dose too fast. Entocort has been my Godsend along with a completely dairy free diet. Believe me - I have tried them all but my doc continued to work with me until we had it under better control. I am down to 1 Endocort a day and am going to try to cut that soon but I have been on 1 for almost 6 months. I am extremely cautious about dairy and realize it is the casein (protein) in the dairy. I eat mostly soy products and do not try to experiment anymore!! I take metamucil daily- if I dont- I know it right away. I also have alkalosing spondilitis arthritis and am taking Sufasalizine and has seemed to help a little with the arthritis and MC. This is an awesome board!!Hi everyone
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Hi everyone
I haven't posted for a long time but I have been checking in. I just read the post about decreasing Endocort and I wanted to caution people about decreasing the dose too fast. Entocort has been my Godsend along with a completely dairy free diet. Believe me - I have tried them all but my doc continued to work with me until we had it under better control. I am down to 1 Endocort a day and am going to try to cut that soon but I have been on 1 for almost 6 months. I am extremely cautious about dairy and realize it is the casein (protein) in the dairy. I eat mostly soy products and do not try to experiment anymore!! I take metamucil daily- if I dont- I know it right away. I also have alkalosing spondilitis arthritis and am taking Sufasalizine and has seemed to help a little with the arthritis and MC. This is an awesome board!!
dose too fast. Entocort has been my Godsend along with a completely dairy free diet. Believe me - I have tried them all but my doc continued to work with me until we had it under better control. I am down to 1 Endocort a day and am going to try to cut that soon but I have been on 1 for almost 6 months. I am extremely cautious about dairy and realize it is the casein (protein) in the dairy. I eat mostly soy products and do not try to experiment anymore!! I take metamucil daily- if I dont- I know it right away. I also have alkalosing spondilitis arthritis and am taking Sufasalizine and has seemed to help a little with the arthritis and MC. This is an awesome board!!
Dear Debonlake
Welcome. I agree with your caution to only coming off Entocort very slowly. With the Sufasalizine you should, I suppose, be getting a double effect - if Sufasalizine works for you. As well as being dairy free do you avoid Gluten? It is likely to be even more of a cause of MC and other autoimmune diseases. My GI doc was open to the idea of me cutting out dairy but (like most) poo pooed the idea of cutting out Gluten (I assume only dx celiacs are allowed to come off Gluten in his mind). If you have not already done so check out
https://www.enterolab.com/Home.htm
All the best in your journey to remission. Ant
Welcome. I agree with your caution to only coming off Entocort very slowly. With the Sufasalizine you should, I suppose, be getting a double effect - if Sufasalizine works for you. As well as being dairy free do you avoid Gluten? It is likely to be even more of a cause of MC and other autoimmune diseases. My GI doc was open to the idea of me cutting out dairy but (like most) poo pooed the idea of cutting out Gluten (I assume only dx celiacs are allowed to come off Gluten in his mind). If you have not already done so check out
https://www.enterolab.com/Home.htm
All the best in your journey to remission. Ant
As far as I have understood from my GI does entocort not cure the MC, only suppressing the symptoms. If the inflammation is still active, as soon as you stop taking meds, it will be back. Also stopping to early does not make the inflammation worse, like you have to take a higher dose because of quitting to early (if I am wrong about this, anybody, please correct me, this is just how understood it from my GI doc).
So not something really bad happens if you stop to early with the medication. It is just, well after quitting the pills, everybody is hoping it will stay away and it is never fun having to start again.
On the other hand the thing that keeps my mind a bit occupied at the moment, there comes a moment that I have to decide to try to control the MC with diet alone. When I am going to do that. In may I am using the medication for 8 months and am on the diet for 6 months. My plan was to give a try after six months. In the beginning I was not looking forward being on this meds for so long, but now I am also not looking forward to quit them. But know I fear a bit the moment to try it without medication.
Lowering is already not an option, from the beginning I can control the MC with 1 capsule a day.
Like Ant mentioned too, have you never considered also going gluten free or do the enterolab testing, since the MC is not your only auto immune disease. Or just try the paleo diet for a while to see if that effects also your arthritis.
So not something really bad happens if you stop to early with the medication. It is just, well after quitting the pills, everybody is hoping it will stay away and it is never fun having to start again.
On the other hand the thing that keeps my mind a bit occupied at the moment, there comes a moment that I have to decide to try to control the MC with diet alone. When I am going to do that. In may I am using the medication for 8 months and am on the diet for 6 months. My plan was to give a try after six months. In the beginning I was not looking forward being on this meds for so long, but now I am also not looking forward to quit them. But know I fear a bit the moment to try it without medication.
Lowering is already not an option, from the beginning I can control the MC with 1 capsule a day.
Like Ant mentioned too, have you never considered also going gluten free or do the enterolab testing, since the MC is not your only auto immune disease. Or just try the paleo diet for a while to see if that effects also your arthritis.
Thanks for your reply. I agree totally. I have been on Entocort for 3 years and I have decreased so slowly- that is why I am still taking 1 a day. I have tried GF and it made no difference. I was going to go off the Entocort completely a few months ago but I have been very cautious. I have been there before- trying to go off medicine and having to start again- dont want to do that!! Dairy free diet has been great- but like I said only if I take my Metamucil daily. I actually have my life back as long as I am very careful. At one time I was having D 20 times a day so I have come long way. Like most of you I have done alot of research and of course my coharts here.