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Counts down 12 years 9 months ago #855

  • Kim
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  • Diagnosed with ITP in 1983, lupus in 1990, APS in 2001, vasculitis in 2006. Current platelet count 148. In 2007 I had a stem cell transplant for autoimmune disease and currently ITP and APS remission, with a reduction in lupus activity.
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I'm not complaining, but....My count is down over 100k. I've been holding stead at 250-280 for months, but on Tuesday my count was 146. Kind of freaks me out a little bit.

I've been having problems with itching and rash, which is probably autoimmune uticaria. It's better after several weeks of 3 different antihistamine drugs. With the itching and rash, I've had itchy eyes, nose and burning inf lammed sinus, so I'm also on steroid nasal spray and Zrytech eye drops. At least the itching is better, because that was starting to make me crazy.

On Monday I was working on our taxes, sitting for about 3 hours straight, when all of a sudden I had upper back pain. I thought it was from sitting, because I do get stiff and painful pretty easy, so I figured I was done for the day with sitting and went to get a heating pad and lay down to rest. The pain progressed throughout the day and night, so on Tuesday morning, I was having problems breathing and chest pain. I called the doctor and he ordered me to the ER. I was really in a lot of pain, so of course with my history of PE, they did a PE work up, along with cardiac, because I was having shoulder and arm pain and the EKG was a little off.

The doctor ran all the tests and nothing, so diagnosed pleurisy. I've been having some mild pleurisy, but this was unbelievable and required Oxycotin to manage the pain. I have not had pleurisy like that since transplant and am discouraged and worried about it. I upped my prednisone on Wed to 20mg and have stayed at that dose through today, but tomorrow I'll drop down to 10 and see how it goes. I really didn't get any dose suggestion from the ER doctor and didn't call the rheumatologist, because I lost him last month and have not seen the new guy yet. I do have an appointment with him in early March, because the immunoogist who is treating the uticaria insisted I get an appointment with the rheumatologist. I see the immunologist on Monday, so I'll run it all by him.

I'm concerned because of the increased symptoms of pleurisy, the drop in platelet count, the rash and itching...it all just seems to indicate something autoimmune is going on and I hope it does not mean I'll be back to low platelet counts again, because that will make me worry about APS, ITP, lupus. So far my lupus tests remain negative or very low titers. ANA is negative, DsDNA negative, just a low positive Sm and RNP.

I think I'll have the immunologist run another CBC, so I can see what my platelet count is and hopefully it will be up next week. Wish me luck...

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Re:Counts down 12 years 9 months ago #856

  • eklein
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Oh no Kim - good luck. I've had pleurisy from allergy to ibuprofen. Is it maybe part of the whole allergic reaction you are having to who knows what?
Erica
And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K

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Re:Counts down 12 years 9 months ago #857

  • tortie
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I'm hoping that this resolves easy and quickly for you Kim.

Do you have a good site that explains autoimmune uticaria? i quickly looked it up and it might explain what happens to me on a regular basis.

Michelle

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Re:Counts down 12 years 9 months ago #860

  • julia
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Oh I hope it's just a short term blip Kim from a reaction and its back up in no time. Sounds like your in a lot of pain, hope that gets sorted quick too. Get yourself under the blankies and keep warm. Take care
Julia

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Re:Counts down 12 years 9 months ago #866

  • Angel85
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  • I am 27 years old from Australia and I have T.A.R Syndrome. My email address is not showing on my profile for some reason so it is blossom_242@hotmail.com for anyone who wants to send me an email.
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I hope it all gets sorted out quickly and i hope you can get your pain under control quickly as well, take care of yourself try not to stress too much, good luck with it all and let us know how you get on.

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Re:Counts down 12 years 9 months ago #867

  • 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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Kim:

I absolutely HATE to hear this. I'm sorry. I hope you can get things under control soon.

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Re:Counts down 12 years 9 months ago #868

  • tamar
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Kim, so sorry to hear you're having problems. I hope the lower platelet count (which is still great--you know that) is just a blip. Maybe you are alergic to taxes?? Can Jim do them?

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Re:Counts down 12 years 9 months ago #877

  • Kim
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  • Diagnosed with ITP in 1983, lupus in 1990, APS in 2001, vasculitis in 2006. Current platelet count 148. In 2007 I had a stem cell transplant for autoimmune disease and currently ITP and APS remission, with a reduction in lupus activity.
  • Posts: 98
  • Thank you received: 0
Thanks everyone. Feeling a little better,although I'm on 20mg of prednisone. I see the immunologist on Monday, so we'll see how it goes with that and with tapering of prednisone. My upper back, shoulder and sternum still hurt but better with the pred. The headaches are better too. I just hate all the drugs. I thought that maybe one of the new meds was causing my platelets to be down, but none list that as a side effect, so I don't think that's it, although you never know with new drugs.

My sister threw me a 50th birthday party -- surprise! All the usual "over the hill" birthday stuff. It was fun, but I'm beat.

Tamar,
I'm a tax accountant, so I like taxes, although we owe this year, so could be that's the problem. If I asked Jim to do the taxes, we'd end up in jail.

Michelle,
I'm at my sisters, so I don't have a link available, but when I get home, I'll send you one.

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