Henoch-Schonlein Purpura :: Left Me With Stage 3/4 Kidney Disease
Jan 30, 2013
I'm a 37 year old man who was diagnosed with HSP in 2007. My symptom was the rash which appeared all over my legs and buttocks. The rash went away but left me with stage 3/4 kidney disease. I feel very scared this will lead to total kidney failure. My recent results doesn't look good with my creatine being 216. This has ruled my life and I'm so upset this could happen to me. The doctors don't know anything. All they have done is put me on 10mg of Ramipril and basically hope for the best. I'm getting married in July to my beautiful fiancé who I love so much but I seem to focus more on this disease and what might happen to me in the near future than her. I'm going to try an alternative way to help my condition. Systematic ideology (excuse the spelling) This focuses on strict diet control, with taking 100 percentage herbal ingredients. The therapy focuses on targeting muscle groups and emotional part of the body. Has anyone else tried this? Would love to hear from anyone in the same boat as me and is there anyone out there that has been in the same situation and continued in stage 3 for a very long time.
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I had two bouts of HSP when I was a child. The first lasted a couple of weeks when I was about five. The next bout lasted for 4 years - from the age of 6-10 years old.
I've never felt truly 'well' and have now been diagnosed with Chronic Fatigue Syndrome/ME and hypersomnia (it means I want to sleep at the time) I was wondering if this could be an aftermath of the HSP?
The rash has gone and so has the swollen and tender joints. Urine samples come back as normal now (not +4 protein and blood in it like when I had HSP.) unless I have a UTI.
But I still have the same abdominal pain and tender joints (without the swelling) and muscles. I feel constantly fatigued and can't seem to put weight on. My immune system is weak and I seem to catch every bug going around.
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My Daughter who is 9 has just been told she has hsp, although at the moment she seems ok apart from very bad rashes all over her body and just started a cold.
Is this likely to get worse ? or is there a very mild type of hsp she may have ?
After reading other peoples experience's we are very concerned for the future.
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Five days ago we rushed our four year old son to A&E where we were told he had HSP. the hospital were wonderful made our son comfortable on the ward and we got settled for the night at his bedside. we now have a nurse coming once a week to check on him and i have to check his wee in a morning ( which has been clear so far).
I was under the impression he was getting better so i let him go to school and since he came home his ankles have swollen up like balloons though he says there not painful.
i don't know now if i should allow him to return to school or maybe if he could go half day. he loves school and i know he wouldn't get any rest at home as he has a two year old sister. I am really unsure of how to treat this disease as you never seem to know what the next hour is going to bring let alone the next day.
we are praying that this does not spread to his kidneys and stomach as it hasn't done yet.
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My fourteen year old son was diagnosed with HSP about eight month ago about the same time he started wearing braces for his teeth, recommended by our dentist. Initially he had stomach pain, swollen ankles, etc. In and out hospital emergency rooms five or six times. Eight month later, rashes are still here. Doctors could not help, no cure. As parents we suspect it is something to do with his braces. We will visit our orthodontist tomorrow to seek his point of view. Does anyone have same experience with braces?
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My 15 year old daughter about 4 weeks ago came out in an alarming blood rash under her skin on her legs and arms. She had a little blood in her urine but otherwise blood tests were fine. Doc thinks it HSP following a sore throat although this was only mild. On reading the symptoms of HSP most don't apply to her. She's had no sore/swollen joints. The rash seems to clear a little then come back worse again. My question is does anyone know about or experienced a rash like this whilst wearing tooth braces. She's had them for almost a year now. I am allergic to nickel and I've read that nickel is used in Orthodontics often coated so this can wear off over time, which could explain while the condition has only surfaced now. She is close to having them removed so am hoping it may resolve itself as she is very distressed with it.
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My 6 year old has HSP, she seem's well considering, but the rash and swelling is unreal and looks terrible, I wanna help somehow but other than pain killer's for swelling I have no idea what else I can do
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Has anyone ever used medical cannabis to help treat HSP in children? My 13 year old nephew was diagnosed with a severe case of HSP and was recently released from a week stay at two different Hospitals in Arizona. They have him on two different blood pressure medications (the Hsp caused him to have very high blood pressure) and told him he could take tylenol for the pain along with weekly urine tests and monitoring his blood pressure daily. However, since he's been home from the hospital (3 days now) he can't eat, the pain in his joints, muscles, and stomach has yet to diminish, and his rash has flared up again (ankles, thighs, back). He has zero appetite and a lot of pain and discomfort. I'm curious to seek out treatment that involves using medical marijuana with less THC and more CBD, which i've been told is safe to give children (less of a high but helps relieve pain and nausea) and help get his appetite back. I know medical marijuana is super controversial, especially with children, but it seems steroids and pain medication from doctors has a long list of side effects and other problems.
If anyone has ever tried medical marijuana to treat HSP, please let me know. No doctor will ever talk about or advise us when it comes to outside remedies.......but i'm thinking outside the box, we need to get his appetite back and help lessen his pain.
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How can I improve my Stage 3 kidney disease, having a G.F.R. of 34?
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I have just been diagnosed with CKD stage 3 (GFR 48) and I can't understand why. I have low blood pressure and don't have diabetes. I am slim fit and healthy and age 52 so not that old. I also have a low white blood count. Can anyone shed some light? My GP does not seem worried, and so nor should I be, but I feel uncomfortable not knowing what has caused this.
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Is it me or is this stuff a waste of time?
I've had obout 20 lithotripsy's in 15 years of having continuous stones. They've never gotten my kidney completely empty of stones ever. I've had lithos, ureterscopy, PCNL. On meds but they can't seem to stop them from growing. I avoid alot of the things that cause stones or limit them. Got to have the 1 cup of coffee in the morning
On the day before litho, your suppose to eat light ( nothing that leaves residue in bowl) but they say you can have white bread or boiled chicken. (Why bother?) I usually only eat jello, gatorade, and just broth. Plus tons of water. The instructions say to drink the magnesium of citrate after dinner. Well to me dinner is after 6/7. But I thought this time I would take earlier since last time didn't start to move the bowels until i was in the hospital. Plus this stuff is awful- taste bad- even refrigeration like they suggest doesn't really help. Twice in past I threw it up.
So I took at 5 pm thinking it would work earlier. Nope. Nothing. Just stomach cramping and it finally started around 5 am after me getting up every hour during night. Still was working again while in hospital.
There has to be something better (tasting) and work faster. Plus less side effects. Or they should change instructions & say take a noon. Next litho (in 2-3 months) I'm taking a 1/2 day off day before and taking at noon. Maybe then can get a little sleep the night before procedure.
Sorry- felt like ranting as frustrated as its been two full days since litho and nothing passing yet. Plus I have a bad back (2 surgeries) which makes it hard to do the exercises where you drink 2 cups water, wait 30 minutes, then elevate kidney @ 45 degrees and stay like that for 30 minutes to try and get the pieces to move.
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I was just wondering if anyone has protein in their urine with Chronic Kidney Disease and what did your doctor do about it if anything. I am trying to keep my GFR stable. The last time it went up a bit but am worried about the protein causing more damage quicker.
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Is it possible to have CKD or kidney failure without protein in urine?
Last week my masseuse found a knot in my back that she suspects could be inflammation in my kidney. I've had some weird symptoms popping up over the last month like foot/ankle swelling, profound fatigue, leg cramps and blurry vision. This last week though I began developing SEVERE flank pain (like 9 on a 10 scale), back pain (started out lower, now entire back), horrible nausea, horrible headaches, shooting pains down my legs, metallic taste in mouth, dizziness and loss of appetite. Not to sound melodramatic but I feel like I'm dying. The pain is constant but the intensity seems to be moving in 24 hour cycles. Today I feel awful but I was able to shower/get dressed. Yesterday I couldn't even get out of bed. I slept for 16 hours. It's been going in that pattern for the last week and a half.
My doc did a urine culture last week, got results today and there was no protein in my urine, but I had 3+ ketones and a large amount of leukocytes. Blood work from a month ago just came in and my kidney numbers were off a month ago: BUN (32), Creatinine (1.8), eGFR (33). Between the symptoms and the blood test I'm thinking it sounds like renal failure, but could it be CKD without protein in the urine?
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Just had tests and found out only one of my kidneys is functioning, I also have blood in my urine. Just wanting to ask if I should be feeling so tired and drained. As far as I know the other kidney is ok dont know for sure until I see the urologist but the doctor who done my cystoscopy (which she said was fine) looked at results from scan and told me the left atrophic kidney is not functioning at all the right one is fine. So why am I feeling so tired. Has anyone else had a similar experience and also she said I could have been born with it?? With what? A small kidney or a non functioning kidney?
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Does anyone have any experience with this topic? I was told I have stage III kidney disease due to lithium use. Is there a likelihood that it can be stopped in this stage because it was caused by a medication, or will it follow the same course of progression as other causes?
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My creatinine just found that 1.66 what's problem how long can I live
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My Gfr is now 31. I take Metformin with insulin for diabetes type 2. I have terrible diarrhoea with metformin so want to change it also is it true that one shouldn't take it with a GFR of 30
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I was healthy and happy then got a headache so bad that 6 migraine excedrin did not touch it. Went to bed and woke up in middle of night with my entire left side numb and tingling.
Went to er they told us i had a bad migraine. Over the last month symptoms have worsen. Pain in left back of head hurts all the time, left side is pain, and spells of dizziness.
Two mri later, going for a third, clean blood work, eeg, many trips to er and no answer
After talking to an aunt found out she has meniere's-disease so we are going to a ent next.
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52 male. Lithium toxicity three years ago, six months later creatinine was 1.5. Nephrologist wasn't concerned because of my body mass. Last week my creatinine tested at 1.66. Nephrologist appointment in two months. I'm scared, terrified of dialysis.
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During my annual physical in June my Egfr reading was 55 and my Creatinine reading was 1.34. The test was repeated in October and the same readings were found. Is this anything to be concerned with? My GP has referred me to a kidney specialist but my appt is a few weeks down the road.
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I have been having some strange symptoms that my doctor can not figure out what is wrong with me. I have hives and extreme all over my body muscle pain when moving. When I'm sitting still I'm fine. When I walk or move my large muscles they ache as though they have been maxed out and strained.
I have had all kind of tests done including checking for auto-immune problems but everything turns out normal. However they told me "normal" on all my bloodwork, my test results show that my Bun/Creatinine ratio should be 6-20 and it is 20.9. The doctor did not seem concerned about this. But I get online and the ********** website says "A normal BUN:creatinine ratio is 15:1, according to "Renal Pathophysiology." When the ratio approaches 20:1, it suggests a problem with blood flow to the kidney; this may be caused by conditions such as heart failure or shock"
Okay. Should this concern me especially after having hives for the past week and extreme and progressively worse muscle pain for the past week?
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