Search Results (Searched for: )

  • drbean7218
10 Jan 2023 10:24
Replied by drbean7218 on topic (17 May 2024) My platelet count was 171
I didn't have shingles at the time of this optic disc swelling.

My doctor said that the symptom might due suppressed due to Acyclovir.
  • MelA
11 Jan 2023 15:41
2023 was created by MelA
Just want to wish everyone a very happy and a very healthy New Year!!!
Never thought I'd live to see a year called 2023 - wow!!
Take care you all!!!
  • CindyL
12 Jan 2023 10:58
Replied by CindyL on topic 2023
The same to you, Mel.
I wish you all high platelets.  I wish I could share mine.
  • MelA
12 Jan 2023 14:24
Replied by MelA on topic 2023
You are a dear person Cindy!!

So far my count is ok - will see what it is next week when I get a CBC and see the hematologist.  Since I'm now on a daily baby aspirin he's keeping a close watch, so far so good.  
  • sohail009
12 Jan 2023 22:17
Hello,
Has anyone tried ITP KIT from GetWellNatural, if yes what is your experience?
  • MelA
13 Jan 2023 00:12
I have not tried it - and I never will.
$139.95 for a month's supply.......
  • ronjsteele1
13 Jan 2023 01:45
I apologize that I'm just seeing this now.  Mary Jo cared for our son's ITP starting a few years after he got it.  She is very good at what she does and she has since taken over the care of all of my family members. Yes, there are good and bad homeopaths and I've experienced both. Mary Jo has been my entire families healthcare provider for almost 12yrs.  Our son with ITP has other complicating factors, gene mutations, etc that make his ITP a bit different than most. She has done an amazing job keeping his platelets normal and him living life well.  ITP is normally very easy to treat homeopathically.  Our son's gene mutation complicated his case.  Nonetheless, having his platelets near normal and him doing well makes us more than happy.  That said, legally, no natural doctor is allowed to claim they can cure anything so you will not hear her say that.  You will hear her say that homeopathy can have a solid effect on one's overall health, including bringing their platelets to a normal count.  Hope this helps!  Sorry it's been so long.  I don't come here often.  
  • CindyL
13 Jan 2023 09:51
Replied by CindyL on topic 2023
Thanks, Mel.  I'm glad the doctor is keeping an eye on you.
I wish I had enough platelets to share with everyone!
  • Purple nati
14 Jan 2023 09:55
diagnosed 3 years ago was created by Purple nati
Hi guys. I got diagnosed with ITP 3 years ago. my count dropped to 5k it was prettty scary. i have been getting tested almost regularly since. and my count was never lower then average after that. i just wonder has anyone experienced a drop after like years of good results? 
  • ImPatient
14 Jan 2023 16:22
Replied by ImPatient on topic 2023
Happy New Year Mel, Cindy, everyone!
  • ImPatient
14 Jan 2023 16:26
I haven't dated anyone since my diagnosis and am curious what your reasons would be to tell a partner at all unless it's super serious, really long term.
  • ImPatient
14 Jan 2023 16:28
Amazing you got your meds covered, that's the reason I didn't go back to the US yet, not knowing what help I'd receive.
  • ImPatient
14 Jan 2023 16:31
Replied by ImPatient on topic (17 May 2024) My platelet count was 171
Does Famotidine also have something to do with your ITP? It's an allergy medicine?
  • karenr
14 Jan 2023 18:04
Replied by karenr on topic Just started Tavalisse (fostamatinib)
I've not been participating regularly in the forum, so I'm getting to this late. I wonder how you are doing on Tavalisse? I've had some side-effects, but it raised my platelets to a normal--sometimes even beyond-normal--range. 200s, 300s, occasionally 400s--though I've cut the use to every 4th day.

Karen
  • JVP
15 Jan 2023 02:07 - 18 Apr 2023 15:28
Replied by JVP on topic Just started Tavalisse (fostamatinib)
Hello Karen -  Happy to hear you are doing so well on Tavalisse - Congrats that is terrific!

I am doing well and still taking 100mg Tavalisse  2xday as of today 1/14/2023.  My count 3wks after starting Tavalisse actually went down to 13 from starting point of 16.  I suspect I had a bit of negative "rebound" affect from coming off Promacta.  Count at 5wks after starting Tavalisse was 29.  Heme doc and I were happy with that small bump and decided I would continue taking 100mg 2xday - my next blood draw is next month. I suspect this dosage (or drug in general) may not be working for me and may try bumping up to 150mg 2xday.  In reading clinical trial data-many seemed to move to higher dose.  Not giving up hope on this drug for me yet : ) 

Re: my experience with Tavalisse side effects  - I'm was looking out for the most common they list- diarrhea, BP rising, and white cell count dropping.
-Diarrhea - I had some diarrhea about 4 weeks in - this subsided and I realized taking with food greatly helped. 
-Blood Pressure - this went up a little for me - hard to evaluate as I've been doing phone visits and local blood draws as Heme doc isn't close. I go to Rite Aid pharmacy that has one of those BP machines and bought an inexpensive BP cuff from amazon - neither seem very accurate but I sit at 130ish/80ish.  
-White Blood Cell count per last 2 blood draws has dropped, but not significantly or into below normal range. 

-Additionally I did notice very slight morning headaches first few weeks on Tavalisse that have gone away.
-Also worth noting I have significantly less fatigue since starting Tavalisse even with low counts.

Thank you for checking in / your reply and again so glad Tavalisse is working so well for you Karen.

I'll continue to post my experiences in case others find helpful.  Cheers - Jim (JVP)

4/18/2023 - Last update on Tavalisse - ultimately it did not work for me.  Bumped up to 150 mg 2x day after count tanked to 9 mid Feb 2023 and experienced the severe gastro - diarrhea others has talked about. Stopped mid March at acount of 15. 
  • mrsb04
15 Jan 2023 03:27
Replied by mrsb04 on topic 2023
Season's greetings from across the pond 
  • mrsb04
15 Jan 2023 03:33
Replied by mrsb04 on topic (17 May 2024) My platelet count was 171
Does Famotidine also have something to do with your ITP? It's an allergy medicine?

Famotidine is an H2-receptor antagonist.
www.mayoclinic.org/drugs-supplements/famotidine-oral-route/precautions/drg-20072972?p=1
  • cchucky51
17 Jan 2023 09:08
covid and itp was created by cchucky51
didn't see any thing was wondering if any of you have had covid and what you used to treat it  
i have both covid and itp and if you had it how long did it take to get better 
thank you and good bless 
chuck
  • KellMichelle
17 Jan 2023 17:43
Side effects Promacta be Rituxan was created by KellMichelle
Seeing my Doctor tomorrow. I can’t tolerate a high dose of steroids so it appears my choice of treatments will be between these two. Any side effects I should be aware of that may help me make a decision? Thank you in advance. 
  • MelA
18 Jan 2023 00:14
Replied by MelA on topic covid and itp
Have you talked to your hematologist about how to treat it - I would!
Have you had the vaccines?
Everyone is different as to severity and how long it takes to get better.

I'm sorry you have covid - I hope you are better soon!!
  • MelA
18 Jan 2023 00:17
Replied by MelA on topic Side effects Promacta be Rituxan
Not many of us could tolerate the high dose steroids - when I was diagnosed the only treatments were prednisone (I was given 60mg) or splenectomy.   I do sympathize with you!

Have you talked with your hematologist about the side effects of the 2 treatments being considered?

Good luck!
  • PYager1313
18 Jan 2023 04:14
Newly diagnosed isolated & frustrated was created by PYager1313
Hi everyone, my names Paige and I'm I've been newly diagnosed with ITP here in Canada December 2022.  I am currently in hospital as my counts have dropped down to 2 last week and Doctors felt it necessary to be admitted to hospital.  Myself and my family are beginning to be very frustrated with treatment as nothing seems to be working. I've had 3 IVIG transfusions since Dec.12 22, been on dexamethasone and prednisone and now on cellcept and dex to hopefully raise counts enough for me to go home. Before this I was an otherwise healthy 31 yr old mother of one.  My Doctors do believe that my diagnosis is isolated to having been vaccinated in late Oct. I am just wondering if there is anything or anyone that has maybe had a similar medication trial and error process or just where we can go from here. I've been in the hospital now a full week and just want to go home. 

Thank you 
  • CindyL
18 Jan 2023 10:09
Replied by CindyL on topic Side effects Promacta be Rituxan
I have no experience with Promacta, but I did Rituxan in 2011 and haven't had any side effects since.  But you have to remember, we are all different.  Just because I didn't doesn't mean you won't.
Mel is right.  You should talk to your heama doc about the two medications.
Good luck.
  • CindyL
18 Jan 2023 10:29
Replied by CindyL on topic Newly diagnosed isolated & frustrated
For some reason the site isn't letting me see where in Canada you are.  I'm in NB.
It sounds like your doctor is throwing everything at you to see what sticks.  I did a full year on Prednisone when I was diagnosed in 2004.   I haven't been as low as 2, but was down to 7 and not hospitalized.  Do you have severe symptoms or is this just as a pre caution?  I think the doctor needs to slow down a bit and see if any of the treatments are working.  Sometimes it takes time for one to work.
Good luck and keep us posted.
  • CindyL
18 Jan 2023 10:33
This site is pissing me off! was created by CindyL
Is anyone else having issues seeing profiles?  When I do it, I get an error that tells me to sign in or register.  When I go to do that, it shows I'm already logged in!  It's really beginning to irritate me!
  • PYager1313
18 Jan 2023 10:35
Replied by PYager1313 on topic Newly diagnosed isolated & frustrated
Hi Cindy, 

I'm located in Saskatchewan.  Yes they have really thrown it all at me lately.  I've had counts as high as 125 and then within a day they drop back down to below ten.  I do feel in very good care here. The hematology team at the hospital I am in is one of the top in the Canada. It just seems like so much trial and error and just no progress. 

Thank you for replying. I am beyond grateful for this group and discussion board and all the information available. Makes me feel less like on an island. 

Paige Y. 
  • CindyL
18 Jan 2023 10:44
Replied by CindyL on topic Newly diagnosed isolated & frustrated
We're a pretty good bunch here, Paige!  There are a few more Canadians here, mostly Ontario and Alberta. 
I was really happy to find this site too!
It does help that you are comfortable with your hospital.  If you trust your doctor(s), relax and breathe.  You can always come here and vent or ask questions.  We all have opinions, but it's your doctor(s) you should listen to.
  • KellMichelle
18 Jan 2023 12:19
Replied by KellMichelle on topic Side effects Promacta be Rituxan

Not many of us could tolerate the high dose steroids - when I was diagnosed the only treatments were prednisone (I was given 60mg) or splenectomy.   I do sympathize with you!

Have you talked with your hematologist about the side effects of the 2 treatments being considered?

Good luck!
Yes, I’ve talked to her. She’s pushing Promacta, but I was looking for real world experience from someone who was taking them. 
  • Margaret k
18 Jan 2023 12:20
Replied by Margaret k on topic Flying not recommended with low platelets
In 2015 when my count was  between 10 and 20 i was told by a haemo not to fly. Had three  great holidays using the Eurostar.  Got him to sign off my insurance claim form and got a refund for a booked flight.
  • Margaret k
18 Jan 2023 12:29
Replied by Margaret k on topic Side effects Promacta be Rituxan
I've been on Promacta without a break for 7 years and have had no noticeable side effects. A trial before that with rituxan was ineffective and screwed up my immune system so much that I got necrotising gingivitis- not at all nice- so I would vote for Promacta. My count is now stable between 100 and 150 on  just 4x 25mg a  week.
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