Biddy Platelets

[JeniMac]

I started on pegasys in October low dose 45mgmy Platelets are going up at each appointment. I went onto 90mg.last appointment they are up again so increases to 135mg.i seemed to be coping on 90mg but started high dose and Wham feel dreadful. Has anyone on here split there dose maybe 90 on Sunday and 45 on Wednesday. Not sure if this would work. Thanks and Happy New year to all 💛

[EssThro]

Sorry to hear about your problems, Jenni. I am not qualified to give advice on splitting the dosage, but it seems like a very logical idea. It seems strange that your platelets continue to increase as you raise your PEG dosage.

I also have a diagnosis of Pre-MF, taking PEG and doing well at 45mcg. I hope you are seeing an MPN specialist who would be able to confirm your diagnosis and treatment plan.

Good luck to you!

[JeniMac in reply to EssThro]

I'm seeing a haemotoligist not sure how to go about getting a specialist and don't want to upset my consul by going over her head as she is really nice if that makes any sense 💛

[hunter5582 in reply to JeniMac]

Good doctors never mind a patient seeking an opinion from another doc with a sub-specialty in rare diseases like MPNs. This is about your health, not the doctor's ego. I have two hematologists, a wonderful local hematologist (not a MPN Specialist) who provides ongoing care and a MPN Specialist who consults and advises on my care plan. We work as a team, which works quite well. I believe in the NHS that you need a referral unless you go private. You can find MPN Specialists on this site. mpnforum.com/list-hem./

Regarding split dosing for the PEG, you would need to get input on that from your care team. I have not heard of anyone approaching the dosing that way. What some of us have done is to increase doses in smaller increments than 45mcg. You could also ask your care team about trying a 112.5mcg dose to see if you can tolerate that better. Perhaps your body will adjust to a more gradual increase.

Wishing you all the best on sorting you care plan out.

[JeniMac in reply to hunter5582]

Thank you. Hope your well ❤️

[gilded in reply to JeniMac]

No responsible doctor should mind your seeking a specialist MPN opinion. After all, it’s your well-being and care that is paramount. Are you in theUK? The list a forum member submitted to you should contain a list of MPN specialists in the UK.

[JeniMac in reply to gilded]

Yes I'm in England ❤️

[Exeter21 in reply to JeniMac]

best to contact MPN to oversee your treatment process of Haemotology . They are the experts & helped sort my correct dosage 👍

[ciye]

I was on Interferon for over a year and my platelets didn't reduce at all, I have been back on Hu since July and the dip has been 30.. Interferon is slow acting it could be that 3 months isn't time enough to for it to work. I asked for a specialist referral, Heamo was more than happy to do this, professor Harrison was happy with my treatment. I had hoped to get on a drug trial with her but I had lung surgery which will always exclude me from trials.

[JeniMac in reply to ciye]

Are you in uk ❤️

[ciye in reply to JeniMac]

Yes I am

[JeniMac in reply to ciye]

Thanks will mention a specialist when I go for check up x

[AnBee]

my platelets took 6 months before dropping. I’m Post ET CALR and they were sitting around the 800 mark and my specialist was happy to manage any symptoms as necessary. After about 6 months everything improved. Were the platelets rising before PEG, when we’re you diagnosed and we’re you taking any other med prior to that

[JeniMac in reply to AnBee]

Hi. I have had ET for 14 years. I was on hu which was increased to 6 a day. I changed haemotoligist. She took me off hu then decided to do a bmb which showed fibrosis in bone marrow. She thinks I am now progressing to myelofibrosis. I changed meds to Anagralide and Platelets spiked from then.She then decided Pegysas would be better option. First one I took my platelets reduced. Since then they have gone up every time. I also have over active thyroid gland and take 175mg of Thyroxine Hope your Well ❤️

[Wyebird]

no but I met someone who was doing Oeg and hydroxi . Good luck

[JeniMac in reply to Wyebird]

I'm on peg and Anagralide ❤️

[Wyebird in reply to JeniMac]

oh I do hope all settles and you get good results soon.

[JeniMac in reply to Wyebird]

Thank you hope your well 💛

[Wyebird]

Peg not oeg🙄

[Exeter21]

MPN specialist advised low & slow to my interferon problem 👍

[DoubleF79]

Hi. I was on Peg initially & platelets only ever increased so it didn’t work for me. Do not ever worry about offending doctors or going over their heads. Ask all the questions you need to. Seek another opinion if you feel you need to. I’m now a year on Hydroxycarbimide & platelets are right down & stable. It was trial & error but worth it. Good luck x