HSP is ruining my life!!

[JessWorsnip]

Hi

I am 27 years old and I got diagnosed with HSP vasculitis in 2015. I had a lot of flare ups after this mainly swelling of the joints in my feet and ankles which resulted in lots of courses of steroids. I am currently in the process of finding an immunosuppressant that I can tolerate as my rheumatologist has informed me my condition is now chronic.

I have recently had a lot of problems with my bowels which is making it impossible to eat a lot of solid food due to the pain. The pain in my legs is getting unbearable and I feel like I am at my wits end. This illness has ruled my life for the last 2 years and I feel like I can't see an end to the pain that I'm in.

Is there anyone else that has had bowel involvement with this type of vasculitis and is there anything that you found that helped ease the symptoms?

TIA xx

[Vo321]

Hi, I have pr3 ANCA Vasculitis. I was diagnosed in November last year. I also have Microscopic Colitis, which is responsible for my chronic diarrhoea. Along with steroids I've been on MMF and Rituximab. I think the Rituximab was far more effective for me than the MMF. Since then my loose stools have improved from 3 times a day to once a day or every other day. I'm sorry to hear that you're currently in a lot of pain. Sending you my warmest wishes

[JessWorsnip in reply to Vo321]

Hi thanks for the reply. I have heard quite a few people have been on rituximab. I will mention it to my rheumy and see what they say.

Thank you again

Xx

[Hidden in reply to JessWorsnip]

I was treated with Rituximab and it worked for me.

[vascy_errol]

Hi JessWorsnip

I also have HSP, currently in remission thankfully. First bout was in 2002, I had kidney, stomach and leg, trunk and arm rashes, but was treated with rest nothing else. Second flare was in jun 15, the leg rash became ulcerated and I also had kidney and bowel involvement. I most likel also had stomach involvement but take lanzoperazole anyway for an unrelated condition so that probably masked it. Initial treatment was 40mg pred and rest but I continued to have more flares. Then had an Iv methyl pred infusion plus continued pred and also put on azathiaprin (100 to start then to 150 when blood enzyme test back ok). Had a further flare and debated going onto cyclophosphamide but stuck with the Aza. Luckily the drugs and rest helped me into remission around Sep 15. Now pred freehand reducing Aza; at 25mg and expect to reduce in 2 weeks when I see my renal if bloods ok. Was treated by renal due to kidney involvement, but saw a rheumy as well. Was also seeing derm but I was seeing them due to psoriasis anyway!!! I know things can get frustrating but do your research and have a list of questions for your next visit; the vasculitis uk site is very good and the HSP bit described me to a tee. Good luck with your treatment, stay positive and there is a solution out there. It may be different to my treatment, but there are many options and we are all different. Shout if you have any questions.

Vascy_errol

[JessWorsnip in reply to vascy_errol]

Hey vascy_errol thanks for the reply. It is extremely frustrating. I am currently on my 3rd bout of long term sick from work due to this illness.

I have kidney involvement and severe joint pain. The abdomen issues started last year and just seem to be getting worse. My GP can be useless as they said they don't know that much about my illness. My rheumatologist has had to send them details of what symptoms to expect and that if I need steroids for a flare up they have to give them to me.

I also have bipolar disorder which it is getting more difficult to control with everything that is go in on physically.

I just feel like there is no end at the minute and this is how I'm always gonna be

Xx

[vascy_errol in reply to JessWorsnip]

Hi jessworsnip

I was lucky that I was already seeing the derm and they chatted with renal over what tests or signs for worsening. I did go to a&e when I got worse, easier to get treatment rather than through my GP. Although have been advised that GP referral for consultant is quicker than consultant to consultant; different allocations and marked metrics!!!!

Fingers crossed you get the treatment you need. Try and read up and ask the questions when seeing your GP or consultant. If stuck then try Vasculitis UK they have a help line or can answer emails too

[JessWorsnip in reply to vascy_errol]

Hey

I am meeting with my rheumy on Monday and hopefully we can get to the bottom of what's going on.

I'm just stuck in a loop at the minute trying to manage side effects of meds and managing the illness. I defo think I'm gonna stand my ground and get some answers this time.

Thanks for your advice

Xx

[Wizzi]

HI, my child has MPA and chronic diarrhea, he goes to bathroom two / three times a day since taking Myfortic. The doctor says it is the effect of Myfortic (MMF) that works for the disease but can also cause this intestinal problems. He never told me about microscopic colitis. My son has no pains but I do not think you can do loose stools all your life.

The Calcprocteina test was mildly pathological. How can one understand if diarrhea is the effect of medicines or is it the disease?

Sometimes is very difficult t understand the way of act of this misterious desease

[JessWorsnip in reply to Wizzi]

Thanks for your reply I got referred to gastro due to the diaorrhea and had loads of tests. They think it may be something like bile acid malabsorption. I personally think it is the vasculitis. I have found lumps on my abdomen which I believe are inflamed blood vessels. I just hate the waiting in between having tests and appointments.

Hope fully they find the right meds and soon for me because I don't think I can take anymore.

Xx

[paullevans]

Hi Jess I have same symptoms legs and feet pains constant dioareah a have large vessels vasculitis are you in pain more when you lay or sit down? the bottom of my feet are sore I imagine like I have walked on hot broken glass and sharp joint pains.

My son was diagnosed with hspwhen he was 7 yrs old his symptoms was bruising and burning skin if he contacted water greatfully it has not returned 15 years later

[JessWorsnip in reply to paullevans]

Hi paullevans thanks for the reply. I think sitting is more of an issue st the minute. I get pins and needles at the drop of a hat so I'm always having to change my position. Also I have to have my legs elevated as the pressure in my feet causes severe pain.

I have had to buy a walking stick due to the pain. I feel like a terrible parent for not being able to take my kids out as much as I would like or we have to cut days out short because I physically can not walk anymore.

Your son is very lucky to not have it now. I wouldn't wish it on anybody, it's the worst

Xx

[paullevans]

jess sorry forgot to mentuon my treatment I am on retuximab

[Christophene47]

Dear JessWorsnip,

I have no advice for you, but want to say you have my best wishes and support from afar. You may want to read the book by Sheri Lyn Schwar called Vasculitis: Sick and Tired of Being Sick and Tired, 2006. Sheri was 26 when symptoms developed just after her first and only child was born; she was eventually diagnosed with Takayasu Arteritis.

The book can give you hope and let you know you are not alone as a young woman. I think you can find the book on Amazon in paperback.

Keep hope alive.

[JessWorsnip in reply to Christophene47]

Thanks for the reply. I think I have come across the book you've mentioned. It's just really frustrating. I've been so poorly since january then had a month of good health in may and now I'm in the middle of another flare up with a possible stress fracture on my foot. It just feels like I can't catch a break. It's even more frustrating when my blood results come back as relatively normal and I'm still feeling the way I do.

I feel like I should be living my life to the full not hobbling around in crutches and in tears nearly every night because in in that much pain. It's bloody never ending!!

[kc4t]

I know this a while since this post but to share my experience I found a lot of benifit from overhauling my diet to alleviate gut issues primarily but it benifited all the symptoms eventually. No refined sugar processed foot etc a real focus on nutrition. It's worthwhile getting some dietician support. If nothing else decent food always makes you a wee bit better.