Vasculitis UK
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Adult HSP iga nephropathy

Hello

So i have been given a diagnosis of adult HSP vasculitis with associated kidney damage. Current treatment is to protect the kidneys from further damage and im already hopefully modifying my diet as recommended. Ie removing salt.

As this seems to be a childhood diese and short lived i wondered if there were any other adults out there who had this and for how long? Im 35 and had it for over 3 years now. But thankfully no big flares since last august at this stage. Plenty of low grade joint pain and rashes though to remind me it hasnt gone away entirely...

Just looking for othe r experiences

KC

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I believe there are others in the community who have been diagnosed with HSP IgA vasculitis. It is certainly less common in adults and adolescents and seems to be much more difficult to treat and manage. Prof Alan Salama at the Royal Free in London updated the HSP IgA Vasculitis page quite recently for the VUK website if the information is helpful. vasculitis.org.uk/about-vas...

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Thanks john ill have a good read!

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I got it at 20, had lots of huge flares until I bit the bullet and tried cyclophosphamide. Touch wood been okay since :) - this was nearly 2 years ago now.

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Thank rjn. DDo you mind me asking how long you gave it until you tried the strong stuff? Im dont want to take it unnecessarily but i am open to anything that might knock it on the head if i get hit by the big train again

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Hi, well I originally got it around May 2015, had 3 big flares before having a kidney biopsy around late June which confirmed HSP and kidney involvement. At that point I’d already had a fair few doses of IV PRED so we decided to go onto a mix of 30mg pred and Mycophenolate. Carried this one for a few months but unfortunately flared again twice both times resulting in going to hospital as a day patient for IV pred which I always responded well too. Around November I started experiencing really low energy levels, quickly followed by swelling of the ankles in the day / evening and face in the morning. At this point my kidney specialist was seeing me almost weekly (I am very lucky to have that doctor!), we felt my kidney function was too low and that we needed to try something else so went down then cyclo route. Did the various prep for that and then had 3 sessions of it IV (if you want to know what it made me feel like etc then happy to reply, just let me know). :)

All the best,

Ryan

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Forgot to say, I think it was around Feb 2016 when I finally started the cyclo!

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Hi kc4t

I have had 2 big flares of HSP, first in 2003 and second in 2015. From your he first I was told I had stage 2 kidney disease through iGA nephrothopy, resulting in having some trace of blood in my urine. I had no other issues until the second flare. My leg rash was more severe and ended up ulcerated, plus I had more extensive treatment. I had IV methyl pred and also had azathiaprin and pred. I was diagnosed as in remission after 3 months and have tapered pred and no longer taking it. I am now tapering Aza and down to 25 mg from 150 mg. I have joint pains, but have not had any flares since going into remission. I was offered cyclophosphamide as I had a flare whilst on 100 mg Aza and waiting for my blood results to come back to up them to 150 mg. I stuck with the Aza and all worked out ok for me!! It will always be there and may or may not come back, but hey, can only play the hand you are dealt!!! Hope you find the treatment you need. Good luck, shout if you have any questions.

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Thanks vascy errol. Did you ever figure out any factors that influenced your flares? I have noticed alcohol does make it worse so ive cut that right out. Exercise also can sometime cause a purpura flare so ive been advised to wear compression socks and shirts so i do that. But im really intersted in seeing what else i can change if others have had success in managing it too

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Kc4t

I think stress, long hours and just doing too much at work was the major factor causing my flares in 03 and 15. The secondary flare in 15 I think was doing too much too soon and not resting up to let my body “settle down”. The 15 flare I stopped alcohol completely, but the 03 I didn’t; being younger and fitter may have contributed there? I didn’t wear compressive socks, but I think they would have aggravated me with the ulcers that formed. Can’t think of any changes I made, although researching things so to ask the intelligent questions at reviews may have helped??

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Thanks vascy errol. Stress is a funny one. I thought it must be contributing to mine but then last summer i had the most stressful time of my life during august and september but yet had only mild purpura. I do do a lot to try and reduce any additional stress. Ill keep at it :)

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Hi kc4t, I think it could be a multiple of factors on top of stress? In 15 whilst I was very busy with work, I felt I was coping with it all, but also I didn’t feel unwell or tired. I was also still cycling 6 mike to and from work each day, so remained active. After the main flare, I was resting up totally, most of the day spent lying on the sofa with my feet raised only getting up for the loo or a drink (plus to feed the pred munchies!!!). The minor flare that followed happened when I was trying to go back to work and spending half a day at my desk whilst on low dose Aza waiting for the blood test to allow the higher dose. I think this was just my body tells no me “not yet”

What type of consultant are you being treated by? My main consultant is renal, but also saw a rheumy but that was mostly to discuss the treatment plan the renal team put I place. Are you in remission? When you say in your first post “it hasn’t gone away entirely” I would suggest that the joint pain is a remission side effect (I have that too), but the rash isn’t. Good luck!!!

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No one has mentioned remission yet. At the moment my flares happen after exercise. I end up with rashes up my arms. I have been wearing compression socks And think that saves my legs from becoming rashes. I only walk now though. I had been gearing up to run a half marathon but my knees have some itb issues as well. So I’ve decided I shall just walk this year. My worst flares all came after bad chest infections and this winter has been the first time in 3 years I haven’t had to get antibiotics from the doctor as well. I sneezed yesterday though and am worried in case it turns into a cough. I do think that would set me off again. For the moment I am very happy with just purpura and mild back pain. My main consultant is renal. I haven’t been seen by a rhuematologist at all. Back in 4 weeks to see how the mess might have helped my kidneys... I’m keeping my fingers crossed

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Hi kc4t, I was diagnosed with HSP Vasculitis Nephritis in August 2017 at the age of 38. I was am on prednisone from doses of 40mg tapered down to 2mg this month. The medication seems to have a positive impact as I haven’t had any flare episode since September 2017. Keep the faith and be consistent with the medication. Let me know if you have other questions.

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Thanks ap38. Ive got two months to test hpw much mykidneys mightimprove on an ACE inhibitor before theywillconsider mefor immunosupprssive drugs. Which i am happy with so will see what happens. I am keen to see what triggers flares though. For ages i called this my wedding allergy as i would get flares always at weddings. In reality any social event seems to set it of a little bit but im a loss as to the mechanism. Food and drink dont seemtobe the culprits

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For several years before my first proper diagnosis in Aug 2017, I always thought the flares were spice related. I even had a food journal and would be asked by GP to take antihistamine when I had an episode. The antihistamine used to work until the flares got more frequent. I also noticed that I get the flares on long flights (7hours and above). All of which went away after being on prednisone. I tried several spices that use to trigger and I don’t get an episode. Another food group that I triggers an episode is oysters but I have yet to “test” that out.

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Interesting! I was going to ask the gp about potentially taking antihistamine today but forgot my question list and subsequently all my questions. Ill have to remember to ask next time.

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I finally remembered to ask my consultant about antihistamines. Apparently they don't impact this sort of immune response so wouldn't help. I don't know enough about the immune response to understand if this is 100% correct or not

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Hi. Just checking to see if I can reply on this site. This is exactly what I am struggling with and id love to talk about it.

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Please do! I think we all are a bit. Im so keen to hear about other peoples experiences. For ages (years) i was told i was exaggerating my symptoms at best or making the fatigue up at worst. Its such a relief to have a diagnosis at last. With a name. And a treatment plan. I also want to plan ahead more. Understand what might happen next amd how to fix it or at least try to. Hence all my queries!

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Dear kc4t,

I can't really comment much on the answers above, however I AM a kidney patient. I first fell 'Ill' in 1995, or there abouts, The Vasculitis attacked my Brain, Kidneys Eyes and Heart. So basically I DO know 'quite a bit', about Kidney Problems.

To cut a long story mercifully short, I was on Dialysis for four years before receiving a Kidney transplant, in July 2013. I have ANCA Vasculitis, apparently about five Overlapping 'Strains'.

I am currently 'Checked', at Addenbrooke's- Dr David Jane's Team- once a year. I am also under a, really 'Brilliant' Consultant- Dr Andi- at Ipswich Hospital, for my Ongoing Care.

This probably isn't relevant....but I live in Supported Housing which means, in effect, I can Summon 'Help' any time of day. I am also 'Supported' if/when I go out.

Sorry if this isn't quite the answer that, you were expecting. Please do contact me further if I CAN be of any further assistance.

Warmest Wishes

AndrewT

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I am diagnosed hsp when I was 11 years old, and it attacked when I was 35, and 40. I have kidney problem since 2nd atackt. Now I am using hipertansion pills, D vit, the doctor advise eat fish 3 times a week, no salt.

I can say the cause of illness for me, cold, tonsilit, taking tablet (majezik craxilex) stress.

If you have any advice for it i will be pleased to hear.

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Hi Sevda12, i think that probably reflects my triggers too. Ive been reading that vit D protects more against colds and flu than vit C at the moment, although I have been upping my fruit and veg intake as much as possible in the last few months. I have reduced my own alcohol intake down completely as well. Although I allow myself the occasional glass as I have to live a little too! To manage my own stress I now go to art classes twice a week. I joke with friends that its my therapy, but it really does help. I also try and complete a long walk most weekends, and borrow a dog when I can. I had been taking up running to get me fitter and stronger, but I have had knee issues. My physio has suggested I have ITB inflammation and I do wonder how much of the inflammation that triggers the IgA response in the body might be influenced by more inflammation. I've been trying to read up on diet things I can do to reduce inflammation in general. Unfortunately most of it is not gathered from my doctor - so this is just what I am doing at a personal level. Staying away from sugar and glucose, reducing salt, adding turmeric to my carbs. Going to yoga to stretch and relax is also a me thing - but there are no good or affordable classes I can attend local to me though. I have been reading up on the Wim Hof method - as the exercises are apparently scientifically proven to relax the sympathetic response within the body - and therefore hopefully the immune response.

I am likely to have to move house and jobs in the next few months. I am anticipating that it will be stressful. Will have to get my own coping mechanism for that is none of the above work for that time!

Does anyone else have any management tips?

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Hello and best of luck with your HSP journey. There is really a lot of help out there (especially on this site) when you find it (and it looks like you have).

My wife has had HSP with kidney involvement since July 16 and was hospitalised when kidneys indicators (protein loss & reducing GFR) were worsening. Originally leg to chest rash, joint pains & swelling.. Also affected Sinus (14 episodes in 12 months) , Eyes (blood shot/sore), Bowel (blood & mucus) & Oesophagus (Inflammation & acid) for first 6 months. From day one too date elevated IGA and trace blood and protein in Urine. Like others we worked our way through mis management (and unique challenges in Wales) and found the right people to help us.

Management tips - we mirror what you are already doing and C has really taken to Art!!:-

i) Post initial expert phase, keep it at the back of the mind as much as possible to reduce stress. We now manage the illness ourselves (as "minimalistically" as possible), with our own Urine tests, blood pressure & symptom records. We react as needed to new symptoms (usually feeling ill & leg bleeds).

ii) We arrange a Bi-annual Endoscopy, to keep an eye on the Inflammation there.

iii) Give your GP (surgery) and lead consultant as much support as you can (copies of Vasculitis roadmap, Prof Alan Salama's papers etc) to get to first name term relationship. We now have a good relationship with our GP. We get full bloods done (we see occasional Liver excursions & Low WBC) when symptoms worsen and then call the Renal Consultant. We now decide when to see him.

iv) Immunologist- it helped seeing one (on our initiative and thanks to seeing one speak at the Liverpool Vasculitis Group). We found it useful and were surprised to find that my wife's allergies went off the scale and new ones appeared. Of course in our minds, the Vasculitis caused this. An inadequacy in the Immune system was found and treated with an injection (so more relief).

v) Walking - avoid above ankle boots when walking, we find this "leg pressure" brings lots of bleeds and we just try and avoid anything that promotes bleeds.

vi) Rest and legs up still works.

In this case, no "real" treatment or medication was needed. My wife takes tummy pills and an anti histamine every day now.

JT.

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Hi jtrp. Thanks for sharing so much. I'm glad some of my things overlap. Since I posted the above I was put on steroids and have gone from 60mg to 15mg. The amount of extra symptoms that eleviated as soon as treatment started was amazing to me. To the extent that my GP wants to test me for lupus once the steroids are finished as my symptoms are so much clearer to me know and I'm able to discuss it with them. The aim is to get off tsteroids by Christmas. All depends on continued improvement in my urine tests. Do you mind me asking which home kits you use? Most I've seen are just a litmus yes/no but I'd be keen to find anything that denotes high or low level readings. My renal consultant looks at my albuminuria mainly.

Also what is the vasculitis roadmap and how do I get one?

I enquired about taking antihistamines but was told that they wouldn't help but I didn't understand why. I'm interested to know that your wife takes them so I might revisit this!

Also I've been researching diet and nutrition changes and hoping to get an appointment with a functional medicine practitioner in the coming weeks to review any extra things I can do to help. I'm trying to hopefully go on the AIP diet but I want to take it through with an expert before I have to annoy everyone who tries to feed me up. Has your wife tried or made any dietry changes at all?

KC

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I'm new to this wonderful site and would like to know where to find the vasculitis roadmap as well. I will search around when I get some time, but please send a link or directions. Thanks for the advice.

Jessi

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Hi,

Good news about your drug reduction and clarity, long may your improvement continue.

I am going to message you (or message me as needed), as I will not be checking this site again for some time. Not constantly reading about Vasculitis is part of both of us lowering our stress levels and getting "normality back" (after a recent hiatus)!

The roadmap can be obtained from John & Suzi on this site. It is a booklet. Make a donation and get several copies to hand around!!

We try and use the same Urine Tester as our GP. ATM we are using "DUS 10" (Health Mate - DGi Co Ltd) & track Leukocytes, protein, blood & Billrubin. If we want Urine Creatinine or Protein Creatinine Ratio we go to the GP.

Previously we tracked (weekly & then monthly) FBC/Liver/Kidney & Immune system bloods (& Urine) against symptoms to look for trends & relativities, rather than absolutes (ref Alan Salama's paper on this site). Now we test only when symptoms or new conditions arise.

The grey area's are everywhere of course and each patient is different and as C has "felt" well for over a year now (despite tiredness and minor rash flares) we just get on with life.

In the back of our minds we think about slow long term Kidney issues, so we stay alert. We listen to experts who make comments like "of course you have elevated IGA" and "the shape of your IGA may be passing through kidney walls causing trace results", "with normal GFR you're fine".

Pre diagnosis C had major Sinus and Eye issues (as well as Strep A infections - classic theoretical trigger). I obtained her full medical history and analysed it the best I could. Hence when we saw an ENT specialist, we were talking of Vasculitis and he was talking about Virus & Infections! This is one reason why we saw a Immunologist, as even though Anti histamines may not be prescribed for Vasculitis HSP, they do help in C's case, with what I'll call Vasculitis "coincidental" issues.

Good luck.

JTRP

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Thank you. I will follow all of it up. So much is trial and error but anything that can keep us feeling well is a good thing☺. Here is to staying in the good zone and getting on with it 🍻

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Kc, I am also HSP IGA nephropathy. I had it when I was 29 and I was all settled and off pred and pain pills in about a year. Now I am 44 and have had the same disease process repeated, starting at about 41 years old. It seems in remission and I don't get skin flares or kidney damage as I go down on prednisone. But it hit me a lot harder this time. Lots of pain and swelling of joints. I am at 5mg pred, and I don't feel like I can go down another notch. Considering trying for disability help until I get this fully under control, but that appears so difficult. I'm in the US, and the criteria for disability is so difficult to document with a disease process that nobody seems to understand.

What meds are you taking for pain? How do you function? Are you able to work? I fear I may have to leave my teaching job. Feeling so conflicted, but my kids and coworkers deserve someone who can get out of bed every day and think and physically function. I'm pretty sure that was the baseline on my application when I began at this job! I'd love to hear your story, if you want to share. Thanks for listening. Good luck to you.

Weird to have a childhood disease as an adult.

Good luck to you!

Jessi

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