ET vs. Hydroxy side effects

[mjn500]

I am trying to work out whether the major muscle weakness, especially in my legs, is caused by the ET or the treatment.

I was pretty fit until recently and could walk miles, climb hills etc.

Now I find that some days I can only walk 20 - 30 metres before having to stop for a moment for my legs to recover, and stairs are a major problem.

I could have had ET for well over a year before diagnosis though platelets were still below 600 when it was identified.

I don't know whether the symptoms are ET or Hydroxy but would like to know as I am finding them quite distressing and if they are caused by the treatment I want to discuss this with my Haemo. I see her on Monday so any thoughts welcome.

Thanks,

Mel.

[ccsial]

I have wondered the same thing. I was on hydrea for 15 years for ET and my legs got gradually worse. The rest of me is OK. I now have MF and I am on Jakafi. My Doc has slowly cut back my hydrea. I am now only taking 4 pills per week but legs are still weak.

Some days I do better than others. The hot humid weather wears me out much faster. I ride my exercise bike every day and bear the burning in my legs but it does help. My doctor reminded me that besides MF I am also 75.

[fee13]

Over the last 5 years I've had the same problem. When I switched from hydroxy to regular interferon I had a months break & felt a lot better but still not "normal". Same thing is happening now after stopping interferon for a couple of weeks (waiting for pegasys now).

If your bloods are in a good range you may be able to have a small break from meds, ask your haem, otherwise discuss what other med options are available.

[jillydabrat]

Hi Mel

Firstly, I have PV not ET but I think we all suffer with the bone weakness, joint pain.

I am often flabbergasted when I read people saying “Exercise is essential, I walk 10 miles a day etc”. I can barely walk to and from Tesco, which is directly across the road. I don’t get short of breath, it is just the pain in my legs and spine that kills me.

I just had a week away with friends in Whitby and I felt ashamed that I couldn’t keep up. By the time I asked my friends to go on without me, I honestly didn’t know how I would get back to the car. When I finally sat down I cried with the pain. I know I need my knees replaced but the hot, searing pain down the spine was unbearable.

Because of this I have done something I swore I would never do and that is bought an electric wheelchair. I already have a mobility scooter but having the chair that I can fold into the boot of the car will mean I never have to turn around again. I can enjoy days out with my friends instead of turning down invitations for days out.

If people have the energy to walk for miles and can do this without pain then good luck to them. Unfortunately I cannot and I won’t be shamed about my wheelchair.

You will have to listen to your body. You are unique and so will be your symptoms. If your body is saying no, then listen to it. Don’t be like me and try to keep up. I tried and ended up exacerbating my joint pain.

Take care my lovely

Jill xx

[Lifam]

Unfortunately I think can be caused by both Hu and ET

[Cja1956]

I have had trouble keeping up with my friends for years. I used to go with them to walk for exercise but they don’t even ask me anymore. I even had to leave my teaching profession because it’s too difficult to stay on my feet all day.I’ve had ET for 11 years and since I developed anemia last year it’s even worse. I’ve always taken hydroxy but I think muscle weakness was originally caused by the ET.

[BloodZero]

For me the symptoms were from ET.

I was very active. Would run 10km, lift weights and do a manual labour job. But gradually an unusual fatigue started coming over me and severe muscle aches come on.

Eventually i realised something serious was happening in my body and went to the Dr and thats when i found out i had ET. My platelets were persistantly high at 1800 . That was 10 years ago when i was 35.

[mjn500]

I've just seen the Haemo and she thinks it's the statin for high cholesterol that is the culprit! So it's back to the GP for that next.

Thanks for the input, all.

Mel.

[Normangirl]

I was diagnosed with ET Jak2 mutation summer of 2019, platelets around 900, felt great. Was put on Hydroxyurea, 500 mg., quickly brought platelet count down to 264. Took a couple of months and had joint pain and leg pain and weakness. This progressed to affecting my mobility. Talked to Hematologist and ask if different med option. There was not another option and he removed me from Hydroxyurea for 3 months to see if this was cause. It took a while, but I returned to my normal. I will go back for blood check in 3 weeks. If platelet count over 600 I will have to go back on meds, may be able to do intermittent treatment to try to control platelets and issues with legs. However my symptoms were definitely medication related.

Prior to Medication had been in Yoga class and exercised regularly. Had to drop out because of lack of mobility. I am 84 years old and in great physical shape, traveled, walked a lot and yoga class and gym. I don't accept that every ache and pain is solely due to my age when I was in great shape previously.