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mrsb04 wrote:

Still waiting for my invitation to attend !!!

I really, really hope you get it soon. The ONLY hard thing about getting the vaccine is the feeling of knowing how many people around the world want one who can't get one. I'm ridiculously privileged and very conscious of that fact. Hopeful that distribution and production numbers keep going up!

Here in Canada we had an issue with getting vaccines. We had some earlier and each province only got a certain number. In New Brunswick, most of our doses went to the front line workers, which is totally fine with me! And the nursing home with the worst break out got it too.
I hear now, we will have lots coming in April, (I think) and there will be enough to vaccinate every Canadian by the end of summer.
I'm not a fan of our province's Premier, but I give him 100% marks for the way he has handled this pandemic.
I'm glad those of you who have had/are getting shots are doing well.

mrsb and Cindy I sure hope you can get your vaccines soon!!

mom - your experience went like a well oiled machine as did mine. They say to keep that CDC vaccine card with you at all times, might need to show it at some point. March 7 will be here before you know it

Thanks, Mel.

CindyL wrote:

Here in Canada we had an issue with getting vaccines. We had some earlier and each province only got a certain number. In New Brunswick, most of our doses went to the front line workers, which is totally fine with me! And the nursing home with the worst break out got it too.
I hear now, we will have lots coming in April, (I think) and there will be enough to vaccinate every Canadian by the end of summer.
I'm not a fan of our province's Premier, but I give him 100% marks for the way he has handled this pandemic.
I'm glad those of you who have had/are getting shots are doing well.

I did see this in the news the other day that Canada had worked out some new vaccine acquisition to cover all of the population, which is great news! I hope that you can get a shot sooner rather than later!

MelA wrote:

mrsb and Cindy I sure hope you can get your vaccines soon!!

mom - your experience went like a well oiled machine as did mine. They say to keep that CDC vaccine card with you at all times, might need to show it at some point. March 7 will be here before you know it

That's great that you had a good experience as well. I'm sure the CDC card will be critical to keep track of. They encouraged us to snap pictures of it with our phones right when we got it, which was a good move because I'm sure people lose them. Maybe I can laminate it after it's complete haha. So far, so good with regards to symptoms. Will be doing a count tomorrow and will update then. The 7th will indeed be here soon. I'm excited that I got Pfizer because the second shot comes that little bit more quickly, which is exciting. Keep us posted on how you do after your second shot!

I'm looking forward to hearing your platelet count mom!! Great idea to take a picture of the CDC card with our phones - will do and have my husband do his also, thanks for mentioning that.

My 2nd is a week from Saturday - will let you know if I have any side effects and if so what - and let you know my count a week later.

Got my first vaccination at short notice this morning, the Pfizer one. Second one booked for 12 weeks time as that is the new protocol over here.
No chance to get a platelet count done before but I know it is not desperately low. Actually have an appointment on Friday for routine bloods so be interesting to see what count is.

That's great news, mrsb!

mrsb04 wrote:

Got my first vaccination at short notice this morning, the Pfizer one. Second one booked for 12 weeks time as that is the new protocol over here.
No chance to get a platelet count done before but I know it is not desperately low. Actually have an appointment on Friday for routine bloods so be interesting to see what count is.

Oh wonderful!! Join the Pfizer gang mrsb! I'm so happy to hear that you were finally able to get a shot. Interesting that they are doing the second shot 12 weeks later, which is a departure from what they are doing over here. Let's hope your count does well as your body adapts. I'm still waiting on my results from morning labwork to see how my count is.

Yea msrsb!!!!! That's wonderful you got your 1st Pfizer vaccine today - happy for you!!

mom fingers are crossed for a real good platelet count!!

Lol, yeah yesterday's count was 18k. I only just got the results (apparently they were lost somewhere in the computer system). It was totally worth it to get the vaccine while they were high, and who knows, I may have ended back up at 18k on my own without any vaccine intervention. There is no way to know.

I have a call in with my hematologist about what to do for the immediate future. I have some old prednisone that he may recommend that I take. As another update, my insurance won't pay for Doptelet without my having failed Fostamatinib/Tavalisse first, so that may be my next stop on the treatment pathway. We'll have to see. I'll keep you all updated. No crazy bleeding symptoms, but I knew I was back down because of some facial acne that bled a lot more than a 232k platelet count worth! Gotta love that ITP.

Oh shoot mom - I was hoping maybe you would have gone up!!
And as you said there is no way to know if it was the vaccine that lowered your count or if it was just you body doing its thing.
I'm so sorry though!! Glad no bleeding symptoms though. Keep us posted!!

Momto3- I've been reading a UK Lupus site where there are people taking steroids and immune suppressants and getting vaccinated. There's a big question going around- Is the vaccine is still effective or do steroids inhibit the vaccine's effectiveness? I haven't found a definitive answer. Since you mentioned that you might take prednisone, I wonder if your doctor is concerned or has any information about steroids and the vaccines? Or if anyone else has information.
The CDC mentions auto-immune people getting vaccinated here but the information is vague-
www.cdc.gov/vaccines/covid-19/info-by-product/clinical-considerations.html

poseymint wrote:

Momto3- I've been reading a UK Lupus site where there are people taking steroids and immune suppressants and getting vaccinated. There's a big question going around- Is the vaccine is still effective or do steroids inhibit the vaccine's effectiveness? I haven't found a definitive answer. Since you mentioned that you might take prednisone, I wonder if your doctor is concerned or has any information about steroids and the vaccines? Or if anyone else has information.
The CDC mentions auto-immune people getting vaccinated here but the information is vague-
www.cdc.gov/vaccines/covid-19/info-by-product/clinical-considerations.html

That will be an interesting question going forward. I am not a regular steroid user for treatment, but it will be interesting to see if people who have to treat conditions with steroids end up developing immunity with the vaccine. My doctor did not tell me to start prednisone, which is good because I have no love for that drug, but now I'm going to be paranoid that every twitch in my head is maybe the start of a brain bleed since I'm now 4 days post vaccine, lol. I really hope I don't crash any lower and develop symptoms. He's going to start me on Tavalisse for ITP treatment, but I'll be waiting on specialty pharmacy approval, which is sure to be slow. I'm just going to trust that the vaccine won't send me into some kind of an unusual crash for me and look for symptoms over the next few days.

First diagnosed in summer of 2019 when I was hospitalized with counts at 6,000. Steroids and Rituximun had zero effect and Ivig provided a temporary boost. It was not until I started NPlate that my numbers rose. The last 16 months I have been very fortunate with counts in the normal range while receiving a 1mcg/kg dose of NPlate weekly. In recent months, my counts have been hovering in the 175 to 215,000 range. As I said I have been very fortunate. My Hemotologist and i were planning to go to two week injection intervals to see how I would respond but we waited due to Covid.
On Monday 2/15, I received the second dose of the Pfizer vaccine. For 48 hours I suffered with fever, chills, muscle aches, joint pain and gastric issues. This morning my platelets dropped to 103,000 down from 213,000 one week ago. I received my normal 1mcg NPlate dose. I am hopeful that my count will jump back into the normal range this week. This has not been a nice experience but avoiding Covid treatment including time on a ventilator would be a much worse experience in my mind.

Oh Carducci I'm sorry you had a bad reaction to the 2nd vaccine dose! You have the same attitude as those I know who are in the medical field - the reaction was better than a ventilator or death from covid and they all would do it over again. I'm hearing that the old folks aren't as likely to have a reaction to #2 as the younger folks - hope that is true as I fall in the "old folks" category and my #2 dose is coming up fast. Can't say I'm prepared to be sick for 24 or 48 ours but at least I'll know it's a reaction & will go away.

I'm just curious - is it the objective of NPlate to bring the platelet count into the normal range? I don't know anything about that treatment as all I've had is prednisone & WinRho. A count of 103k is super in my book Let us know how your count goes!

I am in the " old folks " group also as are many of my friends and acquaintances. The reactions have varied from just soreness at the injection sight to Flu like symptoms. I hope you will be one of the lucky ones.
NPlate is a weekly injection whose goal is to maintain counts above 50,000. The injection dosages range from 1 mcg/kg of weight to 10 mcg/kg of weight. You receive an initial injection at 1mcg/kg. If your count does not increase above 50,000, the dosage is increased to 2mcg/kg and subsequently 1mcg/kg is added as required. Once you are stable above 50k, your dosage remains the same unless you drop below 50,000 when it is again increased by 1mcg/kg or if you have two consecutive weeks at 200,000 or higher at which time your dosage is reduced by 1mcg/kg. If miraculously your count goes above 400,000, you are taken off NPlate until your count drops out of concern for blood clots. Approximately 18 months ago, I received the 1mcg/kg does and my counts rose into the 30,000 range so I was increased to 2mcg/kg. When my counts remained below 50,000, I was increased to 3mcg/kg. In that next week, I jumped above 200,000 for two weeks and was reduced to 2mcg/kg and then still remained above 200,000 so I was reduced back to 1mcg/kg. I have been there for approximately 16 months and with the exception of this past week and two other occasions remained in the normal range. I am hopeful my counts will climb back above 140,000 by this coming Friday.
I hope you have minimal reactions when you receive your vaccine injection

Good luck!

Carducci, glad to hear that your vaccination went well for the most part. I wouldn't be at all concerned with a count slightly over 100, because that's still in the range of normal, and not a bad "crash" at all. I was previously on Promacta for several years, a pill version of a TPO-RA medication like NPlate, and I was upset whenever my count got much over 50,000. The point of Promacta is to get into a safe count range and not into a "normal" count range. The risk of stroke with these medications definitely increases with higher platelet counts. Since your counts run so high with only 1 mcg/kg, I have to wonder what would happen if they spaced your shots out more. Getting up near the maximum allowable count of 200,000 would make me nervous, personally. Someone on these forums ended up with a stroke from a TPO-RA, so I've been more paranoid since reading about that. Certainly not something to experiment with while your body is adjusting to the vaccine for sure, but maybe something to look at after you have stabilized in a few months post-shot. You never know, maybe you've lucked out and achieved some kind of a remission and don't need much NPlate (if any)! You can toss the idea around with your hematologist down the road if your counts spike back up near 200,000.
Best of luck and congratulations on the completed vaccination!

Thanks for your comments.

Prior to Covid rearing its ugly head, my doctor and I were planning to try 1 mcg/kg every two weeks to see what my counts would do. We put that plan on hold thinking it was a good idea to hold my counts as high as possible until I could secure the vaccine. I will be seeing the doctor in three weeks and assuming my counts rebound back to a normal range, we will lay out a plan to go to two weeks. We will adjust from there based on how my body responds. I agree there are concerns for blood clotting. My doctor felt they were minimal in my case because I am at such a low dose.
Good luck with your treatments and I hope you sail through the vaccine doses with no issues.

Just a quick update. I haven't yet gone for another count (probably will go on Wednesday), but I haven't fallen off a cliff in terms of symptoms! No strange bleeding, nothing outside of my normal (low) levels from what I can observe. So it seems like maybe my body has some kind of a "floor" in terms of what it will do with regards to platelet count, and the vaccine didn't really affect that. I honestly suspect that I would have ended back up in the high teens quickly, as far as counts go, after the steroid effects wore off. So great news that I haven't crashed beyond what was probably normal for me. Still waiting on my Tavalisse rx.

I'm taking my mother-in-law for her second dose of Pfizer today, so that's also exciting to get her finished up!

Great news that you did not go off the cliff.
Good luck with your mother in laws shot.

Haemo just rang, 2 days post vaccination (Pfizer) platelet count was 19. It was 58 at routine test 6 weeks ago. I am completely asymptomatic.
Repeat count in 2 weeks to see if it has recovered. Watch and wait. If I have any symptoms repeat count asap and 3 day Pred bolus (20,10,5 then back to 2).

mrsb04 wrote:

Haemo just rang, 2 days post vaccination (Pfizer) platelet count was 19. It was 58 at routine test 6 weeks ago. I am completely asymptomatic.
Repeat count in 2 weeks to see if it has recovered. Watch and wait. If I have any symptoms repeat count asap and 3 day Pred bolus (20,10,5 then back to 2).

Well, I guess the good news is that 19 isn't a zero. I'm glad to hear that you aren't having any symptoms and I hope your platelets rebound on their own. Join the watchful waiting club and fingers crossed that we can all avoid that pred!

Hey mrs bo4 -
Since counts with ITP can jump around so much, I wonder if it was the vaccine or just counts jumping around(?) I know that my hemo used that as one criteria for my ITP diagnosis. Have you been in this range previously? So much of this can be coincidental and not necessarily caused by the vaccine - no surprise to anybody on this discussion, lol. Tough to tease apart without larger datasets. Thanks for sharing!

Following the second dose of vaccine, my count dropped to 103,000 after being in the 150,000 to 200,000 range for over a year. I receive weekly NPlate injections at 1mcg/kg. I changed nothing else in terms of diet and lifestyle from the previous two weeks when I was at 20300 and 213000. I suffered with fever, chills, muscle and joint aches and gastric issues for three days following the vaccine injection. My GP and my Hemao both felt my drop in count was part of my immune system reaction to the vaccine. That said, who knows since as you said rhyme and reason are not always a part of ITP.

StrayKat88
My count does not jump around much on Eltrombopag. When it does drop there is always a trigger,

oh mrsb that's the pits! Since your count of 58k was 6 weeks before the injection could it have gone down before that injection?

I'm not scheduled for another CBC until April I think - but I'm going to ask my hematologist if I can have one a week after my 2nd vaccine on Saturday.

That's just the thing - unless a daily count we just don't know. I don't think my count went down after the 1st injection, but I don't know because my count was the end of January and my 1st vaccine was a week later in February.

It could have done but usually triggered by something like a virus (not aware of one), excessive stress or medications of which I have had neither.
It's been pretty stable since I recovered from the Clarithromycin incident in July last year.
I already have the date for vaccination 2 so will book counts pre and post.

Sidebar question: Have you actually noticed a correlation between stress and your counts falling? It *seems* like I have, but it could be "all in my head" lol.