Progression Question/Experiences

[924-924]

Hello everyone,

I’ll try to keep this short. I was diagnosed with ET in March of 2020. My platelet levels were well above the 600 mark and after biopsy ET was confirmed. Since then, I have been on Peg. Peg seemed to work great for me. Brought my levels to within normal after just a couple months and hovered around 350 or. It is particularly important to note that this was on a 45mcg dose alone. Subsequently my Dr recommended a boost in dosage to potentially get into the coveted “remission” status or very low allele burden, so I was increased to 90mcg. At the 90 mark I started having bone pain and a few other issues, mainly anxiety related however it was around the same time I had had 3 FULL Covid shots (worst experience of my life). I had every symptom under the sun which I boiled down to my ET. With that, I came off peg for a few months, anxiety never went away and then back on at a 45 mcg dose.

Since then I have been on a 45mcg dose (supposed to be weekly) however I’ve been super apprehensive behind taking it that often bc of my numbers and symptoms. I’ve maybe been taking it every 19 days or so for half life purposes. With that my numbers are the lowest they’ve ever been around the mid to low 200 level. The trend seems to be my numbers are trickling down regardless of how much peg I’m taking and I’m having increased bone pain around peg injection time. Here’s the question lol, does this seem to indicate progression to myelofibrosis or no?

[924-924]

*Disregard the half-life time, total clearance is what I meant. .

[Hopetohelp]

Is it possible to have an allele burden test? Maybe you don’t need the peg anymore since the doctor wanted to achieve remission. Would definitely discuss with your haematologist as to whether to keep taking medication if figures are low. Let us know how you get on and good luck

[monarch5000]

Can't say much without knowing the same info your doctor already knows; i.e. all your blood counts before using Pegasys and what they are now. And your age, what your bone marrow biopsy said with regard the amount of fibrosis, mutations and allele burden.

[Wyebird]

if 45 of Peg every 19 days is controlling your platelets I’d say that’s Bril. Do you mean approaching jab time you get bone pain or as a result of the injection?

Not experiencing it my self I can only assume I too would get anxious when I know it’s going to start.

I too get really ill after covid shots. The first Az I was fine with. I’m dreading the next booster.

I should think only the medical staff can answer your query.

I do hope all will be ok.

[ainslie]

if you were diag 2020 with ET and assuming that diag was accurate , (if you had a BMB it’s likely accurate) it would be extremely unlikely to progress to MF in 3 years , so I would set aside that worry. If you can achieve remission of some sort that’s great and allegedly 20% of those who can tolerate Peg/Bes do but quality of life is also important, I don’t know of any evidence to say 90mcg is necessary but that’s a question for a expert. If your platelets are down to 200 on 45mcg then maybe 90mcg may lower platelets too much. There is also the possibility to do something like 65mcg to try.

[Mirror368]

This is really one for your hematologist. Make sure you tell him exactly how you are taking it.

[hunter5582]

Your concern about progression is understandable but that is not necessarily what is going on. There are too many variables that would affect platelet levels and other symptoms for any of use to make a guess at what is going on. You have a valid concern that needs to be addressed by your MPN care team. Hopefully, you already have a MPN Specialist on your team. If not, it is definitely time for a second opinion. Just in case, here is a list. mpnforum.com/list-hem./

All the best

[Solebury]

This really sounds like a question for your drs to assess. For what’s worth I was diagnosed with ET at age 53. It was fairly well managed with hydrea for about 14 yrs with the usual hydrea side effects. Now at 68 have slowly devolved to PV. Now stopped hydrea and on Peg at 180mcg weekly and numbers haven’t gotten much better over this past year. It seems everybody’s different which is why having a smart team evaluating you is so important.