Search Results (Searched for: )

  • 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.
  • Margaret k
18 Jan 2023 12:33
Replied by Margaret k on topic (17 May 2024) My platelet count was 171
I had no adverse effects from the shingrix  vaccine either.
  • Margaret k
18 Jan 2023 12:48
Replied by Margaret k on topic platelets less then 10
Sorry to near about your  dip. I was at 1 a few times in the first 3 years of itp. I was usually in hospital for a day or two but went home when they realised that transfusions , steroids and ivig didnt work for me. I was saved  by 75mg promacta 7x per week which  very gradually  raised my count but am glad to say 7 years later i am now stable on 25 gms 4x week.
  • Smullen44
18 Jan 2023 19:06
Replied by Smullen44 on topic Flying not recommended with low platelets
Thanks so much for replying to my question.  Your response is very helpful.  Besides ITP I also have a genetic blood-clotting disease which makes me lean towards avoiding plane trips.  Like you, we are considering taking the train to our destinations.
  • midwest6708
19 Jan 2023 11:04
Replied by midwest6708 on topic Side effects Promacta be Rituxan
I take Nplate, which works by the same mechanisms as Promacta. Five years ago, I took my doctor's recommendation to try Rituxan and had a terrible reaction to it that hospitalized me for six days and left me with a permanent balance disorder.  Not saying there's any high probability that would happen to you, but you can understand why my first choice would be one of the platelet booster drugs vs. one that destroys otherwise beneficial blood components. 

By now you’ve seen your doctor.  Have you made your choice? 
  • CindyL
20 Jan 2023 10:09
Replied by CindyL on topic This site is pissing me off!
Yay, it's fixed!  Ignore previous post!
  • mrsb04
20 Jan 2023 13:58
Replied by mrsb04 on topic Side effects Promacta be Rituxan
Promacta has dietary restrictions but these can be got round fairly easily.
It can take a while to work.
Side effects I experienced in no particular order, crazy dreams,  poor sleep pattern, coughing, sneezing, aches and pains all over, bowels on overtime up to 7 times day. All dose related; the higher the dose the worse the side effects. 
  • PYager1313
20 Jan 2023 23:41
Vaccines was created by PYager1313
Hi all, 

I am back with more discussion. Still waiting in hospital with platelets at 6, going back on prednisone tomorrow and now it's been recommended I receive a series of vaccines.  Hep B, ACT HIB, and Meningococcal AC and B.  I was advised by my first hematologist that I should be wary of any vaccination in future because of my "twitchy" immune system and now to be told you have to get all these shots it's just a little bit unsure feeling.  Wondering if anyone else has had good or bad or any information on why they would be recommending so many at once. I was also tested for all the things these are vaccines are for and came back negative. 

Thanks in advance for the help.

Paige Y. 
Saskatchewan, Canada 
  • MelA
20 Jan 2023 23:55 - 20 Jan 2023 23:55
Replied by MelA on topic Vaccines
Interesting - when we lived in Hong Kong my US hematologist said I should not get the Hep B vaccines.  So I did not but the rest of my family did.    Who told you to get those vaccines?

  
  • MelA
20 Jan 2023 23:56
Replied by MelA on topic This site is pissing me off!
Oh good Cindy, glad it is fixed!   
  • PYager1313
21 Jan 2023 00:20
Replied by PYager1313 on topic Vaccines
So here in Canada we receive Hep B vaccinations in school, but as far as I was aware I was all up to date. I have a 2 year old so I did look into all my vaccinations while pregnant.  These ones were all recommended by the internal medicine team that's working alongside hematologists on my case. But it just seems so strange to me that one hematologist says be wary and then others are wanting me to get 4 at one time.  
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