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14 Jun 2022 12:16
  • mrsb04
  • mrsb04
Thank you Melanie,  currently on 15mg Pred with multiple bruises and a count of 10. 
I am (allegedly) signing consent on Monday 20th. Then got a maximum of 4 weeks to taper Pred down. 
14 Jun 2022 09:33
  • CindyL
  • CindyL
Thanks, Mel!  Still waiting to hear from the specialist.  My doctor says I should still see him and he will get the results too.
In the meantime, Cathy and I are still walking with plenty of stops along the way for photo ops and rehydration!
14 Jun 2022 00:09
  • MelA
  • MelA
13 Jun 2022 12:53
  • MelA
  • MelA
Hope you get good news Cindy!!!
11 Jun 2022 08:49
  • tmccormi
  • tmccormi
I have been on Doptelet for 1.5 yrs… taking every other day and platelets are in the 50-75 k range.. I have never been a bleeder even when my platelets were 20k… anyway I would like to titrate off Doptelet.. Has anyone done this with success and how did you do it ?
09 Jun 2022 13:25
  • CindyL
  • CindyL
I want to go and change my password, but when I tried it earlier, I couldn't do it.  Can you help me do that?
07 Jun 2022 23:15
  • jayinchicago
  • jayinchicago
My platelets during the DVT diagnosis spiked to 124 highest since I was diagnosed with ITP.

Do you think my DVT has anything to do with the spike or a result of it?
07 Jun 2022 14:58
  • Margaret k
  • Margaret k
After dropping from 6x25mg to 5x25mg  3 months ago my  count went down from 167 to 125 so i'm staying on 5x25 for the present . I'm happy with that as at my age of 75 you never know when you might need your platelets. I've had 3 surgeries in the last 4 years. 
20mg of omeprazole every other day has relieved my reflux.
07 Jun 2022 09:39
  • CindyL
  • CindyL
Good to see your counts are up, mrsb! Fingers crossed you can get to the lowest dose of pred and the trial does start in July!
06 Jun 2022 14:38
  • mrsb04
  • mrsb04
Thank you Melanie. 
Trial should, in theory, be starting mid July but I am not holding my breath. 
Count was 27 this  morning. Pred reduced to 15mg. Weekly bloods.  
Need to be on lowest dose of Pred possible to keep my count above 10 as whatever dose I start trial on I have to stay on it for the duration (6 months).  
05 Jun 2022 11:27
  • paulferi
  • paulferi
I've been dealing with diagnosed ITP for two years now, my platelets usually stay at 50 but three times I had flare-ups when they dropped to 14-18. I don't have bleeding/bruising/petechiae symptoms at all. The main thing I feel when they drop is general weakness or dizziness. I've never received treatment for it. I've had all relevant tests done on me except for the bone marrow biopsy, so I don't seem to have any comorbidities, it's just the low platelets.
The thing is, I've read in this forum a lot of remission or improvement stories about people with bleeding ITP, but not a lot of cases of exclusively dizziness or weakness symptoms, usually the weakness and dizziness come AFTER taking prednisone, which I've never taken. So... can anyone relate to this type of ITP, is there any hope for us? Should I be worried about something else?

I also want to share this recent study with anyone interested in the subject:
www.sciencedirect.com/science/article/pii/S0969996121002618?via%3Dihub
It basically says that we only need a platelet concentration of 10 for hemostasis, the rest are involved in synaptic plasticity, learning, and memory; also platelets act similarly to dopaminergic neurons releasing neurotransmitters and participating in brain homeostasis among other things. The main idea is that platelets are involved in a whole lot more than just bleeding prevention.

(Sorry for the grammar, English isn't my first language)
05 Jun 2022 00:32
  • MelA
  • MelA
Good heavens mrsb I'm just seeing this and can't believe this is happening to you - I am so sorry!!!   How frightening it must be to cough up blood, it breaks my heart!   I'm happy for you that the consent for the trial is signed, sad the trial has been postponed for a fortnight 

Thankfully your count is up and  you are home!!!  You go to the clinic on Monday [6th?] - hope you get some good news!

Thoughts are with you mrsb!!
02 Jun 2022 09:34
  • CindyL
  • CindyL
Yea you're home!  Crap that your sleep is affected!
Good luck on Monday!
02 Jun 2022 09:29
  • CindyL
  • CindyL
I'll wait and see if I get a call from the specialist.  If not, I see my doctor in a couple of weeks.  He should also get the results.
02 Jun 2022 04:03
  • mrsb04
  • mrsb04
Home last night with a count of 18. On 20mg Pred until I return to clinic on Monday. Not happy as sleep already affected. Will be grabbing naps whenever I need one.
01 Jun 2022 18:42
  • MelA
  • MelA
Oh Jay that's the pits - sorry!  Sounds like things are going ok though - do you get checked again soon?

Take care now - keep us posted!
01 Jun 2022 18:39
  • MelA
  • MelA
I haven't had one yet, probably at my age I need one, but I hear they are not fun.  There is also a nuclear treadmill test, that shows how the blood is flowing to the heart.   Well it sounds like you passed that test Cindy, proud of you :)    I would think that person who said everything looked normal would know - maybe though the results are sent to someone to evaluate.  
01 Jun 2022 15:44
  • poseymint
  • poseymint
So sorry to hear it, MrsB :( That sounds miserable, scarey bleeding and very frustrating. I wonder about raising Eltrombopag to 75 along with increased prednisone? Sometimes the combination of TPO with an immune suppressant works better than the single treatment, but I guess thats what you were doing- Eltrombo + pred lower dose. Anyway, take care and I hope the IVig works to get you home!
01 Jun 2022 10:52
  • CindyL
  • CindyL
Well, that test was fun! Not!
I was okay while just walking slowly on the treadmill, but when they sped it up, I started feeling like I couldn't breathe.  At that point, they stopped the test.  There was a doctor monitoring the test ,(I'm assuming he was a doctor) and he said everything looked normal. So I don't know if I will see the specialist.
01 Jun 2022 10:42
  • CindyL
  • CindyL
Aw, that sucks, mrsb!  Hopefully it won't take much longer for your counts to rise.
01 Jun 2022 02:25
  • delta809
  • delta809
Sorry to hear, MrsB. Hope your counts go back up soon and you can return home.
31 May 2022 23:40
  • jayinchicago
  • jayinchicago
Thanks,

I suspect it was because of dry fasting and sedentary work in my home office.

I believe dehydration caused it.

By the time I realized my  mistake it was too late.

I saw your message on dehydration and clotting and told myself that this entire episode could have been prevented. 

Lucky for me is that swelling has started going down  and I have no pain in my right leg.

I hope blood thinners don’t crash my platelet counts which have been stable for 3 years.
31 May 2022 17:32
  • AnnaM
  • AnnaM
Hi everyone, I was wondering about your experiences with platelets counts. It seems to me that a lot of itp patients have to deal with the famous rollercoaster and that hasn’t been my experience at all. 
For some context: I’ve been diagnosed with itp (I for idiopathic at the time) as a teen when my doctor ordered a cbc because I was sick all the time. My count was stable around 100G so nothing was done beyond monitoring. Since then it’s been veeery slowly dropping and now, twenty years later, I’m hovering around 60G. The thing is, I never had any ups and downs like I’ve seen in many of the testimonies on this forum. My platelet count does tend to drop about 40G lower in my third trimesters (I have three kids), but that’s it. My last pregnancy necessitated treatment, they tried steroids and then ivig and it did nothing, so they finally did a transfusion during labour which barely raised my count (but that’s to be expected, esp. since they later found I’m positive for HLA antibodies). My lack of response to treatment made the specialists re-examine the itp diagnosis, but actually, digging for information online, I almost find my ever-steady counts more significant.
What’s more I seem to be as symptomatic as some patients with lower counts. I’m often covered in bruises and my periods are a nightmare. 
What do you think? Have any of you had steady counts for decades?
31 May 2022 10:11
  • mrsb04
  • mrsb04
Sorry to hear that Jay 
31 May 2022 10:09
  • mrsb04
  • mrsb04
Unfortunately not yet Cindy. Count came back at 7 about an hour ago. Sample was taken about  90 minutes after the infusion finished. Cannot go home until in double figures
31 May 2022 09:35
  • CindyL
  • CindyL
Oh, no, so sorry to hear all this mrsb!
I got excited for you when I read that you had signed consent for the trial!  Then I read the rest, and my heart sank!
Hope the IVIG has brought your counts up and you can go home!  Please keep us posted on how you're doing!
31 May 2022 06:44
  • mrsb04
  • mrsb04
So with an asymptomatic count of 6 on 50mg Eltrombopag and 2.5mg Pred in mid May Haemo says stop Eltrombopag, up Pred to 5mg and get a test in 4 days. Count came back at 12 which was great as supposedly signing consent for trial yesterday. 
Research nurse emails mid last week trial start put back by a fortnight. 
Bloods last Friday,  haemo rings yesterday morning count is 4 :-have I any symptoms other than a gazillion bruises. No so take another 5mg of Pred  stay on 10mg a day and come into clinic on Monday. If you bleed ring hospital and tell them you are coming in. 
Fast forward to yesterday evening and I start coughing up fresh blood. Shovelled another 10 mg  of Pred down along with 500mg TXA. Ring hospital as instructed and a friend drove me in whilst I constantly coughed and spat into tissues. Bleeding stopped after about 90 minutes.  Count  came back at 5, PCR negative. 
IVIg given over night. Waiting  to see what my count is now.   Hopefully I can go home. I already have a clinic appointment for Monday morning. 
Fingers crossed my count can be kept above 10 without anymore bleeds until the trial starts 
 
30 May 2022 16:13
  • jayinchicago
  • jayinchicago
Hello,
Long time no hear.

I have been maintaining 50-80 with no medication.

Couple of weeks back developed calf pain.
Got tested today for a dvt, ultrasound came back positive.

I have been prescribed eliquis 5mg twice daily.
30 May 2022 09:51
  • CindyL
  • CindyL
Wednesday morning at 9:15!  Can't wait!
I drink a lot of water and I think these walks with Cathy may be helping.  We do sometimes get cravings for something sweet, but have cut down on the amount we eat a lot.  Whatever works!  My dad was never much of a sweet eater..  My mom was the exact opposite.
30 May 2022 00:39
  • MelA
  • MelA
I am so glad you have your stress test scheduled Cindy - break a leg (so to speak ;) ) - hope you pass with flying colors!! 

I am shocked every time I go to the grocery store, it is something how the prices are increasing.  I, unfortunately, love sweets - blame that on my Mom, may she rest in peace, she loved cakes from the German bakeries in our city and too convenient :)     Congrats on your weight loss!!
 
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