednisone and MTX. After 3 courses of antibiotics and no change in my chest x-rays, my primary ordered a CT scan of my lungs and referred me to a pulmonologist who, based on my RAD diagnosis and CT scan results, diagnosed me with ILD and suggested that I come off MTX. They knew the cause was the RAD and not the MTX, but felt that if my lungs worsened, they wouldn’t know if the cause was the MTX or worsening ILD. It’s interesting to me how different medical opinions vary. Like your wife, when my joints flare (which is most of the time, but it varies in intensity), my lungs flare, too, making it obvious that what we are dealing with is RAD. I’ve been on oral prednisone for over 2 hours. I’ll have to ask about using an inhaler. Again, thank you.

  18. Kim Hewes

    I’ve come here from the RA Warrior. I’ve been “officially” diagnosed for fifteen years now, but suffered for five before I got a definitive diagnosis. By then I had destructive joint damage visible on a regular x ray. I urge you to get a second opinion. I LOVE my rheumatologist, but it’s taken me a series of them to find the right “fit”. She completely believes that I’m in pain, and active, even when I have a lowerish sed rate and a negative factor. I have been through ALL of the biologics with the exception of Rituxan, which I was allergic to. I finally landed on Remicade and it saved my life. Literally. I guess my disease is old school and likes the old school drugs. But I do urge her to be extra diligent about her health. I’ve had to get a port for the remicade since my veins are extra crappy, which led to a MRSA infection of the incision and two weeks on at home IV therapy, followed by right now a vicious case of bronchitis. These are all minor setbacks though, all things considered. I’ve been on Remicade over a year and despite these setbacks, I’m still soldiering on with it because it gave me my life back.
    Thank you for being your wife’s advocate, by the way. When you are in horrible pain like that sometimes it overwhelms you and you need someone to be your voice when you just don’t know where to start.
    All the best to you all and I hope you get the relief you all deserve.


  19. Nancy

    Get a different doctor immediately, although I know it takes a while to get an appointment with a new rheumatologist. I was diagnosed in late April of last year, got an appointment in early June. After assessing my blood tests, xrays, my doctor put me on a very low dose of MTX and prednisone. Had a follow-up visit with her 6 weeks later and told her I was in a lot of pain and asked for pain medicine. She said I “shouldn’t be in pain,” and that any pain was from inflammation that the prednisone should take care of. I fired her and got a new rheumatologist. He told me the doseage of MTX she prescribed was such that there was no way of knowing if it would ever stop the progression of the disease. He then put me on a quite higher dose of MTX that I just couldn’t tolerate the side effects. He then tried me on Arrava, and again, the side effects were intolerable. I am now on sulfasalazide and am doing okay. He was a bit surprised that I was doing well because it is kind of an “old-school type drug”, but said that no one patient is the same, and everybody responds differently to different medications. We have discussed having ultrasounds for the future to make sure the disease is not progressing, so he is open to the idea of up-to-the minute tools to use for gathering information on this disease, which makes me happy. You and your wife have the power. If you are not satisfied with the rheumatologist, make a change. Do a little research on top-notch doctors in your area, and make an appointment. Good luck!

  20. mummycool1

    Hi Eric and Kim, I’m new to your blog, I just found it via RA Warrior. Firstly I’m sorry that Kim is going through such a rough time right now, secondly I would like to say that I am thrilled for her that she has one of the most important things she is ever going to need in this journey and that is you. As any of us with RAD will tell you, a supportive partner/family is the single most important aspect of living with RAD. I am 21 years into my journey & believe me when I say that if it weren’t for the support of my husband & kids I really don’t think I’d be as positive as I am today. Mark is my rock through this, he comes to apts with me, helps me at home, ensures that I’m safe and not overdoing among a myriad of other things. He used the same phrase as you when referring to me ‘being able to do less each month’ in recent years.
    As for your questions, well I’ve only ever been on mtx and more recently plaquinil, I’ve never been offered a biologic as yet as I’ve not failed on the all the Dmards (I’m in the UK so our system is different to yours). So I can’t offer much insight as to the biologics I’m afraid, not from personal experience. I am pleased to see that you’ve since decided on a new rheumy though as nothing makes me more angry that a specialist who will not listen. Not every one swells (I don’t over much), not everyone has high out of whack labs (I don’t), I’m also sero-negative, but my rheumy always, always listens to what I’m telling him, he wants to know how I am coping or not as the case may be & he always examines me fully.
    I would link the numbness and tendon/ligament issues to the RA. I have both, and I would stress the importance of finding a good Occupational therapist who knows his/her RAD and take what ever measures are likely to prevent as much damage, particularly hand damage, before it’s too late. I only wish I’d been referred to one earlier, I have hyperextention in my hands and now wear splints on 5 of my fingers, all the time. Prevention is always better than cure.
    I think your questions about whether to stick with the Humira or try another med are best discussed with the new doctor, everyone is different in their responses to meds & with Kim’s lung issues I’m sure that is something that will have to be taken into consideration.
    It is also my firm belief that RAD does indeed affect the neck and spine and I hope that Kim’s new rheumy will have a good understanding of this element and will be able to discuss what happens next in regard to that.
    I’m currently at a point in time where my RAD appears to be progressing and a med shuffle is on the cards for later this month when I see my rheumy so I do feel for Kim while she is in this interim period of feeling out the next move. I wish you both luck and will follow this blog to see how you get on. Best wishes and good luck. Gilly.

  21. Lisa

    When I read this I just kept thinking if I’d had that doctor, where would I be today? Rather than try to answer your questions, I’ll give you a run down of my treatment through diagnosis and why a different doctor can mean so much. When I mention my ‘Doc’, it is my rheumatologist.
    Diagnosed in April 2010 and started on mtx oral 10mg. My doc had already given me a prednisone taper a week after my first consult even though all my blood work was not back. She kept my appointments with her at no more than 3 weeks apart, and rapidly increased the mtx to 20mg. By June, even though my crp and sed had come down a little she started pre auth for Humira which I started at the very beginning of July.

    Humira gave me my first low disease activity period although I still had several ongoing issues which my doc addressed rapidly and efficiently. She was still seeing me every 3 weeks. In January of 2011 I had an increase in disease activity and although I had little swelling and my sed and crp were normal she increased the Humira to weekly and changed the mtx to an injection. This knocked the RA down until June of 2011 when I switched to Enbrel. When I switched I had little to no swelling and normal sed and crp. My Doc listened when I told her that my RA was getting worse.

    Enbrel gave me my first remission. I was able to come off prednisone completely. In October of 2011 I had a little bit of disease activity and my doc added sulfasalazine to the mix. I went back in remission and in late 2011 I took an mtx holiday for a few months. I was now seeing my doc every 6 weeks. In February of 2012 I was getting a little disease activity and my doc had me run some labs and put me back on the mtx. All this time I’ve had normal sed and crp. I went back in remission. In September of 2012 I again had low disease activity which slowly worsened. My doc and I decided together to up the mtx to 25mg and give it a few more weeks, but although my sed and crp were well within normal limits I knew that the Enbrel was losing it’s fizz. My doc switched me to Actemra and I had my first infusion on December 6th. My RA is again calming down.

    I had been working as an accountant for a trucking company that I previously drove for when I was diagnosed. In June of 2010 I was completely disabled and could not dress or use the toilet without assistance from my husband.
    In February of 2012 I decided to go back to the job I loved as a long haul trucker. Many people told me in 2010 that my driving days were over. Since then I’ve kept the wheels rolling, and as I run mostly the northwest I often have to chain up my semi truck. My doc has treated my RA aggressively, trusted me- as I trust her- to know when my disease activity is increasing and to knock it back down fast with a treatment change.

    I wish every patient could have this kind of doc/patient relationship. It is truly priceless. Please do not stop trying to find your perfect doc. I know that if my doc moved a thousand miles away I would still fly out to see her. Feel free to email me. Good luck.

  22. Jenn

    Should she stop taking the MTX? If it were me, I just may because it doesn’t sound like it is helping and the lung involvement. It sounds like a whole new med is needed (no humira, no mtx). Is that what you guys are thinking? The patient usually knows.

    If she does stop taking it what affect will that likely have on her lung disease that is caused by her RAD? (We are waiting to hear back from her pulmonologist before she stops taking it.) Based on what I know MTX can affect lung disease if you have rheumatoid lung disease. CT scan would be helpful. Even an xray may be helpful.

    Should we be looking at another TNF inhibitor or another biologic since she has had two infections on the Humira? I would if it were me.

    Since Humira and MTX work best taken together, why stop the MTX and not the Humira? ?? I would stop both and request something new. Obviously the humira helps based on what you said, but maybe something else would be a better fit.

    Any suggestions on how to further approach discussing back pain and neck pain with a rheumatologist? Get a new one! BTDT and doing it again, or trying. A good rheumie is rare.

    Kim’s constant tendon cramping in her feet and hands and the numbness in her toes, RAD or something else? Tendons are affected by RD. It is very possibly connected and I don’t think you can find out for sure.

    New med, new doc. I am so sorry! I hope you find a better doc who will listen to you. (Hope I do too and all the other patients currently searching).

  23. Gina W.

    i wish you the best. It is so hard getting people and family and doctors to understand.

  24. Purewishing

    Everyone’s journey with RA and Fibro is different, so it is difficult for anyone to say what will help Kim the best. I agree with those who have recommended you see a new rheumatologist. I have been to 3 so far in my 9 years of being diagnosed with positive Ra factor, and still haven’t found the right fit. Due to my faith beliefs, and conscientious beliefs, Mtx and most of the biologics are not an option for me. (Mtx is an abortive, biologics are made with human and mouse dna.) Since that is what most rheumatologists are trained in, none of them are much help for me. I have found the most help in keeping a food/pain diary and avoiding: nightshades (potatoes, tomatoes, eggplant and peppers), cashews, all processed foods, and meats. I have found great help with organic foods, fruits like cherries and blueberries, greens like romaine lettuces, spring mix and arugula and cilantro, raw dairy from an Amish farm used as a meal replacement with spices like ceylon cinnamon, ginger, tumeric, celtic sea salt, nutmeg, allspice and cloves. I am a home educating mom, and part time dog groomer, with chickens in our backyard, which help me keep active. I have not been in remission (no pain) ever in the past 9 years. However, I have had times of lower pain and more productivity, mostly due to eating well. I did do over the counter NSaids for the first 2 years, and sulfasalazine for about 2 years after that, both of which tore up my gut. Now in recovery from OTC and prescription drugs and not going back. I have had to scale back my part time grooming business, which has been difficult financially for my family, but clients have been understanding and I am searching for an income direction in which I hope the Lord will lead me. I will be praying for Kim and for your family.

  25. Leslie

    I’m so sorry that Kim is having such a rough time and that your rheumy is so unhelpful. All TNFs have a high risk of infection but they are not all equal. I understand that some of the biologics have lower rates of infection, Onecia I think. I watched an online CME course comparing biologics in a treat to target course that gave relative risks and there were two that were much lower, but with her lung involvement this might not be the right choice since I seem to recall that this caused increased lung problems in patients with existing lung disease. You need a doctor who will listen to your concerns and work with you to find a treatment plan that works. And a doctor who won’t dismiss Kim’s symptoms or minimize them. I started Humira in Sept. and have had bronchitis twice having to stop the Humira both times. I don’t know how this will work for me either. It’s not an easy road, take care.

  26. NotDrFeelGood

    Sorry your wife is having so many problems, Eric. I have had RA for over 6 years and at first could not even get up a flight of stairs. After trying conventional therapies for 2 years I tried antibiotic protocol and diet changes (no gluten, lots of probiotic foods). It took about a year, but now most of the time I don’t even know I have RA. While this approach might not be for everybody, it doesn’t hurt to try a few lifestyle changes to see if they improve things when the doctors can’t. Doctors mean well but they are not magicians, and they don’t have enough resources to devote a lot of time to each individual patient. Sometimes we just have to try different things until we figure out what works for us. I hope you two find something soon. No one deserves to suffer like that.

  27. Catharine

    As an RA patient I can tell you that you CAN use Humira without MTX. I’ve been using it alone off an on for a while now and while I still have some symptoms they are dramatically less than when I was first diagnosed. I, thankfully, have not had the side effects that others have had. A new rheumatologist is the place to start as yours does not sound like someone who has a grasp on the real disease process. Ask around and find out who in your area has the most success stories among patients. That is how I have found my last two doctors. My doctor is very thorough and he not only asks about swelling but checks for pain. He checks my breathing and has done occasional x-rays to see what my body is doing. I can tell you that what’s going on in her feet is most likely RA related. My issues were first discovered in my feet and I have a condition in my ankle joint that is only found in RA patients. It effects the area around it including the tendons. Her feet would be something I would talk to a new doctor about first because the problems in her feet can lead to a very serious and expensive surgery if they are not treated right. Eric, I have to say that I am impressed with you. I am a single person managing my own illness. One of the reasons I am single is because I’ve seen my daily struggles with RA as a lot for a partner to handle. Kim is a very lucky woman to have you on her side. I wish both of you good luck in trying to get her issues resolved.

  28. Mary

    Hi there. Eric and Kim it is lovely to see the support you offer one another and I so appreciate you sharing your story. I just got home from my family doctor in tears because of the report he received from my Rheumatologist. I was diagnosed in March 2012. I am RF and CCP positive with erosions of both hand and feet joints evident on ultrasound. I moved to a country with socialized medicine from the USA. Here, the rheumatology community seems to be “old school”. The thinking is that if ESR and CRP are not elevated than the RA isn’t active and any symptoms are assigned to a “generalized pain disorder”. I had to fight hard to get a neck xray which shows significant disk degeneration since the last xray. My GP is referring me for an MRI and to a neurosurgeon. The reason I’m telling you all this is because WE have to believe what we KNOW !!! I agree with all the posts who say to get another rheumatologist as soon as you can. The only way we’re going to change the landscape of rheumatology is to no longer put up with “old school” erroneous medical information. There is ample research that supports all we are saying here about no conspicuous swelling but the disease continuing to progress. As far as your questions about MTX and Humira, I really think you need to get a rheumatologist to answer that question. I have a lot of respect for how you two are approaching Kim’s health care. Please keep us informed of how she manages. As for me, I am likely going to go back to the US and spend about $10,000 with the rheumatologist who first diagnosed me. My GP wants me to find the name of a local rheumatologist he can refer me to but wait-lists are very long. A good rheumatologist is worth their weight in gold. God bless : )

  29. Cathy

    As with everyone, I am so sorry about all you are going through. I read about you and Kim on RA Warrior and had to read all of your blog.

    I was on MTX for 3 months and had to go off it because I couldn’t handle the side effects. My RA doc did warn me that some people can develope lung problems with MTX. I reacted terribly to it, but when I developed a dry cough, that was it. My doc took me off it.

    I know that some RA docs prefer to use a couple of drugs in tandem with each other and some docs don’t.

    My husband and I recently had a second opinion from a new RA doc and he had some definite different opinions from my RA doc that I have been seeing for 7 years. I think I will probably change my care to him. He seemed to be more up to date on treatments and just because I wasn’t flared up the day I saw him he believed every word I was telling him about my symptoms, pain, etc…. He was very careful in the examination to not hurt me and I felt he had a better plan for trying to get the RA under control. I also had started feeling like my original doctor (which I really like her personally) had become almost stagnant with my case.

    I’m glad that you are getting a second opinion. One of the blogs on RA Warrior talked about finding the right RA doc. It was very informative and helped me to research the Ruemetologists in my area. So if you don’t like the second opinion doc, keep looking.

    My heart is with you both.

  30. Denise Price

    Hello. I arrived at your blog via the link from RA Warrior. I have Ankylosing Spondylitis, which is in the same disease family as RA (treatments are similar too). I am so sorry that your wife is going through this. I’m surprised that the doctor would want to take Kim off methotrexate but not replace it with a different DMARD. If MTX isn’t working, why not try to find something that might work better? (Personally, I’ve had good results with Sulfasalazine, but everybody is different.) I’m also surprised that the doctor did not offer any other options–maybe add an NSAID or, if appropriate, do a short course of prednisone. Whether Kim decides to continue with Humira or try a different biologic, these additional steps could perhaps reduce some of the pain that she is enduring at the moment. I’m glad that you are looking for a new rheumatologist. It sounds like the old one is not helpful at all.

    • Denise,

      Thanks for taking the time to comment. I’m familiar with Ankylosing Spondylitis. I’m very sorry you are suffering as well. One of the things that pushed us towards a new rheumatologist was the fact that he said directly to us that he didn’t know what to do. We knew what the next steps or options should have been and they were the very steps you mentioned in your comment. Thanks again for stopping by. Blessings.

  31. Pingback: Don’t Give Up | Reality Check | Rheumatoid Arthritis Warrior

  32. Tony

    I am curious how things are now. This is 3 years old. I was diagnosed 2 years ago and have been through Humira and have been using enbrel for about 2 months. The pain seem to be getting worse week by week. Where are you now in your treatments?t

    • Hi Tony,
      Sorry about the delay in replying. As you can see, I don’t blog anymore. Life is too busy to write. Where are things now three years later? Goodness. Kim has had the following meds fail her; Humira, Enbrel, Orencia, Methotrexate, Plaquenal, plus several meds for her fibro and her pain control (And I’m sure I’m forgetting a few). She was on Rituxan for about 2 years and did see significant relief from that, but that failed her at the beginning of 2016 as well. She is currently about 10 weeks in on Actemra and has seen no sign of relief. She added another autoimmune disease a year ago, Sjogren’s Syndrome, so that was cool. 😉 Her 4 autoimmune diseases have combined to make it that she cannot work anymore. The reality is that she barely gets out of bed at all. I know this is totally a downer of a reply, but it’s where we are at currently. Hoping things will get better this year. Thanks!

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