I have had ITP for just over a year now (diagnosed with a count of 3) and I am currently taking MMF to manage the count which seems to be staying around the 50 mark. My GP surgery has sent a newsletter regarding the flu injection this year and I wondered about the implications of having the injection or going without for those of us in the ITP Club? Years ago I knew someone who always had the injection and every year she had the flu immediately afterwards, which seemed to defeat the object!?
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CarryonwithITP
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her hemoglobin wbc also went down an year ago we did biopsy and thanks to Allah almighty there was nothing serious just some deficiencies but the ITP is still there
few months back dr. prescribe a medicine that actually make the unfunctional organs to function and mostly gave to the patients after liver transplant and other things the medicine u mention MMF i think it did the same function
after taking this for 3 weeks things gets better but there was sideeffects joint pains fuziness weakness alergy so we skip it
I am sorry to hear about your wife as she seems to be having a bad time. I seem to have very few side effects to ITP (a bit of tiredness occasionally and when I bruise myself it takes a while to disappear) so I am afraid I cannot really give any constructive advice to you. I also do not seem to be getting any side effects from the MMF either, but wish I wasn't having to take the high dosage in order to keep my platelet count up (52 this month). I have always eaten pretty healthily and continue to do so, and try to exercise when I get the chance. All I can say is try and get on with as normal a life as you can. Good Luck.
I can only speak to my experience, but my platelets slightly increased due to the flu shot. It could be because my ITP was caused by an auto immune response that caused my body to attack its platelets. When I got the vaccine, I guess my body took a break from the platelets to attack something else maybe. I would take the advice of your hematologist just to be on the safe side. Good luck.
I also had the flu jab last year and had the same my platelets went up. I have found that if I’m unwell my platelets rise so I am of the same opinion while I’m well my body attack’s my platelets as soon as I’m unwell they fight that instead
Thank you for your comments. I think my platelets may react in a similar way as when I had a mouth infection (on the eve of my father's funeral earlier this year) my platelets went up (well doubled to around 100). Yes I agree, it gave them something else to think about/attack besides themselves! I am canvassing as many opinions as possible in order to make my final decision as to whether to have the injection. I never used to get colds when all around me used to get them, but I am not so sure what will happen in the future.
I had the flu shot for the first time last year. I’ve had itp, Lupus, and Sjergens, since July 2017. I have never been so sick! I don’t get flu A, I went straight to B! 9 days in bed! The muscle pain was so bad, every part of my body was in pain.
Unless they insist this year I don’t think I’m gonna get it. The less meds the better! Good luck
I agree, I don't like taking loads of meds, which is why I am querying about the flu jab. Sorry to hear you suffered last year and it seems that the jab may not suit you. Thank you for your input.
I have had ITP for over 15 yrs and avoided the flu jab as some friends seemed to be ill after but now i have grandchildren, and seemed to catch their colds, I had the jab for the first time last year and have not had a single cold since, so i will continue having it.
I have one granchild and will be picking him up occasionally from nursery so as you say this could be a major source of potential infection. Thank you for your reply.
I had never had a flu shot until two years ago. I have had celiac since I was a child and was always told with auto immune disease it wasn’t advised. Three weeks after my flu shot was when I was diagnosed with ITP with a count of 4. I think it may have triggered the ITP. I will be staying away from the flu shot.
Just a quick question. I got ITP right after a trip to Costa Rica. Cured ITP after parasite treatment, even though they could not find any parasites. Did you have any 3rd world trips before you got it?
I personally don't take the flu shot cause it makes me get the flu. But that is not everyone.
Hi Caro I had my spleen out as part of the treatment for ITP so am very susceptible to picking up anything going. each time i had the flu jab i got ill for 4 weeks afterwards so last year i decided not to have a flu jab. Instead i got ill for 4 months. I will bite the bullet and get ill for 4 weeks instead this year.
Sorry to hear you suffer so with the flu and flu jab. I still have my spleen so am probably not so susceptible to infections as you, but thank you for your reply.
I am busy at work until the end of the year so this year i will leave the flu jab to as late as possible. Usually means i am ill over Christmas which is not much fun. Hope all goes well with you.
Hi there, I would advice against having the flue injection. I had the injection myself,2 years ago. The injection resulted in about 6 or 7 blood blisters in my mouth, which was not very pleasant . My hemotoligist advised against it,after my reaction. I have a very low platelet count of 2. Regards JAN
Just stumbled across this thread. I've had ITP for over two decades. I have always avoided medication and injections when I can but over the last couple of years I've accepted my GP's surgery invitation of the Flu jab and both times I seemed to get fully blown flu symptoms for over two weeks
However, whilst others have reported improvements in platelet counts after Rituximab, I have ended up with other chronic ailments after taking it and no difference in platelet levels which are usually around 10-30.
Hi Thank you for your reply. It really seems as though it is pot luck with regard to having the flu injection with no clear indication - as with everything connected with ITP!
I have a flu vaccination booked but I've had ITP for 16 years and never had a flu jab before...
My platelets vary from 80-130 at the moment but did go down to 9 once and I had a relapse 2 summers ago and went hospital with a flare up... covered in spots etc.
Iv read the article from anthonyh7..he sent me a link which suggests I should have jab especially as Covid is around this year as well....
It would probably be fatal to catch both viruses... even having the flu would be worse than the jab it says.
I'm a retired woman who has been told by nurses I should have the jab... also the shingles one... the pneumonia one and the meningitis and sepsis one.....
but I'm soooo worried re consequences.. they say it's not a "live" jab but even so... could lower platelets and would they ever get back up again...
I'd be very interested to hear your thoughts on this...
Hi My count is mostly around 40 and I’m not on any medication but I have had the flu jab every year since I got ITP in 2016 and I have never got flu from it
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