The symptoms started about a year ago, and like many cases of HSP the diagnosis was tedious, confusing and long.
So far, I have realised that the disease is rare enough for doctors to make mistakes and wrong diagnoses as well (they are human after all). Another thing I have realised is that the symptoms vary per patient. In my case the flare is continious, although the amount of spots do vary; so I might as well call it a permanent dynamic rash. Often the severe rash is accompanied by leg edema and sometimes with a fever. Furthermore, I often have pain in my stomach (at least once a week), making it hard to get my work done. And I feel tired and apathetic (I genuinely feel sorry for my loved ones and colleagues, since I do not feel as the same person I was before).
I am a adult woman in my mid twenties and lately I have been feeling like a 60 year old woman (supportive stockings included......, which I can guarantee is not as sexy as it sounds...). I have had to make serious alterations in my daily routine (less sports, no alcohol, fewer parties) and yes I think I have now reached the point where I can say that it is starting to get a bit annoying. I feel guilty towards my loved ones for being such a sorry sack and at the same time I feel like I would love to crawl up in a bal and stay in bed for most days. It's hard to pretend towards my friends that everything is "fine" and no I am not pregnant, I am just not drinking. It's hard to keep up with the work I love doing at the same level I used to (I loved working late getting lost in my thoughts and theories). It's hard to be the person my partner fell for, since I am clearly not the same person any longer.
Long story short, I am quite the stubborn person and usually I would not talk about these things (it feels like a weakness). However, I have realised that I might need another friendly face with similar experiences to talk to about these things. And I promise, I can be a good listener too
Have you been referred to a rheumatologist or dermatologist? My son who is 16 and taking his GCSE's this year has had HSP for 15 months. His symptoms are rash which never goes completely just flares up, intermittent joint pain mainly knees or ankles and muscle stiffness, abdominal pain occasionally. Try Ranitidine for the stomach pain and keep on it for a few days after pain has gone. He can take 150mg doses twice a day.
Only this week we saw a rheumatologist for the first time and was going to be prescribed some medication but after blood tests have shown his kidneys are now not working properly this has been put on hold. Biopsy to be done on Monday and then I think steroids, last time he had biopsy last August his kidneys were fine.
Anyway, I can completely understand how you feel different to the person you were. This illness is debilitating and anyone would be fed up with it after such a long time. My son seems to just "live with it" and manage his symptoms however the set back with his kidneys has upset him and made him frustrated with it all. If we knew how long he was going to have it we'd have something to focus on but there's no answer to that question.
Your family and friends will see what you are going through and I'm sure empathise with your situation. Have they read up about it? I ask people to search on the internet because nobody's heard about it. I often say he'd have been better off breaking a leg; it's easier to explain and he'd have fully recovered by now!
Don't let this awful illness beat you though, try to keep strong and positive. I hope you soon start to improve and eventually make a full recovery.
Thank you for the supportive words, indeed a colleague said a similar thing about breaking a leg.
It is awfull to hear about the setback with your son's kidneys. Usually a kidney biopsy is more invasive than a skin biopsy, so I hope it will go well! My own kidney's function declined a bit as well (I went to the hospital and all). However, now I have blood/urine check-ups every three months to make sure the kidney function does not deteriorate more (if they do the probable course of action is indeed steroids).
In any case, after the first setback they are now funcioning better again, so there is a big chance for your son as well. Do keep track of the medication he is using. My kidney function became worse when using painkillers like aspirin or ibuprofen (called NSAIDs), which have an antiinflammatory function. However, NSAIDs are also bloodthinners, and it is blood thinners in combination with bleeding/inflammation of small capillaries that might cause problems in the kidneys as well. So my doctor is telling me to not take any NSAIDs any more and only use painkillers like paracetamol.
He had a biopsy last August under general anaesthetic so it went fine and didn't have any sickness after or even need to sleep it off. He now seems to be suffering with a sore throat so it might have to be done under a local this time which would be a completely different experience.
He hasn't taken any drugs with ibuprofen because his kidneys have been leaking protein & blood from the beginning.
I'm glad your kidneys are better now hopefully his will recover after steroids.
He had one last August under general anaesthetic so didn't know anything about it! He had no reaction after having an anaesthetic, got back to ward and watched a film!
Hi Helen, my daughter is 15 and had now had HSP for 18 months now. She had her second biopsy last December. She now has only 19% kidney function and will need dyalisis soon. We are at GOSH but hope to move to Birmingham as they are much more qualified in the understanding of HSP. Most of the meds my daughter has been given she finds the HSP makes her vomit hours after taking them which doesn't help, so now the same drugs are given in smaller doses and we are hoping to up the levels, i.e., her haemoglobin is around 89 instead of 120 and the injection made her so ill. Now she's on an 8th of the dose she needs with half a anti histamine taken 30 mins before. I totally understand your frustrations and worry. I find my daughter needs to sleep at least 12 hours per night and a nap in the afternoon. School is and has been a major problem to get to, however work sent home has kept her in the top sets as she's prettyself motivated.
We have always been told there os no light at the end of the tunnel as even if my daughters father and i are a match, the HSP could kill the donor kidney too. GOSH have had no teenage survivors in the past 10 years!
As my daughter is 15 the stakes are much higher for Nephrotic syndrome and end stage kidney happening, especially if you have blood and protein in your urine for a year (+4) and are not looked after until it is too late!
She is on calcium carbonate (3 x a day) as calcium acitate makes her vomit, instead of the Darby injection for haemoglobin she's on another formula but a much smaller dose, she also needs blood pressure meds, so far two of them make her vomit so tomorrow she will be tried on a third, 400 mg of iron and vitamin D again only a small dose as she vomits the higher doses. All the vomiting happens between 6 and 12 hours after the meds which is why we have started with one and slowly are building up more and more. At some stage soon she will need to have a fistula and then within 6 weeks dyalisis, however if she cant manage the meds, no dyalysis!
Sorry to hear that your daughter had to go through all this.
HSP, if detected and managed properly in children, should not go to nephrotic stage. These things would happen in seniors/adults cause their immune system is weaker. This is rather annoying and very sad.
I know which is why I am unhappy my daughter's rate of survival is slim as any new kidney introduced has a much more significant chance of getting attacked again and we will be back to square one with 4 or 5 years of dyalysis then death! What a fantastic life sentence my daughter needs to suffer because of negligence. Makes you feel so good as a parent as there is NOTHING you can do to help your child.
I am pretty much in exactly the same situation as you. I'm 23 and have had symptoms for around 18 months now. The rash was constant and painful and the stomach pain never fully went away, I also had joint swelling that meant sometimes I couldn't walk. Some days are better than others but I never know what kind of day it will be when I wake up. I have been treated with high dose predisone which I have been weaning off for the past four months. Every time I dropped down a dosage my rash came back severely and the stomach pain was bad. But I hate prednisone so I just kept going. I'm now down to 12mg and I get symptoms even without dropping down. My doctor has doubled my Imuran dosage to 50mg to try and get off the prednisone and then I'm hoping I can go back down to 25mg and then off it completely eventually. I'm not sure if you have been offerred immunosuppressant medication but the Imuran (Azathioprine) has helped with my symptoms, especially combined with the prednisone. They never fully went away but for the first time in 18 months I have seen my legs without spots.
I can totally sympathise with feeling that way too, it can be really depressing to think that you're going to be sick for the rest of your life and a lot of things you had planned aren't really reasonable anymore. Try not to feel guilty because it's understandable to feel sorry for yourself and it will take a long time to come to terms with this illness and get used to it. Hopefully your loved ones can be patient with you even though it's hard for them too. My doctor has prescribed me 10mg/day lexapro (antidepressant) because the prednisone made me quite depressed and it was taking its toll on me and my partner. She said I can go off the antidepressants in about 6 months when I'm off the prednisone and my illness is under control (fingers crossed). I don't like the idea of being on antidepressants but to be honest I feel like we need all the help we can get and if it makes life a little bit easier then why not. [before HSP I saw a pyschologist for help with low mood and anxiety].
On top of not drinking and feeling low, the prednisone has made me put on 10kg and given me acne as well as a "buffalo hump" on my back and a lumpy moon face, so I'm not exactly feeling social. I avoid catching up with friends because I'm embarassed about the way I look and I don't want them to ask what I'm up to because then I would have to explain about being sick. My close friends know and understand but I avoid anyone outside my close circle.
I hope you see some improvement soon and find these forums helpful, it's nice to know there's someone else who understands what I'm going through.
So what druges have you been taking and what is the reponse to them? I had seemingly constant symptoms but when I took prednisone they retreated. Of course they would come back again some time after I tapered off it. My case was unique in that after about a year of this constant issue coming and going I did enough research and tried enough things I was able to narrow mine down to being a chocolate allergy. It's been a year since I stopped and only one time when I accidentally had a tiny chocolate ball in a cake did if flare up so I'm fairly sure in my case. However, I haven't heard a similar story as mine but perhaps some of these cases are due to some allergies as well. Would be curious what doctors and what drugs you were prescribed and how they affected you. Hearing all the different information helps us see what types of cases these truly separate into and which types of drugs seem to help in the different cases. Note: I ate plenty of chocolate regularly so in my case it was something that I became allergic to. I point that out because something must have caused the change in my body and you can't discount something based on being fine with it in the past.