Any improvement in HSP with Tonsillectomy?

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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

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  • 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.

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  • Posted

    14 years!!?? And I thought at 33 and dealing with it for 8 years was rough. Do you still have flare ups? Is yours mild or get worse each time? Would love to know more as I struggle alot with mine.
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  • Posted

    I have a question. In all those years did the hsp affect your kidneys?
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  • 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.

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  • 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!

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