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Tamaflu side effect is thrombocytopenia - really?!

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12 years 1 week ago - 12 years 1 week ago #41062 by KittieG
Hey all!

It's been a long time since I've been on - I hope you are all well.

I was diagnosed w the flu today, and then before she gave me tamaflu I asked her about platelets and relation w the drug.

Sure enough, a side effect of tamaflu is a decrease in platelets.

Since I do not medicate my ITP and my platelets hang out around 10-15k, she wouldn't give me tamaflu (which I agreed with, but it still sucked).

I have encountered conflicting messages over the years about the flu immunization and ITP - two hematologists said don't do it,one said it was fine. I have also heard on here about people who have had issues as a result.

But the flu SUCKS. I don't want this ever again!

What say you, PDSA friends? To shot or not to shot?

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12 years 1 week ago #41063 by Ann
What I say is that in the UK a report says that the drugs used to ameliorate the effects of the flu don't work at all. They are all up in arms about the cost of buying in loads of the stuff during the major flu outbreak.

www.bbc.co.uk/news/health-26954482

Apart from that I've been told by my immunologist not to have any vaccinations as they are likely to cause a platelet drop and the vaccine is also not likely, in my case, to work, so that helps in the decision.

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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12 years 1 week ago - 12 years 1 week ago #41065 by Sandi
Hi Kittie, long time no see!

Most drugs list thrombocytopenia as a side effect and even if it doesn't, it is still a possibility. Usually the drug will list 'bleeding or bruising' instead of thrombocytopenia and it can be buried in a very long list. I have no idea if Tamiflu really works to shorten duration and lessen symptoms but since the flu can also lower counts, the risk goes both ways. Just because a drug lists thrombocytopenia does not mean that it will affect you that way. Everyone is different. Even the meds used as ITP treatments list thrombocytopenia as a side effect.

Deciding whether or not to get the flu shot is a personal decision. Some people swear by it and some say it doesn't always work since they just guess at the strains of flu for the season. Complications can arise from the flu shot or the flu. I've never had the flu shot nor have I had the flu. If I'd been getting the shot all of these years, of course I would credit the shot when in fact it wouldn't have been that at all. I don't worry so much about the flu shot affecting ITP; I worry more about the other, more devastating side effects that can occur.

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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12 years 1 week ago #41066 by Sandi
Just read Ann's link. It says this "It concluded that the drug reduced the persistence of flu symptoms from seven days to 6.3 days in adults and to 5.8 days in children. But the report's authors said drugs such as paracetamol could have a similar impact." If that's true, why bother?

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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12 years 1 week ago #41069 by Sandi
Just an FYI:


Prednisone:

Hematologic

Hematologic side effects have included thrombocytopenia, lymphopenia, and, platelet alterations resulting in thrombolic events.

www.drugs.com/sfx/prednisone-side-effects.html

Rituxan

Hematologic

Hematological side effects have included leukopenia (11%), thrombocytopenia (8%), and neutropenia (7%). Severe cytopenias include neutropenia (1.9%), thrombocytopenia (1.3%), anemia (1%), and hypogammaglobulinemia. Postmarketing reports of grade 3 to 4 prolonged or late onset neutropenia have been received.

www.drugs.com/sfx/rituximab-side-effects.html

Vincristine

Hematologic

Hematologic side effects including anemia, leukopenia, thrombocytopenia, and central-nervous-system leukemia have been reported. Myelosuppression is generally mild. The drug does not appear to have any constant or significant effect on platelets or red blood cells.

www.drugs.com/sfx/vincristine-side-effects.html

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  • Melinda
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12 years 1 week ago - 12 years 1 week ago #41070 by Melinda
Interesting - I didn't see anything about bleeding or bruising here:
www.nlm.nih.gov/medlineplus/druginfo/meds/a699040.html

Well I won't credit the flu shot because I did get the real flu one year and I've had a shot every year starting in 1992 - evidently when I got the flu it was one that wasn't in the immunization because I was one sick cookie, I know exactly what you mean Kittie as it is AWFUL!

Like Ann I am not supposed to have any immunizations, found that out last year - however I opted to get the flu shot last October & take my chances w/platelets because I have 4 germ factories [grandchildren] I'm in contact with all the time. I'd rather have a drop in count than get the real flu!!

Hope you are better soon Kittie - take care!

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12 years 1 week ago - 12 years 1 week ago #41072 by KittieG
Thanks all - I may get it next year because now that I've tried the flu on for size, I'm definitely not a fan!

Sounds like tamaflu wouldn't have done that much anyhow. I'm ready for it to be over!

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12 years 6 days ago #41102 by GhostRider
This is interesting to read.

Along with my ITP I also have CVID.

Now by having CVID my immunologist wants me to have all the usual yearly vaccinations but has never mentioned that they could lower my platelet count.

Will have to have a chat to my Hemo to see if it they are worth having.

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12 years 6 days ago #41104 by Ann
Are you treated for the CVID? Mine is classed as borderline so not treated except I take antibiotics every day. It's taken me trying so many different drugs to get my platelets up that I don't want to risk a vaccination. But you might want to risk the vaccinations. It's a personal choice really.

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12 years 6 days ago - 12 years 6 days ago #41108 by GhostRider
At the moment I am not under going any treatment as they have classed me border line as well but they have mentioned that they might want me to take proabotics soon. My take view is that there is no garatuee that the vaccination will prevent me getting the flu but if it is certain it will drop my platelets then I will not take it

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