a difficult journey!!

[AllEars]

I was first diagnosed May 2019…My first and I think the last post was when starting

Pegasys when my platelets had reached 1100. Started on 45mg and soon increased to 90 mmg.

It started working quickly on the platelets, and i still needed a phlebotomy every 6 months…. However my fatigue kept on getting worse., accompanied with shorhness of breath. Hematologist suggested antidepressants saying anxiety could influence fatigue… I had also had shortness of breath since October 2020. Im guessing now that the low iron contributed to my fatigue and breathlessness because summer 2020 i had five phlebotomy in a row one every month (one year prior i had no fatigue and in fact i was hiking 5 miles every day) …. My guess is that the phlebotomy's were resposible for my fatigue… my beginning Jak 2 was 4. By October it reached 10.

my platelets reached normal 200-250 after a year but i still needed phlebotomy every 6 months.

Finally at a routine visit with a new PA after complaining to him ( by this time on long walk to hotel room i was in a wheelchair)

He asked if i minded having a Ct scan…after that i was sent to the emergency room where i stayed for 2 days …. I had blood clots in my lungs!!! That was June 2023.

Since then i have been on Eliquist

And i feel much better but still have breathless after a short 1/2- mile walk…

Now im under the care of good pulmonologist who has done 2 right heartcaters and he put me on a very

Expensive medication called adempest the numbers are improving..

He wants to do balloon treatment on the clots

????

[EPguy]

From my experience when a Dr says your ongoing medical problem is from anxiety that tells you keep looking to find the real problem. It's good you finally found yours and even better that you can do something about it.

On the MPN, has your Dr discussed Rux (Jakafi)? It seems the PEG is not getting its full potential for you.

[AllEars in reply to EPguy]

Thank you for you reply ….

Actually I am not on any thing for the last 6 weeks as my numbers seem to be stable…. I stopped the pegasys since my platelets have been stable for one year. Also my white blood numbers, and liver were also suffering . It seems like the pegasys was not helping my hematocrit!!! Does Jakafi lower hematocrit?

My latest jak 2 A burden was 6…

The most it ever got to was 25.

Now is the longest ive gone with low hematocrit 40-42 and that is by eating no starchy carbs, no fruit,.Only eating salads and protein.

I read on the blog someone suggested the “candida diet”

Im walking a tight rope now!

Thanks again

[EPguy in reply to AllEars]

It seems your Jak2 allele burden (VAF) started low, went up, then down after starting IFN. Is that right? It's possible the IFN was finally taking effect just as you had your last dose, but 4 years is a very long time for that to happen. But when it does work its benefit to blood counts can last a long time after quitting esp with a low VAF. I got 3 months. There are several members with slow or not enough HCT response on IFN.

Jakafi is intended to lower HCT, PLT and WBC, similar to HU and IFN. Like IFN, it also can reduce the VAF. If IFN for sure was not getting your HCT down after 4 years it's worth asking your Dr about Jakafi (Rux). I've been on all 3, HU, IFN, Rux.

[AllEars in reply to EPguy]

Thanks again…. Yes the interferon works! Actually I was only on it for 2 years…

I had to get up my nerve!!!

It did wonders for my platlets!!

Its been almost 2months without a dose of Pegasys….but i take another dose soon….and I will inquire on the Jaffi. Also the interferon was getting to my good attitude!!!😦

My big concern now is my lungs

In the next 3 months I will start with balloon angioplasty on my clots…. This is what has taken my quality of life down since I was big on Hiking and the outdoors. Plus I love to travel. To distant places…now im cautious about long plane rides.,,and I miss altitude, high mountains 👍

Sorry for the pity party ….. Im a very lucky 77 year old young lady!!!!

[hunter5582]

Glad to hear that things are going better as a result of a proper assessment and treatment plan. Unfortunately, anxiety disorders are frequently misdiagnosed conditions for female patients. It is good thing that you pressed on for an accurate diagnosis.

Wishing you all the best moving forward.

[AllEars in reply to hunter5582]

Thanks so much!!!

[Mishie14]

Wishing you stability after a horrendous time dealing with multiple issues. I feel for you, AllEars. I appreciate your sharing your journey as it is also a learning opportunity for those of us who are starting out and need to know more about what can happen. Thank you very much and keep up the good fight! Stay safe.

[AllEars in reply to Mishie14]

❤️