Pegasys Update

[Solyesh]

Had bloodwork done yesterday and spoke with my MPN specialist today. Good news is that the Pegasys has really (so far) brought my platelets down. After one month they were 429 (first time in 7 years they have been in normal range (including 5 months on HU up to 1,500mg/day). Yesterday after two months, they were steady at 427!

So good news especially as it seems the response was fairly immediate. I had also been reducing my HU from 1,500mg/day to 1,00mg/day in month 1 and to 500mg/day in month 2. As there was no change in platelets despite the reduced HU dosage, the doctor has suggested I discontinue the HU completely (so a total of 2.5 months of weaning).

For now, we are continuing the Pegasys at 90mcg/week (dosed at 180mcg bi-weekly). I will have another full blood work-up in 5 weeks and we'll see at that time if platelets remain stable we might be able to reduce the Peg to 67mcg/week.

So far biggest complaint with Peg is bone stiffness/pain especially in the mornings..did not have this prior to starting Peg so attribute this to the medicine. (anyone else experiencing this?). Also some insomnia (but that was also an issue prior)..hopefully will be able to continue tolerating Peg well and might be able to reduce dose. I have noticed that my ability to do more intensive aerobic exercise has improved as the HU has been reduced..hopefully coming off might help with some of the weight gain I've experienced as well.

All other readings looked great (WBC remain in range which is also good) ; RBC slightly low but doctor is fine with that.

Someone mentioned Potassium the other day - my reading was right at high end and I asked doctor about that as well - his response was that it was nothing to worry about (unless it spiked) and a by product of "bloods".

[Bluetop]

It sounds like a very positive transition. Have you needed any venesections -and were you having them before the switch?

[Solyesh in reply to Bluetop]

Bluetop - no - have ET Jak2+ with only platelets elevated (and fairly stubborn leukocytosis - elevated WBCs which have now been brought into check via HU/peg as well) - no venesections

[ainslie]

HiI see you are on 180 of Peg every fortnight, this quite unusual, most docs would suggest 90 per week instead, you might feel better on that, 180 is a pretty hefty dose

[Solyesh in reply to ainslie]

Agreed. Asked my MPN specialist about that - one issue is that it currently only comes in that dose locally (as it is still off label for ET and approved for Hep C which is the dose given usually for Hep C treatment - interestingly enough the local health authorities skipped over Peg to go straight to Beresmi for PV...) but we have made a special order for both 90 and for 135 in anticipation hopefully to be able to reduce to 67/week as well.

[Jynx93 in reply to Solyesh]

I am on 45 weekly and I was told to just inject half the dose and throw the rest away. You would think they would make smaller doses, what a waste

[Sam2022 in reply to ainslie]

My doc asks me to take 90mcg/week. I typically injected half bottle(180mcg) then throw the remaining half, which is a waste.

[Hopetohelp]

I agree with ainslie. I am on 90mcg a week. When I first increased from 65mcg I noticed a few small side effects along the lines that you mentioned but they quickly resolved as body adjusted. Maybe a 90 shot every week would be easier on your body. Good luck

[hunter5582]

That sounds like really good news. It seems PEG is the right choice for you.

Arthralgia and myalgia are known adverse effects associated with PEG. It may be that you would find relief with an anti-inflammatory agent like Curcumin. It has worked better for me than any NSAID I ever took for osteoarthritis.

If the insomnia persists or gets worse, there are a number of interventions. Start with good sleep hygiene and/or CBT for insomnia. If that does not work, suggest avoiding most sleep aids. Some of the herbals can help without significant adverse effects, If you do have to move the sleep meds, then Belsomra (suvorexant) is the only med I found that helps without disrupting sleep architecture. That is the problem with most sleep meds. They knock you out but prevent you from getting truly reportative sleep.

Do note that pseudo-hyperkalemia is associated with thrombocytosis. It is an artifact associated with the breakdown of excessive platelets. It is not something to worry about as it is not actually a problem.

Hope things continue to be so positive.

[Solyesh in reply to hunter5582]

Hunter - thanks! Yes, so far so good on Peg. My MPN specialist is also quite happy with the results and we are both happy that it seems to be more effective, so far, with fewer significant SE for me. Of course, longer term hoping for some type of molecular and bone marrow response but only time will tell....

I started Curcumin last month, after reading some posts on here and speaking with my doctor. Hopefully it will help.

Agree on the sleep aids. I avoid them as much as possible as they do not produce, for me, productive sleep patterns (I like your phrasing of disrupting sleep architecture). I have always had difficult sleep patterns in that I have rarely slept more than 5-6 hours a night most of my life (even did a sleep study)..always thought that perhaps I have the gene that requires less sleep (or maybe it is related to an underlying inactive MPN)..hmm.but 5-6 hours is a lot better than a fitful 2-3 in spurts. Have started focusing on sleep hygiene and it has helped somewhat...

[hunter5582 in reply to Solyesh]

Insomnia is related to the overproduction of inflammatory cytokines for some of us with MPNs. I have struggled with it my entire adult life, particularly as the MPN progressed. having tried everything else I finally went with the Belsomra because nothing else worked. Not ideal, but better than being chronically sleep deprived. I still believe in a cautious approach and would urge anyone to try all other options before opting for meds to sleep. Individualized care plans are the optimal approach for all people with MPNs.

Glad to hear you got started on the Curcumin. Hope you found a bioavailable formulation.

All the best.

[Sam2022]

Good to hear your body reacts to Pegasus well without much side-effects. I am taking 90mcg per week as well and my platelets drops from 500 too 300 after 2 months. Keep the good work.

[Solyesh in reply to Sam2022]

Sam - that is great news! We are lucky that we have treatment options these days as our diseases and how we respond to available medications is as individual as we are. Also hoping that medical science continues to work on new therapies!

[Bobadog]

Hi there,I am taking weekly Peg(45mg)

I do experience morning bone stiffness and pain too,but I linked it to ongoing lumbar issues.

Pilates ,swimming, when energy levels are ok are helpful.

I dog walk daily(one and halfhours..not hiking!))

Likewise, I now have bouts of insomnia,but at my age (61yrs) I think a few of us suffer from this sporadically?

I started taking magnesium ,(powders)which seemed to help with the sleeping problem.

Perhaps it’s worth a try for you?

All the very best,

Bobbie

[Hidden]

Hi Solyesh

I switched from HU to Peg and for a period was taking both. With HU l was on 18 pills a week and had no side effects whatsoever. I gradually reduced the HU. Peg l take 90 per fortnight. Initially l experienced strong shin pain. Paracetamol helped manage it and a year has passed now no pain. Occasionally days after my injection l get 24 hour flu like symptoms. Sometimes l get headaches and Peg can affect mood especially if you have a history of depression or anxiety. It’s also worth getting your eyes checked as it can cause problems. But l am pleased to say l stuck with it and it seems to be working. I used to see my haemotologist every month and now it’s every three.