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21 Jan 2023 16:53
PYager1313 PYager1313	Vaccines Oh yes, I am very pro vaccine. I just wasn't sure at first why they were being offered to me. We are now aware that I am being considered for a splenectomy. Waiting on my hematologist on Monday to confirm. Thank you. Category: General ITP Discussion

21 Jan 2023 16:52
PYager1313 PYager1313	Vaccines Hi, yes so it was mentioned to me today now I am being considered for splenectomy as the other courses of treatment have been almost unsuccessful. Still going to have to wait till Monday now for my hematologist. Maybe a light at the tunnel. Thanks for the input Category: General ITP Discussion

21 Jan 2023 14:46
mrsb04 mrsb04	Vaccines A a retired health professional with severe refractory ITP my advice is take any vaccination you are offered. Vaccines are around for a reason; they combat illness, keep you out of ITU and can save you from death. In the grand scheme of things ITP is a minor inconvenience. Category: General ITP Discussion

21 Jan 2023 10:36
CindyL CindyL	This site is pissing me off! I was getting frustrated that day trying to check a profile. I'm sitting here looking out my living room window watching one of the does that are in the area. We have 5 does and one (at least) buck. I've even named them all! Steven thinks I'm nuts! People are leaving food out for them now too. Category: Social Chat

21 Jan 2023 10:32
CindyL CindyL	Vaccines A couple of those vaccines sound like ones I was told to get before my splenectomy. Has this been mentioned to you, Paige? I wound up getting them after surgery, though. I must be old, I don't remember getting Hep B vac in school! I remember being tested for TB, though. Category: General ITP Discussion

21 Jan 2023 00:20
PYager1313 PYager1313	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. Category: General ITP Discussion

21 Jan 2023 00:20

PYager1313
PYager1313

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.

Category: General ITP Discussion

20 Jan 2023 23:56
MelA MelA	This site is pissing me off! Oh good Cindy, glad it is fixed! Category: Social Chat

20 Jan 2023 23:55
MelA MelA	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? Category: General ITP Discussion

20 Jan 2023 23:41
PYager1313 PYager1313	Vaccines 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 Category: General ITP Discussion

20 Jan 2023 23:41

PYager1313
PYager1313

Vaccines

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

Category: General ITP Discussion

20 Jan 2023 13:58
mrsb04 mrsb04	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. Category: Treatment - General

20 Jan 2023 13:58

mrsb04
mrsb04

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.

Category: Treatment - General

20 Jan 2023 10:09
CindyL CindyL	This site is pissing me off! Yay, it's fixed! Ignore previous post! Category: Social Chat

19 Jan 2023 11:04
midwest6708 midwest6708	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? Category: Treatment - General

19 Jan 2023 11:04

midwest6708
midwest6708

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?

Category: Treatment - General

18 Jan 2023 19:06
Smullen44 Smullen44	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. Category: Newly Diagnosed & Frequently Asked Questions

18 Jan 2023 12:48
Margaret k Margaret k	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. Category: Newly Diagnosed & Frequently Asked Questions

18 Jan 2023 12:48

Margaret k
Margaret k

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.

Category: Newly Diagnosed & Frequently Asked Questions

18 Jan 2023 12:33
Margaret k Margaret k	(7 Jan 2023) My platelet count was 169 I had no adverse effects from the shingrix vaccine either. Category: General ITP Discussion

18 Jan 2023 12:29
Margaret k Margaret k	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. Category: Treatment - General

18 Jan 2023 12:20
Margaret k Margaret k	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. Category: Newly Diagnosed & Frequently Asked Questions

18 Jan 2023 12:19
KellMichelle KellMichelle	Side effects Promacta be Rituxan MelA wrote: 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. Category: Treatment - General

18 Jan 2023 12:19

KellMichelle
KellMichelle

Side effects Promacta be Rituxan

MelA wrote:
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.

Category: Treatment - General

18 Jan 2023 10:44
CindyL CindyL	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. Category: Newly Diagnosed & Frequently Asked Questions

18 Jan 2023 10:44

CindyL
CindyL

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.

Category: Newly Diagnosed & Frequently Asked Questions

18 Jan 2023 10:35
PYager1313 PYager1313	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. Category: Newly Diagnosed & Frequently Asked Questions

18 Jan 2023 10:35

PYager1313
PYager1313

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.

Category: Newly Diagnosed & Frequently Asked Questions

18 Jan 2023 10:33
CindyL CindyL	This site is pissing me off! 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! Category: Social Chat

18 Jan 2023 10:29
CindyL CindyL	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. Category: Newly Diagnosed & Frequently Asked Questions

18 Jan 2023 10:29

CindyL
CindyL

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.

Category: Newly Diagnosed & Frequently Asked Questions

18 Jan 2023 10:09
CindyL CindyL	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. Category: Treatment - General

18 Jan 2023 04:14
PYager1313 PYager1313	Newly diagnosed isolated & frustrated 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 Category: Newly Diagnosed & Frequently Asked Questions

18 Jan 2023 04:14

PYager1313
PYager1313

Newly diagnosed isolated & frustrated

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

Category: Newly Diagnosed & Frequently Asked Questions

18 Jan 2023 00:17
MelA MelA	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! Category: Treatment - General

18 Jan 2023 00:14
MelA MelA	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!! Category: General ITP Discussion

17 Jan 2023 17:43
KellMichelle KellMichelle	Side effects Promacta be Rituxan 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. Category: Treatment - General

17 Jan 2023 09:08
cchucky51 cchucky51	covid and itp 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 Category: General ITP Discussion

15 Jan 2023 03:33
mrsb04 mrsb04	(7 Jan 2023) My platelet count was 169 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 Category: General ITP Discussion

15 Jan 2023 03:27
mrsb04 mrsb04	2023 Season's greetings from across the pond Category: Social Chat

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