Hi I'm still new to vasculitis DX 3 months ago at dermatology NHS after persistent skin rash mainly upper body,scalp,face groin area.
Original I was started on Doxycycline ànd steroid ointment which worked but kept coming back . Then 10 course of oral steroids and antihistamines which again worked but is now back again 3 weeks after last dose of steroids (10) days course. And they now want me to start another 10 Day course. In both antibiotics and steroids they have nearly cleared me but not 100% so I'm asking is this normal and is it safe to be taking steroids 3 weeks after my last dose finished? My dose is 6 tablets a day for 10 days. I would appreciate any advice and help
Jason
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cartwheels
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Perfectly safe - on the PMRGCAuk forum we are all on it for years! Two lots of 10 days with a few weeks between them is unlikely to cause any adrenal problems but you might if you needed a 10 day course every month or so for a long period.
Honestly, doctors don't go out of their way to do dangerous things with medications and if you need the antiinflammatory effect of the steroids, you need them.
Thanks for reply will look up the forum as well always good to have the knowledge of others . From what I have read ,some patients have a 10 day course followed by a low dose maintenance period to hopefully keep on top of things and then stop . This makes sense to me but at present I'm just going with what the doctors say . Maybe as im a new patient they experiment with a few doses and a antihistamine untill hopefully it clears completely
Please get a second opinion or even a third before keeping on taking steroids or immunosuppressants. May be you need all three tests plus a few others earlier than later
Yes a LOT of Medication but NOT, particularly unusual, in the First Few Months of diagnosis.- I know that I Speak for ALL, of us, when I say that 'Both Drugs And Dosage(es) Will Be Altered/ Changed Until The Correct Combination (for you) Is Found'.
It's always a bit of a Balancing Act, to find the right Levels Of Suppression- for you personally. What 'Works' for me, may Not be 'so effective' for you..... if that makes sense.
Everybody's Body is different internally, as well as externally, and- as such- YOUR 'Treatment Plan' is going to be unique to YOU. (yes the same, actual drugs, as everyone else BUT at different 'Dosages And Combinations.')
So Yes, much change, in a 'Very Short Period Of Time, and much to 'Think About' indeed! Above all please try NOT to Worry, daunting as all this, no doubt, seems.
I am alive, Over Twenty- Five Years, AFTER my diagnosis (1997) and nearly Ten Years after a Kidney Transplant (July 2013)- NOT that I am 'bragging', or anything like it, I only mention this to, try to, re-assure you Jason.
If you want, or need, to contact me- or indeed any of us- now, or in the future, then please do, my friend. You can do so here or, if you prefer, via a P(rivate) M(essage).
The steroids are a great short term solution. The only issue I had was it massively increased my appetite. I lost 7 kg pre -diagnosis and put it all back on in less than 2 months. I was glad when my consultant weaned me off them. I am slightly surprised you haven't had a course of immunosuppressants e.g. Rituximab.
Apart from that, the fitter you are, the better chance you have of fighting off any infections that come your way.
Well I'm not happy with the service I have got from the hospital. I have had two visits first to tell me I had vasculitis and put me on a Months antibiotics one a day and steroids which didn't really do much and I had a big flare,so he phoned me and put me on 10 day course 6 a day steroids and antihistamines which nearly cleared it . Had a chest x-ray and even tho I still had a few spots bumps on my face at our next meeting,he told me again I have vasculitis in his opinion caused from covid vaccine,but I'm fit and well and he doesn't need to see me again just take antihistamines at a outbreak and sent me on my way. Hence my confusion over something I have never had before. I have got my GP to request another appointment to challenge the DX as even she says it looks more like dermititis. For me this started with flu last November a week after my covid jab felt awful and came out in like a strep type rash all over incredibly itchy. couldn't get to see a doctor so prescribed 7 day antibiotics and steroid cream after a telephone appointment based on pictures I sent in . That nearly cleared it but not quite, so two weeks later I was back on the same treatment,and again nearly cleared but not quite then two weeks after that finally saw a go in person who put me back on antibiotics and requested my dermatology appointment. I have had no skin biopsy or urine test and the bloods they can look at as I have Cll which is checked every 3 months and that shows in still in remission and blood work ok . So feel lost with it all
Sadly it's a postcode lottery. I am classed as in remission for two years but I am still on rutiximab. Hopefully nearly at at the end. The majority of people on this forum have been on immunosuppressants for a good reason. Most GPs won't have seen it. Good luck.
Hi Cartwheels. All good Pal. Keep going, steroids are a wonder drug if you don’t take them for too long. I was taking 12 tablets (5mg) for 3 months then tapered then relapse, in total 18months. Still here, kept fit and low carb living did it for me. You’ll be fine. Take care. Nick.
Hi Cartwheels Keep an eye out for any other symptoms hot flushes, headaches, any eye problems in case of TA and I would be looking to get blood test results for ANCA vasculitis just in case it progresses to that. Don't be fobbed off like I was if any of these symptoms occur. You need rapid treatment if they occur. I had rashes like that that preceded a diagnosis of ANCA GPA. Steroids did wonders but finding a really good Rheumatologist is the answer. Best wishes Jim
Thanks Jim sort of reassuring that my rashes are similar to someone else ,did you get the face spots sort of acne looking and I have never had acne in my life I have always had good skin hence why I'm finding this so difficult. I want to learn as understanding the condition is the best way forward I found this with my leukemia which after 8 years had never worried me as I understand it and the treatment thanks to all who have replied it's so good to chat to others with greater knowledge and experience
morning cartwheels. I have a different vasculitis GPA so no idea if all rashes are the same - mine was larger spots that crusted over, on lower legs only. Don’t worry about taking steroids long term. You MUST get a skin biopsy of the rash - it was a dermatologist that walked into my room and took one look at the rash and k re straight away what disease I had and took a biopsy to confirm (after months of being ill ). Kitney function tests are also very necessary now - as you say this has been rumbling on for a while. Also what the medical profession do t tell you is the increase in your appetite from the steroids. Please TRY and eat, then leave two hours after you have eaten and distract yourself with doing something, and hopefully by then the hunger pangs will have subsided. It’s much harder to shift the weight after coming off them if you aren’t well and aren’t so active. Good luck.
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