Log in
Vasculitis UK
5,886 members5,273 posts

Cutaneous Vasculitis

Hi all

Back in early 2015 I had the most awful rash and raised itchy lumps over the lower part of my legs. I went to my GP who suggested treating the whole family for Scabies.

After many tests and appointments later and biopsies they confirmed Cutaneous Vasculitis. Back in 2018 from July to December I felt fab and had never gone that long without an episode so I thought I had conquered it. But December 23rd it started again. I have been to see my Dermatologist and she is adamant this time it is not Vasculitis and says Dermatitis. BUT my symptoms are exactly the same as episodes of my Cutaneous Vasculitis. I am getting really depressed with it. I cant sleep unless I take Amitriptyline and told to take Piriton and use Dermovate cream. It's not working. I feel like I am going mad. Please see attached pictures. Comments welcome.

24 Replies
oldestnewest

Has she done a biopsy? Was it the dermy last time?

Reply

No biopsy done this time and never been Dermatitis. I have tried saying all my symptoms are the same but she adament its Dermatitis this time

She isnt the one feeling the irritation

Reply

Time for a long discussion with your GP and a second opinion. Cutaneous vasculitis confirmed by biopsy doesn't just gallop off over the horizon and never come back. And if it looks like a duck, walks like a duck and quacks like a duck, it is far more likely to be a duck than a chicken...

6 likes
Reply

Definately a duck....

I need to pull myself together and fight my corner. I have had that many appointments since 2015 I am losing my fight :(

1 like
Reply

Dear Lou1972,

Yes I can hear, the Quacking to, you DO have a 'Duck' there. Can you not, without upsetting her too much, suggest to your Dermatologist that, since YOU are convinced it's the same rash.....Could she maybe 'Humour' you, with a biopsy?

If you are wrong, which your not, but if...Then simply say that it Appeared the same. Don't 'Gloat' too much when, surprise, surprise it's the same. Ca you ley us know to please Lou? Top Marks, for both the Rash AND the Photo Lou- ten, out of ten!

Since we ARE still in January, just about, Happy New Year.

Kindest Wishes

AndrewT

1 like
Reply

I don't know, if it was my Typing or this 'silly' keyboard but...I typed 'Can you let us know please Lou?' but if came out as 'Ca you ley us know to please Lou'! I think the Modern phrase is WTF. In my day we simply said 'What Happened There?'. I hope that this has 'Clarified' Things a bit. Elz yoo wood thunk eye Cooodent zpell, wood'nt yoo! Love, as always.

AndrewT

Reply

I understood every word Andrew.... ha. If I have this biopsey it will be a couple weeks for results but I will update you all. Many thanks

Reply

Thanks Andrew. I think that is the only answer but my only concern is when I have these biopsies they take a while to heal. I had one done on top of my foot that got infected. But to say hopefully I told you so I think I will have to suggest. Happy New Year to you

Reply

Yes 'Healing' time can sometimes be problem, another 'WONDERFUL' thing about our Condition(s)! I always, make sure, that Everyone is 'aware'- of my Condition. Generally speaking, I am provided with, anti-biotic Cover. Maybe worth mentioning.

I hope All Goes Well.

AndrewT

1 like
Reply

As PMRpro say's go and talk to your GP and ask for a referral or to see the top dermatologist at your hospital.

I had a nightmare with dermatologist mainly junior doctors who tried saying it was hives and an allergy and tried to treat it as such. After 18months they finally done a biopsy which showed according to them UV and they wanted me to take a drug that was not suitable for me due to lung conditions. After much pushing from my GP and myself I finally got to see the head man himself and he spotted straight away that I also had Jessner's Lymphocytic Infiltration. He ask a lot of question's like had the taken photo's of the rashes and this and that when I told him no to each question he rolled his eyes and was not happy. The next appointment I had at the local clinic I was surprised to actually see the doctor who was supposed to over see my case for the first time.

So please don't put up with treatment you're not happy with because quite frankly to be dismissed with a lazy diagnosis of Dermatitis show's a complete lack of knowledge of vasculitis.

Good luck and take care.

X

2 likes
Reply

Thank you. I feel I am losing my fight. The only time I get progress is when I take my Dad. How silly is that when I am 47.

My Dad is very protective and hates seeing me like this. Will see what happens on Tuesday

Reply

Does it matter if it gets a result? Anyone is good - but a male is always better. It shouldn't be like that but that's the way it works. It is disgusting but your health comes first.

3 likes
Reply

They do tend to be less cavalier and treat you better when you have someone else with you. I always try to have someone else with me not only for moral support or remembering things but that person can also help to put your case and also a witness to how you are treated.

Sadly some doctors can be a bit lackadaisical and think they know your body better than you. I had one who had the nerve to tell me that they knew what was wrong with me and what was the best way to treat it. I must have been well on form or teed off as before I could stop myself I replied that yes they have been to med school for some years but I've had my body a lot longer and know it better than anyone else. Ooops.

Anyway please don't be fobed off one arrogant doctor and try and have someone with you at your appointments as you have seen in the past it does make a difference at times in the way you are treated.

X

1 like
Reply

Thank you. I use to be outspoken and say what I thought but last couple of years I have lost myself along the way. Depressed with it all, feel like I am making everyone else in the family fed up with it all as I cant be too warm as it irritates it. I like to have a fan on me but this time of year isn't the best for others

Reply

I know what you mean, it can drag you down and so do the dr's at times.

I have hubby with me most of the time as he also has a way of helping to keep me level headed if one of them say's something dumb and talks to me as if I'm a 5 year old and don't know my body or symptoms. I must admit that since all this started and dragged on with the constant rash, tests and different departments and doctors the more irritated and sometimes annoyed I've can get. I used to be very patient and easy going and accepted everything they said but thanks to some dr's attitude's in how they not only talk to you but the way they treat you has got to much. They seem to forget you are not just a body and that there is a person in side with a well functioning brain.

Oh dear I seem to have had a rant, sorry.

Take care and do talk to your GP and ask if you can be referred elsewhere.

X

Reply

Rant away. It is good to have this site to air our thoughts and opinions. I know its not the right thing to say but it nice to know someone else knows what you are going through x

1 like
Reply

I know it's good to rant at times, it's at times so frustrating and can be made worse by some doctors who are after all meant to help and reassure us. I do know what you are going through, at times I feel like throwing in the towel and giving up.

What with one possible diagnosis, then another and then another. I do get very frustrated with the whole process especially when you say the tests have already ruled out this or that and they go through the whole process all over again and guess what, you're proved right and the whole thing has been a waste of time and NHS resources.

I made up my mind that after the next batch of bloods and scan to call a halt to the whole thing and get off the crazy merry-go-round of bloods, scans and biopsies.

Take care. X

Reply

Hi Lou.i too have cutaneous poly arteritus nodosa one of the vasculituses and I was told it was scabies 1st the welly rash then spider bites then after biopsy in the ulcer pyoderma gangrenosum. Pg for short.i was in more pain and yr later told me it was cpan. You need to see a rheumatologist too .do your joints hurt too? Iv been on every toxic drug out there.the only one that works for me is ritiximub. But NHS wont fund it cos pan is too rare.bloody joke. I got it in 2007 and didn't get diagnosed til 5yrs later.its a joke .GPS are crap too .most docs and registrars haven't seen or heard of vasculitus.gps are just the gateway to other services so know they cant do much and demand to see experienced consultants as they wont have a clue. Do your own research and only listen to clinical trials .print out what you have from a medical site and show doctors who dont know about it. Be assertive about what you want ask for 2nd opinion. My advice would be go to a and e and say ur in so much pain you cant cope with it anymore and your gp isnt taking you seriously then they will have to investigate and you will get seen by all the right consultants and get tests really quick.this if learnt over years of ulcers on my legs.

1 like
Reply

Hi thank you for your message. I met with my consultant on Tuesday she is still saying this time round it is dermititis. I will post some pictures later of all the things that were in my prescription. I am not leaving it like this as my legs are red raw its the wonder after 4 years anything is left of them. Gets you down. I will pop a message on here later. Thank you again

Reply

Hi.

I agree with Andypandy69. I have Polyarteritis nodosa 2016 but not the cutaneous PAN which is treated differently. I would highly suggest a Rheumatologist as well their versed in the care. I did use a dermatologist but just more for treatment of nodules. To be honest my dermatologist office which was actually the Physician Assistant was the one who diagnosed me with PAN. She ordered a wedge biopsy instead of punch biopsy to get a good tissue sample. She actually pushed for my Rheumatologist t see me right away because they were trying to give me an appointment in 2 months. She got right on the phone and said her diagnosis is serious and need to be seen now ! It worked. After that I became my Rheumatologist priority patient. It affected my peripheral nervous system. I was using a walker and began getting drop foot and terrible pain . Each day got worse . I was 41 at the time. I’ve been on Cytoxan and Rituxan and acupuncture (which is what really helps now). The dermatologist did prescribe Halobetasol ointment for my nodules. Shrinks them fast. Hope you feel better.

Reply

Hello Lou, i know how frustrating it is to get the correct diagnosis. I went through the same thing I have GPA Vasculitis. I broke out with the same type of sores you have. Dr.s said three different things. I suffered with it for months. Everything they gave me did not work.i still get it from time to time. i use anti itch cream try to let it get as much air as possible,over the counter pain med.s. they settle down for a time when they start to flair again, i go back to the same. I am 76 years old so they are careful what i can take. Get another Dr.. I have found you have to speak up or they will continue along the same path.which does not help you.

i wish you all the best. vasculitis i a force to be reckoned with that is for sure.

God Bless,

Bonnie

Reply

Thank you Bonnie. It gets tiring. I feel that sometimes nobody listens. This time round is really getting to me. Always got the fan on my legs to keep cool. Husband patient one minute then I feel I am annoying him. Nobody knows the pain and discomfort we go through.

Reply

Hi Lou, hang in there i know you can get depressed and or feel helpless plus so tired the disease, complaining,feeling you aren't heard. you are fight no one else can know what you go through and you don't want to annoy them. try to stay as positive as you can,listen to music anything that will help uplift your spirit. Keep the faith and hang in there.

God Bless,

Bonnie

Reply

Hi Lou,

I was diagnosed as having Hypersensitive Vasculitis a while back, after reacting to blood pressure medication I had been prescribed..

Then, during a routine blood test, my GP diagnosed a big Vitamin B12 deficiency, and prescribed a regular B12 injection to be taken at 3 monthly intervals. The rash disappeared for a period of time and then reappeared closer to the time I was due to get my next B12 shot. More recently I started taking over the counter B12 oral supplements at high daily doses (currently 2 x 1000ug), and have found that I am able to keep the vasculitis rash more or less under control..

My advice is to consult your GP about the possibility of receiving B12 boosts in intravenous and/or oral supplement form, to help in your fight against Vasculitis..

Best Wishes..

Reply

You may also like...