Entocort long term use???

My doc just told me that Entocort protocol has changed to longer term. She says that she will want me on 9mg for up to 6 months and then taper from there if all is good. She says as my issue is small bowel that I am the perfect candidate for this approach. Is anyone else hearing this? Should I be concerned? Thanks as always Dave

Is there a reason she is not putting you on 6-MP or methotrexate?

My Dr. has no plans of taking me off it for about another 6 months. I've been on it for nearly 3 months. I'm going to Imuran, and that takes about 6 months to kick in.

Cool, thanks for the feedback, guess nothing to worry about, and I just went for a bike ride for the first time in months ...YEA!!!!

9 mg for six months is a tad long, but maybe you are responding so well to Entocort that the doc doesn't want to take any chances.

Entocort is FDA-approved for 9 mg at up to 8 weeks to induce "remission," and then for 6 mg at another three months to maintain remission (or what they call remission).  So the total would be 5 months.

9 mg is a high dose. Would your doc consider tapering you down to 6 mg after two months, and then maintaining you at that dosage through the rest of the six months?

Valerie, dang, if it did nothing for you, it's amazing you were kept on it needlessly for two years.

 

I was on a mixture of prednisone and entocort for almost a year when I stopped remicade due to antibodies build up and failed humira. For the first 2-4 months I was really good and had no issues other than some wieght gain. Then about month 6 I started having some bad problems with bone pain and found out that I was now suffering from osteoporosis from the steroid use. I also was deficient from multiple other vitamins due to the steroids and it just kept getting worse despite being put on medications like fosomax in order to help my bones. I developed a deep bone infection in my jaw after having a root canal that turned into MRSA and I lost my tooth and was on IV. vancomycin for a month. All of that was attributed to long term steroid use.
There is no question that steroids have their benefits and are crucial in stopping a major flare when no other medications will work. 6 months seems like a long time to be on steroids but you should be alright. Please make sure that you are taking plenty of calcium and a multivitamin every day. My jaw is still not the same nearly 2 years later and even the mention of prednisone or entorcort makes it ache. I will not take steroids for longer than a few weeks and make them my last resort due to the way my body reacts to them. I love the sudden burst of energy that you get when you first start on them but when your body adjusts to them and stops producing certain chemicals, I hate being drained.

Thanks for the input to all. It is good to know that my doc is not doing anything out of the norm, even if it carries some risk.

I have to admit that one of/ or combo of Entocort, pentassa, or SCD seems to be working.

Cause I am having more good and even a few great days.

I have to believe this approach is what is making me feel better cause the drugs are crazy expensive and SCD is a pain.

Wouldn't it be a bugger if none of what I am doing is having an effect and it is just the natural course of this DD.

Any ways, HAppy New Year to all

You guys are great

Dave

Thanks Mom... I think..lol

I appreciate the sharing of experiences, however as with everything about this DD it seems like there is no one "right" answer. That is a real hassel for me cause if it was not for this DD, I am really not interested in medicine or the details of how the body works...

From a change of meds perspective, Pentassa made my joints hurt. Not too bad, but as soon as I said anything the doc took the dosage way down, as if this indicated something more than just the joints hurting. When I told her that it really was no big deal, she did not change her mind and still insisted I go way down.

When I took pentasa and prednisone, I got nuropothy of the legs (drop foot), the GI thinks this is related but the nurologist thinks it is just the DD. Thats when i dropped pred and took another steriod (I forget which one and also applied topical hydrocortisone). So the reality is I have been on some kind of steriods for a fairly long time (pred, nuropothy, hydrocortisone and entocort)... around 6 months now. I never thought about it that way until writing this..hmmm

I eat SCD yogurt daily, about 1 1/2 cups, so I am taking more calcium than I ever have. I take vit d and get it checked every 3 to 5 weeks cause that is how often I see the doc and I get blood work every time. I also take fish oil.

Also, my doc does not believe that diet helps smalll bowel CD, so she is not supportive of my diet, although she has no real beef with it. She thinks I am putting myself through more hassel than is required.

I guess my questions are 1) is there anything to do re getting an infection (take a suppliment?, eat differently...?)  and 2) as I have small bowel issues and entocort targets this area, what meds would you want to be on (as if you want to be any) and 3) do you figure I should also take a calcium suppliment 4) should my blood work be expanded to monitor kidneys or should I do something else? should I take something or eat something to help the kidneys?

I know for some this DD takes all their energy. I am lucky as I have the energy, most days, to do what ever I am told helps (like SCD). Although some have had no issues with long term steriod use, I seem to be a person that meds do not like, so I am very interested in doing everything I can to keep out of trouble

Thanks

dave

a few 'great' days sounds like REAL progress to me Dave ;)

four months of Entocort (with occasional flagyll and metrowhatsit) post resection surgery put me into a remission that is now into its 5th month. My longest remission in over 20 years.

I am lucky as I have a very supportive GI who thinks diet IS important and I now have a dieticians help to follow FODMAP which seems to help keep my symptoms at bay. Easier than SCD too!

I had no side effects on the entocort and would do it again at the drop of a hat for the relief it gave me. 

All I am doing now is following FODMAP and taking Vit B injections and Vit D suppplements as prescribed by my GI.  Really nice to have my life back.

Your positive 'mental' approach always impresses me so I really hope your great days soon outnumber the bad/ordinary ones!!

All the best

Lesley