MPN ET side effects

[BonnieLunar]

I was diagnosed in 2019 with ET and started my meds then, hydroxy and aspirin were perscribed for me then. Since or i suppose before then i would go numb down my whole left or right hand side, my nose bleeds were getting worse too. One night after work i went to a diy store to get some hose fittings for my jet wash, i came to a slow halt and couldnt move and i was feeling embarrassed as there were 2 staff there. I some how slowly started moving again and i seemed to be ok, but i wasnt ok in myself i had all kinds of questions. i managed to get home ok and told my wife what had happened, we organised a doctors appointment and they were baffled, they said i needed to have some blood tests late 2018 and then again in early 2019. i thought everything was ok i was feeling ok again, but i got the dreaded phone call to see yhe doctors. my platelets had spiked and so they had referred me to the hospital to hematology dept. That was my first experience with outpatience cancer care, i started to do more research then, i was worried about how long i would now survive this disease i have. i felt very low but i carried on working in our post office that me and my wife ran, but i started getting more numbness in my arm and down my sides regular. I have eventually made the decision to sell our business so im currently retired. I have migraines, pain around all my body which i call electricity as it surges through me. I have severe muscle spasms in my back arms and legs, pins and needles in my feet, my neck now cracks alot and i have pain and cramp in my shoulders and neck. my strength has subsided in my arms, i have arthritis and my hands fingers palms get inflamed. I have ibs also and have so many meds now from neurology to manage the pain and im fed up with it all or i was, it felt like a roller coaster ride with ups and downs. and i wanted to know does anybody else with an mpn have any of these symptoms ive wrote about.

thank you for reading this, i am content with what i have now even with the pain still there because im alive and breathing

[MissLesley13]

Hi. You are not alone. I feel like a complete different person since my E.T diagnosis. It obviously started before ,but I will say I have probably never had one full good week in a couple of years. I can relate to what you are saying so much. I also have had to give up work. I thoroughly enjoyed my job but I have realised I am now someone who is unreliable. I get bone pains that can make me slow and uncomfortable. I can get infections every month which can knock you off your feet for a week. I have just discovered I have bakers cysts which are extremely painful. In fact I could go on and on. I will 100 percent say that my conditions are to do with my MPN. I know a lot of people manage day to day and I must admit I get a little bit jealous. I think there are a few of us who get a lot of side effects after our diagnosis. I am learning to live with my E.T but it is taking a while to get to know it.

[Mostew]

It must be so hard to try and keep positive with all the symptoms you have.I hope you get on with the team you are under and feel listened to. If not please don't hesitate to seek another MPN specialist.

Assertive patients receive the best care !!!

( to quote Hunter!! )

[Tipsy2023]

Morning I can completely relate .

I gave up work aged 60 because of the very varied symptoms of inflammation that seemed to flow through my body leaving a variety of if effects as yes it did seem to temporarily leave . At the time Et Jak 2 undiagnosed .

Having kept pretty fit I found everything from swimming to cycling and walking so difficult. Brain fog a big factor and yes bone pain muscle spasms so bad I found sitting squatting walking impossible migraine like visual loss and disturbance dizzyness all making life difficult. Medical people telling me I was just getting old .

I was started on Clopidogrel as I awaited an appointment with stroke centre in case it was a TIA and the difference it made was amazing .. it helped with so many aspects .

Hydroxychloroquine helped the muscle spasms .

My issues since diagnosis in 2021/22 have been Hydroxycarbamide which completely knocks me out . Bloods well controlled

Coming to terms with this condition can be hard requiring adjustment.i am still adjusting Listening to others who are managing well is heartening but frustrating and on this platform not just being told you are getting old …

I am managing that fine .. and I have 10 years on you , so you need to keep your mind busy with things you can do I guess and bring some joy.spring is on its way in Uk and that always helps . Hope this doesn’t sound patronising. L

[Amethist]

I was Dx in 2016. ET platelets at 1450. I had a mix of symptoms, some neurological ( memory issues, couldn’t feel my arms, headache, brain fog ..) . Thankfully my gp included some vitamins in the initial test, I was below range in Vit D, very low in range with B12. On further research, I discovered the B12 test is not the best, so I took B12 and the results were ( for me) amazing and life changing. Until that point I was also thinking of giving up work, driving etc.

This improvement sparked my interest in all vits/ minerals and has changed what I eat, a lot, and I continue in very good health doing all the things I want too and not taking anything other than a very small amount of aspirin ( compared to what I was advised) So I am copying the next bit from an earlier post and if you haven’t had these done , then I would suggest you do. Vitamin deficiencies are very common but hugely ignored by mainstream medicine as they are not taught about it. My daughter in law- now a Registrar , told me they had 1/2 a day on all vitamins/ minerals in her training . That’s it. Sometimes you have to just do things yourself. My daughter had a lot of gut issues in her late teens (had so many neuro symptoms) and any gut problems will also ultimately result in deficiencies, regardless of other factors. Some drugs also prevent you from absorbing vitamins.

“Just to rule out all possibilities, get your gp to check all your vits/ minerals/ thyroid.

If that’s not easy to do, or if you prefer, you can also get home test kits which are really easy to do.

Test Vit D, B12, folate, full iron panel, TSH, freeT4, freeT3, CBC.

You need to get the results with ref ranges. On Health unlocked there are excellent groups for B12 deficiency ( folate/iron) and thyroid issues . They can help you understand what is ok and what is not. With some things, being in range is NOT the same as being optimal for good health.

The higher your vit D the better. If it’s low to middle, probably helpful to supplement. Test first.

Obviously look at your diet. Maybe test for food sensitivities. Avoid alcohol, sugars , avoid too many carbs, seed oils, processed food for starters. Cook real, traditional food”

I am happy to recommend some excellent books if you are interested.

[ETket]

It sounds like you've got a lot to deal with.

[quanglewangle]

I have been on Hydroxycarbamide for 15 years with actinic keratosis, peripheral neuropathy, pruritis, erythromalalgia, etc., etc, but research and my Haematologist highlight that ET can produce many of these symptoms that we ascribe to Hydroxycarbamide 'side effects'.

Some symptoms such as tiredness and pains can of course be the effects of age, but the most important thing to celebrate is that we still wake up every day. Quality Of Life starts in the mind....

I have just switched to ruxolitinib (Jakafi/Jakavi) and await developments with interest and some trepidation......