Revlimid 10 MG

[Sherry Pratt]

In Aug 2014 I was diagnosed with RARS. Low grade. I started out with 15 mg of revlimid which broke me out in a rash twice. I have now been on 10 mg revlimid going on 4 months. My HGB stays above 9 most of the time now which makes me feel better. I also take 50K mg of procrit once a week. So far this has been working for me pretty good. I cannot run a race but I feel better than I did for sure when I was not on the Revlimid and my HGB was 8.0 to 8.5. The revlimid does have some gastrointestinal side effects. If you eat fried or greasy foods you can be certain those will go through you. I take a daily probiotic, prebiotic, with enzymes which is in a powder form that I mix with an immunity booster (grape, reservatrol, cranberry etc cocktail) which helps immensely. Because it is not a pill and doesn’t have to process through my liver it works very fast and is very effective. I also eat one container of yogurt a day which is helping. I do sometimes get bone aches but procrit can sometimes do this to me. Just wanted to share this information with you in case it could help someone else on revlimid.

[californiagirl]

Hi Sherry, are your gastro side effects chronic? I’m still trying to figure out what sets my gastro system off and why after 6 months it started. Onc doc says it’s not related. Tell me more about your immunity booster and what type of “enzymes” are you referring to. Thanks for the information

[Sherry Pratt]

Californiagirl,
My pharmacists at the speciality pharmacy where my Revlimid is dispensed told me that Revlimid affects some people and not others with gastrointestina stress. She also said it can not happen for months and then all of sudden start happening. And it can happen really quickly with no notice, sort of like IBS does. When I am on my 7 days off don’t have that side effect. I take a probiotic/pre-biotic/enzyme supplement. Can get you information if you send me an email. Works very well for me and also having yogurt once a day. Hope this helps. pratt8075@gmail.com

[lukacspat]

Sherry & Californiagirl,
I was on revlimid and had severe gastro effects every day for over a year. I was told that it was not caused by the revlimid. Don’t believe that!!! I was sent to my GI who originally say it was IBS – not revlimid. After many tests and being recommended to some really good doctors at University of Pennsylvania Hospital, they discovered that revlimid creates “bile salt malabsorption”. They put me on a cholesterol drug (I don’t have high cholesterol) called colestipol. It was like a MIRACLE and has really made things so much better for me. I told the pharmacist that I talk to when I get my revlimid counseling and she as been informing others as well. Please tell your doctors about this. Hopefully it can help you.

[californiagirl]

Thanks for the information lukacspat – wow, I’m hopeful! Can you provide me with more information about how they arrived to this conclusion? What type of tests, etc. I’ve been scoped and now will go for a CT to see if there is anything else going on- so far, everything checks out OK. I’m so tired of this – the quality of life has really taken a downturn. I’ve been reading about bile salt malabsorption and it sounds so much like my symptoms. I’ve also been reading about colestipol and the side effects as well – did you have any? Were you put on a therapeutic trial?

[lukacspat]

I had test after test – colonscopy MRI, utrasound, cat scans, many stool studies etc. I tried to get the doctors to understand how severe it was. I couldn’t go anywhere for fear of episodes. Most nights I would go through hours of excruciating abdominal pain. It was hell.The GI doctor sent me for a second opinion and they did more tests but and then found a study in the UK of a small number of MDS patients taking revlimid and having abdominal issues. Somehow they figured out that they had bile salt malabsorption.Once I started on colestipol (the pill – nott the powder), the results were almost immediate. But make sure they prescribe you the pill. There’s also a powder form which I could not tolerate – it was pretty disgusting. Why they didn’t prescribe the pill initially makes no sense. But once I took the pill the results were immediate and there were really no side effects to speak of. Truly life altering for me.

[californiagirl]

Thanks for the info. I actually found information on the study online and plan on printing out the info and taking it to my GI and Med Onc and hoping they’ll do a therapeutic trial first before doing more testing. Did they test you for bile salt malabsorption first? Do you still have your gall bladder?

[lukacspat]

Californiagirl- I still have my gall bladder. I was diagnosed with pancreatic insufficiency early on which I think confused the issue because they thought that pncreatic insufficiency was the root of the problem – not revlimid. I was out on meds for it which didn’t help. The GI doc prescribed colestipol immediately after finding the study but never specifically tested me for malabsorption. I didn’t have any more tests – and didn’t need to since it worked quickly. Honestly, I wouldn’t do any more testing until after you try the colestipol. If you’re like me, you’ll see results pretty quickly and your quality of life will improve dramatically.

[californiagirl]

Hi Lukacspat – I wish I didn’t go through this needless suffering these last 3 months. I was put on Colestipol on a trial basis and have been on it for the last 3 days and I have had NO problems. I feel like my old self again and am ready to return to the land of the living. I wish more docs knew about bile salt malabsorption and I’m disappointed that my own hematologist was not aware of the study or this side affect. I am also going to forward this information to the GI doc so he is aware of it to. THANK YOU THANK YOU!

[californiagirl]

Here is the link to one of the articles for those interested in learning more about bile salt malabsorption.
http://www.bloodjournal.org/content/124/15/2467?sso-checked=true

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