I have Sjogrens with possible vasculitis no biopsies yet. I have been taking golimumab for a few weeks now and feel very concerned about it.
I have some kind of lung inflammation which they are keeping an eye on. I am waiting for biopsy of skin rash photo attached and lowering steroids too. I am in agony walking . Have sent messages to vasculitis nurse but no reply yet.
It feels like burning surges and wide spread pain. Severe all day long every day.
Can you have inflammation and bloods be just over normal markers. I am anca positive. Steroids 13 mg a day for months and golimumab (which I do not think is working). I am worried it’s a type of vasculitis and getting worse. I have adrenal insufficiency too. Even the slightest task can make my hands tremor. My body is very weak.
Don’t feel listened to and gp I feel has given up on me.
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friz42
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Looks like purpura, I have the blood spots over my arms cause I believe from steroids. I also have thin skin which can cause bleeding particularly on my legs. Luckily neither are painful and the purpura goes away in a couple of weeks.
Thanks for your reply. Yes they could be. I know steroids can cause thin skin etc. They did used to come and go but have now set in for 2 or 3 months now. I am worried by breathlessness, lung inflammation and the fact I can hardly walk because of joint pain. I forgot to say had bowel perforation (reason unknown) . Anyway thanks once again.
Hi, sounds a lot like I was before I was diagnosed with EGPA, especially the foot pain and breathlessness. Dreadful pain walking and the general pain and fatigue were overwhelming. I’m so sorry to hear you’re not listened to, sadly I had the same and was fobbed off with saying I had ‘chicken pox’, which I’d had before, and that it was ‘atypical asthma’ and ‘mainly psychological’. GPs in my practice hadn’t even heard of vasculitis, I discovered later.
It was months before I ended up in hospital and finally got treatment, but it could have been started so much sooner and prevented damage. I wish I’d pushed and complained more when I wasn’t listened to. I suggest you phone the Vasculitis Helpline for advice on how (who in your area) to push for better understanding and care. Lots of good luck with it all
Hi Friz42, the sores aside I had an experience last year, it’s all about “mabs” I had my normal Rituximab infusion at the end of May and at the end of June tested positive for Covid. I was given Monoclonal Antibody treatment for the Covid in the form of Sotrovimab, I can tell you now 2 days after the infusion, body pains in my upper and lower abdomen started (Sunday) and by Monday evening I was screaming with pain,I couldn’t even lay down it was so bad. After 3 days of hell it subsided. I told my consultant and she said, could have been the Covid but different “mabs” can do that. Nick
Thank you for your reply. That sounds pretty awful. I am at a point where I am going to try and get another opinion. It’s all a dreadful nightmare with bits of hell thrown in. Hope you are feeling better now.
It’s a swine Friz, fortunately my issues were over after a few days of hell, my adrenal gland too was quite dysfunctional so I though right it’s time to get out and do something when I just didn’t feel like it. Easier for some and not others I know. Take care. Nick.
I going to 'Take The Bull By The Horns' and suggest that you contact Professor David Jane's Team, at Addenbrooke's Hospital- Cambridge. He Is the Leading Expert, on ALL 'Things' Auto- Immune, in this Country..... he is also a 'Very Kind & Understanding' Man. I don't know if you will Need a GP Referral, or if you can Contact him yourself- surely worth Trying.
Yes I Do 'think' this is Pupara (I'm fairly certain that is the right spelling?) or, some other Vascular 'problem'. You, most Definitely, Should NOT be in this much Pain friz- probably Easier Said Than Done but.... can you change your Doctor? Might be Worth a Try, at least.
Finally can I assure you, as have many 'others', on here, that you are In Our Thoughts friz, please Feel Free to contact ANY of us again. Sending our Very Best Wishes
Hello GPs work very hard but vasculitis is a very rare disease. Call the UK vasculitis ☎️ helpline and ask them where is your closest vasculitis centre. The fact that you are ANCA positive means you almost definitely have vasculitis and need appropriate treatment. The pain might be due to nerve damage etc which will need treatment asap. Hope this helps.
Thank you for your reply. I have phoned the help line and have in the past been seen at Addenbrookes in the vasculitis clinic. However more symptoms have appeared including lung inflammation. I have sent messages to Stella in vasculitis clinic but not sure she is receiving them.
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HSP is ruining my life!!
