Rheumatoid Arthritis Rheumors: 2 Mysteries Solved

I thought it was brilliant the other day when a commenter called RA “the ghost disease.” It’s true that many RA myths persist and that researchers don’t yet know exactly how Rheumatoid Arthritis works. Which joints can be affected? Is there a nutritional cure that we are overlooking?  

Confusion about RA is perpetuated in plenty of ways.

  • Commercials that make treatments look like cures.
  • The silliness of saying that RA is merely a type of arthritis that somehow “occasionally” manages to affect other parts of the body.
  • The ridiculous practice of some laboratories calling the Rheumatoid factor “The RA Test.”
  • Thousands of webpages claiming RA is easily alleviated through nutrition.

One thing is certain: Studying and listening to patients who live with RA is one key to solving mysteries about RA.

1) The Remicade weight gain mystery

Patients have sometimes wondered aloud whether Remicade treatments contribute to weight gain, especially since RA disease activity tends toward weight loss. This spring, a study on infliximab (Remicade) “showed that anti-tumor necrosis factor-alpha (anti-TNF-α) infliximab therapy is associated with an increase of body fat mass in early rheumatoid arthritis (RA) independently of changes in disease activity and levels of leptin and adiponectin.” The patients who had been claiming “Remicade made me gain weight” had been correct all along.

The report seems to imply that other TNF- α blockers (like Enbrel, Humira or Simponi) could have similar effects. Apparently, TNF- α blockers influence production of a hormone called ghrelin, the level of which has been implicated in Rheumatoid cachexia (wasting due to disease activity) and obesity.

2) The methotrexate joint ache mystery

Sun over the barnPatients have suspected that methotrexate causes a temporary increase in joint pain. You can find this question appearing in forums over many years if you search it with Google. Since I haven’t experienced this side effect, I wondered whether it was psychosomatic. (That’s not an insult; I have nausea before I do my shot every week or whenever I smell rubbing alcohol. Hat-tip to Pavlov.)

According to page 2 of this methotrexate information sheet from the Australian Rheumatology Association, methotrexate can cause temporary increase in pain in muscles and joints. But, I didn’t hear it there first! I realized it was a recognized side effect when rheumatologist Dr. Akerkar commented here that he had come to believe in the methotrexate pain side effect specifically because so many of his patients had told him of it.

That’s the way it should work. The doctor pays attention to what his patients experience and learns from it, becoming an even better doctor, and even better able to help patients.

Patients hold clues about what causes different treatment responses or different disease courses. Patient experiences will be vital to organizing all the different types of evidence about RA. Paradox has been the byword for Rheumatoid Arthritis for a long time. Basic RA information is often unknown. We heard a cardiologist who now researches RA say that he hadn’t even known that RA affects the heart until he was brought into RA research just two years ago…

But someday I bet we’ll even know why some patients are better in hot or cold weather. That’s not a rheumor, is it?

More coming soon on RA news:

More about Orencia in a subcutaneous injectable version.

Another study showing no increased cancer risk from Biologics.

Recommended reading

Kelly Young

Kelly Young is an advocate providing ways for patients to be better informed and have a greater voice in their healthcare. She is the president of the Rheumatoid Patient Foundation. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. Through her writing, speaking, and use of social media, she is building a more accurate awareness of Rheumatoid disease aka Rheumatoid Arthritis (RA) geared toward the public and medical community; creating ways to empower patients to advocate for improved diagnosis and treatment; and bringing recognition and visibility to the Rheumatoid patient journey. In 2009, Kelly created Rheumatoid Arthritis Warrior, a comprehensive website about RA of about 950 pages and writes periodically for other newsletters and websites. Kelly served on the Mayo Clinic Center for Social Media Advisory Board. There are over 42,000 connections of her highly interactive Facebook Fan page. She created the hashtag: #rheum. Kelly is the mother of five, a home-schooler, Bible teacher, NASA enthusiast, and NFL fan. You can also connect with Kelly by on Twitter or YouTube, or LinkedIn. She has lived over nine years with unrelenting Rheumatoid disease. See also http://www.rawarrior.com/kelly-young-press/

32 thoughts on “Rheumatoid Arthritis Rheumors: 2 Mysteries Solved

  • August 10, 2011 at 8:59 am
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    hi Kelly
    I’m a volunteer on the http://nras.healthunlocked.com part of NRAS our UK national rheumatoid arthritis society
    I had your epage on medications just now and have copied and pasted it to our members site, Kelly I’ve been struggling along with hundreds of others in the UK, blaming steroids as the main culprit of our obesity, and then see Humira posted as well, I’m a Humira girl and inject weekly as it does not cover the pain and swelling on a fortnightly basis. The presciption has been changed and Health care at Home who deliver on Abbots the manufacturer of Humira behalf have reduced my dose to fortnightly and my joints know it, swollen, and very painful so maybe obesity is a sideffect to keep. But obesity has crippled my back and i’m suffering for that.
    Thanks Kelly for sharing your site with RA’ers all over the world
    Tricia-P

    Reply
  • August 10, 2011 at 9:40 am
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    How I love this blog!! Been steadily gaining weight these last 6 years since being on Humera and what ever research I came up with said that weight gain was not a side effect of that med. I tried everything, even did weight watchers for 8 months and lost nothing!!! How does that happen?

    Feeing very validated and encouraged. Truth truly brings a sense of freedom doesn’t it?

    BTW used to run 4 miles a day before this all started. In a very short span of time from onset I couldn’t ever walk around block. Never got that running thing back but I can walk about 2 miles now. I am thankful.

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    • October 16, 2013 at 12:38 pm
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      I can relate to exactly what you said. I was at my goal weight on weight watchers before my symptoms started. I was a runner/biker/spinner/zumbaer (made up words!) but you get the idea. I went from running to not being able to walk down stairs and gained a ton of weight, and a struggle to lose it since. I started walking a few miles a week, but the exhaustion keeps catching up to me. So now I’m just winging it day by day but would love to be considered a ‘runner’ again! Thanks for sharing.

      Reply
  • August 10, 2011 at 9:56 am
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    I was on Enbrel, it didn’t really do much, and continued to lose weight. I’ve been on Humira, which has lowered my pain levels, and have gained 10 lbs since January! I still have pain, my knees are pretty painful, so walking for exercise is limited. Ten pounds is a lot on my small frame and I eat very healthily. I literally just googled “Humira weight gain” a couple days ago!
    As for the mtx, I totally experienced that!! I was only on it briefly, but experienced a significant increase in my pain level. My rheumy just looked at my funny when I asked if that was normal. After a couple weeks I started having chest pain and sob. Took a mtx break and tried it a month later. Same thing. Yet, my rheum(whom I actually do like and does seem to have his head on straight) and one I went to for a 2nd opinion both feel it wasn’t the mtx that caused it. Whatevs, I’m not taking it again, I don’t particularly care for the “I’m going to die” feeling.

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    • August 10, 2011 at 10:01 am
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      Megan, there are joints in the chest and I get that feeling of chest pain too. If it is the mtx joint pain side effect, it is temporary – usually a day or so. If you do have it again, on the drug or not, I hope you can get it identified – is it lungs or joints or something else? No one wants to feel like that!

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      • August 10, 2011 at 10:27 am
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        The pain and sob of breath took quite a while to subside. I would say it took 2 weeks after stopping the mtx for the pain to be completely gone and several weeks after that for my breath to fully return. I would be totally winded after walking up one flight of stairs. My chest x-ray was totally normal. 2nd opinon doc thought maybe pericarditis that just coincidentally appeared at the same time that I took the mtx. Maybe.
        The funny thing is that I *want* to take mtx. I know that it bumps up the effects of biologics. I want to feel better. Heck, this was a year ago and I still think maybe I should try it again. (Maybe I will when I don’t have a 5,3, and 2 year old to care for.) But, the docs seemed to secretly think that I was trying to get out of taking it or something. Frustrating!

        Reply
  • August 10, 2011 at 9:59 am
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    Excellent post, Kelly! I sometimes wonder if it’s all in my head– and then I read your posts and know that it’s not.

    I happen to have a version of RA that is titled “palindromic,” which means that is sometimes shows up unilaterally and roams around at will. So I have a paradoxical ghost of disease that haunts different places of my body without warning or easily visible effects. Until I wrote that sentence just now, I wondered why the pain causes me increased anxiety, but it all makes sense now: I don’t know when anything will hurt, where, how much, or for how long. And the general public, thanks to the lucky few like Phil Mickelson, thinks that I can be cured with a shot, diet, or lifestyle choice. Aargh!

    Thanks again for reminding us that we are all sane and in this together! 🙂

    Reply
  • August 10, 2011 at 10:13 am
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    I have been on Enbrel for 9 years now and have not gained any weight at all. However the methotrexate pain effect is one I know well. It is a temporary increase in pain immediately after I take it. It only happens sometimes now and I’ve been taking it for ten years. It happened more when I first started Methotrexate. It feels like the pain increase that sometimes happens after a joint injection. It is quite normal to have it happen after a joint injection, they warn me about it every time but it only happens sometimes. I figure it is short term pain for long term gain and I’m okay with that.

    Reply
  • August 10, 2011 at 10:30 am
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    WOW. I had not heard about MTX causing muscle and joint pain. I wonder if that’s why I never seem to have relief? Why my #rheum thinks I have more fibromyalgia pain than I do? And here I only thought I had hair loss and fatigue as a side effect.

    Reply
  • August 10, 2011 at 10:58 am
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    I have a question. I have RA, have had it for about 6 years. I have been on Methotrexate,Humira,Remicade,Orencia,Arava,Enbrel. Right now I am on Enbrel & Arava. It worked for a few months but now back to major pain. My Rheumy wants me to do Enbrel twice a week, and has added Cymbalta for pain. Seems like ALOT of med to me. Has anyone out there taken this mix of med? I am frustrated and am not sure of the next step. Dr. suggested Simpony or Rituxin if this doesn’t work. Thanks, Teresa

    Reply
  • August 10, 2011 at 11:52 am
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    Went to my new Rheum dr on Monday. Still can’t talk about it without crying, what is up with that??? He seems very nice, smiles while he listens to me. I start to cry, am totally appalled with that! A friend said it is normal and will level off with time. Acceptance, I guess?? Anyway I have come to the realization that they really don’t want to hear about symptoms. I do lab an hour before I see him, he looks at results and decides on treatment from that. He did tell me I am not controlled at this time. I am aware of that without his lab tests!

    Since I have been off MTX I have had very little nausea or heartburn. But that leaves me with no drug to combat RA just Pred. for swelling. I can not go on injections because I only take 20mg. So it is back to oral MTX for one more try. All I got from it before was nausea, no pain relief that I could tell. Oh well, at least I’ll lose a little of the steroid weight. Maybe that is why the tears, much frustration lately…

    Thank God for this blog. I hate that others have to suffer too, but it helps to know you are not the only one and that we are not crazy.

    Reply
  • August 11, 2011 at 8:43 am
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    Before I started on Enbrel, my weight had been cascading lower, sometimes a pound or two a day despite eating four and five meals a day. While I haven’t gained weight on Enbrel, two days after I took my first injection, the cascading weight loss stopped. I’m one of those whose injections lose their effectiveness about 2/3 of the way through the week. I now notice that I gain a pound or two in the first half of the week and lose it back in the second half of the week, about the time the Enbrel begins to lose its effectiveness. In addition to the obvious signs that the injection is losing its effectiveness, I’m ravenous every couple of hours. I had some side effects with methotrexate, so Plaquenil has been added to the Enbrel. I’m one of those people who hates taking any medication and I hate this regime, but I’m sitting hunched over my keyboard after creeping into my office from my bed, so I’ll try it.

    Reply
  • August 11, 2011 at 1:14 pm
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    Interesting. I started on Enbrel and never gained weight, I think I lost a few pounds. Then I switched to Humira, and was also on and off a low dose 5mg of prednisone at the time. I gained 10 lbs rapidly. I have been off Humira now for 3-4 months as it did nothing, and taking 5 mg of pred daily, and haven’t gained anymore weight. Was it the Humira or the pred?

    Reply
      • August 19, 2011 at 3:01 am
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        Or could it be the chocolate my husband thinks I need stocked in the pantry at all times? jk
        I think it was the combo, and I forgot to add, I was also on lexapro for a few months during this time.

        Reply
  • August 15, 2011 at 4:24 pm
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    Wow, this is finally an answer to my question of why I have been gaining weight but I’m hardly eating, even having the flu for a week doesn’t help losing weight. I have put on over 100lbs in the last 10 years during which I managed to lose 50 but gained it all back. Now that I look back on that time, it was when I was inbetween Remicade and Orencia. Granted, it was still hard to do and took me almost a year and a half to do it because I had to drastically increase my prednisone to compensate for not having the Remicade or Orencia. I went on the Orencia and I put it all back on. If I could do anything else for it, I’d do it in a heartbeat. Thank you so much Kelly!!! I know I’ve said it before, but I will say it again, you are a better resource for me in my journey than sometimes my dr is. I cherish my ability to access this website and Facebook to see your blog and get a neighborhood of people who understand me.

    Reply
  • August 16, 2011 at 9:38 pm
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    Wow. Finally, an answer. After being an average / thin person my whole life, I started struggling with weight gain 10 yrs ago after starting on my first anti-TNF med (Enbrel). At one point I was in remission for 3 yrs from one of the meds, and was VERY active, and could barely take any weight off.

    I eat so much less than I ever have before, and still the weight creeps on. Suddenly I’m on the side of people Dr’s telling me to lose weight, etc, whenever I have a bodily complaint.

    Reply
  • August 18, 2011 at 11:51 am
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    Hi Kelly, This is a great post on RA. We agree that listening to patients is the paramount way to gain a greater understanding of the disease. Have you heard about Good Days from Chronic Disease Fund? We are an organization dedicated to assist chronic disease patients. By supporting our organization, you can help us, help them. http://www.gooddaysfromcdf.org/ We are all about giving our patients good days again : )

    Reply
  • October 16, 2013 at 10:14 am
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    I found it interesting that you also develop nausea before getting your methotrexate shot and at the mere scent of rubbing alcohol! I am not longer on Methotrexate but am taking Arava instead, but I still have an adverse reaction to just smelling rubbing alcohol! It’s an interesting thing, and it’s not just Pavlov’s dogs!!

    Reply
    • October 16, 2013 at 11:44 am
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      yes! any time I smell alcohol, I feel sick to my stomach..
      In my sons’ psychology class they did a Pavlov’s experiment recently with noise & it was very effective. Amazing how things work.

      Reply
  • October 16, 2013 at 11:29 am
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    Kelly, I was wondering why so many doctors are so set on giving us as patients, some of the most toxic meds to the body. My metabolism seems to have stalled and with my treatment my hormones seem to have started going crazy. Is it just my age (45), or is it maybe a side-effect of my medicine. None of this started until I started the methotrexate. I have even gone so far as to try phentermine, will very little success (8 lbs in one month). My doctor won’t even discuss the possibility of changing my meds because the methotrexate is working. I don’t like it, I would like to try one of the new biologics that do not suppress the immune system. Help!!!!

    Reply
    • October 16, 2013 at 11:54 am
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      Hi Jenn, it’s up to you. But if I had controlled disease that most of us don’t achieve for very long, I’d not risk changing that. There’s no guarantee another med would work as well.
      I understand how the metabolism must bug you (I’ve had thyroid dz since I was a kid), and your docs need to help you with this. Have you had a complete thyroid panel? That’s the most common reason for a woman age 45 to struggle with metabolism. Perhaps your RD or meds set off something with other hormones (thyroid or other) that needs to be back in balance. Another possibility, with the RD more controlled by the mtx, it might be uncovering another issue that was already there. Good luck.

      Reply
  • October 16, 2013 at 12:21 pm
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    Kelly, I do not beleive the Hot/Cold thing is a myth any more than humidity is a myth. My rheumatologist knik named me the human baramotor. I can give you about a 4 hour warning of rain. (I live in Indiana) I’m more accurate than our local weather people about the amount of humidity in the air and I hate hot weather. I would much rather it be cold than hot, but not snowy or rainy. So cold and dry and I’m VERY Spry. Wet or Hot and I am not.
    Thanks
    Kelly (Indiana’s Dr. Seuss)

    Reply
  • October 16, 2013 at 2:44 pm
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    As of late I can’t seem to get motivated to do things and very tired. I go to work in my barber shop everyday. It’s possible I have a bone marrow problem along with my RA and it may be multiple myeloma. Has anyone else experienced this problem? I am waiting on results of blood tests. Thanks for any info! Richard

    Reply
  • October 16, 2013 at 5:57 pm
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    So I’m not crazy! I DEFINITELY noticed increased joint pain after taking MTX; it only lasts a day or so, and doesn’t happen every time I take it. I asked my Dr. about it, and he couldn’t explain it.

    For the record, I’m also noticing temporary increased joint pain after I take Orencia…it’s pretty immediate, and only lasts about 24 hours, and then I feel much better.

    Teresa Ahl – I was on cymbalta –with MTX and Humira– Cymbalta is technically an anti-depressant, but has pain relieving properties for a while. It definitely increased my mood, but didn’t touch the pain, so I stopped taking it.

    Reply
  • October 16, 2013 at 7:15 pm
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    I found it kind of funny that you experience nausea before your Methotrexate injection…I thought I was the only one who did that. Ironically, I have bed a RN for 30 yrs and the smell of an alcohol swab never bothered me, but now I procrastinate to the last minute to do my injection on Sundays and I just cringe at the smell.

    Reply
    • October 16, 2013 at 7:19 pm
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      I’m not a nurse but I had a strong “stomach” before this – it took quite a while (years) before it just overwhelmed me. Hang in there. Try different kinds of candy to blog the smell. Also rubbing the alcohol while holding your breath and then running out of the bathroom to get fresh air. Isn’t that a fun picture.

      Reply
  • September 18, 2015 at 10:30 pm
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    Wow. I have noticed the increased pain the day after MTX and so I searched online and found this article. I really thought I was crazy. What a pain (no pun intended!) and also, I have gained and am very slowly loosing while on Humira. I feel so much better knowing the Humira is causing this and not that I am just eating too much (when I don’t believe I am). Sanity is a good thing… Thanks for posting this and creating such an active blog where so many can report in these similarities and know we aren’t alone!

    Reply
  • February 18, 2016 at 12:45 pm
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    I’ve been on 25mg methotrexate injections (weekly) for 5 weeks now. I can’t believe how much pain I have had since beginning this medication. My jaw hurts, toes, fingers, hip, knee, foot, shoulder, elbow, etc and pounding headaches, diarrhea, sharp gas pains, night sweats etc. I haven’t experienced the pain relief this drug promised to deliver, and my joints are visibly swollen now. I’d rather discontinue the drug and deal with occasional flare-ups then feel like one continuous flare-up for 5 weeks. Not psychosomatic in my case. I sure hope others get relief with Methotrexate; its just not the drug for me.

    Reply
  • October 3, 2017 at 7:29 am
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    Hi. I am on 25mg mtx injection weekly and leucovorin once weekly, plus folic acid twice daily . I go next week.. oct 9, 2017 to see dr again, which med may or may not be chg’d. We will see. Anyway. For the first few months, there wasn’t much chg. In things.. which IS to be expected… but then inflammation started to get a little better, though pain wasn’t still there in some areas.. not all. What I DO KNOW FOR SURE…. is this. For those who are pamphlet reading, Google hunting junkies… the more you read about EVERY side effect.. which by the way, MOST NEVER HAPPEN, that is why there is a rare, more likely, less likely, most common…. more you read, the more you will psych yourself out… and you will have psychosomatic symptoms .. not real ones. And yes, that is a true thing. What u need to do, is just trust that when u decide to go on this… you made a wise choice… I hope u didn’t go into this blindly.. and secondly, you have a good dr. And take med as directed… let it do its job and over time… ALL MEDS TAKE TIME IN SYSTEM TO WORK EFFIECENTLY. So be patient… there is no magic switch to turn things on or off.. your body didn’t just go bad over night… it won’t feel better overnight either.

    I’ve been on for about five months now. All the tiredness has just about gone away.. fogginess left, most inflammation gone except for a few really really bad areas… .. I have a lot of my joints in body affected, so having just a few left is ok for now. Hair loss has slowed since she upped the leucovorin, and the nausea under control w that too. I feel pretty good as of now. Back to as normal I think as I can get,

    dont give up. It does work, patience in everything that is worth time and effort

    Reply

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