Hi. I'm very interested in the fact that so many people with vasculitis get joint and muscle pain. I've read so many posts here on HealthUnlocked where people have gone on to run marathons after achieving remission.
I have been in remission now for a year or more but continue to suffer from joint and muscle pain to the degree where I sometimes find it hard to walk at all. I'm constantly told by every doctor/specialist that I've seen that my pain and joint problems are caused by Fibromyalgia, not vasculitis.
My argument is that my joint and muscle pain came along with all the other symptoms of vasculitis, constant nasal bleeding, night sweats, numbness, jaw problems, too weak to walk, extreme tiredness, etc. I just wondered if anyone else had been given a reason other than Fibromyalgia for their joint and muscle pain?
It seems to me that Rheumatologists are very good at sorting out the blood problems caused by vasculitis, but are totally clueless when it comes to all the other problems that come along with vasculitis.
I was physically carried into my appointment with the ENT specialist. My legs simply couldn't carry the weight of my ten-and-a-half stone body. My neck couldn't support the weight of my head, I, like the rest of my family, thought that I was going to die.
But thanks to 60mg of Prednisolone and our wonderful NHS I did survive and was diagnosed with GPA in 2019. I am now only taking 5mg Prednisolone and 150mg of Azathioprine daily but still suffer from weakness, tiredness, and really bad joint and muscle pain mostly in the back of my legs. I just wondered, does anyone else still suffer from any of the above after achieving remission?
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Willmebe
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I was diagnosed August 2020, most other symptoms gone but still get on and off rib pain and other joints occasionally hurt. When I manage to do a bit of exercise I then feel like I need to sleep so it makes timing exercise difficult during the day. I literally did 20 minutes on my exercise bike this afternoon and had to sleep immediately afterwards.
I'm convinced that there's more to vasculitis than the so-called experts are willing to admit. Vasculitis comes as a package with several different health problems.
Here are just a few..... Hearing problems / Jaw problems / Night sweats / Joint pain / Muscle pain / Numbness / Depression / Exhaustion / Fatigue / Tiredness / Anxiety / Nerve problems / Skin problems / Stomach problems / IBS / Mental confusion / Memory problems / Pain Pain and more Pain to mention just a few.
I have a suspicion that Vasculitis and MS are one of the same autoimmune disease family illnesses. I have no idea why the experts cannot see the similarities between the two. They are one of the same.
I too struggle with exercise. Although I force myself to exercise daily, I never get to the point where it gets easier or less painful. I am also exhausted afterward. The thing that makes me so mad is that the experts keep telling me that my problems are caused by Fibromyalgia.
Unless Fibromyalgia is another word for Vasculitis, then I refuse to agree.
Hope your problems get better and I wish you all the best for the future.
Thank you, I hope you improve too. I never used to sleep after exercise before vasculitis and it isn’t a particularly normal response to exercise so I’m pretty sure that’s what it is.
I also had pretty much everything in that list you noted and more. Vasculitis has affected almost everything.
☹️ it’s horrible isn’t it, I keep thinking it’s something else but my bloods come back ok and it just hits me anywhere on the ribs. I had Costochondritis frequently years before my vasculitis diagnosis so I’m assuming it’s that terror.
I have GPA vasculitis, Fibromyalgia and peripheral neuropathy (caused by Vasculitis).
Both vasculitis and fibromyalgia can cause joint pain, fatigue and brain fog.
My vasculitis is in full remission although I still have minor symptoms.
My fibromyalgia keeps flaring. I have been referred to the pain clinic, where they are trying very hard to help me change my lifestyle a bit and take more care of myself.
Pain in the rib areas and neck sometimes after about 8-16 weeks after Rituximab, I used to think it was my liver. Had it checked out and it’s fine, been told Rituximab sometimes mimics the original symptoms, I try and exercise but the effort isn’t doing it, it’s the effort to decide to do it with me.
I also get rib pain and have been worried it’s my liver but when I press down it’s definitely the ribs that are hurting, plus my bloods done show issues with LFTs.
I was diagnosed with GPA (severe kidney involvement and just a bit of nasal crusting) in December 2017.
I didn’t suffer from muscle or joint pain whilst on cyclophosphamide (although osteoarthritis had already started in one knee), plasmapheresis and high dose steroids but muscular myopathy became a big issue and I watched my muscles change shape and disappear by the day.
As my steroids reduced, the pain got worse in my joints but I only realised that retrospectively. My feet and knee are the worst.
I had one year of being able to walk fairly well despite the pain, but I believe shielding through Covid put an end to that in Spring 2020.. Being CEV, confined to the home for 6 months and more, then finally returning to work the following spring but stuck in a tiny office all day instead of waking up and down corridors did nothing to help.
My point therefore being that I’m in terrible pain now but believe much of it is to do with deconditioning. Yes, I could have exercised at home by walking up and down the stairs or doing some sort of fitness video but to be honest the whole covid thing was extremely invasive, time consuming and stressful. I had lovely friends and family ringing me all day long because they thought I’d be bored or lonely. Everybody was going through their own issues back then and I’m a people pleaser so answered their calls and consequently ended up doing my day’s work sitting uncomfortably in bed until the small hours.
I’m doing my best with Physio, swimming, trying to walk more and keep thinking I’m making improvements and then go backwards again. Both my rheumatologist and my kidney consultant say it’ll be the steroids but that’s as far as we get! I am on 150 mg of azathioprine and I’m due to start reducing my Pred from 5 mg to 4 mg daily very soon.
I feel your pain! I have similar issues after "achieving remission" with MPA.
My specialists are fabulous when it comes to the 'critical'concerns, in my case mostly lung related. However, I feel like all my other concerns are brushed-off/ignored to the point that I believe they just think I have a low pain threshold (not the case) or am just lazy/complaining/annoying. I keep being told symptoms are unrelated and/or that I am "deconditioned". If unrelated, then I need a proper diagnosis of what causes them (unlike what's seems to be a large percentage of the population,I have not been told fibromyalgia). I appreciate how busy/stretched they are, but feel that they are best place to at least make appropriate referals.
I was referred to physio for a short while, which I found absolutely useless. A few standard exercises which completely ignored my concerns...many of which "fell outside the remit of my referral". I really hate how NHS physio does not treat the body as I whole, and address related/referred pain, etc.
My GPs are useless. Completely wash their hands of my anything to do with my MPA, and blame anything they possibly can on the MPA, redirecting me to my specialists. Vicious cycle that leaves me stuck, in pain and deteriorating further.
Thank you for raising the point. Keen to see others' experiences.
I was diagnosed with EGPA in December 2020. At the point of diagnosis I could barely walk due to the joint pain in my knees and pins/needles/numbness in my right arm/hand legs/feet. I had the right knee drained followed by heavy doses of antibiotics/steroids before being discharged after two weeks to begin the Cyclo. I had by that time been transferred from the care of a Consultant rheumatologist to a renal Consultant at another hospital (under whose care I remain due to CKD). I struggled to walk on release from hospital and had limited use of my right hand. In January 2021 I also developed a DVT in my left leg. As with others I had ten Cyclo infusions with Prednisolone which reduced over time. The Cyclo was replaced with Azathioprine which I continue to take with 5mg Prednisolone and a host of other medications. I take pregabalin twice a day for the leg pains, the joints ache occasionally but nothing too serious. I have been in remission for a year, I walk unaided and I regained the full use of my right arm with peripheral neuropathy in my legs/feet and fingers on my right arm. Although I was told (and continue to be told) that the nerve damage may improve it hasn’t. I requested fresh nerve conduction tests which my consultant approved. These confirmed as I suspected, that the nerve damage in my legs/feet has got slightly worse even though I have no active Vasculitis. I have been referred to the neurologist but await the appointment. I have nothing but praise for the treatment I have received, but each are specialists in their own area and in my experience focus on that. I have all the issues others have referred to brain fog/fatigue etc, but I am doing exercise for mobility and also to try and lose weight. The numbness in my legs and feet is the worst part but it’s manageable, I am however reluctant to reduce the pregabalin as the leg pain was hard to bear. My advise would be to request additional tests and referrals to other specialists as necessary, accepting that I am lucky to have a very receptive Consultant.
Taken to AAU in wheelchair 2018 where I was eventually, after 6 months or so, diagnosed with Anca Vasculitis GPA. I had already been diagnosed with mild MS 2014.
Like you I am supposedly now in clinical remission but cannot get my legs to walk very far due to what I thought was hip pain. Asked for X-rays but the results are that my hips are good given my age (69).
I too feel that we are brushed off with “take painkillers when you know you’re going to exercise”. It doesn’t really work anyway. I haven’t yet like many of you had Fibromyalgia mentioned.
I am tapering steroids currently 3/3.5mg and 75mg Azathioprine and others usual to support that. Now having to come to the conclusion that its the steroids? I had hoped once I lowered it would improve my mobility. I have even got a blue badge !
My last consultant letter did say that despite the X-ray results I was understandably unhappy not knowing the cause of my discomfort. An understatement. I feel that this is probably it now as far as I can improve and it’s incredibly depressing.
I was hospitalised with PR3-ANCA December 2020. I have had 2 kidney biopsies and I am currently classed as in remission. I still get random joint pain which I was getting in months leading up to diagnosis. I had 2*cyclophosphamide and rituximab transfusions. I was taken of the prednisone after about 4 months (90mg max). I have a few more rituximab sessions since then. My sinuses are pretty screwed. I was pretty fit before, and I was told not to exercise for about 3 months after, though I did do sneaky dog walks.
I avoided large crowds but I did get on the bike again pretty quickly, managing approximately 5000km since. I also do a lot of calisthenics and stretching. I also try to eat mixed diet which includes a lot of fresh fruit, veg and fibre to naturally boost my immunity. I have recently been working on my weight cutting out breakfast on days I am not planning a very energetic day.
I found the exercise helped both a physical and mental health. I think basically you have to do what your body will let you. That for me means not prevaricating and being honest with myself. It means yes - I have crap days when the body says take a day off. I also have days when it is cold and raining, and the joints are creaking when I say "damn it" and go any way.
I want to thank everyone for their posts and to wish everyone the best of luck for the future. I really hope that we all find the answers that help us cope with this devastating disease.
Vasculitis has touched all of us and changed all of our lives forever, but life goes on, and we all have to make the best of our new lives now, so chin up, and let's all be the best that we can be. Love to all and stay safe.
HiI have GPA symptoms of which started late 2016 and I was diagnosed April 2018. For the last few years illness has been in remission or controlled with mycophenolate. Not sure which term is more accurate. My hearing loss has never improved. My only remaining symptoms are aches and pains and some fatigue following exercise. I tried running but back pain was really bad. Moved on to swimming which I enjoy and have reached level where I can swim about a mile three times a week but usually need a nap after. I get joint pain in my ankles after walks but generally quite mild. If I carry shopping from town wrists and hands ache but generally just mild. I do find swimming to be best exercise for me.
I used to suffer really badly with glue ear, almost to the point of being deaf. I then started using NeilMed Sinus Rinse twice a day. After a week or so my hearing started to come back. Here are the instructions.
Use a warm solution and squeeze the bottle quite hard in both nostrils. When the bottle is empty, keep squeezing the bottle to force air into your ears. The more air you can force into your ears the better, and the faster your hearing will improve.
After you've finished the process, stand in the bath and bend your head down to your knees. Squeeze both nostrils closed and blow until you hear your ears pop. Then release your nose grip and blow several times. A flow of the sinus solution should run out if you've done the procedure correctly.
You will definitely see an improvement within a week or so. Keep following the above instructions and you will get your hearing back.
I buy the NeilMed Sinus Rinse kit from eBay. It consists of a bottle and 60 sachets. Make sure the bottle is included in the sale as they sell the sachets separately. Once you have the bottle, you can just purchase the sachets the next time.
This has worked for me and a lot of other people that I have told. You have nothing to lose and everything to gain. If this helps you too, spread the word. Best of luck.
Thank you for your recommendation. At the very least I’ll end up with flushed out sinuses. Audiology doctor advised that GPA had damaged blood vessels/ nerves in ear which was the cause of hearing loss but as you say I have nothing to lose. Thanks again
I have Egpa diagnosed in 2010 was sent to a rheumatologist suffering mainly sinus problems and joint pain. Was told the joint pain was not related had a disagreement and decided to go to an immunologist who had treated others with my condition, he said it was. I take Norspan 10mg when needed, Ryaltris nasal spray and 6 mg Prednisone. Have found it is really important to try and be as active as I can and eat a balanced diet low in added sugar. Looking after mental health keeps stress low as possible as l find this exacerbates my condition. I find this is what works for me. I hope you can find relief there are professionals that know more than others.
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