Pentasa/Entocort combo questions

[SuzInVa]

Hey all! I was diagnosed with Crohn's in February. I also have leukemia and am on a daily chemo pill to keep that under control. Because my doctors don't want me taking anything that will interfere with my immune system (as it's wonky already), they prescribed me entocort. I've been on that for about 8 weeks now. Last week, I had a follow-up with my GI doc and said that the entocort didn't really seem like it was doing anything much. She then put me on 1000 mg/day of Pentasa. So, now I'm on both the entocort and the pentasa. Since I started the Pentasa, I've had massive water retention issues. Right now, I kind of feel like a sausage about ready to explode. I have lasix but I hate taking that so late in the day. On top of the water retention, I just generally feel like crap. I feel worse now that they're "fixing" a problem I've had for 13 years that didn't really bother me all that much. The cure, for me, is far worse than the disease.

Sorry, rambling, I do that. Anyway, I was wondering if anyone else had the water retention issue, if so, is it something your body adjusts to relatively quickly? I know what to do for the water, both medication-wise and naturally, but I'd just like to know whether this is going to go away soon or of I should call my doctor if this is abnormal.

Very uncomfortably yours :eek2::lol:

Suzanne

 

[Manzyb]

I didn't notice the water retention on the Pentasa, but with Entocort I had a lot of water weight and bloatiness How much Entocort are you on? Mine reduced with the smaller doses of it. I think I started at 9mg/day and when I got to 3mg/day it wasn't so bad.

I don't believe that it is abnormal, however, you may want to call and just check. I'd hate for something to be wrong and you not ask about it!

You hang in there!!!!! xoxo

 

[nikimazur]

Pentasa/melasamine in general never caused any water retention, but the entocort definitely did. In some ways my body handled prednisone better then entocort since I've been on and off of prednisone my whole life, with chronic asthma and allergies. Entocort for me was the devil, and was completely miserable on it, even if for most people it works. It did nothing to help symptoms and made me feel like a beached whale haha.

 

[SuzInVa]

Thanks Manzyb! I am on 6 mg day of the entocort, I started at 9 but I was having HORRIBLE hot flashes and insomnia. My doctor took it down to 2 pills a day and those have pretty much gone away. I get some water retention from my chemo, on occasion, but nothing like this. I swear, I could take a pin to my ankles and cause a flood. Right now, it's a tempting thought to try as it's just so very uncomfortable. I'm going to go home and ride the exercise bike for a while, that usually helps somewhat. I'm just hoping this goes away.

Thanks again for your help :rosette2:

 

[SuzInVa]

Thank you Niki! I actually did ok with the entocort, but I hear ya on the miserable. I'm not feeling at all well since she added the pentasa. I'm on so many medications right now, I just feel incredibly over-medicated. I know, most people adjust to most medications. I'm hoping this is the case here.
:rosette2:

 

[SuzInVa]

Just wanted to thank you again. I called my doctor yesterday and spoke with the nurse, as despite taking a lasix, the water retention was growing worse. They said it is not normal at all and they took me off the pentasa. I didn't take it yesterday and today and while I still have a little retention, it is massively better than it was, am hoping by tomorrow, it'll be gone.

I am on so much medication that I'm thinking it was probably just some weird drug interaction. I'm on chemo for leukemia (which occasionally causes some mild water retention) and I think maybe just the combo of that, with the entocort and the pentasa, and all the other stuff was just too much. Back to the drawing board, I guess.