Blisters under skin - caused by vasculitis?

[RedPoppy2]

Hello,

I just wanted to ask if anybody has experience of blisters under the skin being caused by vasculitis.

My 21-year-old daughter has a diagnosis of IgA Vasculitis and has recently tested positive for ANCA (on a waiting list to see a Rheumatologist about that). For the past 3 months she has had blisters under the skin on her hands and fingers. She asked her GP about it and was told to go to the pharmacy about it. The pharmacist said it was a fungal infection and gave her canisten ointment, which did no good. The blisters have now spread up her arms and I'm quite worried about it.

Any advice would be much appreciated, thank you!

[PMRpro]

I would expect the GP to show more interest and at least contact a dermatologist to get their opinion. They are supposed to be able to get advice from the specialist departments to reduce the amount of referrals - and just because you have to wait to SEE a rheumy, the same applies there, they could phone for advice if they thought that was more appropriate. But to send you to the PHARMACIST - really??????

[RedPoppy2 in reply to PMRpro]

Thanks - I was quite shocked myself that the GP wouldn't do anything. Her GP (in Wales, unfortunately) seems pretty useless - won't discuss the vasculitis/what the positive ANCA test means at all - no monitoring of her kidneys (which is a big concern). Won't even give her the test results - have put in a formal request, which has been completely ignored. My daughter has made another appointment to see GP, but unfortunately won't stand up for herself and won't allow me to go along

[PMRpro in reply to RedPoppy2]

Ah - a load of questions answered there, Formal complaint is what you need - not request!!! Not much you can do if she is being all grown up ...

[RedPoppy2 in reply to PMRpro]

No - that is the problem - doesn't want me interfering :-(. If it was up to me, I'd definitely be putting in a formal complaint.

[PMRpro in reply to RedPoppy2]

She will learn eventually - how old is she? It is hard to stand by and watch but that is what we did - brought them up to stand on their own 2 feet!!

[RedPoppy2 in reply to PMRpro]

She is 21 - just hoping she won't learn too late! I understand why she won't fight the GP (hard for a 21 year-old to challenge somebody older/more experienced), but difficult to stand by and not interfere!

[PMRpro in reply to RedPoppy2]

I know - mine are a lot older, have children that age themselves. Just be there for her and try not to spoil the relationship - my daughters have done a lot better job than I did, I was too fiery ...

[RedPoppy2 in reply to PMRpro]

Yes, that is the danger - spoiling the relationship. We can't really discuss this anymore without getting upset with each other. Guess I just have to leave her to it, but I do ask for advice on here that I pass on (even if it does fall on deaf ears!)

[guineapignot]

hi there. I read your post and felt for you . Bad enough in an adult but for your child to not be fully diagnosed or seen as a matter of urgency that is Appauling . I completely agree with the PM Pro reply this is a complaint !! No one likes to do it but this is essential . My own experience with the GP was similar , not acceptable , but after the formal complaint was issued I have since had good access to the Rheumatology team … who are excellent . If you can get hold of Rheumatology nurse/ helpline they will help .

Good luck . Persistence wil pay off . I wish you the all the best and under the correct care vasculitis can be well managed .

[RedPoppy2 in reply to guineapignot]

Thank you for your kind reply. My problem is that my daughter is an adult (21), so I can't do anything on her behalf :-(. If it were up to me, I'd have filed a formal complaint a long time ago (she was ill for 2 years pre-diagnosis and, in the end, it wasn't even her Cardiff GP who diagnosed her). My daughter doesn't want to make a fuss, so is just sitting back and waiting. We have no direct access to the Rheumatology team (she's still waiting for her first appointment - 7 month waiting list).

I wish you well, too.

[SK86]

Hi, hope your daughter is recovering. When I was diagnosed with vasculitus it started off with spots which became blisters on my arm and hands and on top of my feet up to my knees. So yes, can have a link.

[RedPoppy2 in reply to SK86]

Thanks for your reply. My daughter is getting worse (blisters spreading), but hopefully will improve soon. Can I ask what type of vasculitis you have, please - just wondering which type might cause these blisters (she has the vasculitis, red/purple rash, but this is different)? Fine, if you don't want to say

Wishing you well!

[SK86 in reply to RedPoppy2]

I started getting this rash of tiny spots and then the blisters. They couldn’t work out what it was. Was referred to dermatologist and they did biopsy of the infected area and put it down to vasculitus. Nothing helped me until I was given steroids. That was the only flare up I had and haven’t had it as bad since. Now all I get is these small spots on my hand and legs that itch but disappear.

[RedPoppy2 in reply to SK86]

Thanks for replying - I think my daughter probably needs to get steroids from her GP, as over-the-counter stuff from the pharmacy isn't working.

Wishing you well!

[PreetyK]

Hi RedPoppy2,

I didn't have blisters but had lumps under my skin following a very intense flare up while I was hospitalised. The lump would not go and kept getting harder with discoloration and tenderness to touch. Eventually it went away by itself within 10 days of the flare up. There was no follow up from any doctor specifically for the lump but I kept mentioning it to all the doctors while I was in the hospital so nothing is missed. In your daughter's case, I would suggest that you contact the rheumatologist or the lead doctor for vasculitis and mention this as a symptom and ask for way forward. Blisters for 3 months in itself sounds painful. If they are spreading it may indicate something which a GP may not quite understand but a vasculitis specialist may pick up.

Hope you find some medication through referral. Wish your daughter a speedy recovery from blisters.

[RedPoppy2 in reply to PreetyK]

Thanks for your reply. My daughter isn't yet under a rheumatologist/specialist (she's on a 7-month waiting list to be seen). She is going back to the GP and hopefully she will insist on some action (though I doubt it - she doesn't want to make a fuss ).

Wishing you well!

[PreetyK in reply to RedPoppy2]

Hi RedPoppy2, have you considered going to accident and emergency. If it's spreading then that's a good reason to show up in emergency. If admitted, she may get faster response in the hospital and get treated immediately. Best wishes.

[RedPoppy2 in reply to PreetyK]

That's a good idea, thanks. I think she will leave it until it's an actual emergency (hopefully doesn't happen) before she agrees to any more proactive action, though!

[Countryman1]

Hi RedPoppy2,

After suffering symptoms such as achiness, numerous chest infections and generally feeling fatigued for several months, I developed blister type spots on my fingers, elbows and back. My Gp really didn’t know what it could be but by coincidence I was given steroids due to having asthma and this cleared the blisters and generally I felt a lot better. However a few months later my symptoms reappeared and I was admitted to hospital with chest pain - I had myocarditis / pericarditis caused by vasculitis and was diagnosed with EGPA. I was in hospital for two weeks but feel very lucky that it was caught in time and it did not cause any long term damage to my heart - the sooner a diagnosis is made the better as we can’t see the damage it is doing to internal organs until it’s often an emergency.

It’s not easy to accept an illness, especially when you’re young but I hope your daughter will soon get an answer,

Best wishes

I

[RedPoppy2 in reply to Countryman1]

Thanks for replying. My daughter has a lot of unexplained symptoms that other people mention, that I think may be caused by vasculitis - fatigue, aching legs, strange fevers, persistent cough (although she does vape). Her main symptoms up until now, though, have been the vasculitic rash and horrific stomach pains. The blisters are something new, so keen to know what's going on there. What you say, is my main worry - that her organs are being damaged without her being aware - I'm hoping it won't come to that, though.

Wishing you well!

[Countryman1]

I forgot to mention that it was a skin biopsy of the blisters that, together with numerous other tests, helped to diagnose vasculitis as I’m Anca negative - just thought I’d mention as it maybe helpful to see a dermatologist to ask for a biopsy to get things moving a little quicker

[RedPoppy2 in reply to Countryman1]

Thanks. She's already had one skin biopsy (of the vasculitic rash), which showed IgA. Maybe we need to ask for referral to a dermatologist for diagnosis/biopsy of these new blisters.

[eh66]

Yes - I had blood blisters, especially over my feet (one went septic and took 6 weeks to heal with twice weekly visits to get it cleaned and dressed) I also had minor kidney damage (two kidney biopsies to check this) I had two years worth of biological infusions plus very high steroid doses initially. Fortunately I am now classed as in remission.

[RedPoppy2 in reply to eh66]

Thanks for replying. Your experience sounds awful and I'm glad to hear you're now in remission. The new blisters my daughter has aren't blood blisters - they're clear in colour (like a normal blister, but they're sort of trapped underneath the skin - hard to explain).

[JeanE4]

Hello. I was diagnosed in 2008 but I had the vasculitis rash on my lower legs and feet only. It's called Henoch-Schönlein purpura. I didn't have it initially, only on the second flare up.

[RedPoppy2 in reply to JeanE4]

Thanks for replying. My daughter's been getting that since April. The new blisters are different - they're white/clear in colour and trapped under the skin.

Wishing you well!

[JeanE4]

It must be terribly worrying for you all. I wish her well. On a positive note, I lead a relatively normal life, but you just need to stay in tune with your body and, if you start to feel unwell, seek help ASAP.

[RedPoppy2 in reply to JeanE4]

Thank you - that's very reassuring to hear!