Hydroxycarbamide/ Intestinal Problems

[azaelea]

Hello my friends. Just a question, has anyone taking Hydroxy suffered inflammation of the colon? I’ve been on HU for 5 years and tolerated it fairly well. Recently however I am suffering bad symptoms similar to IBS with stomach cramps and many trips to the loo. I have also sufffered pain in right flank area which comes and goes but nothing was found with CT or Ultrasound scans. It is being investigated yet again with sigmoidoscopy but the doctors’ strike in UK may cause delay. I have read in the HU rare side effects can cause intestinal problems and would welcome any feed back . I came across an article regarding HU causing mouth ulcers but also rarely, ulcers on colon like Ulcerative Colitis. I realise these symptoms may be an entirely different issue. Best wishes to you all, Fran

[Exeter21]

Yes but mine started 3 weeks after being on it stomach pain soreness constant diahorea after eating & also gastro intestinal inflammation I stopped it after 12 weeks now on Peg Interferon with no problems 👍

[azaelea in reply to Exeter21]

Thank you for your reply. I think my symptoms could be the Hydroxy. Did consider Peg last year but didn’t follow it up as didn’t like the sound of possible side effects.

[Exeter21 in reply to azaelea]

yes all the side effects on paper for all these drugs sound horrendous however I am on a very low dose monthly after experimenting on doseage. No side effects & lots of energy . I looked like a ghost on Hydroxy it obviously didn’t like me 👌Julia .

[dogsandhorses]

I've been on Hydroxyurea for 5 years. Have ET and am JAK2 positive. I have many side effects from it, including symptoms similar to IBS. I have lost 25 pounds since it started going that way., and I didn't have it to lose. Have had CT's, CTA's, Hida Scan, Colonoscopy, Endoscopy, and the general idea is it is IBS, but no firm diagnosis. The drug given for it, causes constipation and bad gas. It has also caused hair loss, nail loss, thin skin, and mouth ulcers. Now I am having gum issues, and feel like the bad side effects will never end.There is no MPN specialist where I live, but I think I will try to get a consult with one out of state.

[Exeter21 in reply to dogsandhorses]

you shouldn’t be putting up with those symptoms I came off it for those reasons & now fine on Interferon. If you email an MPN expert they will happily consult you via phone. I was glad I did . Julia 👌

[azaelea in reply to Exeter21]

Thank you!

[dogsandhorses in reply to Exeter21]

I think you are right. The Haematologist about flipped when I asked about Interferon. That's why I think I need to consult an MPN specialist. I don't think I can take much more of these side effects.

[Janis12 in reply to dogsandhorses]

My haematologist claimed interferon was not used much these days when I asked about it....beggars belief!

[azaelea in reply to dogsandhorses]

Thanks for your reply. You sound the same as I am and with all the tests and “Oscopies” no definite diagnosis. Sorry you’re still having the bad side effects. Hope you manage to find an MPN Specialist. I haven’t got one either. Haematologist is just in hospital near me. I am ET JAK2.

[Wyebird in reply to dogsandhorses]

I thoroughly recommend Peg

[hunter5582]

Gastrointestinal adverse effects are considered common with HU.

online.epocrates.com/drugs/...

drugs.com/sfx/hydroxyurea-s...

I had chronic constipation while on HU. It took about 3 months for my GI system to return to normal after discontinuing it. I also experienced significant stomatitis (oral ulcers) and damage to my tongue. This is also considered a common adverse reaction.

Suggest a consult with a MPN Specialist regarding your potential adverse reaction to HU. It may be that you are intolerant to it. The good news is that there are other options. As I expect you know, some of us respond better to one of the interferons. I found the interferons to be more effective and much easier to tolerate.

Wishing you all the best.

[dogsandhorses in reply to hunter5582]

I can't find the MPN specialist list you have attached before. Can you send it again?

[hunter5582 in reply to dogsandhorses]

Saw your note above. I can't imaging why a hematologist would about flip when asked about interferon. IFNs are standard treatment for MPNs. Here is the list you asked for.

mpnforum.com/list-hem./

[lizzziep in reply to hunter5582]

It’s all about cost of the drug in the UK, hydroxy is the cheapest, doctors are under pressure to keep costs down.

[hunter5582 in reply to lizzziep]

That is true everywhere and in all healthcare systems. Cost often drives treatment recommendations. That is why it is so important to advocate for ourselves. Assertive patients receive higher quality care. Passive patients do not. If you believe that PEG is a better option for you, it is your prerogative to pursue it regardless of the cost. This is particularly true when you have tried a cheaper drug and found it to have unacceptable adverse effects and/or you are refractory to it.

Wishing you timely success in your treatment decisions.

[azaelea in reply to hunter5582]

I meant to reply to you before this Hunter and thank you for sending both links regarding gastric side effects of HU. Very informative. From other MPN patients’ experiences relayed in answer to my post, it would appear that gastritis symptoms are not just a ‘rare’ side affect as they would have us believe. I will post again when and if I have answers.

[Aldebaran25]

Hi, I was on HU for two years and then changed to Pegasys. Whilst on HU I did not have any dramatic side effects but put on weight and noticed a change in bowel function . Now that I have been on Peg only for four months (there was an overlap period when I took both ) my bowel function has normalized and I have lost half of the weight increase. In my view the HU was definitely affecting my intestines.

[Janis12]

Hi, I have been on Hu for three years and over the last year my intestines feel as if they are on fire and recently like you I feel like an IBS developing, cramping and numerous trips to the loo. I have had to relent and take tablets for the burning which has helped but I am waiting for an endoscopy just to check things out. At my next hospital appointment we will be discussing a change in meds, apart from the burning my hair is diminishing....fed up with it all. Good luck on your mission, gut issues can have a big impact on our lives.

[azaelea in reply to Janis12]

Thanks for your reply Janis12. I see you’re suffering same problem. I too am waiting for a sigmoidoscopy. Don’t know why it’s just sigmoid and not full colon. GP told me today another test I’ve had shows very high inflammation which could be ulcerative colitis. My sigmoidoscopy is scheduled for 17 th July ( with the warning that because of Dr’s strike it might be cancelled or rescheduled.! Our life in their hands!! Hope you get some help soon! Sounds like your Dr. Is thinking of the initial Interferon, before Peg. was introduced.

[Janis12 in reply to azaelea]

Hi, my investigation is not until August and I was referred 6 weeks ago , not only that but I have to travel 20 miles away to a private hospital so I guess our NHS is really in trouble. I would be surprised if my haematologist got the interferon mixed up with the old one if he did I honestly despair . Good luck on your 'journey of discovery'.

[Airslie]

Hi, I was on HU for a little over a year with ET Jak 2. I had horrible constipation among other things. I told my dr I wanted to stop and take a break from it so did for 6 months other than baby aspirin 2 times daily. The week I stopped I had constant diarrhea and cramping. This went on for months. I had a sigmoidoscopy with a biopsy which showed I had collagenous colitis. I believe this is all from the HU. I ended up progressing to PV and I’m now on Peg Interferon with pretty much no side effects.

[azaelea in reply to Airslie]

Thank you so much for your information Airslie. This does help me. I am due for a sigmoidoscopy soon if the Dr’s strike doesn’t delay it. Sorry to hear you progressed to PV but pleased to hear you tolerate it well.

[Airslie]

All the best to you! I hope you get some answers soon.

[CraftySpider]

Hi Azalea, I have been on HU for 20 years and have finally changed to Anagrelide this week…I have had constipation and bloating , and am hoping that once it is out of my system these will disappear ! Hope you get some answers.

[Wyebird]

hi I was taking lansoprazole before taking hu. Also had to I take the occasional indigestion tablet at night, that was it. As for mouth ulcers yrs but they only really bothered me when I had 5 simultaneously.

I’m on Peg now.

[russkatt]

I also had what I thought was IBS or IBD, nevertheless gas, bloating and discomfort. I was on HU for 4 years and just last month switched to Pegasys. So far I am happy I switched as I seem to be doing better with my IBS and hardly any symptoms except fatigue. Any I am not sure if the fatigue is from the disease PV or the drug, that is the million dollar question.

[souplover]

Hi, I've been on Hydrea for four years. At first, I was fine, but over time, I've developed intestinal issues. I had IBS previous to going on Hydrea, so both my hematologist and gastroenterologist have been somewhat dismissive, saying oh you've always had problems. Yes, but not like this.

My stomach is constantly bloated, all the time. I get diarrhea several times/week. I've also developed lactose intolerance.

My hematologist has been dismissive of my problems, but reading all of this from you all really validates what I've experienced.

I've been thinking of asking to try a different treatment. But the hematologist has been saying that the other meds have worse side effects. Is that not true??

[azaelea in reply to souplover]

Hi Souplover. I also thought about changing to Peg Interferon but like you, wonder about side effects. Most people seem to tolerate it very well but there is the odd one that have flu like effects a couple of days after injection. As for your doctors saying you had IBS before, all the more reason to point out Hydroxy CAN cause it and I would think make what you already have worse. If you look at Hunter’s comment and helpful links on my initial post, these confirm it can be the cause and you could copy and show to your doctors. I’m sorry I don’t know how to post things or copy onto this forum or I would. All the best!