Posted , 6 users are following.
I've been reading some studies which shown improvement in symptoms. I am a 30 yr old male and have chronic HSP which I have been dealing with it for about 14 years now. I mostly avoid certain food triggers but wonder if tonsillectomy will further help.
Thanks
0 likes, 6 replies
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blueflamingo peter48360
Posted
Hi, I am a 32 year old female who has had ongoing HSP for about 9 years. I spoke to my doctors after reading studies about tonsillectomies and was referred to the ear, nose and throat specialists. I showed them the studies and they said they were willing to try if I fully understood there was no guarantee of an improvement. I jumped at the chance to try something - particularly as my tonsils had remained large since having tonsilitis and the HSP had started following a sore throat.
I was booked in and arrived at the hospital for the operation in due course. The actual surgery was to be carried out by a surgeon who I had not met in my previous appointments. He flat out refused to do the surgery because there was no 'proof' of a link to HSP and I was sent home (very disappointed).
You don't mention if you are in the UK or not, but if you are, you may have problems convincing a doctor to actually carry out the surgery unless you have persistant bad tonsillitis.
You do mention food triggers - have you found anything to avoid? I know to avoid alcohol but haven't found any other triggers. I'd love some new ideas to try.
Thanks.
MrsBoshell14 peter48360
Posted
michael_93524 peter48360
Posted
natalie77410 peter48360
Posted
I am interested in this also. I have been prescribed dapsone that has cleared the rash but if I forget it comes back straight away. I live in Australia and the doctors won't take tonsils out unless you can prove you've had recurring tonsilitis. I was going to gather all the times I've had it and see if that helps, but would need to go through a lot of different doctors to get evidence. And then there's $ to think about - not sure if the whole surgery is covered my medicare.
peter838731 peter48360
Posted
Peter here again some reason can't login to my other account. I didn't realize people would actually see my post but it's clear this is a very active community. I appreciate everyone sharing their stories so I will share more of mine.
Although I have had HSP for many years I've been able to manage most of my symptoms through my diet. It took years of trial and error but I finally discovered the AIP diet which I attribute to about a 90% improvement in my symptoms. The only time I get a flare up now is when I am exposed to some type of upper respiratory illness. I currently have a sore throat and the rash has reappeared which is why I wondered if a tonsillectomy would help further.
In the past I have tried Prednisone, Dapsone, Rituxan, IVIg, Sulfasalazine. While they have all helped my symptoms reappeared quickly after discontinuing the medications. I obviously prefer to not be taking medications long term for fear of side effects. I was on Prednisone for about 2 years on and off, Dapsone for about 1 year which helped but I developed anemia while on it, Sulfasalazine helped a lot but after 4 years on it my ears started to ring so I had to discontinue.
I am in the US and while my health insurance has been able to cover most of my treatments it was a battle. I had to pay out of pocket for my Rituxan treatment (I believe around $20,000 USD) initially then fight the insurance company to reimburse me. After the whole battle it ended up not helping at all.
My kidney is functioning well according to tests I have small trace amounts of blood in urine but nothing substantial luckily.
So just to clarify I've tried many medications with little success but found substantial success through a strict AIP diet. I've eliminated dairy, egg, gluten, grains, nuts, alcohol, etc. It's hard but very well rewarding when done correctly. I know what may help me may not help others but I highly suggest giving it a try!
michael_93524 peter48360
Posted
Wondering how you are? Can I ask what your serum Creatinine levels are. You said that you have traces of blood in urine. I am. Asking cause my son was diagnosed with hsp when he was 14 on 15 4 years ago and has kidney involvement. He has shown mainly traces of blood and on occasion traces of protein but his serum creatine has been on the rise the past 18 months. It remains within normal range but it greatly concerns me.