Hello all! First, let me say how amazingly helpful this forum has been. I've been a lurker for about 6 months or so, bought and read Tex's book and have used it to look up everything I could think of.
I've had D for about 5 years, and about 10 months ago finally went to see a gastro doc. I've have both LC and CC and believe me, I know how lucky I am. :) I'm currently on budesonide, but have also tried Lialda (gave me optical migraines, didn't help), Viberzi (made me feel stoned and didn't really help much) and now I've got a prescription for Purinethol.
I think I'm fine with taking it since I have gobs of other immune system issues in the form of allergies to everything under the sun. It seems clear to me that my immune system is a huge jerk and is the reason I can't go into remission.
For an explanation of my immune system, see this comic. I think we can all relate. https://imgur.com/gallery/Hutlc
BUT, I realize that this is kind of a big gun drug and I wasn't able to find too many people on this forum or on the FB forums that are taking it. I'd love to hear about other people's experiences, good, bad or ugly. Thank you all in advance!
Newbie Question: Purinethol Experiences?
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Newbie Question: Purinethol Experiences?
Microscopic colitis, huh? Okayyyy, then
Hi,
Welcome to our Internet family. I can't help you with the drugs (I've never taken any), but be careful with the mercaptopurine. As you're obviously aware, taking it is kind of like burning down the barn to get rid of the rats. It's mighty potent stuff. FWIW, most of us have serious allergy issues. It seems to go with the turf.
Again, welcome aboard, and please feel free to ask anything. The immune system cartoon is appropriate, except in our case it punches us in the gut first, and then it punches us in the face.
Tex
Welcome to our Internet family. I can't help you with the drugs (I've never taken any), but be careful with the mercaptopurine. As you're obviously aware, taking it is kind of like burning down the barn to get rid of the rats. It's mighty potent stuff. FWIW, most of us have serious allergy issues. It seems to go with the turf.
Again, welcome aboard, and please feel free to ask anything. The immune system cartoon is appropriate, except in our case it punches us in the gut first, and then it punches us in the face.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Hey jmm42,
I’m a fellow Newbie too ~ found this board and wonderful group of people in June after 2 mths of WD and LC diagnosis in May. Recommendations regarding my diet have helped me tremendously and with the exception of a few times that I mistakenly ate a hidden ingredient that I shouldn’t eat, I have seen improvement. Have you thought of an elimination diet or Enterolab testing? I did Enterolab and it was well worth the price. I now know exactly what I need to stay away from and can make good safe food choices.
I wish you all the best ~
Love,
Pam
I’m a fellow Newbie too ~ found this board and wonderful group of people in June after 2 mths of WD and LC diagnosis in May. Recommendations regarding my diet have helped me tremendously and with the exception of a few times that I mistakenly ate a hidden ingredient that I shouldn’t eat, I have seen improvement. Have you thought of an elimination diet or Enterolab testing? I did Enterolab and it was well worth the price. I now know exactly what I need to stay away from and can make good safe food choices.
I wish you all the best ~
Love,
Pam
Hi Pam!
Great suggestions! I have done 2 lengthy elimination diets to determine my food allergies and sensitivities and currently strictly avoid dairy, legumes, coffee, chocolate, gluten, nuts, grapes, etc. My diet is pretty restricted. The problem is that things like fall allergies can ALSO throw me into a flare even though I'm not eating oak leaves. I'll be doing okay, my diet will stay the same and then BOOM, three days of rain, I breathe in some mold somewhere and am sick again. My immune system seems to wildly overreact and even environmental triggers can cause a flare. I can't do anything about those, so I'm really hoping that suppressive drugs that will let my gut heal up a bit. I realize I may need to stay on it forever if it works, but even if it takes 20 years off my life at the end (and it seems like it shouldn't), I'd rather have that than have my whole life be like it is right now.
I also have a fairly stressful life, which doesn't help. I'm supporting a lot of people, have to travel for work and really need to stay healthy enough to keep doing that, so...yeah, medications it is.
It's awesome that diet is helping you, though! I did definitely get a lot better with diet, but not enough to be able to put on weight or anything. Diet+budesonide lets me put on weight, which is good. My doc seems to feel that the long term affects of Purinethol/mercaptopurine/6-mp are less than budesonide. I don't know, there doesn't seem to be much information out there about 6-mp but hope it's true. He's being very reasonable though and said that if it doesn't work in 3 months then I can stay on budesonide forever. Given the cost, though, it would be good to have another option.
Tex, thank you for the welcome and your book. It's been really helpful as I try to figure out how to get better! I do need to keep in mind that, sick as I am, I am actually better than I was. :)
Great suggestions! I have done 2 lengthy elimination diets to determine my food allergies and sensitivities and currently strictly avoid dairy, legumes, coffee, chocolate, gluten, nuts, grapes, etc. My diet is pretty restricted. The problem is that things like fall allergies can ALSO throw me into a flare even though I'm not eating oak leaves. I'll be doing okay, my diet will stay the same and then BOOM, three days of rain, I breathe in some mold somewhere and am sick again. My immune system seems to wildly overreact and even environmental triggers can cause a flare. I can't do anything about those, so I'm really hoping that suppressive drugs that will let my gut heal up a bit. I realize I may need to stay on it forever if it works, but even if it takes 20 years off my life at the end (and it seems like it shouldn't), I'd rather have that than have my whole life be like it is right now.
I also have a fairly stressful life, which doesn't help. I'm supporting a lot of people, have to travel for work and really need to stay healthy enough to keep doing that, so...yeah, medications it is.
It's awesome that diet is helping you, though! I did definitely get a lot better with diet, but not enough to be able to put on weight or anything. Diet+budesonide lets me put on weight, which is good. My doc seems to feel that the long term affects of Purinethol/mercaptopurine/6-mp are less than budesonide. I don't know, there doesn't seem to be much information out there about 6-mp but hope it's true. He's being very reasonable though and said that if it doesn't work in 3 months then I can stay on budesonide forever. Given the cost, though, it would be good to have another option.
Tex, thank you for the welcome and your book. It's been really helpful as I try to figure out how to get better! I do need to keep in mind that, sick as I am, I am actually better than I was. :)
Microscopic colitis, huh? Okayyyy, then
jmm42,
In case you have to go back to budesonide some day, are you aware that you can buy a generic version from certain Internet (Budez CR 3mg for example) pharmacies for a small fraction of what it costs in the States? Most members here who don't have insurance or who have high copays buy it there. The quality seems to be equivalent to the name brand stuff. In fact they manufacture many generics for major pharmaceutical companies in this country and the pharmaceutical companies just mark the drugs up astronomically and pocket the profits.
Tex
In case you have to go back to budesonide some day, are you aware that you can buy a generic version from certain Internet (Budez CR 3mg for example) pharmacies for a small fraction of what it costs in the States? Most members here who don't have insurance or who have high copays buy it there. The quality seems to be equivalent to the name brand stuff. In fact they manufacture many generics for major pharmaceutical companies in this country and the pharmaceutical companies just mark the drugs up astronomically and pocket the profits.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
I literally just put in an order for a 3 month supply at a Canadian pharmacy recommended by my doctor's office. Great minds think alike! My doctor wants me to continue the budesonide 3 months while the mercaptopurine ramps up and starts working, then taper off the budesonide over a two month period.
Microscopic colitis, huh? Okayyyy, then