Pre MF

[otisthedog]

Has anyone been diagnosed with pre fibrotic mf but being treated as et because of high platelets?

[Cindy12]

Hi otisthedog. Yes I was diagnosed with prefibrotic MF in 2016 and am treated as ET because of high platelets. My condition was described as half way between ET and MF.

[otisthedog in reply to Cindy12]

Thanks for your reply. What are you being treated with?

[Cindy12 in reply to otisthedog]

I am being treated with hydroxycarbamide at the moment although I did try pegasys early last year but I had such a bad skin reaction at the injection sites that I went back onto hydroxy after 9 weeks. By the way, I should have said I was diagnosed in 2014 rather than 2016. Time flies when you get to my age! The only disadvantage with hydroxy is that I have had basal cell carcinomas on my lower legs recently, the last one was in June when I had to have a skin graft and it still hasn't healed. I am not on any blood thinners.

[otisthedog in reply to Cindy12]

Thanks for your answer. I have a history of Basal cell. Am on HU so it is concerning. How high are your platelets?

[Cindy12 in reply to otisthedog]

My platelets were 466 in June and I am on 10 hydroxy a week. When I was first diagnosed my platelets were over 1300. I am Calr.

[otisthedog in reply to Cindy12]

I have jak 2. Platelets are at 460.

[cmc_ufl in reply to otisthedog]

Your platelets are barely out of the normal range. You are lucky your physician even thought to test you for a MPN. Out of curiosity, how long have your platelets been at that level? Do you have record of past CBCs where your platelets were lower (in normal range)?

[otisthedog in reply to cmc_ufl]

My platelets have been climbing since 2016. Jak 2 positive in 2020. They have been as high as 872.

[cmc_ufl in reply to otisthedog]

Gotcha. So the 460 platelet count you cite here is your count on HU, not your baseline count? This makes more sense.

[otisthedog in reply to cmc_ufl]

Yes started in the 800 range

[katiewalsh]

Hi. I’m in the same position. I’m treated w/ hydroxyurea plus blood thinners as I have a history of blood clots. Katie

[littleluigi]

Hello, Also being diagnosed with Pre-MF Jak2+, being treated with blood thinners / pegasys / phlebetomies

[otisthedog in reply to littleluigi]

How does the Pegasys work for you ? Does it lower your white counts?

[littleluigi in reply to otisthedog]

Yes my whites been to low on weekly dose from 90, they adjust my dose to 45 weekly. Platelets are in range now after 6 months. Now my whites are just above normal

[otisthedog in reply to littleluigi]

Thanks for the info. Do you see a specialist?

[littleluigi in reply to otisthedog]

Yes I do, I need to visit the hospital every 4 weeks

[otisthedog in reply to littleluigi]

How much Pegasys do you inject if you don’t mind my asking?

[littleluigi in reply to otisthedog]

45mcg weekly, no problem 😉

[otisthedog in reply to littleluigi]

Thanks for sharing. That is the dose I was on but it dropped some of my white counts to zero. Basophils and neutraphils to below normal. Just trying to figure it all out.

[jointpain]

Hi otisthedog, I think you will find the treatment for pre fibrotic MF and ET will be the same. The only real difference is that the results of bmb shows either no fibrosis for ET or little fibrosis for pre fibrotic MF of the bone marrow. Both will produce too many platelets. Full MF will eventually produce too few blood cells and the bone marrow will be fibrotic. My lovely wife has been diagnosed with MF but as her bone marrow is very lightly fibrotic and can produce way too many platelets if allowed we think and told the hematologist that it is pre fibrotic MF. He didn't want to know. Just wish he would retire.

[Magentas in reply to jointpain]

That really made me feel sad reading your comment. Ugh, it’s so hard to trust when it’s so hard to trust. I recently asked for a second opinion on my BMB because my symptoms for MF were lacking….for months I was deliberating/putting off going on Rux while being encouraged to, with almost annoyance from my haem, when I didn’t feel it was appropriate. We’ll the 2nd opinion diagnosed ET. Great, my life sentence that I’d been living with for months is now extended! 🙄 My fibrosis is reticulin not collagen if that helps. There is more re platelets behavior but I’ve not yet reviewed the recording from the Telehealth apt but I think how they congregate and their form matters.Anyway, I guess not much is changed in terms of treatment for me , it’s just another two options, possibly, that I can add in there and I hate the idea of both of them.

[otisthedog in reply to Magentas]

I agree with you. Either diagnosis is discouraging.

[EPguy in reply to Magentas]

I was Dx with PV, then changed to ET by a new Dr MPN specialist. I had mild focal reticulin fibrosis 0-1 and hi PLT. I've also read the ET can also have some reticulin fibrosis similar to Pre-MF.

[otisthedog in reply to EPguy]

Thanks for the reply. Yes it seems it is hard to tell ET from pre fibrotic mf.

[otisthedog in reply to jointpain]

Is she on any medication?

[jointpain in reply to otisthedog]

Yes, she is back on one hydroxycarbamide every other day, and three anagrelide a day. We are asking that she takes interferon, not for any reason other than it may just go into remission, which would be nice.

[otisthedog in reply to jointpain]

Yes I cannot seem to get a straight answer from any doctor.

[Magentas]

See my reply to member ’ jointpain’. Oh, my platelets are 750.

[Michael56]

Hi all interesting to read the many variations of responses from specialists, after symptoms of weight loss, breathlessness and worsening fatigue I had a BMB, there was nothing to suggest MF but haematologist convinced it was post pv pre- mg but continued with hydrocarbonide. I was finally referred to cardio and have AF and possibly angina after 6 months of chest discomfort and worry, with rising platelets and white cells MF has been ruled out with the heart issues totally missed. Long and short of it all, if you are not happy with what you are told keeping asking until it gets resolved, good luck and stay safe!