I haven’t yet checked for any articles but I was wondering if the Covid vaccines are going to be safe and effective for ITP sufferers given our immune systems being compromised (or am I wrong? I was once told - except for when at the beginning I took steroids - that my immune system was overactive.
Any thoughts?
Been doing some reading around and it states in the public health publication that those with compromised immune system might not respond or make antibodies........ and am left asking so what then. Don’t know if I have answered your question or caused more concerns
Thanks Della30. Will ask my consultant when I next see him.
On the ITP support page there is a post where an ITP professor has written his opinion on the vaccine and its safety. It’s a very interesting read and informative 👍🏻
Thank you for flagging that ups wheels. Yes I posted the article out a few weeks ago but here is the link for anyone who missed it -
Hello Gabriella, the following link may be of interest. It is written by Professor Adrian Newland CBE one of the ITP Support Association's medical advisors and a leading ITP expert.
The article is at the following link - itpsupport.org.uk/index.php...
Thank you Anthony I will follow the link with interest
Anthony, I have read Professor Newland’s article but it does not mention how the immune system would be affected by the covid vaccines which I had hoped to learn about.
I will ask my specialist about the issue that you raise, namely - how will the vaccine(s) affect the immune system.
I will also ask the ITP Support Association to see if they can get one of their medical panel to perhaps try to explain in laypersons terms what the vaccine(s) do to the immune system and generally how they work.
Will let you know how I get on.
Thank you very much. Hope you’re staying safe and keeping well.
I would like to find out if any test have been conducted with the Covid injection on people who have ITP. It would be interesting to see if any tests have been conducted. My platelets are very low usually are about 5 to 7, I never have the flu jab!. As only had it once and had about 10 blood blisters . Which I sometimes get in my mouth if I have a cold. It would be reassuring to be able to find out. As not sure weather it will be safe for me.
I would also like to know what are the risks about having the vaccine compared to not having it
I think it is inevitable that when millions have been vaccinated and billions are due to be vaccinated against Covid that connections to rare incidents will be made. The fact is several million mostly elderly people with all sorts of medical conditions have already been vaccinated and we have one death with no proof of the cause. Against that we have thousands of deaths each day from Covid, currently almost 1000 a day in the UK alone. Until my haematologist says otherwise I’ll be in the queue for the vaccine as soon as it’s offered to me.
I think I agree here but perhaps all the same cases like this should be investigated
I’d like to see some more info on people with ITP having the vaccine before I have it
Hi Monty55555,
I have ITP and currently on Romiplostim. I had the Covid vax last week after discussion with my haematologist; she recommended having it and did a blood test 3 days before and arranged another for the next 10/14 days. Currently feeling very well apart from the usual ITP fatigue; no other ITP signs.
As an aside, the DM story you referred to appeared to have number of errors and inconsistencies. Very noticable that there has been no follow up on the cause of this single death, and no further suggestion that the vaccination could have been involved.
Had my COVID vaccine (Pfizer) on 14th Feb with no side effects other than a slight sore arm for 24 hours. I have been on Eltrombopag for the last 6 years and my average platelet count over the last year has been 96. I got a routine blood test 8 days after my vaccine and platelets were 106. So no real side effects from Pfizer vaccine and no real change on my platelet count.
I have asked this question as well and been told by several specialists and what I can gather is it shouldn't affect you no more than normal people but obviously as we have weakened immune systems anyway we might not get as good a immunity after being vaccinated hence why I don't understand why they changed the 2 nd dose date from 3 weeks to 12 weeks for everyone when those with weaker immune systems need more protection quicker
Thanks Metalgod! I guess we don’t know the scientific/medical thinking behind the 3 versus 12 week gap between doses. Going to get my second one come what may - supplies permitting🤭
Of course so will I and I don't think it's scientific thinking behind the gap more like back patting in parliament saying we got 25 million people vaccinated my problem is should they have given the 2 nd dose at original 3 weeks space to certain people who have weaker immune systems
Yes I think I agree
Well I have to have a blood test on Tuesday so I see how my platelets are as need to keep an eye on them as on blood thinner as well
Good luck!
When I get results I let you know how my platelets react if at all to the Pfizer vaccine
Yes do. I hope and believe it will have no effect. I had the Astrazeneca vaccine. I felt ill for about 12 hours but my platelet reading, taken 3 weeks after, remained steady. My gripe is that I can’t see my consultant to discuss reducing the dose of Eltrombopag (Revolade). He had said we could look at that after sustaining a count of over 50 for six months. I’ve been averaging high 60’s (74 in February) since last September. While I’m obviously grateful drug has helped keep me well, it has caused my hair to fall out and its texture has become like flyaway candyfloss☹️ Good luck with your jab.
Don't you have regular blood tests at least every 3 months then a phone consultation with your specialist ??As then you can discuss your treatment
Last year I did see the consultant fairly regularly and since the beginning continue to get the blood taken every month by a nurse. But he has not been having any clinics since Christmas and I think it’s because of his working with Covid patients in the hospital. I intend to go back to my GP to see if he can ask on my behalf for me to have a proper review
So does mine but she still rings me and sends me a time n day for call or one of her team does But you should ring up and ask to speak to someone if not him and voice your concerns
You’re right. That used to be the case but now I can only speak to the nurses and they don’t seem very sympathetic.
I would complain or speak to your gp and voice your concerns see if he/she can sort something out ?
Don’t like to rock the boat, but you’re right really. I have a very good and nice GP so will try to get him to mediate. I do feel rather miffed as I had sent a short email to the consultant via his secretary to respectfully ask if he could advise when the dose of Eltrombopag might be safely reduced to 25 mg/day, as the count has remained over 50 for the past 6 months. I got no reply, just a copy letter from him to my GP to say I was to stay on 50 mg. I bet if I were a man or a private patient I would not have received such a brush-off. A 5 minute phone call would have gone a long way. I’m intrigued by your “name”! Are you into heavy metal or are you a metal detector enthusiast?!
I work in the music industry and rock / metal is my preferred genre But I would sink the boat let alone rock it lol
After all its about your health and in fact you are actually there boss in some way as you contribute to there wages
👍nice to meet you!
And you 👍
Itp 27yrs O+ platelets numerous allergies randomly steady at70k after two surgeries (they’ve been 10k and steady for decades at 48k) I finally decided on PFizer. Getting weekly blood tests. 1st shot no side effects.
My ITP
ITP and hair loss (alopecia)
ITP and Chemo
NEW with ITP