TOPIC:

Hello everyone!! I have a question regarding if anyone has ever heard of Tamiflu helping a platelet count. I am a registered nurse, and my husband has ITP (since age two, 33 years old now); he has had treatments including splenectomy, IVIG, predisone for 10 yrs, rituxin, and now Promacta. His count usually hovers around 10-20K.
He was prescribed Tamiflu 75 mg po about two months ago for feeling sick with the instruction to stop taking it after a couple days if he started to feel better (the NP didn't confirm the flu with any diagnostics; she didn't want to get a nasal swab as his count was 18K and his passage was already pretty raw and sore). He took two days' worth, started to see improvement in his flu-like symptoms, and then stopped taking it. Five days later, his count was 203,000!! The next week, 256,000!!! His mother confirmed these were the highest counts he's ever had. However, the following week it was 10K, then 18K the week after that. Thinking he was onto something with the Tamiflu, he took the remaining dosages, and saw an increase to 116,000.
I just wanted to reach out to the community to see if anyone else has had any similar experiences with Tamiflu. I know warnings exist that it may lower platelets, and we are trying to get a feel if it was just a coincidence or if he is actually is onto something.
I have found two research article summaries which might corroborate our suspicions.

www.ncbi.nlm.nih.gov/pubmed/21063076

www.ncbi.nlm.nih.gov/pubmed/25166956

Thank you for your time!!

I don't know but flu itself send my counts up like that. Some viruses do that.

Well it would be great if that is another treatment option! I wonder how long one can take tamiflu!

I had the real [as opposed to what some people call "the flu"] flu and my count went up to 401k.

www.fda.gov/Drugs/DrugSafety/PostmarketDrugSafetyInformationforPatientsandProviders/ucm188859.htm
Q. What are the most common side effects of Tamiflu?

A. The most common side effects of Tamiflu are nausea and vomiting. Usually, nausea and vomiting are not severe and happen in the first 2 days of treatment. Taking Tamiflu with food may lessen the chance of getting these side effects. Other side effects include stomach (abdominal) pain, nosebleeds, headache, and feeling tired (fatigue).

Q. What are the serious side effects of Tamiflu?

A. Children and teenagers with the flu may be at a higher risk for seizures, confusion, or abnormal behavior early during their illness. These serious side effects may happen shortly after beginning Tamiflu or may happen in people when the flu is not treated. These serious side effects are not common but may result in accidental injury to the patient. People who take Tamiflu should be watched for signs of unusual behavior and a healthcare provider should be contacted right away if the patient shows any unusual behavior while taking Tamiflu.

Rare cases of allergic reactions, including serious skin rashes, have happened in people who take Tamiflu. If a rash develops, stop taking Tamiflu and contact a healthcare provider right away.

This discussion has piqued my interest.

I'm taking NPlate with 5 mg of prednisone/day and counts have been generally too high for about 4 months. Having trouble trying to get off the prednisone so that the NPlate dose can be tailored to produce a 50-ish count.

Two weeks ago, count was 240. I was given the usual doses of NPlate and pred.
One week ago, Dr. was on vacation. My insurer requires an MD to be on site when I get an injection. Since count was too high anyway, he thought it would be okay to skip the weekly injection and take just the pred.

About 10 days ago, I came down with some virus that I'm still not completely over. It's a doozy.
Today's count was a shocking 502.
So this thread has left me wondering about a "viral effect" of some kind.

Then again, a few years ago I had a virus and ended up in single digits... A whole other kind of "viral effect", it seems.

I think I read on its labeling that tamiflu has potential liver and kidney damage as one of its rare but known complications. I don't think any doctor or insurer would approve tamiflu for long-term use, but it would truly be great if a good treatment could be developed as a result of this effect.
Norma

Norma I thought I read that too and now can't find it - found this:

www.tamiflu.com/side-effects
Let your doctor know if you are pregnant, nursing, have heart problems, breathing problems, a weakened immune system (immunocompromised), kidney problems or other medical conditions as Tamiflu may not be right for you.

www.netdoctor.co.uk/infections/medicines/tamiflu.html
-Lists as a possible side effect: Liver inflammation (hepatitis)
-Under Warnings: At the moment it is not known how effective this medicine will be at treating or preventing flu if you have a weakened immune system, for example due to HIV infection or treatment with immunosuppressant medicines such as chemotherapy or corticosteroids

Just saw in the pdsa newsletter that they are doing research on tamiflu treatment and ITP! Myabe tu were right all along and it will soon be a treatment.

hi, im very interested in trying Tamiflu for my son, have you heard any new positive news about it? My sone doctor has never even heard of it being involved with ITP, I really think doctors only know what they are told by the medical field. Thanks.

Hello. Unfortunately, neither my husband's hematologist nor PCP will order Tamiflu for his ITP, as it has not been FDA-approved for that indication. I keep hoping either it will be approved soon or something else will be developed for treatment-resistant ITP. My husband has been getting weekly shots of Nplate for several months now, and his count has been hovering between 15-30. He has had no major hemorrhages, although. My prayers go out to you as you look for the best treatment and care for your son.

semd Tamiflu is for those who have the real flu and must be given shortly after symptoms appear. It is not a treatment for ITP.

www.fda.gov/Drugs/DrugSafety/PostmarketDrugSafetyInformationforPatientsandProviders/ucm188859.htm