my guttate, my tonsils, and me

[maymay24]

Hi all!!

New here and I've never posted anything so I'm hoping this works. Anyhoot I am a 21 year old college student who has severe guttate p brought out by strep infections. I'm currently going through UVB treatments, and it is (oh-so-painfully) slowly going away. I was working in an elementary school last semester and caught everything my enlarged tonsils could handle. My friends were making fun of how often I was sick, but in the back of my mind I kept wishing I wouldn't get strep because I knew what came next. And, of course, I got it. Within one week my whole body was covered, except my face which I am so thankful for. The kids I worked with kept telling me I shouldn't be in school if I have "chicken pox". This was in May, and since I go to school in Boston we have absolutely horrible cold weather for most of spring, so I got to cover up and not look like a total oddity in long sleeves and pants. When it started to get warmer, I started to get sadder. Isn't it just so much fun covering up when it's 85 degrees?!? My friends were amazing in their understanding, but at times I felt I was putting on that happy face and going with them at bars and other Boston events that every 21 yr old should enjoy. I pushed for the really dark bars, but even then I would constantly adjust my clothing so my p wasn't (that) visible. Oh and two weeks ago I went to the beach, it was the most nerve wracking experience of my life!!!! But b/c of again, awesome friends I had a spotted good time.

There's some history and here's the question that I need help on:
Last week I just went to the ENT doctor, hoping that I am eligable for a tonsillectomy b/c of of my p, and he said he would do it! I almost peed my pants right there I was so excited. I'm getting a second opinion this week from another specialist. If this doc gives the thumbs up then those bad boys are coming out in mid-Aug!

Please, post any stories that you may have or know of about tonsillectomies and p!

Thank you, and I'm quite glad I've joined you all~ This seems like a nice clan
-May

[RichJ]

hi may,
sorry i can't help much but welcome to the p family. you will met alot of wonderful people on here and find alot of great info. welcome and nice to meet you. more will come through and help you

have a good day all

richard

[MikeK]

Hi May,

Welcome to the Board! Nice to meet you. I'm sorry to hear that you're going through such a rough time. I hope and pray that the UVB treatments work for you.

First, the NPF's annual conference is going to be in Boston the weekend of August 5–7, 2005. I'm planning on being there and so are a lot of other people who post here. I went to last year's conference in San Diego and it was an awesome experience. I was first diagnosed with psoriasis in 1964 and I learned a lot about my disease and the various treatment options for it. I also can't tell you how much it meant to be in the same place at the same time as other people who were going through the same thing as me. (A few people were so overwhelmed by the experience that they broke down in tears in a fancy hotel lobby.) Since you live in Boston, it would be great if you could join us. Here's a link to the details: http://www.psoriasis.org/events/conference/.

Now that that's out of the way, here's the links to some previous discussions about psoriasis and tonsillectomies (some of the people who participated in these discussions no longer post here):

http://www.psoriasis.org/forum/showt...=tonsillectomy;

http://www.psoriasis.org/forum/showt...=tonsillectomy;

http://www.psoriasis.org/forum/showt...=tonsillectomy.

I hope this helps.

Good luck. Feel better. Keep us posted. Please don't be a stranger and please consider coming to the Conference. It will be a great experience for you.

Mike

[maymay24]

Thanks for the welcome guys, and thanks for the links, Mike!

PS- I kept itching in one of my classes today and the girl sitting next to me was giving me this cock-eyed glance. It was great. the end.

[kasieg]

I too am getting my tonsils out in about September. I also think that my tonsils have a lot to do with my p. I also have tonsil crypts which are disgusting and the main reason for the removal of my tonsils.
I also have extremely swollen lymph nodes that have been enlarged for 4 years straight now. With no cause found. I've been on numerous drugs, had a biopsy, lymphoma screening and nothing to result in the swelling of them.

Good luck and let us all know how it goes. I am 23 and have had p for 4 years.

[maymay24]

Kasieg-
Dude, I'm sorry-- it sounds like you had to jump through endless hoops!

My p and me are getting quite excited for this operation. Good luck to you and keep me updated! And think in two to three months we, hopefully can be wearing skirts and tank tops again (weather permitting -- ahh hell i'll run around naked if everything clears up!)

[chaimFL]

Good luck MayMay!! There is a lot of evidence that a tonsilectomy very effective in treating guttate psoriasis. Many studies indicate that it may very well prevent future outbreaks or at least lessen the severity.

As always with this disease, we have to keep in mind that not all therapies work for all people. Based on your description, I have a good feeling that you will see good results, but never be over confident because there are no definites with P.

[maymay24]

Thanks chaimFL! Yeah, you know you think it's getting under control and you get super happy-- then it turns around, flares up, and says "I ain't going no where sucka!"
Anyways, hows Miami holding up through all these storms??

[chaimFL]

So far the storms are staying away from us. I just hope this hurricane season is not as bad as last years. This is our year to year fight...hurricane warnings are second nature to us.

[sergecosta]

Hey May!

Good luck with the tonsillectomy.

I got chills when you said that you too feel comfortable in the darkest bars. Strategizing that way can be so fatiguing. I occasionally do that depending on how I feel about how my skin is doing - and I am mild. I hope that after this procedure you don't have to do that anymore.

From a fellow Boston student,
Serge

[chafenstine]

HI May May~

Can you tell me how your tonsils turned out for you? My ten year old son, now 11 had a sore throat last December. He has since broken out with severe guttate psoriasis covering 50% of his body over the last nine months. My heart breaks for him. Although he has handled this like a trooper, there are many days he doesn't want to get out of bed because he says he hurts to bad. He has worsened with sore throats but he never tests positive for strep and they won't treat him with medication. Three weeks ago, he had a sore throat and his Primary Care Doctor was out town, the partner would not give him an antibiotic and the dermatologist would not return my calls so he worsened. I had heard about having tonsils removed to help guttate psoriasis and at this point, we were desperate. My son has done 5 days a week for 14 weeks of narrowband UVB with Coal Tar in addtion to 5 months of Cyclosporine with no relief. After pleading with the Primary Care Doctor when he came back in town and a bout with MRSA in my son's plaques, he referred us on. My son improved some in the next couple of weeks from the Augmentin he was taking for the MRSA. We had the tonsils taken out Tuesday of this week and they found an abscess on them. I hate to say because I don't want to jinx him but his plaques have gone from thick, scaley, bleeding to completely thin and just white spots on most of his skin. I can hardly believe that in just over 48 hours there has been so much improvemen when we have had no relief with all the other treatments and meds. I almost hate to get my hopes up so I am wondering how it turned out for you.

Thanks!

[evergreen]

Thanks for the post...my 8 year old just got her tonsils out today; she had strep throat 5 times this year...I just realized that this may keep her from getting P and/or some form of arthritis...don't know, but I have always prayed this disease stops with me...my wife has rheumy, I have P & PA.

Take care~

I just said a prayer for you.

[RichJ]

HI May May~

Can you tell me how your tonsils turned out for you? My ten year old son, now 11 had a sore throat last December. He has since broken out with severe guttate psoriasis covering 50% of his body over the last nine months. My heart breaks for him. Although he has handled this like a trooper, there are many days he doesn't want to get out of bed because he says he hurts to bad. He has worsened with sore throats but he never tests positive for strep and they won't treat him with medication. Three weeks ago, he had a sore throat and his Primary Care Doctor was out town, the partner would not give him an antibiotic and the dermatologist would not return my calls so he worsened. I had heard about having tonsils removed to help guttate psoriasis and at this point, we were desperate. My son has done 5 days a week for 14 weeks of narrowband UVB with Coal Tar in addtion to 5 months of Cyclosporine with no relief. After pleading with the Primary Care Doctor when he came back in town and a bout with MRSA in my son's plaques, he referred us on. My son improved some in the next couple of weeks from the Augmentin he was taking for the MRSA. We had the tonsils taken out Tuesday of this week and they found an abscess on them. I hate to say because I don't want to jinx him but his plaques have gone from thick, scaley, bleeding to completely thin and just white spots on most of his skin. I can hardly believe that in just over 48 hours there has been so much improvemen when we have had no relief with all the other treatments and meds. I almost hate to get my hopes up so I am wondering how it turned out for you.

Thanks!

hi chafenstine,
sorry to here of your sons p and glad it's clearing some what. sorry i can't help much but welcome to the p family. you will met some of the wonderful people on here and will find alot of great info. welcome and nice to meet you

try and have good night all

richard

[kesu422]

Hi! My daughter developed P when she was 7 after a strep infection. She had them frequently and always had a more severe break out afterwards. Finally the Derm. suggested the tonsilectomy when she was 17! Since the tonsilectomy she hasn't had any major flair ups and she is 22 now. Good luck! I think it will help you!

[Casey Paige]

Hey my name is casey and I am a 22yr old female.

I once suffered from guttate psoriasis and I know all too well the different emotions felt by the person suffering from this condition. I want to reach out and share my story with people and if I help just one person that would be fantastic...

I was 15 when I suffered from first step throat and within two weeks I had developed a red rash across my stomach, multiple dots, that seemed to be spreading at such an alarming rate than within a couple of days it had spread to almost 80% of my body!! I kept enduring strep throats and tonsilitus one ontop of another so my psoriasis would only flare up much worse with every episode. Little did I know that guttate would be apart of my life for the next 5 years.

Over the years I visited, GP's, psoriasis specialists, clinics and tried endless lotions and potions. Everything from special formulated cream imported from overseas, a strict acid free diet which I stuck to for almost a year, dead sea salts, rubbed myself in maluka honey, heat beds and off course the sun! Some of these things did give me temporary relief but as soon as the strep throat returned so too did my red bumps...at this stage I was so desperate and I felt myself slipping into a severe depression. I felt alone and very scared about the future.

I lost my job, refused to see my friends, hibenated in the summer months to avoid people stares and found that my life was basically sliping through my fingers!! I needed an answer and one fast.. I started searching the net for any new treatment seeing the professionals were not helping my quest.. I started looking on forums for solutions and came across a story about a girl my age who was in the same situation. She had a tonsilectomy and was completely clear of her psoriasis and had been for years. I thendid my own search of the net to see what else I could find on the procedure and to my suprise other people had the same results amazing results.

I had been visitng my GP for years about my tonsilitus and he never once recommended me see any ENT(ear nose and throat) specialist which should have been considered years earlier.

I spoke with my mother who was just as desperate as I was for a breakthrough, she would have done anything to clear me and to make me feel better!! We were so excited, we contacted the surgery and organised an urgent appointment!!

The morning came and we met with the specialist, we told him my history and explained our hopes for a answer to my psoriasis. Suprisingly he had heard of a few people who had their tonsils removed which therefore cleared there psoriasis. He told me that my tonsils were to be removed and that they were the worst he had seen in his 30 year profession also expressing his disappointment that they weren't removed earlier. I was also told that he couldn't promise me anything which is understandable but I couldn't control my emotions and broke down in his room. He scheduled the procedure for that coming weekend. He also gave me a week's worth of antibiodics to stop me developing an infection leading up to the surgery!

The morning came and I was taken to the hospital very anxious but very excited at the same time! It was a 45 minute procedure and everything went well. I was even allowed to go home the next day. The Dr also told me that I can no longer get a strep throat or tonsilitus again with no tonsils...so therefore no guttate...

My operation was in 2004 so I have been clear for almost 3 years and have never looked back!! I can now enjoy going to the beach and living a normal life again...

Please consider a tonsilectomy even if the doctor says that it's not necessary keep trying until you find one who will do the procedure. Book into seeing an and ENT specialist..I am living proof that this really has changed my life...I am writing this post to hopefully reach out to the people who are suffering just like I did. It's worth a try, you have nothing to loose and everything to gain!!

Please write to me if you have any questions I am more than happy to answer any concerns you may have

[RichJ]

hi Casey Paige,
welcome to the p family. you have met some of the wonderful people on here and will find alot of great info. welcome and nice to meet you.

have a good night all

richard

[dreaned32]

HI, I have had psoriasis for almost six years now...It developed a couple months after having tonsilitis. Doctors have told me that the two have a connection but never told me to think about having them removed. I currently went to an allergist to see if maybe my psoriasis had something to do with food, which i have read about. He was the first doctor to suggest this to me...not even one of the 10 dermotologists i have seen. It is awesome to here this could be a possiblitiy. I am going to see if i can get mine removed asap. I do have sore throats occassionaly and get crypt in my tonsils. I hope this will work Thanks for all the stories and advice.

[P. Addict]

can you get strep if you've had your tonsils removed?

I also have extremely swollen lymph nodes that have been enlarged for 4 years straight now. With no cause found.

are lymph nodes the things in your throat? coz mine have been swolen for about 4 years now too, gives me trouble swallowing if i'm lying down in bed for example.

possibly some connection?

[RichJ]

hi dreaned32,
welcome to the p family. you have meet some of the wonderful people on here and will find alot of great info. welcome and nice to meet you.

try and have a good weekend all

richard