ET JAK2 +

[ET500]

Hi I have just joined this forum. I have had ET JAK2+ diagnosed for around 3yrs and have been this month put on Hydroxycambamide 500mg. Also on aspirin and other drugs for high blood pressure and under active thyroid. Have been interested looking at others with similar diagnosis and if any problems with this drug and if so when these problems started after taking said drug. I have had sore muscles for many years now without this drug so can’t say whether any worse yet, also fatigue has been a problem , but thought more to do with thyroid problems. Just hit 61yrs and living by self , so worry about strokes which is why I took the option of this drug when suggested by doctor. He did warn about muscle pain and leg ulcers and to stay out of the sun. Has anyone got a more positive report with no noticeable effects on this drug.

[mhos61]

Hi ET500 and welcome to the forum.

I have had no issues with hydrea (also ET Jak2+), so there’s a positive for you. I have been on one a day Monday to Friday for just over two years. I had a few mouth ulcers in the beginning but they soon disappeared. Drink plenty of water with the tablet.

I didn’t have too many symptoms at diagnosis apart from the odd bout of visual disturbance and a burning pain under my left foot on prolonged standing. Didn’t think these were connected to ET, thought it was age related. However, these symptoms have significantly improved, I guess the aspirin and hydrea have helped and also proven they were indeed linked to ET. I’ve had one visual disturbance episode since diagnosis and the foot burning has improved by around 80%.

Wishing you well

Mary x

[ET500 in reply to mhos61]

Thank you for that positive note.. I’ve no added issues at the moment and hope things will settle with no problems. Interested to hear only taking drug Mon-Fri.. Will ask Doctor on that . Maybe he just was trying to see reaction in this trail month. I too had a few dizzy spells in first two days but that has settled. Looking forward to improvements and positive times ahead.

Wishing you well x

[mhos61 in reply to ET500]

Initially, I was taking hydrea seven days a week, but my platelets plummeted quickly. That’s when the dose was reduced to Monday to Friday only. Platelets behaving themselves at this dose so far.

[Tico]

Hi et500,welcome 2 the site u will find people on the site who all ave varying symtoms,as u say it cud be ur thyroid problem or et,some people can ave terrible symtoms,some r rarely troubled by it, same go's 4 the effects of the hu(hydroxy). If ur worried about strokes as u say,talk 2 ur haemo about it. How high were ur platlets wen u were diagnosed?

[ET500 in reply to Tico]

Hi thanks for response.. platelets not that high at 500 but increased over last 3mths after steady for 21/2 yrs.. The drugs are more about my age than the count apparently.. with increase of strokes. Back at doctors end of month after this month trial on drug. They have been good and keeping a close eye on things, and happy with comments from here to ask on next visit.

[Ebot]

Yep! Im on the little miracle worker! I have PV and when my platelets hit 1700 it was a no brainer to commence drug treatment. I haven’t had any side effects I can discern (who knows?!) but my platelets tumbled to -just about - within normal range in a matter of weeks. Yes, the sun thing is an issue. With the heatwave we’ve been having there have been quite a few moans on this Forum in recent weeks. But keeping covered up is a small price to pay - and it does wonders for your skin! While Hydroxy is effective I’m happy to take it. No idea what the future holds. Good luck.

[Mazcd Partner MPNVoice]

Hello ET500 welcome to our forum, as you can see from the replies you have had that the people on here are very helpful and friendly. We can all undestand how worried you are at the moment with having to take Hydroxycarbamide, we have all been there, but try not to worry too much, you may not get any of the side effects, or if you do get some they may not be too bad. You may experience mouth ulcers, they often settle down and only appear infrequently, however, if they persist then you must tell your haematologist, as the dose may be changed to see if that helps. You must take care when in the sun, wear a high factor sun screen, a hat and loose clothing, your skin will be extra sensitive now you are on Hydroxycarbamide. You can read more about the medication and the precautions you need to take on our website mpnvoice.org.uk/living-with.... Kind regards, Maz

[ET500]

Thank you... as living in Scotland the sun isn’t too much of a problem except when travelling.. but will be careful...I use P20 factor 50 which seems to be the only one I don’t itch with.. would be interested if anyone has any other brands they find helpful.

[Wyebird]

Hi I’m Et Calr I take 17 x 500mg hydroxicarbomide a week and recently added 1 anagrelide a day. All I can say is, having suffered a stroke at the age of 50 and surviving, I really don’t want one that will leave me disabled and dependant on others.

As for muscle pain, yes, I get that but not bone pain. I’m also suffering with tendinitis in various joints.

All of which I’ve now decided is down to the chemo.

[ET500 in reply to Wyebird]

Thank you for your input... I too have over the years had tendinitis in various joints but without the drug so hoping won’t get any worse . I find the level of exercise hard to gauge.. if I do too much I end up with aching all over then if not enough muscles seize up.. At the moment dealing with cramps in legs . Glad you have recovered from the stroke and hopefully the medication will keep you on top of everything.

[cgp_AK]

I too just joined this forum. I was diagnosed with ET with the JAK2 V617F gene mutation in 2013 and because I was 67+ at the time was started on Hydroxyurea 500 mg. I have taken it daily since 2014. Headaches and elevated blood pressure as well as bruising in my feet and legs are my most common side affects. Often the bottoms of my feet feel "heavy".

My platelets seem to have stabilized in the 450-550 range taking one 500 mg. capsule per day., I only have to see my hematologist every six months now but get a Comprehensive CBC blood draw every month.

[ET500]

Thank you for reply .. I am finding the correspondence here has helped get a better picture of, if any, side effects and that they are for different everyone. I have always had problems with feet and at moment they are just very dry , so trying to keep creamed up hoping that will help. Glad everything stabilising for you .