I do hope the Plaquenil will help some of her antibodies disappear! That would be nice!

Caitlin DOES have the flu now. Her fever went up to 104 yesterday so I knew she had to have more than just a cold. Took her back in and she tested positive. Due to her being on the Tamiflu, I decided to hold off the Plaquenil but I have filled it. I will start her on this when she feels better. My other daughter has the flu as well, but her fever is staying right around 100-101, so not too bad. Both girls feel miserable, but they said the headache seems to be the worse part. Hope both feel well enough to go to school tomorrow, but I wouldn't be surprised if they miss tomorrow and Tuesday.

We've been hit with a hard freeze after having a warm weekend in the 70s. Our schools are closed again today for the 3rd day in a row and I don't think that's EVER happened where I am (Texas)as long as I can remember and I was born here. Due to the icy conditions, we haven't been able to get out and we are really suffering from cabin fever! How do you guys do it? There are only so many games and so much tv that we can handle! I am so ready to just get on the roads and drive slow. May even try hitting the mall today to get out for a bit! I'll just drive 5 mph if I have to! (Texas drivers don't know how to drive in these conditions.) We're supposed to get some snow tonight and I wouldn't be surprised if they keep the schools closed again tomorrow. We've had rolling blackouts throughout the day because the electric companies can't keep up with the demand. At least they're keeping the roads sanded down over at the Cowboy stadium so that the Superbowl can go off without a hitch. (Supposed to go above freezing starting Saturday.)

On the plus side, my girls have been able to completely heal from the flu and they only had to take one day off. The Tamiflu worked fast!

Hi all,

Was hoping 2013 would bring some better luck, thus far not such a good start. Wife went in for her weekly count as she tapers her prednisone. She's 5 weeks post rituxan and has now get the flu. Her hematologist asked for a swab test which came back positive for influenza A. She's now on tamiflu 2x 75mg.

Anyone else ever use that antiviral? The silver lining is that her count was 144 so she's still very safe from bleeding.

Thanks

Jay

You might ask your hematologist if you can have tamiflu. I would be a shame to lose all those lovely platelets because your system kicked into overdrive on those viruses.
Norma

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.

Hi everyone,
I've been on here for the past 6 months reading everyone's posts- (but never posted myself) trying to get familiar with all that is going.
My son was diagnosed 7 months ago with a count of 1,000.
Had 3 rounds of IVIG which only lasted a few weeks each time.
He's been hovering between 40-60's for the past 5 months without needed any further treatment- Except for 3 different times.
The first time he jumped to 221 after having the flu and taking tamiflu and then dropped back down. The second was during the summer when he was between 80-90's - and dropped back down as soon as the weather wasn't so great- and this last time jumped to 155 after taking augmenten for strep and now dropping again.
My question is..
Did anyone else have this same effect with either antibiotic and or vitamin D.. Or could be just a coincidence?
I get so excited when I hear those high levels, only to be dissapointed a few days later when I start to see the bruising again.

I've had a similar experience. My hematologist enthusiastically has me supplement vitamin D as well as B12 and folate because I am quite deficient otherwise, but this has no effect on my platelet count. However, my best count in the past five years came last December as I was recovering from a cold/flu; it hit 163, which was very exciting.

I sometimes say that my count goes up when my immune system is too busy doing something else do be bothered with platelets. I doubt it's that simple, and I haven't read anything in the research literature to suggest it is, but the correlation is hard to ignore.

Since tamiflu is an antiviral and augmenten is an antibiotic, whatever your son is experiencing may have more to do with what his immune system is up to than with the meds he's taking. Either way, I hope his count continues its upward (if erratic) trend.

Hi, I am a 32 year old male, healthy firefighter/paramedic. Just 3 months ago I wasn't on any medications. Around the beginning of the New Year I came down with the flu which for some reason took a toll on me (even after having the almighty flu shot). I was prescribed Tamiflu and after a week or so I was feeling much better. Around January 15th I began having nose bleeds, blood blisters in my mouth and petechia. I was admitted to the hospital on the 20th of January with a blood count of 5 and only a real complaint of being fatigued. They ran all the tests which came back normal and after the platelet transfusion I was diagnosed with ITP, a result from the flu!!! In the hospital they gave me 2- IV solumedrol infusions at 1000mg, I believe. Platelet count at 170. I was then released with a high dose of dexamethasone to take for 4 days, so high the pharmacist called the doctor to confirm. The hematologist told me that the ITP might come back or my body could possibly stop destroying my platelets. Well, 2 weeks later my nose bleeds came back as well as the blood blisters. I am now being seen outpatient with a prescription of prednisone. Started out with 60mg for about 2 weeks and then 50mg for another 2 weeks. I am steroid responsive so the doctor is tapering me down and since I have been on 40mg I began having EXTREME panic attacks. I have had 9 panic attacks since the 3rd of March which I went to the ER on the first one because I have never had one before and thought I was dying. My hematologist doesn't think it is related but what I have been reading prednisone is a nasty drug with a long list of side effects. My primary care has prescribed me a benzo to help with the panic disorder but honestly I end up enduring the whole thing( 1-2 hours) until I finally get sleepy enough to pass out:(
I am just looking for answers if anyone has heard of this or has experienced it before. I'm wondering if it could just be the fact that the tapering down is too fast or if I have been on the prednisone too long? Any advice would help me so much!!! I am not a weak person, my job is running into burning buildings and saving people in their time of need but now I need help and I don't feel like I am getting any answers. Once again, I stress that I have never experienced these panic attacks before so it has to be related to the steroids.

Matt:

Prednisone caused a similar thing for me, but I wouldn't exactly call it a panic attack. I knew what was going on and why. Prednisone can cause blood pressure to rise, the heart to race, and blood sugar to rise. My hands shook a lot and I felt so wired I thought my head would blow off. My job was stressful too which didn't help, so I would go into the restroom when I felt crazy and cry for a few minutes. It helped to release the tension. Doing that might not be possible or helpful for you, but it helped me to get through the days. I also had weird thoughts, but I knew the drug was causing it so I tried to find the humor in it. One example: I always watched MASH reruns at bedtime, but when I was on Prednisone, I couldn't stand the sight of BJ and Hawkeye because of their necks. That went on for weeks. Ridiculous. I also couldn't stand the sound of my co-workers voices. They may as well have been hitting a gong near my ears. It was all the drug and that became my mantra.

Realistically, you do know that your spleen is not going to explode, right? If it's not enlarged (which it shouldn't be), your spleen is perfectly healthy.

Prednisone can also cause that disconnected feeling. I remember not caring about anyone but me. I was so focused on myself that I didn't even care when my sister's appendix almost burst. It felt like she was some stranger that I had no connection to. You have to keep telling yourself that it is just the drug. I told my Hemo what was going on and he said, "No one else on Prednisone feels that way". Well come to find out from this site that yes, many people do feel that way. I learned how to just breathe and ride it out. I felt like it was more of a 'wound too tight' feeling than an anxiety attack, but it seems as if they are close.

It will get better as you taper down. Fatigue usually occurs during the taper, so that is the next fun thing to conquer. You'll get through it...most of us have been there. Prednisone is a wicked drug as is Dex. By the way, Dex is prescribed at high doses for ITP, usually 40 mg's for 4 days. It can shoot counts up but they sometimes drop back down quickly after that.

You'll get lots of support here. Most of us have been through the gamut. It's also possible that Tamiflu triggered the ITP; that can sometimes occur with medications. Many people do recover from ITP within a few weeks or months after an illness, so that could happen to you. Only time will tell. In the meantime, just hang in there.

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.

The severity of ITP and effectiveness of treatments vary from patient to patient. A new Canadian study shows why there is such variance in both. Platelet surfaces are covered with thousands of different proteins. Each type of antibody targets a specific protein on the platelet. When the first antibody finds a platelet it latches on and leads the platelet to an organ in the body where the platelet will be destroyed. Originally it was thought all ITP antibodies lead platelets to the spleen to be destroyed. Most previous treatments for ITP were to prevent antibodies from destroying platelets in the spleen.

Dr. Heyu Ni, researcher at the Keenan Research Centre for Biomedical Science of St. Michael’s Hospital, in Toronto, said some antibodies destroy platelets in the liver, not in the spleen. Research studies with mice found that antibodies targeting the GPIb (pronounced ‘G P 1 b’) protein lead to platelet destruction in the liver. However, antibodies targeting the GPIIbIIIa (pronounced ‘G P 2 b 3 a’) protein caused platelet destruction in the spleen. By detecting the specific antibodies in an ITP patient, doctors may be able to determine where and how the immune system will attack platelets. Dr. Ni said, “… because we now know the liver’s immune response destroys platelets that are covered with GPIb, we may be able to design new therapies to stop this type of destruction.” He said certain drugs, like Tamiflu, might be able to prevent the liver’s immune response to platelets. Additional tests with human blood samples showed Tamiflu may inhibit destruction of platelets with antibodies that target GPIb. Some ITP patients around the world have now been treated with Tamiflu for their ITP. However, more research is needed.

Heyu Ni, et al. “Desialylation is a mechanism of Fc-independent platelet clearance and a therapeutic target in immune thrombocytopenia.” Nature Communications 6, Article number: 7737 doi:10.1038/ncomms8737.

“Study in mice may identify new ways to treat immune thrombocytopenia.” Report provided by St. Michael’s Hospital, Toronto, Canada. July 17, 2015.
www.stmichaelshospital.com/media/detail.php?source=hospital_news/2015/20150717_hn

I already new that for some people platelet destruction occurs in the liver and not the spleen. One thing that was new to me was the idea that platelet destruction in the liver is the result of different antibodies which respond to different treatments. I also had not read before that Tamiflu (oseltamivir) may be able to treat one specific form of ITP, such as here:

Successful treatment with oseltamivir phosphate in a patient with chronic immune thrombocytopenia positive for anti-GPIb/IX autoantibody
2015, Vol. 26, No. 5 , Pages 495-497 (doi:10.3109/09537104.2014.948838)
Linlin Shao, Yang Wu, Hai Zhou, Ping Qin, Heyu Ni, Jun Peng, and Ming Hou
informahealthcare.com/doi/abs/10.3109/09537104.2014.948838

Also, I did not know that different ITP antibodies had actually been identified.

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

Was looking over the FB page and saw this link to "Platelet desialylation correlates with efficacy of first-line therapies for immune thrombocytopenia" study, dated February of this year. Pretty new.

What they came up with was that those that do not respond to either steroids or IVIG (first line treatments) have unusual platelets. The platelets have been ' desilylated '. How that happens appears to be a mystery. The row labeled 'NR' of Table 1 really show this relation well.

At the end, the author(s) says that ' Tamiflu ' is a inhibitor of certain desilylations - suggesting it may increase the effectiveness of steroids and IVIG in those normally unresponsive.

In trying to speculate what is going on, I wonder if the immune system / body is doing this desilylation because it thinks platelets are the flu itself. I guess, that wouldn't be too surprising. Unfortunately I didn't see anything which might suggest why some folks (eg myself) respond to IVIG and not steroids. Or, vice versa. Blah.

Has anyone ever taken Tamiflu and had their counts go up as a result? A quick search on PDSA suggest the association is true. Take a look at this thread from two years ago. Interesting read. Count went up to 256 - which was a record for that person. Wow.

At this point, I wonder if Dapsone is somehow related. Rob?? And then there is 'rescue' therapy. Folks who are non responsive to IVIG might suddenly become very responsive when combined with Tamiflu.

Ok Keli, how is that for new stuff?

Well, isn't flu vaccination where they give you dead flu microorganisms? Your immune system learns the flu type from consuming and removing the dead flu? If you did indeed get ITP from a flu vaccination, and are unresponsive to first line treatments, sounds like that is more evidence to support the ideas presented in the study.

Here you were probably thinking you were in a poor situation with failed first line treatments from having 'GPIb-IX' type of ITP. Right now it sounds like researchers may be working hardest on this very type of ITP. Tamiflu being a new tool in the arsenal. I wouldn't be surprised if they came out and said something like this. You need to take a Dex pulse while simultaneously taking Tamiflu, because you will respond strongly and it might put you into remission. Or, even better, if you get into remission taking low dose Tamiflu will keep you into remission. I don't really know though. Just some ideas...

In a related note, I did find out that there is a natural neuraminidase inhibitor - which is what Tamiflu is. The natural inhibitor is 'black elderberry'. I bought some elderberry cough and flu tablets at the store but their strength is very weak. May get stronger stuff to try. I don't think I have GPIb-IX type of ITP (I respond to IVIG) but apparently all ITPer's have some amount of desialylation going on. So for me at best the benefit might be slight.

If the 'crazy' level on this subject isn't high enough already, here is a step higher. If I'm reading this study correctly, desialylation is going on in the liver. And also, platelet destruction is occurring in the liver. That would then suggest why one would be refractory to steroids and IVIG. Fairly sure the mechanisms for those drugs target platelet clearance in the spleen and not the liver.

That's all very interesting. My indium scan showed platelet destruction in both spleen and liver so I think I must be the GPIB-is type. I am however resistant to Dex too( never felt so awful to no avail). I's good to know that if my response to Promacta goes downhill again Tamiflu might be a possiblity.Don't think I want to experiment with it at this point.

Sandi, any idea what a 'treatment gap' might be reference to? The only thing that comes to my mind would be something to do with Tamiflu and those that don't respond to first line treatments.

Think about the study/article this way. The author(s) openly renounce splenectomy, and, they espouse going to TPO-RAs for second line treatment. Also realize that the authors are doctors and can easily be privy to experimental projects that can have lots of promise that few know about. If some 'novel therapeutics' does come out, this article is going to sound like pretty sage advice in hindsight.

Hal, What are you referencing when you mentioned Tamiflu? Has there been a study that shows it helps?
Last hospital stay was due to the flu so I was given IVIG (2 doses) since platelets were down to 3 and Tamiflu. My counts sky rocketed I peaked at 145. Last week I was down to 10 again and giving IVIG (1 dose), I only got up to 17.

DmMann,

Here you can see PDSA search results for Tamiflu related to treating ITP:
pdsa.org/discussion-group/search.html?query=tamiflu&searchdate=all&childforums=1
It is a very intriguing possibility that for some forms of ITP, Tamiflu may be effective.
Most of the evidence is anecdotal, but there is a theoretical basis for it, having to do with desialylation.

That's very interesting D Mann. Take a look at this thread .

From what I've read looks like Tamiflu may help most ITPers at least a little. Who it helps the most are those that have 'GPIb-IX' type of ITP. These folks normally don't respond well to either steroids or IVIG. The reason why Tamiflu seems to help those folks is because it reduces/blocks platelet destruction in the liver.

Both you and I seem to respond well to IVIG and have a weak response to steroids. At this point it is academic, but I suspect that the type of ITP we have is where one has antibodies to Thrombopoietin. And with that, I expect we both will have good responses to Promacta - counts ramp smoothly up in two weeks. The proof is in the pudding though and time will bear the facts. It's just a theory....

Yea, I think it is little known that George J. had ITP.
www.youtube.com/watch?v=gTZ91YtKLN4
For him, it didn't really seem like a train. Nor like a roller coaster. But it did resemble a treadmill in his world. A treadmill that could get out of wack but could be brought back into control - with help.

I was just sitting here trying to brain storm this terrible situation. As I understand the antibodies at play, I can't see a reason why IVIG shouldn't restore a loss of NPlate response when one has developed antibodies to NPlate. The response should last only as long as the IVIG, but who cares. Rj, might ask your doc to give it a shot, LOL, literally. A safe option.

If IVIG doesn't restore the response then NPlate is being destroyed in the liver instead of the spleen. And in that case, Tamiflu has a chance in restoring the NPlate response.