Introduction

[vascy_errol]

Hi I'm Vascy_errol

I was diagnosed with HSP first in 2003, then had a second bout in Jul 15. Now in remission following IV methylpred infusion and the continued treatment on Pred and Azathiaprin. I've been pred free for almost a year and started tapering my Aza, and hope to be Aza free in 6 months...! I do have residual joint pain in my knees, hips, shoulders and elbows and have been referred to see the Rheumatologist, so hopefully a way ahead with that soon. I am also seeing a Derm as I have chronic plaque psoriasis as well, just for another immune system disorder...!! I take Humira for this and it keeps it nicely under control.

[Suzym2u Moderator Vasculitis UK]

Where are you seen Errol? Which hospital? HSP in adults can be very difficult to treat and manage

[vascy_errol in reply to Suzym2u]

Hi suzym2u

I was treated at Yeovil hospital initially, then when the renal involvement worsened I went to Dorchester as they have an in house renal team. Aware of the difficulties with HSP, but luckily my treatment has worked for me!!

[Yeprat]

Hello Vascy_errol,

Despite everything and reading between the lines, it seems that you are making better progress with the help of your Medication, so good luck with your outstanding issues.

I understand that all cases are different, but am interested in how you came to be medicated. What type of Doctor advised this, what benefits did you see and were your initial symptoms "classic" HSP? Also was your "second bout" similar to the first and do you get Fatigue?

My wife was diagnosed in Aug 15 with HSP, with Purpura, Joint & Stomach pains, and Kidney involvement (inc Heamaturia & Proteinuria) which was monitored on a Renal Ward for 8 days. Still has a few leg bleeds now and blood in urine has been ever present. Also has had spasmodic recent excursions in various tests (high Liver AST & Phos & 25 point GFR reduction) which normalise in follow up tests. Still has occasional Protein on Dipstick tests.

One Doctor suspected a relationship with +20 Sinus & Eye infections in last 2 years, although a CT scan confirmed Sinus & Nose were normal. We're concerned over reduced Immune system and lack of understanding of infection's and suitable medication (we are pushing to see a Immunologist). Still awaiting referral for Inflammation found on Colon & Endoscopy - Oesophagus (Barrets Mucosa), Stomach (Gastritis), Duodenum (Duodenitis). Bowell (Patchy Erythema & Oedema Metaplasia). Osteopenia on previous DEXA scan.

It somehow seems like good news that my wife is not on medication, as it implies that her condition doesn't warrant it. However, we are unclear if this is a fully informed medical view on her Vasculitis or just a view on no treatment needed for her Kidneys from a Renal Specialists. We no longer feel anybody is managing the Vasculitis overall and the long term impact of her continued symptoms is on our minds and we are pushing for this now.

[Suzym2u Moderator Vasculitis UK in reply to Yeprat]

If you contact the vasculitis helpline maybe Lynn or Julie he will be able to help with some advice. vasculitis.org.uk/helpline

[vascy_errol]

Yeprat

Sorry to hear about your wife's condition and I do hope you find treatments that work.

I think both times that I did have "classic" symptoms with purpura rash spreading upwards from feet/ankles up my legs and onto lower torso/bum and then inside of arms, joint swelling and pain, stomach pain. Second bout my rash went ulcerated and I also had bowel involvement but only minor. I also had some nose bleeding too. I always had blood at ++ level or more in my urine since the first bout, plus also occasional protein as I had suspected 2nd stage renal disease (I think that's the term!!). First time I just rested and all sorted out, this time 40mg pred for a month and things got worse, so had the IV methyl pred. I only had one infusion, but usual treatment is 3 over a short period. Didn't have a kidney biopsy as we didn't think it would actually prove anything or change the treatment plan at that stage.

I am conserved with the joint pain, but hope for a way ahead with a rheumy apt in a few weeks.

Hope all works out for you and your wife

[Yeprat]

Very helpful thank you. Good luck with your Rheumy.

We've sent you a private message hoping to keep in touch and exchange information and ideas.