Frequent traveler dealing with ET and concerns

[marinescientist]

Hello everybody,

I was diagnosed with ET (presumably at least) 6 years ago. I started with Anagrelide and found it did not work for me since I developed heart racing. Therefore, I was put onto Interferon.

Though it worked, I found dealing with health insurance and taking the vaccines onto planes quite difficult since I am a frequent traveler.

I had my last Interferon shot 4 months ago and was traveling around and then moving to another city - which made it harder to get an appointment with a specialist.

My platelets now rose to 1200 and I have been waiting a week for an appointment with a specialist. I am not sure if I should worry about the values (I am taking ASS right now) and what a good next step towards a new medication would be since it is really difficult to get the Interferon nowadays in Germany.

Which medication do other people within my age group use and how do you in general deal with anxious feelings about rising platelets?

Thanks

[hunter5582]

I am also a fairly frequent flyer as I travel for business. I have not had any trouble traveling with interferon. I use Besremi, which cannot go through the X-ray machine. It must have a visual inspection. I make sure to travel with the doctor's letter and instructions regarding the need for a visual inspection. It has not been a problem, including during international travel. I use a high quality insulated bag. Others use the dedicated insulin refrigerated kits. Both work.

You are wise to act on platelets being at 1200. In addition to risk of thrombosis, there would be a concern about the increased risk of hemorrhage with platelets that high. Glad to hear that you have an appointment soon.

I had not heard that there was a problem in Germany accessing one of the PEGylated Interferons. It is in common use for treating ET. Hopefully, you will be seeing a MPN Specialist who will more likely know how to access PEG. Just in case, here is a list of MPN Specialists. There are three listed in Germany. mpnforum.com/list-hem./

WIshing you all the best.

[Lasbrisas1]

Wohhhh you are very high, I thought I was with my PLATELETS at 765....I am Alternative Medicine so started using Cayenne Pepper, in one month brought my PLATELETS down to 442 from 669...XERALTO and HYDROXY UREA were doing it fast enough .

Hope it works for you ❤

[Lasbrisas1 in reply to Lasbrisas1]

WERE NOT DOING IT FAST ENOUGH...

[Hydranga18 in reply to Lasbrisas1]

Did you use Cayenne Pepper while still taking Xralto… I thought Xralto was just for thinning the blood .. and not for reducing Platelets.. Thank you

[Lasbrisas1 in reply to Hydranga18]

Yes, I did....XERALTO, IS A BLOOD THINNER, HYDROXY UREA TOO, THEY WERE NOT REDUCING MY PLATELETS ENOUGH, SO THEN I TRIED ALTERNATIVE MEDICINE WITH CAYENNE PEPPER, IT WAS FANTASTIC, IT WORKED , IN ONE MONTH DOWN FROM 669 TO 442,

IF YOU READ ABOVE ITS ALL THERE HOPE IT WORKS FOR YOU ❤

[George1976]

do you feel ok? I had a similar line of treatment, anagrelide then switched to peg due to heart racing. If you have no symptoms you probably only need minimal treatment.

[marinescientist in reply to George1976]

Yes I feel completely fine, luckily 🙂 I do sometimes feel a tingling feeling in my hands or legs. But that is quite rare and I feel it difficult to tell if that is because of imagination or actually symptoms. I got a bit scared after the phone call from that doc, though I have had my platelets at 2 Mio already some years ago.

The doctor here told me it is enough to treat it with ASS. However, since I moved they do not know much about my past history with ET and I feel like I would like to find a new specialist.

[Solyesh]

I travel every other week, long-haul (10-16 hours usually) for business and have no issues with Peg. I always travel with my prescription/note from the doctor and a very small cooler. If Peg is difficult to come by in Germany then that is definitely a consideration and insurance can be very problematic but I personally think it is worth any hassle as it has generally worked for me and I am hopeful that it will help stop any progression and might even eventually put me into remission.

[marinescientist in reply to Solyesh]

Probably then it is more a difficulty in Germany. I did prefer it much more than the Anagrelide, though I still after all these years have my difficulties with the injection and would sometimes prefer to have just some pills. But lets see how it will continue and what kind of agreement I can resolve with my health insurance!