I have recently switched medications from Azathioprine to Mycophenolate Mofetil, which I take along side colchicine, and have now slowly weaned myself off of prednisolone. I also have long covid, and have had another recent (Aug 2024) covid infection, from which I've continued to have even more symptoms.
Over these last few months, as I've reduced the prednisolone, I've been getting more flares, and on most days I'm experiencing awful muscle & joint pains & stiffness in several joints, especially when sleeping or following inactivity (which has increased with the fatigue).
I've spoken to my rheumatologists about this a few times, but they've not increased the Mycophenolate (stating that it's no good for joints anyway), and of course don't recommend my going back on the prednisolone, having been on and off of it since 2018. They did however arrange an MRI scan to look at my foot/ankle, and advised that there was no sign on inflammation, so this pain was unexplained & just needed to be treated with pain management. I was surprised by this, but I don't know if I'm wrong to be?
I've had these same problems in the past, and had been told that the joint symptoms do not always show anything on imaging as it's not destructive to the joints - is this wrong?
What have other people's experience been with joint symptoms, and does it show up on imaging like MRI?
Any input would be much appreciated, tia x
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I think mycophenolate is used for RA, so I would have thought it should help arthritis pain. It could be you have arthralgia and not inflammation. I have taken mycophenolate 2 gram a day a few years ago when I was taken off azathioprine as I developed GCA whilst on it and I think it helped my joints. I have Behcet's and sero negative RA, so now I have a biologic, and I have sulfasalazine which helps joint pain. Ask your Dr if you can have something else added not necessarily steroids . Hope this helps.
I have asked about adding something else in. For now my rheumatologists have simply increased the colchicine to 3 times a day. Don't this for a week now, but have had no change yet.
I've found the BC to be very reluctant to change any medications, and basically kept me on a subliminally therapeutic dose (for my symptoms) of Azathioprine for the sake of the side effects because they kept telling me there was no other options for me. Eventually a my haematologist urged them to stop it because of bone marrow changes, and they finally listened... just took them 5 years 🫣 I've now been on 1g (500mg BD) for a year now, but I was taking prednisolone, and stopping so slowly (by 1mg on 1 day per week), because I was getting massive flares with each reduction when it was 1mg/day per week. Now that I've completely stopped it at the start of December, I'm getting this joint stiffness & pain every morning. Rheum have now said that they don't feel I should be more immunosuppressed than this (even though I have been in the past), and that mycophenolate won't help anyway, and to try the new dose of colchicine for a month & they'll see how it goes... and then they sent a letter to say my joints pains are unexplained, so I need to manage with pain relief... I'm just so tired of it 😢
Can I ask, which BC are you seeing? Azathioprine did not stop the joint pain in my case, but I am on a lower dose because it over suppressed my WBC at the standard dose. Did you have the joint pain initially, then it resolved with the Azathioprine, then came back when you changed? If so, the fact that the Aza and prednisolone where able to control the joint pain strongly suggests this is inflammatory/immune system related.
What your rheumy is saying is in line with the advice I have been given. Once the Aza/Myco has suppressed the immune system sufficiently, there is no benefit in taking more. Both my Rheumy and my Opthamologist (both are immune system disease specialists) suggested using a biologic medication to help bring the joint pain under control. The BC disagreed - their position is that if my CRP is normal, the joint pain is not inflammatory and a biologic medication will not help. In my case the BC suggested the joint pain was due to fibromyalgia. Personally, I seriously doubt this - the pain is very specific to the joints, it is not the same as fibromyalgia, which is much more generalised. In your case, I suspect they may think it is due to the long covid (I say this because the BC mentioned long covid as a possible cause of the joint pain in my clinical report, even though I do not have long covid).
The cynic in me suspects the biologics are a medication of last resort more because they are expensive than they are dangerous - the risks are different, but are they really any more dangerous than long term azathioprine?
MRIs of my problematic joints yield the same result as yours, nothing obvious other than the usual age related wear and tear. In my case I get pain in the tissues around the joints - they are tender and the joints are often dry and stiff. At other times (especially overnight and mornings) the joints really throb and ache like hell (really bad in my wrists and ankles, but other joints too). It's like blood flow is being restricted to these areas and then they ache when the blood flow returns (the pain is a lot like when I was a kid and went out playing snowballs, then came in and put my hands by a warm fire... Yes, it used to snow quite a lot in the 1970s :o)
If I am honest, I suspect one of the biologic medications may help in my case, but I don't know that and I have experts saying different things, so I can't be sure. In the end, the BCs have the last word if you want treatment on the NHS - only they can prescribe the biologic meds to Behcets patients.
I'd suggest asking your Rheumy their opinion about the use of biologics meds in your case - and find out what exactly are the risks. If they think it might help you and you think the risks are worth it, you might make your case to the BC when you next meet with them. If the BCs reason for not using a biologic medication is that you are too young, that's not really a reason - what's the point of being young, if you feel old and your life is miserable? If you explain to them just how debilitating the joint pain is and that your quality of life is significantly compromised, then the BC may be convinced that the associated risks of using a biologic medication are worth taking.
Good luck and hopefully you will make some progress soon :o)
Thank you for your reply. It brought a tear to my eyes, because I feel exactly the same as you. Like looking in a mirror. I'm 43 now, and can't have a life because of my symptoms, and Rheumatology have been urging for biologics since 2018 (diagnosis) because initially I was very well controlled on Azathioprine, but only at a higher the highest recommended dose of 150mg OD - this was too high for my body though, and was initially impacting my liver function test. Then at lower doses the side effects were no longer obvious, but the symptoms were bad - skin, ulcers, bowels (like inflammatory bowel), and joints. The BC clinic is Royal London. Initially they seemed to agree that all my symptoms were Behcet’s and professor fortune was very supportive. But then over the next few visits I got mixed messages, first a question mark over my diagnosis from other members of the BC, then a few years on professor fortune told me that by bowel symptoms aren't Behcet’s but must be stressed related (having learned I live a stressful life as a junior doctor, and difficult family), which felt like a punch in the gut having been completely symptoms free while I was on high dose Azathioprine. My Rheumatology team agreed to allow me to stay on high/medium dose steroids to allow me to manage my symptoms evough to qualify as a GP, but eventually I started having bone marrow changes from long term Azathioprine use, and only when the haematologists categorically told the BC team that I was not allowed to continue Azathioprine did they accept that I might need a different treatment (prior to that they told me that there was nothing else I could use, and I could not use biologics because of my age and it's a last resort). And 1 year ago I was changed to Mycophenolate, increased dose to 1 g per day in 2 divided doses, colchicine & prednisolone. I've slowly stopped the prednisolone now (really slowly to avoid the frequent flares), but since the prednisolone went below 5mg daily 7 days a week, by joints were a problem again. Now I might as well be 80 years old, as that's how I feel.
But I do think lots of the doctor's want to fob off my symptoms & blame something else. In long covid clinic they'll tell me it's the Behcet's, in Behcet’s Clinic they'll tell me it's stress or long covid, in Rheumatology they'll flip depending on the doctor I see now. I'm just so tired of it all. And I'm so tempted to take the steroids again for some symptom relief.
Also, my CRP never really changed, it was always my ESR that would go up and down. And in fact, it would raise significantly when my bowels were flaring. Professor Fortune at BC told me that inflammatory markers never really went up with Behcet's, and that this was unusual. Now nobody checks the ESR anyway. I'm surprised that my advice about inflammatory markers has been so different to what they've told you though... but who knows, maybe they'll tell me something different when I next see them 😕
I was initially diagnosed with Crohn's in my late 20's, this was when I was on azathioprine. I then in 1999 developed sero negative RA as well, my azathioprine was increased at this time to 4mgs / kg or 200 in my case. This was reduced in time back to 150. I changed Rheumatologists a couple of times until 2015 when I am now on the same local one. This is when I started having problems with neutropenia so when I developed the GCA I was switched to mycophenolate. I also started with scc's which had to be removed. I was then diagnosed with Behcet's at Aintree , started Rituximab initially along with the pred 5mg dose I'd been on for years and colchicine 3x daily, 4 if flaring. Then covid , and I stopped Rituximab and started Ustekinumab 3 monthly. I was restricted in biologics due the skin cancers, and trying to lessen the risks but still treating the symptoms. I've been on this for 4 years now and have recently seen Prof Moots who has no intention of changing meds in the near future. This combination seems to be successful as I too have bowel problems which is why I had the Crohn's diagnosis. I''ve been told it's severe IBS and many people with Behcet's seem to have it. By the way my ESR and CRP never elevate even when really ill such as pneumonia etc. I hope you are sorted out and if you need Biologics you get them as I thought that's the point of the CoE's having the authority.
Thank you. It sounds like you've had a really rough time of it. I'm glad your current meds are helpful.
For me, the Behcet’s Clinic's advice has basically been "everything will probably settle by itself when you go into your menopause" and they prefer a very light touch approach to treatment.
When I spoke with the clinical psychologist, he was as surprised as I was about all the different advice & opinions (and also the change of opinions), and told me frankly that he didn't think I needed to focus on the psychological elements the way the clinic was advising, but needed to focus on getting the right treatment & my career, which was obviously very important to me - unlike the Behcet’s Clinic doctors, that were recommending ill health retirement & live a less stressful life.
I was in my late 50's when diagnosed but had already gone through a surgical menopause at 36 ,due to severe endometriosis . My symptoms started in my 20's so have been going on a long time so I don't agree with my illness disappearing at menopause as that' s when I was finally diagnosed. It amazes me the number of times I hear people saying that it would burn out in older age because mine certainly hasn't , and I think many people say the same. I hope you are sorted and can enjoy the career you have worked so hard for.
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