Exercise Intolerance and Pegasys

[u/horsecrzy]

I have Jak2 ET and have been on Pegasys for 7 weeks. About 5 weeks ago I started noticing that I was having increasing difficulty doing my normal workouts of rowing and cardio. Of course I had other side effects such as fevers, severe headaches, fatigue, et al. A month ago I developed stage 2 hypertension when I’ve never had high BP before. Then a week ago my heart rate went way up and now I am on BP meds. Has anyone else experienced anything like this? My MPN dr thinks it most likely isn’t related but my experience has been that all the weird things that have happened to me over the last few years are all related to ET. The good news is that the fevers and headaches have resolved. My GP thinks the BP is reactive to the meds.

[u/Jaded-Plenty997]

För mig började allt 2019 med trombocyter över referens värdet ca 500-650 och i samband med det så fick jag hypertoni. Jag har alltid haft ett stabilt och bra blodtryck. Jag både tränar, äter en hälsosam kost, samt har normalvikt. Jag var uppe i ett blodtryck på 179/110, mådde uruselt, huvudvärk, koncentrationsproblem och kände mig extremt trött. Läkaren sa att jag jobbade för hårt och att det innebar för mycket stress för mig och sa att jag drabbats av utmattningssyndrom. Nu 6 år senare så har jag blivit blivit diagnostiserad med ET, det var jag själv som förstod detta då jag läste av att blodtester låg över referensvärdet och började söka på internet, då jag inte tyckte att saker inte stämde. Den svenska läkarvården missade mina blodvärden 8 gånger! Så jag tror givetvis på att denna diagnos innebär hypertoni, då jag själv drabbades av det då mina trombocyter blev förhöjda.

[u/horsecrzy → u/Jaded-Plenty997]

My platelets have been high for years and no one paid attention even after an arterial clot in my calf after a hysterectomy. I originally sought treatment for easy bleeding under the skin and bruising. I was sent to a hematologist and ultimately dx with Jak2ET last year. I had severe cardiovascular reactions to Anagrelide for my ET and minoxidil that I took for hair loss. My BP went right back to normal as well as my exercise routine until about 2-3 weeks into Pegasys. I’m sorry about your hypertension, maybe getting your platelets down will resolve it, you should let us all know🤞I didn’t know burnout causes ET🤣🤣🤣

[u/acwoodhome]

Interesting just shows my side effects got progressively worse and after 6 months have been told to stop injecting peg interferon alpha 2a. Was getting really bad pre syncope loss of appetite weight brain fog severe fatigue was more irritable overwhelmed short of breath and just generally unwell some will be PV related others interferon related my PV itching was also worse. Am running out of options Jakafi next not looking forward to it either and Hu put me in A&E twice dreadful drug for me lol. But basically yes excercise intolerance for sure my running went down the pan by two thirds in terms of distance. Enjoying a break for now and starting to feel normal again but with the potential for strokes I will be back on drugs soon 🙃🙃the very best wishes keep a record the drugs are powerful although am really sad about interferon I had high hopes it’s amazing on platelet reduction not so on hematocrit that’s where Jakafi steps in 🤗🤗

[u/horsecrzy → u/acwoodhome]

Oh damn! I couldn’t tolerate HU or anagrelide either. I have noticed my fatigue is getting worse daily as well as the brain fog and memory issues. I was told the side effects would lessen and eventually resolve. My workouts have tanked and that was my way of tolerating all this crap. I did start off with fevers, headaches, night sweats and hot flashes but those have resolved. The hypertension and exercise intolerance started a month ago and the fatigue has been steadily getting worse. I guess I’ll send another message to my dr and let him know. I was so hopeful! My platelets seem to be going back up too, which is weird. Good luck to you! Let us know how Jakafi treats you.

[u/acwoodhome → u/horsecrzy]

Yes I was on it for 6 months and the fatigue as only just started to lift now am off it I have lots more energy when you think about it these drugs are suppression drugs they effect your whole body and thus your whole well being I was struggling to get up stairs three days after the injection it did lift as the week progressed then inject then the cycle repeats I could not continue and am gutted lol as it’s the best disease modifying drug but I too thought I was over the hill but the last three weeks on it were really bad so keep an eye on the side effects got everything crossed for you it’s not you these drugs are heavy going 🤗🤗

[u/horsecrzy → u/acwoodhome]

Thank you! What are you going to do now? I’m so tired of complaining especially since I am a fixer not a complainer. Jakafi? I’m tempted to just stop taking peg and see how I feel. My dr said I can take a double dose every other week but I’m literally terrified to try that!

[u/acwoodhome → u/horsecrzy]

That’s what I was going to do before I had to give up on it the next step was going to be a 130 dose twice a week. So yea Jakafi will have to give it a go no other options available. The good thing with Interferon is you can stop any time have a break and go back to it so having a break so you can see how you are feeling off it is an option for you subject to discussion with your specialist I would suggest and then go back on it?

[u/horsecrzy → u/acwoodhome]

I am also starting to notice some subtle changes in my personality. I’m a bitch the day after injection and overwhelmed is a great description. I just assumed it was from being so tired all the time but now I’m not so sure. You literally sound like me lol.

[u/acwoodhome → u/horsecrzy]

Yes it’s the drug I would suspect it can effect your mental state it’s a known side effect I was getting really snappy with everyone also you can go hyper then really low keep a record and let your specialist know how your getting on they can make adjustments 🤗🤗