A new members question,on Urticarial Vasculi... - Vasculitis UK

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A new members question,on Urticarial Vasculitis.

i am a new member to health unlocked, vasculitis uk, and i would like to ask members a question, as i wonder if there is anyone else who has had a similar history to me. I have had Urticarial Vasculitis for around 20 years. ( nothing really serious) but recently i have had really bad flare ups ( 8 attacks in the last 7 months ) I would like to ask , has anyone else also got any other conditions ie: an Under Active Thyroid,Arthritis, ( i have had 1 total hip replacement )psoriasis,moderate hearing loss, due i,m told to my vasculitis.As Vasculitis is inflamation of the blood vessels , i wonder, as Arthritis is inflamation could there be a connection ,.I take citerizine daily which in the past has controlled the vasculitis, now i am taking Prednisolone for 5 days at the flare as i don,t want to take them for to long , so as not to have side effects.So far it seems to check the flare but there seems to be only approx 4 weeks between each flare. I do hope i,m not booring anyone , but i tend to think things through and i do feel somewhere there must be some common denomenater, and by "speaking" to other people with the condition we all might learn something. Thank you.

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A relative of mine has UV and arthritus. She has had many flare ups in the past 12 months since diagnosis.

She is on steriods and slowly reducing but it seems if she comes off too quickly she gets another flare up.

She has been in hospitals more than out for 12 months. She has no veins left.

She has had several inffections. She also has bowel issues. She is on strong pain medication.

She has been through so much. All this with 3 kids! Hope that helps.

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thankyou for your reply, i,m so sorry that your relative is having such a bad time it seems we all get varying symptoms, it doesn,t seem to effect us all quite the same way . I think these sights do give us an insight into how the condition varies from one person to another ,and at least we may learn from other sufferers how we might be able to get some relief.My best wishes to your relative.

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Hi. Welcome to the site. I have had UV for many years, but finally got a UV diagnosis 13 years ago after moving to the South Coast and therefore changing NHS Trusts. I was previously being treated for arthritis, various allergies and unspecified stomach and bowel complaints. After eventual diagnosis it was explained that my many painful flare-ups were actually arthralgia caused by the Vasculitis and now I can trace virtually all my other symptoms to the UV. Prednisolone and Azathioprine eventually got the symptoms under control and apart from when I push myself too far physically my flare-ups are mostly very well managed. Personally I think you would be better keeping to a regular lower dose of Prednisolone rather than taking them as and when. I am right down to 1mg daily now, but every time I stop them altogether the flare-ups start again. I am assured that this low does is in no way likely to cause me any long-term problems and in fact after my last DEXA scan I have managed to get off all the osteoporosis medication. There is hope for you, just take the drugs you are offered, the alternative is far worse, even for UV sufferers who at least drew the long straw when it comes to Vasculitis. However, it can still be extremely painful and debilitating so good luck, keep learning and keep strong. The more you know about it the better you will manage your symptoms.

Hope that hasnt put you to sleep

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thankyou for your reply , i must say it made better reading ( at least more hopefull ) than the previous answer, i expect we are all different and will get different symptoms , my main concern regarding the Prednisolone is any side effects that may materialise from taking them ie: you clear up one thing and get another equally as bad, I also wonder ,do you find taking the Prednisolone makes you put on weight, i gained 3 stone before i was diagnosed with an under active thyroid ,as you perhaps know ,your metabalism doesnt work very well with it,and i,m not a big eater ,so it is a concern to me. What is Azathioprine ,is it another steroid . Do you still take both? how long did it take to get the UV under control?, although i,ve had UV for around 20 years it,s only been in the last 8months ( 8months after having my hip replacement ) that i,ve had these cotinuous flares, At what point did you have your medication reduced and do you find you have any adverse effects from taking them daily even though it is a low dose, I do take Citerizine daily and have done for many years and until this episode i have found that they have controlled the UV. Sorry to bombard you with questions but i don,t know anything about how this is going, at the moment

I am seeing a Rhuematologist at my local hospital ,and the steroids do seem to be checking it ,but it still returns, is this how it happened with you to start with?

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Hi Jack sorry not to get back to you before. I was started on 30mg Prednisalone for a couple of years gradually reducing very, very slowly after about a year on that dose. After a couple of years though the flare ups were coming back too frequently so I was also prescribed Azathioprine which is a heavy Immunosuppressant which should not be taken without caution. However it enabled the steroids to be reduced eventually after a couple more years to 1mg per day but I just cannot get off them altogether without pain. I have bi-monthly blood tests to check up on the ESR, and red/white cells as Aza can have an adverse effect on them. I already had a problem with my bone marrow function but the medics keep a very close eye on the tests and so far all is well. As I said before my dexa scans have been so positive I have been taken off the Bisphophonates altogether now (Osteoporosis medication). My rheumatologist has been excellent and I can visit them anytime I have problems, by-passing my GP if necessary, I have their phone number. Other than that I have no noticeable side-effects from the drugs except weight gain which is just as likely caused by my huge appetite, but then the medics tell me its the steroids which give me the appetite :( Its a trade-off I guess, if you dont pig-out you wont get fat! Its not a foregone conclusion. I have tried reducing the Aza with a certain amount of success, but its a balance between not liking to take the drugs but liking the pain even less. It has now been 13 years and I am relatively pain free for 75% of the time and I keep away from people with heavy colds and infections, I lead an active life and would advise you to take what is offered but not without question and certainly not without making sure the medics keep a very close eye on your symptoms and your bloods. Best of luck Jack, we can lead a full and active life with UV so long as we do so carefully. PM me if you have any more questions ?

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I don'tknow much about 'UV' but yes rhumatiod Arthritis is often associated with vasculitis, it is in my case. Sorry i'm not much 'help' to you but hope all goes well for you.

best wishes AndrewT

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Hi there. I was diagnosed with urticarial Vasculitis 3 years ago, followed soon after by lupus, Sjogren's and coeliac disease, together with lots of migraines. I found that antihistamine treatment (4 different ones all at once) didn't control the UV and my rheumatologist put me on hydroxychloriquine sulphate. It's an anti-malarial drug which also works well in lupus, Sjogren's and UV. As it can take a long time to work I was put on steroids which I slowly came off over 19 months. I put on weight on steroids but I've lost that weight again - it was worth it as I'm well now. Recently my rheumatologist tried reducing my hydroxychloriquine and my UV flared. I've increased it again and the flare is settling.

Most rheumatologists won't put you on steroids unless they think it's necessary, and even then they have you on the lowest dose possible for the shortest time possible. They weren't sure if I'd be able to get off steroids but I had no problems. I might have to go on them again in future and whilst I hope I don't, I have to trust my rheumatologist who has looked after me well up until now.

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Hi Jack, Urticarial vasculitis is one of those half-way diseases that might be Lupus, or cryoglobulinemia or Sjógrens's syndrome. Most urticaria is not associated with systemic vasculitis. It sounds as though the type that you have could be hypocomplementemic urticarial vasculitis (HUV).

If you have had urticarial vasculitis for 20 years as a mild disease and it's recently become worse, it might be that the disease has changed and probably your rheumatologist should re-assess you case. Prednisolone is great for masking problems, but most of the time it does not cure them.

John

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thankyou for your reply, and for your understanding answer,you have explained more to me in your reply than i have received from all the Drs and Consultants i,ve seen ,and i have seen many in the last 8months, none of the 6 Gps at my surgery have ever seen it, and the Dermatologist at my local hospital didn,t seem to know a lot about it although they knew of it. I was quickly passed on to a Rheumatologist ,who i,m pleased to say did know more about it, I,ve had blood tests, throat swabs, chest Xray,MRI scan CT scan ,I,ve seen a Consultant in E N T who also knew of it and said that my hearing loss would be due to the vasculitis but otherwise as with other members every test shows normal, and i know that things aren,t normal.The Prednisolone does seem to check the flare after 24hrs, however even without the Prednisolone the flare seems to settle after 48hrs My rash is pretty extensive for 2 days along with the feeling of being extremely ill, i have a temperature of 39.5 and i have really bad shakes for up to 2hrs. then it quietens down and i,m left with the bruised appearance for around a month,and then of it goes again.Ihad a biopsy that confirmed the Urticarial Vasculitis ( twice, 20yrs apart )but no other name has been put to it, and of course when i,m well i,ts as if nothing is wrong with me at all, Do you know of any other treatment other than Prednisolone that may be suitable for U V. i did have Dapsone many years ago but i wasn,t able to tolerate that and it altered my white blood count. Many thanks once again.

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Hi Jack,

Just to follow up on John's comments and as an HUV sufferer myself, it might be worth asking your Rheumatologist if he's checked your blood complement levels. A reduction in C1q complement levels can be an indication of HUV.

Other symptoms include; urticarial and vasculitic rashes, bloodshot eyes and breathlessness. Since it's a systemic form of vasculitis it can also affect the lungs, kidneys and heart although these may not show any symptoms initially.

Whilst HUV is extremely rare I wouldn't think it could do any harm to have your Rheumatologist consider it and rule it out, as early diagnosis (as with all the systemic forms of vasculitis) is always a good idea.

Regards,

Richard.

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