Be a part of the ITP community and stay informed.
Login to your account or REGISTER
.

•  Web site Help & Info

Welcome, Guest
Username: Password: Remember me
×

Advanced Search

Search by Keyword
×

Search Options

Find Posts from
Sort Results by
Search at a specific date
Jump to Result Number
Search in Categories
×

Search Results

Searched for:
07 Jul 2022 00:22
  • MelA
  • MelA
After a tooth broke off and the root removed I had an implant before the pandemic - I also had a descaling of 1 root as mrsb did only the specialist did it - then I had a crown totally break off at the gum line & had to have the root removed which came out in pieces, bone implanted to keep the space proper [ decided against an implant ] and all went well, don't even know what my count was.   I think it depends on the dentist or specialist - a few years back a specialist was to perform surgery going through the gum to the top of a root that had a broken off piece of instrument from a root canal, now he insisted on a platelet count with a letter from my hematologist that it was ok to perform the surgery.   [this makes my teeth sound terrible, but they are good really]

Lman I wish you could use my dentist because he is fantastic - I even fell asleep during a root canal he was doing :)     I know there are people who are terribly afraid of dental work being done - my dentist's wife is one and she insists on receiving whatever that gas is called before any work done.

And you should tell any doctor or dentist you have ITP, and tell them up front !!!  

(oh mrsb the bone marrow I had while in the hospital when 1st diagnosed in 1989 was something I hope never to have to repeat, it was quite painful - after being given a hematologist and I told her about it she told me that had she done the procedure it would not have hurt).
07 Jul 2022 00:07
  • MelA
  • MelA
So happy for your mrsb - your post was the best news I've had in days!!!  Signed the trial consent form, gave up gobs of blood and now officially in the screening period - great news!!
06 Jul 2022 23:44
  • ShinMegami
  • ShinMegami
Hello, I'm a 27 year old male healthy lifestyle. I just recently got diagnosed with ITP and Lupus (I heard that this is often misdiagnosed). I had ivig in the beginning but that didn't work.

I've been in the hospital for 3 weeks now and my platelets are still around 10k-20k with transfusions here and there. They keep giving me platelets when it drops below 10 that's their panic mode. Around 2 weeks ago I started my medications I've had one dose of Rituxn. I've been given Solumderol, Hyrorixyclocine(Lupus), Mycophenolate and cyclosporine.

The cyclosporine seemed like it worked because platelets went up I was on it for a few days but my megnisum levels went critical so they took me off that. In fact they are taking me off all immune suppression don't know if it's just tomorrow for my second dose of Rituxn.

I've heard that most of these drugs takes weeks to respond and I haven't been on them that long, I feel like my doctors here in the hospital is moving to fast with switching drugs is this true or is this normal to switch this fast?
06 Jul 2022 05:48
  • mrsb04
  • mrsb04
ashpublications.org/bloodadvances/article/3/22/3780/428877/Updated-international-consensus-report-on-the 

Lman:- The  latest ITP guidelines Link Above  See Table 6. My haemo isn't at all worried about dental treatment with low counts, neither is my dentist. I've just come back from a descaling  by the hygienist. My count is currently 6 and I have had no ill effects.  I would discuss the the dentist. I can't see a filling causing much bleeding other possibly than the injection site. Ask the dentist about topical TXA .

I can assure you that a bone marrow biopsy is not painful. 
06 Jul 2022 01:49
  • Lman
  • Lman
Hi.
Does anyone have any idea about ITP and dental procedures? I need to have a couple of teeth filled, and I'm worried about ITP. I know for filling tooth counts should not be high (maybe 40k would be enough according to something I had seen years ago), but I discussed it with the doctor, and he suggested being +80k and told me I could have some extra Nplate for a week with some pred. The thing I'm worried about is dental anesthesia and its effect on platelet aggregation. I have not discussed it wthe dentist, yet but I'll surely let him know my condition.
Does anybody have any ideas?

P.S: I'm really afraid of tooth fillings. They are PAINFUL :) The pain is comparable to bone marrow biopsies I believe 
05 Jul 2022 16:49
  • mrsb04
  • mrsb04
Thank you Cindy
I will keep you updated  but nothing much will happen now (assuming I pass work up period  without any hiccups) until  beginning August.  
05 Jul 2022 16:44
  • mrsb04
  • mrsb04
TOBY1
Are you being cared for by haematologists who specialise in ITP?
Were you not given TXA?  
Platelet transfusion is a waste of a donation  if it is a platelet destruction ITP.
IVIg is only ever a temporary fix (if it works) and can cause Hep B +ve antibodies. 
05 Jul 2022 16:34
  • mrsb04
  • mrsb04
OB1
I assume you are asking about an  Indium 111 scan. I live  in the UK and am lucky enough to live near an ITP clinical centre. 
The scan is performed before any surgery is even contemplated. A sample of blood (approx 50ml) is  removed, platelets are coated with Indium 111 and  returned  to the body then  scanned as they circulate through the body.  Absolutely fascinating to watch.  
The whole point of it is to prove where platelet destruction takes place, unless there is no destruction which indicates  it is probably a platelet  production problem. 
If it is a destruction problem then it is more than likely in the spleen, which was blatantly obvious on my scan.
However as my spleen is a perfectly healthy organ doing its job properly I refuse to part with it.
  • A splenectomy is not without several risks, ie infections and arterial emboli    www.ncbi.nlm.nih.gov/books/NBK538171/ 
  • There is no guarantee a splenectomy will work, the endoreticular system takes  over the job of a removed spleen thus destruction of platelets will continue but probably at a slower rate  
04 Jul 2022 16:20
  • Toby-Wan-Kenoby
  • Toby-Wan-Kenoby
I heard that one can test if the spleen or the liver or both are responsible for deposing the platelets.  I also heard that one can only get that test done in the UK. Has anybody done that test.? What is the procedure. What were your results? Did it get confirmed after splenectomy?  
Thanks for your info. 
04 Jul 2022 16:00
  • Toby-Wan-Kenoby
  • Toby-Wan-Kenoby
I have been down to 0 count and my base level is 2. Also thought I was invincible. Never had a nose bleed. Worst was couple of blood blister in my mouth. 
Last Monday I had a 5 minute episode where I first lost mobility in my right hand fingers and then lost the ability to speak. Drove to the nearest hospital. CT confirmed small brain bleed platelet transfusion stopped that. Still 2 day stay. Now I am scared of low levels. I just measured myself after IVIG yesterday at 11 and today it’s down to 9 again. It’s scary. 
04 Jul 2022 15:49
  • Toby-Wan-Kenoby
  • Toby-Wan-Kenoby
Inhaber switched to it a month ago. Did not do much for me. But almost nothing does. My base levels 2. NPlate and Cortision works best and we are trying that again. 
04 Jul 2022 14:21
  • CindyL
  • CindyL
YEA!  That is awesome news, mrsb!
Here's to better things ahead for you!
04 Jul 2022 09:10
  • mrsb04
  • mrsb04
I  HAVE SIGNED THE TRIAL CONSENT FORM  and parted with an armful of blood.
I am now officially in the 28 day screening period. Platelet count is 6. Have dropped down to 5mg Pred/day from this morning. 
03 Jul 2022 21:19
  • malizgue
  • malizgue
Hello, 
im having issues with my mother newly diagnosed not fond of meds, is there something natural or supplements that help out. My mothers doc hasnt give her anything at all, just said if she bleeds profusely to take her to emergency asap and tell them what she has..that's all.
we are currently looking for a doc that takes her insurance at this moment, that would be our dr number 6..yes the others just dont do anything at all which is worrying for us.
sorry if it is quite off topic, we are kind of lost
29 Jun 2022 09:18
  • janisshort1
  • janisshort1
The absolute best on is Dr. Liebman at University of Southern Ca. He is also on the PDSA medical board. 
29 Jun 2022 09:11
  • janisshort1
  • janisshort1
I have been on it for 3 months. My numbers have been as low as 25 and high as 179. I’ll take it because prior to Doptelet they were in single digits. Once they stabilize they’ll take me off it. I was put on Cellcept at the same time. I will probably stay on Cellcept though 
29 Jun 2022 00:18
  • MelA
  • MelA
Sorry you haven't received any replies PennyH - probably no one has tried Tamiflu as a treatment.
Good luck to you!
29 Jun 2022 00:17
  • MelA
  • MelA
Really it wasn't terrible Luvmycat - just never know when it will happen so it is a surprise :)  
It is smart your husband is getting the cataracts taken car of because if left alone they just get worse and harder to deal with, I was told could lead to losing sight.  Didn't realize there was 1 med now that combines the 2 drops, that is convenient - that is new so not a generic yet so my HMO doesn't offer it.   Your husband should do just fine - keep us posted!!
28 Jun 2022 10:27
  • CindyL
  • CindyL
Oh mrsb, my heart goes out to you.  Wish I could give you some of mine.
Hopefully you don't have much bleeding and you can get down to the max dose of pred.
Fingers crossed everything works out soon!
28 Jun 2022 07:39
  • Luvmycat
  • Luvmycat
OH MY! Sounds terrible! I sure hope everything's ok now. I'll post in the future when he has the surgery, what was required and how things went. I do like that they have the new drops out now that are combined into one medication and you only put them in 4x a day. $100 for a small bottle which insurance does not cover because the other drops are still available. Grrrrrr.
28 Jun 2022 00:52
  • MelA
  • MelA
It is terrible the carrot is dangled in front of you and then keeps getting taken away!!  
Thankfully though you are Hep B clean!!
28 Jun 2022 00:44
  • MelA
  • MelA
I tried to post a photo of my eye hemorrhage - but of course it won't post :(   So no photo here unless someone can tell me how to add a photo (JEFF???) - but maybe what is below will make sense without the photo.  

This is what my eye looked like when I awoke a month ago - why? who in the heck knows!!  By the next morning no white could be seen as it was all that very dark red you see below the iris.  This is not the first time that has happened since diagnosed ITP in 1989, so when I was told about possible bruising after cataract surgery it didn't phase me at all.  I'm sure the bruising, had it occurred which it didn't, would have gone away sooner than this which took a month & got me lots and lots of very odd stares!!
27 Jun 2022 17:31
  • mrsb04
  • mrsb04
Hi Cindy
Delay was initially drug company amending the protocol, now the local R&D team are the hold up. My count is 4. I have TXA tablets to take if I have any bleeding. Am seeing Consultant weekly, down to 6mg Pred a day and aiming to be down to a max of 5mg pre starting trial. 
27 Jun 2022 09:41
  • CindyL
  • CindyL
Well crap, mrsb!  That really sucks!  What is causing all the delays?
On the other hand, that is great that the Hep B is negative!
How are your counts?
27 Jun 2022 09:29
  • mrsb04
  • mrsb04
If  a conjunctival injection of local anaesthetic is given bleeding could occur. It would be worth asking if an injection or drops are used.
There is also a low risk of retinal or choroidal bleeding.
Also you could get bruising of the eye lids
27 Jun 2022 09:09
  • mrsb04
  • mrsb04
JJ
Fortunately Hep B has come back negative. I have tried IVIg twice, first time count went from 4 to 13, next time from 5 to 18. I don't think I will bother again. 
27 Jun 2022 09:00
  • JJ
  • JJ
No blood vessels involved with cataract surgery so no need for any particular count.
27 Jun 2022 08:47
  • JJ
  • JJ

JJ
Does Hep B revert back to negative over a period of time?


Yes it will if you stop having the IG but it may last a good few weeks.
27 Jun 2022 07:34
  • mrsb04
  • mrsb04
Consent delayed yet again, hopefully next week. On a positive note though I am Hep B negative 
26 Jun 2022 14:32
  • Lman
  • Lman
Hi.
For my new university, I am supposed to take MMR and DPT vaccines. I think I have had MMR in childhood, but I might have lost the documents. Is there any idea about these vaccines when someone has ITP? I'm on Nplate.
Should I let the university know about my case and ask for a vaccine waiver? For the unvaccinated people, there would be a hold on their course selection.

Thanks.
Displaying 91 - 120 out of 71100 results.

Charity NavigatorGuideStar Seal NORD Member BadgeTHSNA logo