I was diagnosed with RA in 2009 and have been taking Methotrexate the whole time. I had an appointment with my Rheumatologist on Tuesday and he now thinks what I actually have is Palindromic arthritis and that I don’t need to be taking MTX. He has suggested that I try to manage it with painkillers when required and if needed he can prescribe hydroxychloroquine.
Has anyone else been in the same situation and have you managed to cope without medication.
I am feeling a little anxious about the whole situation at the moment.
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A234
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What's important is what do you think? Do you think you have full blown RA, that is well controlled with mtx? or do you think palindromic RA is possible? YOU are the expert and rheumies get it wrong sometimes. They only get a short period with you. Did you ask why the rheumie feels its palendromic rather than RA? What did they say?
What is your disease like? Do you only rarely have flares that competely disappear? Do you have joint damage? What is the pain like? How often would you need pain killers, if you were to manage it with pain killers. Do you take pain killers now, and what kind? Nsaids or opioids?
If you're having no problems with Mtx, and you've been taking it for years, its very possible you do have RA and its well controlled. Stopping mtx could bring it roaring back. ON the other hand, if you are taking mtx when you don't need to, well, obviously you'd be best off stopping it. Tell us more about your disease, and what your life is like. Or just go through these qustions and see if what the rheum said rings true...of if they maybe made a snap judgement.
Over the past 15yrs I’ve had very few flares , they come on suddenly and then disappear completely after 24/36hrs (managed with just Ibuprofen) so yes I guess it could be palindromic due to the nature of the flares and this is what the rheumy has based his suggestion on. I guess what is worrying me is , what if it was the MTX keeping everything well controlled and is it all going to come roaring back without it. I have been advised to contact the rheumy team if I feel things are changing and I’m not coping so I will wait and see.
I have more Pal flares than classic RA , my Rheumatologist treated it as one disease as I have the antibodies so same medication, they added Filigotnib 2 years ago which really helped with flares.
I was diagnosed with Palindromic Rheumatism 2.5 years ago. Eventually prescribed Sulfasalazine but bouts of flare-ups started reducing from the average of about 1 every 3 weeks so didn't start the medication. Now I've been symptom free for about a year. Seem to be different views on whether there is still damage being done. I rarely think about it as I have other ongoing health issues, latest of which is a large sliding hiatus hernia.....
I have had a similar experience in that I was taken all all medication - and told that it had 'burnt out' as I had not had a flare for a couple of years. I then had several flares, not severe, but sufficient to require steroids over the next few years, while the rheumatologist said that I was just setting down to being off medication... I moved areas. Then I developed first Polymyalgia Rheumatica and a few months later absolutely classic Rheumatoid Arthritis - the GP said, looking at my hands 'You've got RA!' and phoned the rheumatologist while I was there. I'm now back on regular medication and a biologic.
I did feel cross, as I needed to have quite a lot of steroids and perhaps it could have been avoided if I had stayed on the medication. And particularly that the rheumatologist would not reconsider her decision when I continued to have flares after coming off the medication. Knowing what I do now, I would have been better to get a second opinion.
I had what I now know were minor flares within a few weeks after coming off hydroxychloroquine, so in retrospect it should have been obvious, but having taken a decision the rheumatologist was not willing to reconsider - this may partially have been a personality clash too if I'm honest as she found me difficult to deal with - I do tend to say 'why' a lot, and I do try to be tactful but I know I'm not. But I get on fine with the present rheumy who thinks I'm hilarious and says he likes seeing me!
Hi, all I can offer is I was on top dose Metho by injection for longer than remember, I had really bad year with blistering cellulitis for 9 months, nearly lost my leg, and became allergic to penicillin and all other anti b's, left my metho off for months during it all, then returned to using it an was so.ill,gave it up. I would rather suffer the pain, mine was for Lupus and RA x
This is such a tough question. I have Behcets and Relapsing Polychondritis. They cross over with RA issues. I was on the top amount of MTX where the FDA allows for off label use. With in a few months, it wrecked my liver. It only took a few symptons away. I was miserable with hair loss and pain never really stopped. I am allergic to any meds that are blood thinners (advil/aleve). I also am allergic to narcotics. When I am in pain, there is no where to turn but to steroids. I have gone through many episodes where steroids helped short term. In the end, the amount required to manage both disease was high dose steroids. This, however, left me wide awake for days. I would go literally go crazy. Once we worked through all of these issues with my rheumatologist, we had a enough evidence to work on a biologic. I am currently on Humira. It gave me life back. I can't even explain how much it changed my life. I had free samples through the end of 2024. I am battling insurance to stay on a biologic. I am also terrified they will make me go through steroids and mtx all over again. I am on my last month and do not want any of my issues to return. The thought of it makes me cry. I should also say that my rheumatologist is amazing. He sees me for about 40-50 mins every month. This is certainly not normal, but we are kind of like teammates. He has a genuine concern for all of his patients. I feel very lucky to have him. There is a point that he will leave the country and retire. I hope I can maintain this level of care.....but I doubt that is possible. Hang in there. As some one else said, you must feel comfortable with the treatment plan.
Just the biologic. It does things MTX doesn't do. I feel blessed. MTX was wrecking my liver enzymes. I get tiny, short lived break outbreaks. Some times I just deal with the pain or some times I use a prednisone pack (20 mgs for 3 days, 10mgs for 3 days, 5mgs for 3 days). I almost lost a full head of hair on MTX as well.
I've always ad Pal along with RA.52 yeara.I was on remicade 10years that kept it under control till I had to go off it . I've been on asada for several years now.it helps but occasionally I will have terrible unbearable flare.Pain meds DO NOT HELP!.That pain is uncontrollable
Are your flares more Pal or RA related and how often do they happen? With me it’s usually every 4 or 5 weeks and almost always in my shoulder’s. I do agree, the pain is unbearable but thankfully only lasts a day or 2.
Hi. I was diagnosed in 2020 with palindromic RA and put on hydroxychloroquine. Was working fine until last August, constant inflammation since. I am now waiting to be put on methotrexate. I would ask why they want to change you. 🤷🏻♀️ x
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