Increased Symptoms

[Paisley24]

Hi All

Have been on HU for 13 months (ET JAK2) which has worked well in reducing platelet count but I’ve started in last 6 weeks to experience horrible digestive issues, throbbing hands/feet and itchy all over. I experienced none of these problems before starting on the medication. Is it common for symptoms to occur this late on, as I presumed if I was going to have issues with HU it would have happened sooner? Seeing Haematologist on Monday to discuss ongoing treatment, so any thoughts would be appreciated.

[hunter5582]

Adverse effects can occur at any time when taking a medication. Sometimes, it takes time for the problems to manifest.

The GI problems with HU are common. Skin issues can also occur. The throbbing hands/feet could be a number of things but is definitely something to review with your MPN Care Team. Though this could be a microvascular issue, you would want to rule out peripheral neuropathy since that is a potential HU adverse effect.

Please do let us know what you learn and how you get on.

[Paisley24 in reply to hunter5582]

Many thanks Hunter for your reply. Will let you know how I get on.

[Carol0925]

Sorry you’re experiencing these side effects. Thankfully you’re seeing your Haematologist soon. I’ve read on here that someone developed Peripheral Neuropathy which can be very painful. The comment is in my recent post. Good luck and please keep us posted as I’m a newbie with lots to soak up, best wishes.

[lizzziep]

I was on hu for 3 years then developed a reaction to it! Horrible painful ulcers on my feet which wouldn’t heal. Was changed to Anagrelide, now on interferon.

[Whitehair51 in reply to lizzziep]

What was your dose of HU?

[lizzziep in reply to Whitehair51]

Sorry I can’t remember! I think I used to take 4 capsules a day but not sure now!

[Whitehair51 in reply to lizzziep]

That's a good sized dose. I'm taking 9 doses a week with little side effects.

[Paisley24]

Thank you all for your replies. Have seen Haematologist today and he has suggested that I stop HU and aspirin temporarily to see if symptoms improve, although he seemed dubious that medication was the cause, as believes my dose isn’t higher enough (9 x 500mg per week for the past 13 months). I mentioned my preferred ongoing treatment would be pegylated interferon but he advised that pegylated isn’t an option on the NHS? I live in Herts UK has anyone else experienced this problem ?

Many thanks

[hunter5582]

Your dose is certainly high enough to experience adverse effects. Note that I experienced adverse effects at 500mg every other day. Pegasys is used in the UK/NHS to treat MPNs. Others can better advise whether there are regional differences in access.

Suggest that you may want to get a second opinion from a MPN Specialist. Here is a list in case you are interested. mpnforum.com/list-hem./

[Paisley24]

Thank you Hunter, much appreciated