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TOPIC: My Stroy :)

My Stroy :) 8 years 2 months ago #15920

  • StephanieLouise
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I Was diagnosed in Aug 2007 when admitted to hospital with the purpura rash all over my body...the seat belt on the way to the hosp had caused a massive bruise on my stomach which was rather scary. I has all the steroids (low & high) with the usual rise then fall when the steroids where sto...pped the count dropped so they were no help.
I was then given immune globulin to which i took an allergic reaction to & ended up with swelling to the brain.
I was then tried with high dose vitamin & dapsone with a slight rise but nowhere above 40k.
Drs then decided that removing my spleen was the only option i was then given steroids to raise my count to a level that an operation would not be too much of a risk. I had my spleen removed in Oct 2007 & had high counts for the week after with 700k as a high.
This rise again was short lived and by December i was again admitted to hospital with a count of 12k & was again put straight onto steroids & given platelets.
In Feb 2008 my consulting was fighting to get the local NHS health board to approve it for me to receive Rituximab, due to the cost (£7000) it looked very unlikely that the NHS would approve for me to have the treatment due to the fact that Rituximab purpose was not to treat ITP. Eventually at the end of Feb. 2008 i received my first of 4 treatments of Rituximab. During the first & second treatment i was admitted due to the risk of an allergic reaction (which with my rubbish luck occurred) the treatment was stopped half way though and i was given anti-histamines & steroids then the treatment continued.
After the stress of my ITP in the first 6 months i never though i would be able to live a normal life and would end up in and out of hospital forever, but since the end of my Rituximab my counts have remained above 100k and in the range of 100 - 300k. From going to the consultant once a week in the beginning i have now been put to 6 monthly appointments.
I don’t have many ITP problems now, except the odd bleeding of gums or easily bruising.


I had just turned 16 when disgnosed and am now almost 20, I would like to hear others stories

xx

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Re: My Stroy :) 8 years 2 months ago #15941

  • Ann
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Hi Stephanie, not too many teens on here so you may not get too many responses from them. I'm an adult with ITP in the UK too. I live in London.

You had a splenectomy really soon after diagnosis. It all sounds a bit quick although it usually does work better for youngsters than older adults so a disappointment that it didn't work.

Great that the rituximab has worked. I got clearance to try it but my haematologist wasn't keen so in the end I didn't.

Just a warning about the gum bleeds. It isn't usual to have gum bleeds unless the count is very low.. under 10 usually, so don't assume it's the ITP causing it. Maybe a trip to the dentist to check that out is in order.

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Re: My Stroy :) 8 years 2 months ago #15954

  • StephanieLouise
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My spleen came out pretty soon because my relaps from steroids were drastic. I would ween off them for a week or two and by the 2nd day off them completly i was back to brusing and bleeding, so they had to find something that would have a better affect as i refused to do long term steroids.
Gums have been checked and there find, i said to the heamotologists and they just said it was one of they things that happend my counts always seem to bounce theses days.

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Re: My Stroy :) 8 years 2 months ago #16007

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Some abrasive toothpastes can cause bleeding gums also, especially the whiteners with baking soda.

Sorry the surgery didn't work. Hopefully, you will have a long remission from Rituxan.

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Re: My Stroy :) 7 years 11 months ago #17889

  • Hdavis619
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hey my names Heather and i found this website and figured it be cool to meet others and see what kind of things they are going through im sorry to hear about you spleean but im glad ur geting to a stable state =).....this is my story When I said I wanted my senior year to be unforgettable this wasn’t what I meant it was back in November when I started getting sick with strep and tonsillitis I was in an out of the hospital with being sick so they decided to take out my tonsils , I was scared but more mad that I wasn’t going to be able to play on my varsity basketball and softball team specially since I was starting string, I got my tonsils taken out in December and got sent home later that day and woke up that night 3am chocking on my own blood cuz something went wrong and I was bleeding every ware, we got to the hospital and they rushed me to the O.R and pumped my stomach of over 20 cc of blood and sent me home I ended up coming back a couple days later with a really bad bloody nose that wouldn’t stop and blood blisters all over my mouth they took my blood and ran tests and told me I had itp my count was at 3k An my hemoglobin was really low I almost got a blood trans I got hospitalized and transferred to the u of m hospital and stayed there for like a week and a half, I had gotten several ivig treatments and responded great minus the reaction I got if there was a side effect I got it, after i get my ivig i always seem to end up back in the hospital for the pain and flu like symtoms, I always have to go back about every 2 or 3 weeks cuz my counts so low when I went to prom I was covered in bruises and looked like my boyfriend beat me but at least I got to go cuz I was so close to not being aloud, its going on 9 months or so now.

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