Hi
I am a 59yr old female, who was diagnosed 15 years ago with ET. I started treated last year, due to count and age, with Hydroxycarbamide (9x500mg) per week. I started to experience digestive issues almost immediately but manageable. A year on and this unfortunately is no longer the case, I am in contact via phone with my Haematologist but he has been unable to offer anything other than suggesting smaller meals, keep hydrated etc.
I would be grateful for any thoughts or advice.
I would assume you are doing all you can to Help yourself ....
If its constipation try Linseed .
Also yoga , there are postures that are good for constipation. If interested I can advise..
Has you Heamatoligost suggested changing treatment. If not ask what might be a good alternative for you
Hope you find relieved soon
Hi Mostew thank you for your reply. I have been proactive since my diagnosis 15yrs ago, dietary changes, meditation, swimming and yoga all if which I believe contributed to maintaining my health and count until last Aug when I started HU. Hoping Haematologist will be sympathetic and will review my treatment options. Thanks again.
Unfortunately hydroxycarbamide can cause significant GI issues. These include nausea, vomiting, diarrhea and constipation. The latter happened to me. It was so bad I had to take an osmotic laxative every day, which was not always enough. Sometimes senna was required. Diet modification helped somewhat but not nearly enough. It took about 3 months after discontinuing HU for my GI system to recover.
Suggest that you review your treatment options with your care team. You could consider a dose reduction of the HU, or a switch to another medication like Pegasys or Anagrelide. I have done much better on the interferons, Pegasys/Besremi. The IFNs have been more effective and easier to tolerate for me.
Wishing you all the best.
Hi Hunter many thanks for your reply, much appreciated.
Hi Paisley24 when you speak with the Doctor/Hematologist ask about Famotidine (brand name Pepcid here in the US). When I first started with Hydroxy I was advised that this could cause stomach upsets and was advised to take. Hoping you feel better soon.
Thank you Cookiewoman for your reply and recommendation, much appreciated, will bear this in mind.
Hi, I also take hydroxy, for three years now. After about a year I experienced intermittent 'acid', it felt as if my stomach lining was burnt when I swallowed food. This become more consistent until eventually I had to have an endoscopy caried out. The outcome was gastritis...inflammation of stomach. Haemo doc did not think it was the hydroxy but the endo doc thought it was (hmm). I was prescribed famitidine which clears it up but I do not want to be taking this forever. I am coming off hydroxy soon to start pegasys so if the stomach does not clear up after that then we know it's not the drug that has caused the inflammation...watch this space!
Thank you Janis12 for your reply. I believe I also have gastritis caused by the HU and hope when I see my Haematologist he will refer me for an endoscope. Out of interest are you in UK or US (I’m in Uk) the reason I ask as I would prefer to be on pegylated interferon but when mentioned to Haematologist he advised that this wouldn’t be an option, possibly due to the cost. I agree that an ‘acid blocker’ doesn't seem to be a long term satisfactory solution. Good luck with the interferon, hope it helps.
Hi, I am in UK. I asked my Haematologist about Pegasys a while ago and there was a bit of a negative response (said it was not used much these days...hmm). Info from this forum is very positive in relation to Pegasys so I decided to email Prof Claire Harrison at Guys hospital. I asked about a possible shared care arrangement with my consultant who is not an MPN specialist. I was a bit anxious about offending anyone but it has all worked out well. She emailed me the next day and unknown to me at the time also contacted my consultant to discuss the arrangement. The outcome really pleased me, shared care (I have a telephone appointment with prof Harrison in November) and starting on pegasys at the beginning of October, win win all the way...shy kids get nowt as they say up north here. Good luck.
You’ve had better luck than me with Professor Harrison, I asked my consultant for shared care with her a couple of months ago and contacted her team but haven’t had anything from them yet. I’ll have to push my doctor about it.
Hi, sorry to learn that you had such difficulties. I approached Claire Harrison first via email, told her my story and what I wanted (shared care) and it was Claire that contacted my consultant before I saw him at my next clinic appointment. I mentioned to him that I had contacted Prof Harrison (I was shaking in my shoes) and he replied that she had already been in contact with him about my request and everything was agreed. I did mention to prof Harrison that I felt very awkward about requesting this and also repeated this to my consultant and both were very understanding and light hearted about it. I wish I had plucked up courage earlier. Fight your corner.
Thank you. My doctor said he would contact her, after I finally plucked up courage to mention it, but I don’t think he has, I asked the specialist nurse and he hasn’t, so far. I contacted Professor Harrisons department and they said they’d contact me if my doctor contacted them! Would you let me have the email address you used please.? You can send it on a private message if you don’t want to put it on here. Thank you.
Thank you that’s very encouraging to hear.
Hi Janis21 could I ask please if you have ET or PV? Many thanks
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