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Brand new ITP dianosis.

  • 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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8 years 10 months ago #56962 by Sandi
Replied by Sandi on topic Brand new ITP dianosis.
It took me a few weeks to get approved but that was in 2004. Things are different now. Good luck!
  • mrsb04
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  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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8 years 10 months ago #56967 by mrsb04
Replied by mrsb04 on topic Brand new ITP dianosis.
So glad we still have an NHS that don't make us jump through all theses hoops..not for much longer I fear
  • D.Mann
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  • Diagnosed October 2016 Steroids, IVIG, Rituxin, Promacta, Spleen removed, Rituxin again. Currently weaning off Promacta and Prednisone.
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8 years 10 months ago - 8 years 10 months ago #57027 by D.Mann
Replied by D.Mann on topic Brand new ITP dianosis.
Well Blue Cross Blue Shield came through quickly, all approved after only 2 days. I will have my first Rituxan infusion on Thursday. I will be able to get all 4 done before the end of the year.
  • 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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8 years 10 months ago #57032 by Sandi
Replied by Sandi on topic Brand new ITP dianosis.
Just in the nick of time! Good luck!
  • Hal9000
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  • Give me all your platelets and nobody gets hurt
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8 years 10 months ago - 8 years 10 months ago #57035 by Hal9000
Replied by Hal9000 on topic Brand new ITP dianosis.
Not that it has ever happened to me, ;) , but if that Rituxan can make one look like they prefer friends that DO NOT carry around baseball bats... I'm all for it.
ITP Types and Treatments by HAL
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8 years 10 months ago #57036 by Den
Replied by Den on topic Brand new ITP dianosis.
Hi,
Thank you for having this site available. I have learned so much just by reading through the notes.
Currently have a new question: Broke a tooth, normally have to take 4 - 500mg of amoxicillin to pre-medicate before the dental appointment due to knee replacement a few years ago. Haven't met my new hematologist - last count in August at 48,000, due for new test on the 20th with 1st meeting to follow in March. Is this still advisable? Surgeon wants me too, dentist will get back to me, thought I'd better do some checking on my own before I called my hematologist. Thoughts?
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8 years 10 months ago - 8 years 10 months ago #57041 by Geojude
Replied by Geojude on topic Brand new ITP dianosis.
Den - my ITP diagnosis is only about 6 weeks old, but I do have some experience with joint replacements. I've had both hips and a shoulder replaced. It was all due to avascular necrosis from high doses of steroids 30 years ago to treat a severe hemolytic anemia. You don't mention any ongoing treatment for the ITP, but regardless, if your orthopedic doc wants you to pre-medicate, then I would tell you to do it. The last thing you want is for that knee to go septic, and if you are immuno-suppressed you are at greater risk of an infection. I'm going to have to deal with my regular dental check-up in a couple of months and I fully intend to stick with the antibiotics.

Check with your hematologist, but unless there is a compelling reason not to, protect that knee. Just my 2 cents worth...

George
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8 years 10 months ago #57053 by poseymint
Replied by poseymint on topic Brand new ITP dianosis.
Geojude- thanks for your post. I was inspired to look up avascular necrosis(bone death) from steroid use- yikes! (link in another post) very eye-opening. Most of us here have used steroids- and like myself have used prednisone for many years.

I've heard of at least 1-2 other people on the forum who have developed avascular necrosis. I'd be very interested in how long you were on steroids, what drug, what dose that caused the problem?- if you'd care to share your story. thanks and good luck with the ITP- its not always chronic. Sometimes its just a temporary drop in counts.
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8 years 10 months ago #57056 by Geojude
Replied by Geojude on topic Brand new ITP dianosis.
Hi - I gave a synopsis in reply to your other post. It was so long ago that I don't remember exactly how long I was on the steroids, and I certainly don't remember the doses. I do remember my sister, who is an internal medicine doc, saying that I was on 'industrial strength' steroids :)

As for the ITP, I'm hoping it's not chronic, but unfortunately I fit the demographic (60+ yr-old male). I started rituxan last Thursday and so far haven't seen much in the way of side effects. My gut is a little screwed up, but I may have picked up a bug from our youngest granddaughter. I realize that there are some more serious side effects possible, but I would like to see if I can get to some sort of remission without a splenectomy.

As I have found over the years, time will tell <sigh>...
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