vasculitis sufferer

[aburke53]

I have vasculitis, it itches, burns and is not pretty.. im having blood work done, to find out what type it is and how to treat it. I have stopped taking all of my meds, to see if it is related to the meds, and I am still getting the little itchy sores...Uggh

[Mooka]

Hi aburke53.

I’m sorry to hear you are having so many problems. I hope your tests are being done soon. Vasculitis is a serious disease that needs prompt treatment to stop it in its tracks. Usually takes more than a blood test to decide which type you have. Are you sure you are being looked after correctly?

[aburke53 in reply to Mooka]

The first dr. I went to . after getting a biopsy and finding out it was vasculitis, from the dermatologist, who knew nothing about the disease. The Dr. said, you have sores, so what. He is no longer my Dr., he was for 10 years...I just went to another dr, who referred me to a rheumatologist, she is the one doing the blood tests...

[Mooka in reply to aburke53]

Ok a rheumatologist should be able to help you. I hope your appointment is soon though. It’s not unusual for doctors to know nothing about Vasculitis that’s why you have to find one that does. GPs rarely do. Andrew is correct though you do sometimes have to get your elbows out and be very proactive to get appointments etc. It’s so easy to get lost in the system. The rheumatologist should ask you plenty of questions at your first appointment so go prepared with all the info you have even photos of your rashes if they are prone to changing. Also a list of questions you want answers to.

[aburke53 in reply to Mooka]

Thank you, the Rheumatologist, was very thorough, spent over an hour with me...Getting blood work done and then will see her for the results...Then go from there. I heard a steroid is sometimes prescribed. is one medication they prescribe , but I heard it has may side effects. Has anyone used Dermovate cream, to help with the itching. What do you take, for your Vasculitis?

[Mooka in reply to aburke53]

Treatment depends on the type of Vasculitis that you have. You should go to the Vasculitis uk website and check out the treatments for the different types. I have had cyclophosphamide, steroids and rituximab. I currently don’t take any meds for the vas but take a whole lot for the other diseases I have picked up along the way. Steroids are good and bad. The usual thing would be to start you on a high dose and then taper them. They should help enormously but the side effects can be a problem. I haven’t had any skin problems so I can’t help with the cream you have. Such good news you have a thorough doctor now. Hang on to her!

[aburke53 in reply to Mooka]

thank you, didn't realize, there are types of vasculitis...Im itching now!!!

[Mooka in reply to aburke53]

Think there’s about 18! Some rarer than others. Maybe a good idea to check which type you have when you get your results. The Vasculitis website is a mine of information and you will also be able to see if there’s any support groups near you. Sorry about the itching!

[Hidden in reply to aburke53]

I was given Dermovate, it did nothing for me. Dermatologist did a skin biopsy and diagnosed Nodular Prurigo but wouldn't give me steroids as I had just finished cancer treatment. So talked to my rheumy and she said Vasculitis, started steroids immediately.

[AndrewT]

Dear aburke53,

Whatever else, you do, be it Complain, Shout, Argue (not recommended, but still) even have a Tantum (again NOT recommended)….DON'T Stop the MEDICATION, Vasculitis Can be FATAL...Rashes can't- unless you have Scarlet Fever.

Yes you have a 'Rash', yes you have 'Aches & Pains' Everywhere, yes you feel 'Awful'. Yes you Feel 'Sick'. Yes you haven't 'Sh*t' since last Wednesday.....But, you are, Alive! Please DON'T 'Get Me Wrong', I'm NOT- exactly anyway- telling you to 'Put Up' with 'All Of this', just NOT to stop the Medication. The Rash, in any case, is Unlikely to be being 'Caused' by Medication....Far more likely the Vasculitis!

Sorry to 'Come in', so strong, aburke- I'm just anxious that you don't 'Harm' yourself, by STOPPING your Prescribed Medication.

On a Happier Note, and bearing in mind the time of year, Merry Christmas

AndrewT

[aburke53 in reply to AndrewT]

Thank you Andrew, started taking my meds again, this morning. obviously, its not the meds, I still am getting those irritating sores...

[AndrewT in reply to aburke53]

Dear aburke53,

I'm glad that you, are now, taking your Medication once again😊. Now regarding, your Rash, can I make- one or two- suggestions please?

Your Rash could, very well, be 'Vascular' in nature- is it 'Kind Of' red/purple/ maroon spots/ blemishes, sort of, Under the skin? Does it look Like, it's 'Sort of Spread', outside the Main Spot area? This is NOT easy to describe but, if you DO have, this Type of rash you will understand. Someone, and 'Helpfully' I can't remember who🙄, did 'Post' a Good Example a little while ago. Vascular Spots are not, generally speaking, 'Raised' above the Skin.

However and Before you Assume, that this, Is Vascular......Other 'Things', that MIGHT be causing your Rash....Have you 'Changed' anything recently? Washing Powder/ Liquid, Laundry Detergent, Soap, Shower Gel, Shampoo, Stain Remover, Bleach/ Disinfectant, Cleaning Fluid, Air Freshener, Hair spray, Perfume/ Deodorant…...That new erm….Yes that! If you own animal(s), have you Changed It's/their Bedding, Food, Flea Products, Worming Tablets, Food/ Food Supplements- including Biscuits and Mixers? Perhaps you have, with all this Rain, been bathing 'Bowzer' using a Dog Shampoo? The list, of 'Possibles' is just Endless but, worth the 'Effort' of thinking about. Like 'Finding A Needle, In A Haystack'...worse really, with the 'Haystack', you knew what you were looking for AND what it was in!

As I said above, I'm Glad - and 'relieved'- that you ARE taking your Medication again. All that remains, bearing in mind the time of year, is To wish You A Merry Christmas aburke53...to you and ALL your family- I'm sure that I can say- From Everyone here.

AndrewT

[aburke53 in reply to AndrewT]

THANK YOU Andrew AND YES, PURPLE MAROON sores. my skin will itch, I scratch it, and a little blood pool appears. It takes about 2-3 weeks, for it to heal.