I have had palpable purpura on and off since nov. ANA was positive in jan and turned negative in Feb. ANCA , CRP, urine test, LFTs and complete blood tests are all normal. Urine did test positive for blood with 5-10 RBC.Rash fades and then returns on my legs below the knees, in my feet and around my elbows.
I waxed my legs n arms after the rash stayed off for 2 weeks and it has appeared again . Nothing conclusive has been diagnosed yet and doctor suggested on my last appointment that the issue might have resolved itself.
Now my question is should i put it off on after effects of waxing or should i have it investigated further? How was HSP diagnosed for u?
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SarahAli
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I don't have HSP, but do have another type of vasculitis.
Most of the time - after initial aggressive treatment three years ago - the vasculitis is in remission. However when pupuric rash appear this is evidence that the vasculitis has 'woken up'. If the rash does not subside within a few days then I report it to my vasculitis consultant for consideration of renewed action to push the vasculitis back into remission.
My understanding is that the rash is only a symptom, so treating it directly with wax or anything else will achieve nothing.
Are you being treated by an experienced vasculitis consultant?
I havent been diagnosed because all my test results were normal.i have not taken any medication till now because dr said it was prob self limiting and has resolved on its own. Its confusing because i still get some spots on my feet amd around my ankles on days when i walk more than usual.
I waxed my legs and arms yesterday after 4 months and it caused a rash to appear again. Is it a cause of concern and further investigation or should i just ignore it ?
What activities can aggravate a vasculitis purpuric rash in general?
I have MPA. Started with the purpuric rash and my doctors kept saying not a problem. I was eventually diagnosed by a dermatologist who sent me to a vasculitis consultant who said it was vasculitis. I did not get a firm diagnosis until a skin biopsy. I believe you need to have the biopsy within 48 hours of the appearance of the rash so I went privately as the wait on NHS was several weeks so no good.
I don't know if a skin biopsy is necessary, but I do know that an experienced vasculitis consultant will need only one look to see if a rash is vasculitic. What type of vasculitis, and what damage it is or is not causing to vital organs is another matter, but he / she will know how to find out.
A GP is unlikely to have the necessary knowledge, because vasculitis is a rare disease and most will never have seen a case (or at least never KNOWINGLY seen one).
Beyond saying this, the questions in your second post are beyond my experience to be able to answer.
However I have found the following web pages which you may find helpful. Both can be taken as authoritative as one is official NHS, and the other (more detailed) is from Vasculitis UK and is by Prof. Alan Salama who I can personally vouch for as he is my consultant at the Royal Free in London. For me the key message is that early diagnosis is
important because " In adults delays in making the diagnosis mean that many have more advanced kidney disease when the diagnosis is finally made." (Salama) Personally I think the NHS advice rather downplays the need for urgent SPECIALIST investigation.
You may also find it helpful to phone the excellent volunteers on the Vasculitis UK Helpline - 0300 365 0075 -who "try to answer calls between 8am and 10pm, but we are a small team, and on occasions you may hit our messaging service. We check for messages several times per day and will get back to you as soon as we can." vasculitis.org.uk/helpline
I have hsp and it's taken 2years to diagnose.between having rash flares and other symptoms they had always resolved by the time a new appointment came available so it was rarely seen in action. I was having symptoms for about 4 years in total and a kidney biopsey in Jan 2018 has given an actual diagnosis. Don't ignore it but do log your symptoms. I have a lovely photo album on my phone which evidences the severity of the rash and helps me remember other symptoms such as joint pain leg swelling etc as well. I'm due to start steroids next week which will be the first targeted medicine and this is despite my rashes being the lowest ever. But my proteinuria levels have remained very high for over a year hence this treatment.
I have pictures too of when it looks alarmingly bright and flared. I dont have any other symptoms though atleast not yet. No swelling or pain in joints and all my tests and abdominal ultra sounds are in normal range.
Do u think it takes a while to appear in blood work?
The only off thing was a positive ANA
Titer 1:320 but it was negative a month later. So right now i keep getting the rashes on my legs and sometimes my arms but have no diagnosis. The gp said i might need a skin biopsy. Is it necessary to get the biopsy when there is a massive flare? Or can u get it when u have a few spots as compared to a flare.?
I have been to a few appointments already and still dont have a diagnosis or a reasonable explanation.
I have seen dermatologist and gp. Should i see a rheumatologist? Or should i wait for a flare to see him?
I feel wearing heels or tights (neither of which r very tight on my feet or legs) contributes to flares.can this be?
I definitely found that wearing heels and tights aggravated things. So I've stopped going to wedding s _ I called it my wedding allergy for the first few years! I have no idea what my blood work shows at all. Something I'm trying to rectify. I have been told my bloods have been screened for practically everything. Which I appreciate doesn't give you much guidence!
I went to a lot of appointments with a lot of consultants and gps to finally get a diagnosis. The dermatologist did want to biopsey the rash but as there was always a delay they gave me an emergency number to call to book a biopsy the day of a significant flare. As far as I considered it this would be the flare that was lumpy and covered a significant area. My bad ones could be entire plaques across my shins or pea sized spots. This happened 3times in 2017 and not one time did anyone answer the call or my messages or emails. At this point my GP gave up on the dermatologist and sent me to the kidneys guys instead who biopsey the kidney instead and didn't need to wait for a flare. Be prepared for the wait as the experts have very long to do lists. Certainly someone like me who wasn't sick enough doesn't go high on their list.
I have been told that damage to organs isn't necessarily correlated to a flare and that the immune system can attack the organs irrespective of a flare. Not very comforting. Unfortunately the rash is the only thing I can see so to me it means it's all going on even though it likely isn't.
I did however get so frustrated myself I called the vasculitis uk helpline. I wanted to make sure the next time I saw a consultant I asked the right questions and wasn't dismissed. They were very kind and very helpful even though I was completely vague about everything. They might be able to give some help on the bloods query.
I haven't been seen by a rheumatologist. I do wonder if I should ask but I'm climbing one hill at a time at the moment. This might be my next one.
I hope this is of some help! It's nice to meet people that have the same issues. Makes me feel less alone.
If its not too much trouble can u send me a few pics u took of the rashes ? To compare with mine? Also how did u track proteinuria for a year?and do u get frequent headaches?
I had been asked for urine samples a week prior to every consultant appointment which was about every 2 - 3 months in 2017. I had to take them to the GP. I will PM you a link to my rash photos. Who needs holiday snaps aye! I do get headaches - and sometimes occular migraines where my eyesight goes all funny. But I have always been a headachey person. I would normally get a headache once a month. It used to be worse when I was on the pill - now i have a coil and that helped a lot as there are less hormones in it. And I wear hats in the sun and sunglasses when needed, and my reading glasses at work when my eyes get strained at the computer, so the headache side of things doesnt give me cause for concern and I'm not sure the headaches are linked to my HSP. They might be for you though - these things are very variable.
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