Thanks to the MPN Voice Community Had Empowering Appt with my MPN Specialist

[Solyesh]

I had posted this as a reply to another post, but given that I was so able to directly affect my treatment plan only thanks to all of you and the great information and resources the community provides, thought I would re-post here as a thank you!

From HU to Pegasys...

I was about to pen a similar post but entitled "Leaving Hydroxyurea". I have ET Jak2+ and have been on HU now for about 5 months. We have been ratcheting up the dosage to better control my platelet count. Starting at 500mg/day had no issues and it did initially drop the platelets from 1.400 to mid 900's, but as we have continued to increase the dose, now at 1,500 mg/day, I have started to experience some unpleasant side effects. The major ones include a rash and itching on my arms that is so bad that even with antihistamines; anti-inflammatories and prescribed lotion/cream, I cannot get comfortable enough at night to get a good night's sleep. Fatigue, but honestly don't know if it is the drug or a side effect of the itching side effect and lack of solid sleep; nail discoloration (on all my nails on both hands); breathlessness when exercising (never happened before) and weight gain (but could be side effect of the breathlessness side effect which has begun to limit my ability to work out as intensively during my cardio)...

Even with all of this, if the medicine at the current dose had achieved it's goal I would have probably soldiered through for a little while longer to see if the SE moderated over time...unfortunately while the HU is very successfully dropping all my blood counts (Hematocrit and Hemoglobin, which have always been in the normal range, are now both lower than normal), my platelets, after initially dropping, have remained stubbornly at the mid 700s even after two months at 1,500mg daily.

My MPN specialist advanced my scheduled meeting by about three weeks to discuss things. He went through the blood results over time and basically agreed that unfortunately the HU wasn't yet performing as he had hoped. He laid out the three options: 1) continue on HU - up the dosage and try to better manage the SE to see if we can get platelets in range; 2) switch to Pegasys; 3) switch to Anagrelide. He also had an interesting take on the different specialist centers around the world and their proclivity for any of the three...

At the end of the day he said that as one of his most knowledgeable and up to date patients he would leave the decision to me (he actually wrote out the recommendation with the last line blank). He did tell me that he had a slight preference, for ease of administering and approval for Anagrelide, but that he would support my choice...

It was a very empowering moment and really only possible thanks to so many of you on this site who have time and time again provided such excellent knowledge and resources!!

I chose to move to Pegasys. He has to get approval from the Health authorities and insurance but he has done it before and thinks it will not be a problem. Should start at my next appointment at end of month.

At the end of the day, as many on here have said, we are all individuals and our disease as well as how we respond to the various treatments will be just as individual. The really good news is that we actually have options these days to try and find the right combination for each of us.

[hunter5582]

This is truly an outstanding outcome. Congratulations on your successful self-advocacy. We all deserve to receive individualized care from a provider who respects our right to make our own treatment decisions. Thanks for updating us on the good news.

[Solyesh in reply to hunter5582]

Hunter - thank you and thank you for all the great information you always provide as well as the detailed insight into your journey. it is all very very helpful!

[IrishHiker]

That is fantastic. The way health care decisions should be made jointly a d with knowledge shared by both parties then discussed. Happy for you😊 best of luck with your outcome!

[Solyesh in reply to IrishHiker]

Thank you! I am fortunate to have found this forum and to have an MPN specialist who is very much on top of things and understands each MPN journey is as unique as the individual.

[Wyebird]

Hi, I honestly thought that I’d replied to this Anyway Peg is easy. I’m about 2 months in. If you are nervous put an ice pack on tummy before injecting. I loathe needles and am really Squeamish. It doesn’t hurt at all.

I take my jab in afternoon. About 3-30pm. I prepare house ready to do nothing the next day. Good luck xxx

[Solyesh in reply to Wyebird]

Thank you. And thank you for the suggestion. I have never been bothered by needles so hopefully the actual injection will not be an issue (nurse will make first few to show me exactly how to go about it..) Good luck on Peg!

[Planti]

Hi Solyesh, I am happy to hear of your successful talk with your haematologist. I really hope that your experience with Pegasys is better than with HU. I took HU for almost 3 months and my side effects were not as severe but I stopped, mostly due to nausea and fatigue but some rash too.

Pegasys has been very tolerable for me so far (just over 6 months) though increasing over the low start up dose caused some swelling around my eyes that did not go away so I went back down and after another 2 or so months my platelets came down to just around the 400 mark (I have ETJak+).

That is just to day that persisting at lower doses can sometimes do the job as others have found. It can take a while. Pegasys also can lower the other blood cell lines too and raise liver enzymes so it is good to keep the dose as low as possible in my humble opinion. If the dose does have to rise some have found that later it can come down again.

Keep us all posted on your Pegasys journey and thank you for writing.

[Solyesh in reply to Planti]

Planti - thank you and glad to hear that things so far are good with you and Pegasys. My MPN specialist is very big on starting slowly and increasing only if necessary - will be patient and just hope it actually brings platelets in line with limited or no SE!