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26 Nov 2022 09:42
  • mrsb04
  • mrsb04
If you are worried best get it checked out 
26 Nov 2022 16:38
  • MelA
  • MelA
You are smart not to rush pred as you have been on it a while - and as I said, that stuff is nasty!!   I know in my heart prednisone caused problems with my knees & shoulders and made my skin thin.   
26 Nov 2022 16:52
  • MelA
  • MelA
As mrsb said, if you are worried get your eye/s checked out.   When you say 2nd one in a week - do you mean it happened in the other eye or same eye?   

I started getting that back in 1989 after diagnosis - it happens every now and then so I don't get bothered by it.   Sometimes I don't know it until someone says "what happened to your eye?"      Once I had one and happened to have an eye exam scheduled, the doctor wasn't impressed and said it will go away.  He said that can happen for various reasons.  

However, as my signature says:   "Instead of wasting your time worrying about symptoms, just get it checked out" - Nieca Goldberg, MD
26 Nov 2022 21:46
  • Chad89
  • Chad89
Hey Mcafiero. My name is Chad. I too was in remission for 13 years. I’m 2007 I had ITP at the age of 18 and was put on prednisone for a month or so. Everything went back to normal and everything was fine until 2020 when I noticed the same petechiae on my feet and bruises. This time it was harder to get it under control. Steroids didn’t work and then I did the IVIG for a temporary fix. My doctor had me go in for two rounds of Rituxan and so far that has been holding it seems. It’s been a little over two years since then and my counts have been in the high 200-300k range. Please let me know if you have any questions or just want to talk. 
27 Nov 2022 05:50
  • mcafiero
  • mcafiero
Thanks, Chad.
It seemed the Prednisone wasn't doing much for me this time around, but now I've been thrown a curveball. Here's how it's gone so far:
80mg /day week 1 (that sucked) - counts at 80
60mg/day week 2 (that sucked, too) - counts at 57
40mg/day week 3 - counts went up: 122 "the curveball"
I'm on 20mg/day now. Getting my next counts on Tues. So far no symptoms 
If for some reason they crash down again lower than 30, sounds like my hematologist is interested in trying Promacta. But it sure would be nice to see the counts continue to rise back to my normal level. Normal for me for the past few years has been in the 160-170 range.
27 Nov 2022 10:10
  • Chad89
  • Chad89
Yeah the prednisone is not fun. Hopefully they hold at a good level. Fingers crossed for you. So weird that after 13 years something triggers it right? 
28 Nov 2022 16:45
  • Hillary3
  • Hillary3
Hello! I had a baby girl on 6/12/22. Went in for a regular check up with my pcp in September and had low platelets and they have been dropping ever since. I had a normal pregnancy other than gestational diabetes. I was sent to a hematologist and started on 40 mg dexamethasone and have been tapering off that since 10/6/22. I tried prednisone but had a bad reaction to it-though after reading here I may have been just having a hard time coming down from the 40 mg of dex. But bc of that I have been tapering with dex and having a hard time sleeping, gaining a lot of weight and just been exhausted. My numbers have been dropping since the taper and we’re 53 today 11/28/22 and my hematologist wants me to start rituxan infusion on Wednesday. I am 30 years old- would you seek a 2nd opinion before starting the infusion? Or even after I start it? There is no one else local but I could drive 2-3 hours to either Atlanta or Nashville but I’m wondering if they would just tell me the same thing.  Below is my platelet count on different dates and the mg of dex I was on. Would love any feedback!


80 something 9/7.   55 9/12.    58 9/16.   59 9/19.    57 9/21.    45 9/26.  47 9/28.   20 10/6/22  -40 mg dex.   230 10/11- 8 mg dex.   179 10/18/22 4 mg dex.  124 10/24/22 4 mg dex.   166 10/31 2mg dex.  113 11/8 1mg dex.       75 11/15 1mg dex.    75 11/18 1mg dex.     81 11/22 1 mg dex.     53 11/28 .5 mg dex 
29 Nov 2022 02:20
  • mrsb04
  • mrsb04
Personally I would get off dex and see what happens. Nowadays, unless the patient is symptomatic, treatment is usually withheld on a count above 30.
If it went below 30 I would go see a different haemo. 
30 Nov 2022 14:46
  • Falcons1
  • Falcons1
I was diagnosed with itp in 2013 count of 120.  My last count 11/29/22 was 76 my lowest.  What can i expect down the road, i am 72 years old and in good health other than itp.  No medications except for blood pressure pill once a day which is good.
01 Dec 2022 17:26
  • midwest6708
  • midwest6708
I'm glad to say you're still in good health, despite an ITP diagnosis.  Your present count is enviable, and I'd be happy to have it if it meant I could forgo treatment.   I'm 72 and have been in the ITP boat for many years.  There is nothing about it that can be "expected", either now or down the road.  I haven't seen an identical case to mine in all the time I've been a member in this group, and no two others have been identical to each other, either.  There is no ideal guaranteed treatment for any given situation.  But I will say that you shouldn't even consider treating until your count gets to 30 or below.  That's an adequate count to handle most bleeding situations, for the exception of most surgeries.  Since the mortality rate for ITP is relatively low, and since the harsher treatments are responsible for at least half of those deaths, you shouldn't be in a big hurry to accept treatment if it isn't completely necessary.  

My advice is always that you should learn everything you're able to absorb about the disease and its treatments so that you're able to completely understand and approve of everything your doctor advises.  If you haven't yet, be sure to read all the information under the Patients & Caregivers tab on the home page.  Hope I've been helpful to you, at least a little.  

      
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