I have recently been suffering with severe joint pain, in particular in the knees/ ankles to the extent that I've been immobile & struggled getting up from a sitted position.
In fact currently my right arm/ shoulder are so painful that I've taken to painkillers & hot water bottles as I'm allergic to Ibuphofren. My Vasculitis was diagnosed 3 years ago & I've recently further reduced my Prednisolone to 2mg per day - In fact I hadn't experienced any undue problems whilst in remission.
The joint pain which has spread across various parts of my body was such that I contacted my Consultant who saw me immediately as he felt the symptoms suggested a possible re-attack of the Vascilitis although he recently re-assured me that blood/ urine tests didn't indicate this to be the case & to visit my GP should my pain persist as he felt they were unrelated.
Whilst the situation did improve it has now returned to my legs which are angry & swollen however I am now noticing a underlying rash with red spots appearing & wondered whether anyone else had experienced this.
I'm seeing my Consultant again in 2 weeks & may have to visit my GP as the condition/ pain is getting me down.
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Lauriescott1
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Hi I'm sorry to say but this really does look like a flare. I personally would contact your consultant tomorrow as he needs to see you straight away before things get any worse. What drugs are you on except the Pred?? Xx
Thanks I tend to agree and find it difficult not to believe my problems are linked to my Vasculitis seeing how the joint pain spreads - Today for example my knees have improved by the pain is now in my arms/ shoulders.
In a bit of a condery mindful of what my Consultant has said but seeing him again shortly so probably going to have to put up with it or visit my GP to get some stronger painkillers as suggested.
Currently on Azathioprine, Ramipril, Anlodipine, Omeprazole, Allendronic acid & Calceos in addition to the Prednisolene
I would honestly ring your Consultant tomorrow as I've left it too late in the past and list partial hearing in both ears. WG is horrible just like the rest and very unpredictable. Azathioprine is a good drug but it's not one of the stronger ones so you can flare on it as I have in the past. You may need Chemo to give the WG a gud kick or you may just need to change your maintanance drug but defo ring your Consultant and let us know how you get on xxx
A lot of people have symptoms reoccurring when they reduse preds. Some have to take a small dose for all their lives. Are you on any immunosuppressants? And you redused to 2mg from ???
I really hope it improves, my first symptoms when I got diagnosed were joint pain and swelling plus a rash. I couldn't walk without help....
Thanks I'm on Azathioprine together with a combination of other tablets - The Prednisolone has been reduced steadily after initial diagnosis 3 years ago - Was initially on 50mgs a day.
Today my knees have improved but at a cost as my arms/ shoulders are aching so will continue with 24hr painkillers & visit GP if symptoms persist as getting my down - Luckily I have a further Clinic appointment on 22nd which hasn't far off now.
I started with 60 and I take 7mg a day now...reducing 0.5 mg every 4-6 weeks. On aza as well. Hope tomorrow is a better day! Contact your doctor if it continues!
Do you have a specialist nurse you can talk too at the hospital you are seen. You don't say what other medication you are taking to keep the WG under control. it could be your WG is not under control , blood tests alone are only an indicator and the patient's symptoms plus how they are feeling have to be taken into consideration to measure if the vasculitis is active. you can call the helpline or write to John or Lynn they will help with some advice. Just follow this link for details vasculitis.org.uk/helpline
Just a couple of notes to take into consideration when you see your doctor.
It could be you are reducing the prednisolone to fast and need to reduce much more slowly. It can vary from person to person.
Azathioprine is probably one of the least powerful of the immunosuppressant's , it did not control John's WG at all, although he does work for so many. John was changed to MMF, then he was able to reduce the prednisolone. It took 18 months for John to get from 10mg to zero , he has been steroid free for 4 years now.
I am in the same boat. Those pics look like they are me. Except I have polyarteritis. And in my case my blood dont have any indicators like wg and all the other anca vasculitis. I'm currently on 45 mg pred and it seems to be helping. I hope you get better soon cause i know how it is.
I have had such severe joint and bone pain for over 20 years. I was put through many injections of cortisone into my spine and hips, knees etc. I was diagnosed with IBD ( Crohn's) in 07 and started on high dose prednisolone and the pain disappeared but, to my disappointment, when I cut the steroids the pain reappeared. I am now on azathioprine and keep taking the prednisolone at 10 mg as that seems to be the amount I can get to and still function. I still hurt and have a slow release morphine tablet that I take daily. I am reconciled to the pain and stiffness. It's awful but I don't seem to be able to get away from this. For the example, cutting the grass will leave me so very stiff and fatigued. I am ex Royal Marines so am not a quitter by nature. This vasculitis is a very cruel disease. The best help I got, on the pain, was from getting referred to a pain clinic.
I know the vasculitis can be in a remissive state, for me, though I am never able to be rid of the joint pain. I doubt you will want to hear this but hopefully you will get to a place where you manage the pain better. I now don't give myself such an hard time and it's the little victories that count. Cutting the grass, vacuuming etc these are things most take for granted but they become a big thing when in such pain.
second that. Try having a newborn to carry while limping around. Thank god my hands and arms aren't hurting. I hear you and I've only had to deal with this for the last two years. I gots a long way to go. But I know I will persevere. Thanks for the reply for some reason it s nice to know we are all in the same fight. And one day we will all win.
lifes a beach! Enjoy the sand. I know that's where I'm going this summer lol. And ya cutting grass isn't as bad as framing a house. Lol but I know how you feel. After work im a hobbit with hot packs and ice packs galore on the couch with feet up. Now im screwed. Just got outta the hospital after two days of no sleep and even though im on 1000mg cellcept and 45 mg of pred im getting bad inflammation in all my joints.
Hi sorry to hear about your pain. It does sound like a flare.Did you have joint pain when you were first diagnosed as they say it can start up again with the same symptoms. Good luck.
Hi, I empathise with you!! I too have joint pain but not as severe as yours sounds. I have HSP, which did involve joint pain and swelling at its onset, but this pain is different and no swelling. It's come on stronger as I've reduced the pred. I was on 40mg mostly then reduced down by 5 mg per month, going through 20mg my joint pain started and my psoriasis also kicked in. P now under control with humira and HSP with azathiaprin (150mg). I'm now pred free after reducing from 5 to 0 by 1mg a month, been off for a month. Spoke to my GP and he suggested it could be pred, could be bone/muscle condition possibly p related but my HSP is in remission. Be interested in how you get along, but in sure you're like me and not wanting to increase pred again?!! Good luck.
need help. I'm in pain again. My wrists ankles knees and feet are all hurting with visible red patches not much inflammation but more like a bone pain or muscle? But the help I need is with meds? I am trying to lower the pred from fifty for awhile now. The docs I've seen tell me to lower 5mg per week and if my body acts up then go back up 5 mg. I've tried but I'm at 50 mg today. Only made it to 40mg and like today in major pain. I'm also taking cellcept for the last three weeks and am now at 1000mg per day working to get 2000mg per day. Does this all sound right??? They told me they want me to be at lower dose of pred and be on the cell cept but how long before should one see results from the cell cept.
Just seem my Consultant today who advises that the blood test awaited namely the Anca one has indicated a flare in my Vasculitis as it has gone from negative to positive.
Furthermore it appears that I could have a urinary infection also culminating in a course of antibiotics & sadly an increase in my Prednisolene from 2mg - 40mgs - I thought I had done well to have reduced the dose although if it alleviates the joint pains I of the opinion of well so be it
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