Hello, I've been diagnosed with HSP Nephritis in August 2017.
I was on 20mg prednisolone for 5 days and 20mg cozaar daily.
On Day 3 I had a bad flare up of vasulitis. Rheumatology doctor suggests that I need to up the steroids.
Now I am on day 6 of 45mg prednisolone. Continue for 1 more day and then reduce to 40mg for the following 7 days.
On day 5 (yesterday) on 45mg, I had another flare but not as bad as the last episode.
What's happening? Is the steroid still insufficient? I cannot sleep for first 4 days and by day 5 I knocked out. I am also constipating for past 3 days.
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I am in remission from HSP with renal involvement, had my last flare back in Jun 15 and went into remission Nov 15 (ish). I was in hopsital twice for a few days each time, plus also had another visit to A&E where they upped my pred but I wasnt admitted. If you do present at hospital, ask the Dr what experience they have of treating vasculitis, as HSP in adults is fairly uncommon.
The steroids will effect your sleep and energy levels, that is one of the side effects. Are you also resting up, basically lying in bed or on the sofa with your feet up or remaining active? You should be resting, almost inactive or else the flares will most likely continue.
Are you being seen by anyone from renal? I assume you have renal involvement with the Nephritis tag? My care was led by a renal (nephrologist) consultant and only saw a rheumy as a stand alone appointment where I discussed treatment options, but they basically said I was on the right treatment plan at the time.
Be careful when you reduce the pred, I was on 60 for a week to give me a "boost" and dropped back to 40 afterwards. Droped on the Saturday and on Sunday I felt like i had been hit by a bus. 5 mg at the 45/40 point may not have the same effect though, but you should taper steroids gradually.
Are you on any calcium tablets as longer term steroid use can cause bone issues? I was also given a antibiotic as you can be prone to a chest infection on steroids too, I forget the name of them now though!
If you havent been there already, I thoroughly recommend the Vasculitis website:
The description here matched me to a tee!! I was treaded with pred (40 at first, up to 60 for a short period) and rest, then IV methyl pred plus pred, then azathiaprin (plus pred, tapered the pred to zero, and am now tapering the aza. I did have flares through my treatment, but that was either me doing too much or waiting for the aza to kick in.
Not sure how often you are being seen or reviewed, or by who? But worth pushing for at least weekly bloods and also urine where they are looking at inflamation markers, protein, protein/creatine ratios, blood, etc. Again the Vasculitis web should help advise you on what is what for blood testing. Stomach involvement is also fairly common, although not all cases are text book!!
Good luck! Be patient and put your feet up, doing stuff early on will most likely delay any recovery.
Out of fear, I try my best not to walk as much. Otherwise, my daily routine of going to work remains unchanged.
Whenever I see the flare up, I can't help but imagine how it's harming the kidneys.
My rheumatologist has also referred me to a kidney specialist. However my main care is from the rheumy.
For now, they are monitoring and trending the protein and RBC in urine. I've been placed on nightly 25mg cozaar to reduce/keep inflammation under control.
Duly noted on the gradual tapering of the pred. Thanks for the heads-up.
And yes I am on vit D daily now.
Will check out the link you gave. For now my apppointments with rheumy and kidney specialist are fortnightly with blood and urine test done.
How long were you on various dosages of pred before going into remission? And how often do you follow up on renal care now that you are in remission?
I am beginning to listen to my body and recognize when I am feeling stressed as that's when I'd get an episode of the flare. Thank you for your encouragement and tips (will definitely put my feet up).
Hope things have moved on a bit since we last spoke?
My rash on my shins went ulcerated, and it was quite extensive up my legs, bum, lower trunk and amrs, so I was told to go and put my feet up so they were elevated. I had a copule of months on pred, but was still getting further symptoms if I tried to do even the smallest thing above making a cuppa. I had a temporary uplift to my pred from 40 to 60 for a week after a particular flare when I presented to A&E. I then had a further flare and was admitted as I had additional symptoms above my previous ones, so was admitted. I had a single infusion of IV methyl pred, then was put on Azathiaprin, 100 mg to start until my bloods were checked. They check for an enzime, either it being there or not being there I forget, but once confirmed OK I was upped to 150 mg per day; the check takes a couple of weeks to do. 2 weeks after starting the aza, I had a further flare and I discussed going onto cyclophosphiamide with my renal consultant, and he actually sent me a prescription script, but I chose to stick with the aza after discussing it across a few forums. In all, I was first admitted at the end of June 15, and was then deemed in remission around the end of Sept. Once I was in remission the apointments were gradually extended with a tapering of pred agreed. I went to monthly, then 3 monthly. I was pred free around end Jan 16, then started to taper aza around Sep 16, tapering first to 100, then 75, now on 50 and hoping to reduce again in a month or so. I still do blood and urine when I go to see my renal consultant, they are checking all is going OK to allow continued reduction and my HSP is still behaving.
Getting rid of stress is a good thing, and I think the rest is also key. Do listen to your body. Good luck with your treatment; think positive and I am sure you'll get there.
Hi vascy_errol, I hope you’ve been well. I am in remission in October. I have tapered off my meds to zero. So I keep an open date with my rheumy. However, because of protein in the urine, I still do my urine and blood tests once every 2 months with my kidney specialist. It’s good to be off preds but now to lose the weight has been challenging. But I’m in good spirits and feel very relieved. I do however worry of the protein in urine. One step at a time!
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