Bad hsp flare up

chemotherapy . Just had 6 rounds of 1000 mg .  My kidneys, pain and swelling is much better . Nothing else has ever worked for me . Talk to your doctor if he/ she can’t help contact the vasculities foundation to find a doctor in your area that knows about using Cytoxan . Chemo is horrible but at this point it might be the lesser of the two evils 

Thank you for your reply. Did the treatment make you feel ill. What side effects did you have?

Have you ever had the rash so bad it's all over your body?

Sorry to ask so much . I have had this about 18 years now and the trigger for me.seems.mainly hormonal .

It's a really bad illness to have as it hits out of the blue . Once it starts there is no stopping it. This outbreak is just moving around constantly. Have you heard of a drug called rituximab at all. I am looking into it. I have reacted quite badly to medication in the past and been just as I'll from.side effects as from.the vasculitis. The doctors are reluctant to try much due to thexpansion fact my liver function reacts so much and last time.affected my heart rate as well.

Was chemo the only thing that actually cleared it up totally for you. 12 years is a really good run to have clear. We're you totally clear of all flare ups in that time.?

Hi Steph,

I went through a bad flare-up recently when I had a sinus infection. Anything seems to set it off. The first flare-up I had wasn't correctly diagnosed properly so I went untreated for a very long time which resulted in massive scarring as the rash developed into ulcers which got infected. I had Prednisolone which didn't really help but was told to persevere, which over the course of the eighteen months of taking it made me put on four stone.

The only thing that has done the trick has been Methotrexate (a type of chemotherapy) which I will probably be on for the rest of my life but is so much more preferable to going through massive flare-ups. I do feel sick from it and have mouth ulcers and slight hair loss but it's better than the pain and potential for more ulcers. I've never got the rash any higher than my chest and it gets worse the further down it gets so my legs, ankles and feet are badly affected. Like Michelle said, ask your GP about it because it could be the thing that works for you too.

Good luck xx

I failed on methotrexate it really damaged my liver badly. So I am on a rotation of drugs now. I know what had caused this flare up its a period after many months without one (menopuase). My periods were always the main trigger. But as you say anything can flare it up. Prednisone usually work for me eventually but thenot you have the weight gain to deal with. My joints get so painful I can't walk did yours get like that too. And around the stomach and back the pain off the rash there is awful. Thank you for replying . I have got really down this time with it .

Sarah I am so sorry you are going through this too. I also have fibromyalgia and it's hard to know what is doing what. I haven't been able to walk for years with the damage to the nerves and joints and it's awful. Being stuck indoors day after day can get you down. I am on facebook (steph downs) if you want to add me and chat on messenger anytime no problem. It's nice to know there are others in the same boat .

There is a huge lack of care around vasculitis and a huge lack of knowledge.

Thank you Steph. I totally agree, there isn't much known about this condition. I've been referred to a Dermatologist, Vascular Consultant, Rheumatologist and a wound care nurse. The thing is, I miss appointments due to the conditions I have and then get told off. I was having to see a nurse every single day for dressings to be changed which was a real pain and she really didn't have a clue about it. I think she was used to seeing the elderly with ulcers and had never come across this type of wound before.

I will try to find you on Facebook, I'm Sarah Emily Wormsley  :-)

Hi @Steph1609, I'm so sorry to hear of your plight. I am currently having a flare too but I was just diagnosed a few weeks ago. It seemed to be improving but then a week ago flared with a vengeance. Again it started to improve and then on Wed of this week re-flared significantly. I have it on both legs, top to bottom, front and back and just noticed a few minutes ago that it's started on the back of my arms. I'm an adult woman, I've never ever had any thing like this in my life and I am not at mid-life. I can't take prednisone as I had a bad reaction to it. My family Doctor diagnosed it and when I had the bad flare up last week, I ended up in the Hospital for 4 days. I've seen a few Dr.'s now and see a Rheumatologist next week. Have you learned of the Vasculitis Foundation and the Support Group on Facebook? I am new at this but it's a place to start. Sending hugs, Margie