Update - 1 Month of Imuran

[Joefnh]

Well it's been a month since my last update about transitioning from the Entocort to Imuran and thought I would post an update on this part of my journey.

As a quick summary for some of the new members. I was diagnosed last April with both CC and Crohns. The initial goal was to try the 9mg of Entocort and the GF/DF/SF diet for the summer and see if the diet in combination with the Entocort could bring the D and pain under control. Initially my GI doc was concerned at using only the Entocort, as it would not effectively treat the area of the small intestine where the Crohns has been active, though it would treat the CC.

My main symptoms since last February was D and over the past 12 years a fair amount of joint and muscle pain, iritis and uveitis.

Overall the Entocort at a dose of 9mg did quite well initially controlling both the D and the secondary autoimmune symptoms mentioned above. I did notice that after about 3 months on the Entocort that the efficacy in controlling the secondary aches & pains did diminish somewhat, although it did OK at keeping the D more or less in check.

This past September I was scheduled for another colonoscopy and pill camera to evaluate both the CC and the Crohns. The results came back favorable for the CC as it did show a 12% reduction in the collagen band thickness, but the Crohns did show additional ulcerations and there was concern of a stricture forming.

After reviewing the results with my GI doctor, it was decided that the best method in dealing with both the CC and Crohns would be to transition off of the Entocort over to Imuran. Imuran is a immunomodulator drug which is intended to slightly suppress the immune system, thus reducing the autoimmune mechanism that is felt to be responsible for both CC and Crohns.

My initial concern was that this is a 'big gun' medication, that was originally developed in suppressing the immune system after an organ transplant, or even as a adjunct chemotherapy medication for leukemia; definitely not a medication to be taken lightly. This medication was developed in 1964 and since then has had an excellent safety record, as long as periodic testing for liver function and white blood cell counts are performed.

Since the early 1980's Imuran has been used quite widely to also treat rheumatoid arthritis, and more recently has become a commonly used alternative to steroids in treating Crohns disease and other intractable autoimmune diseases.

It has now been 1 month on the Imuran and I can say that things are going quite well. Overall the D has completely gone and 'norman' is here most days. Along with the elimination of D, all of the secondary symptoms mentioned above have been all but eliminated.

All in all this is the best I have felt in over 12 years. While I still have a couple of bad days a week, things are steadily improving. Currently I am on 3mg of Entocort and am scheduled to stop the Entocort entirely in another 4 days.

As part of my ongoing plan, I am will be continuing to follow the GF/DF/SF diet that I have been on since last May, and the acupuncture sessions twice a week.

I would again like to thank all of the wonderful members on this site for all of your support and friendship. I am not sure how I would have made it this far without all of your help.

--Joe

[Gloria]

That's a great report, Joe. I know you were hesitant to try Imuran, but it sounds like it's just the prescription you need. The schedule you've followed in transitioning seems to be working well, too.

I'm curious - is Imuran more or less expensive than Entocort? I can't remember if you have adequate insurance, so maybe that isn't an issue for you.

Gloria

[Joefnh]

Gloria fortunately my insurance is pretty good. A three month supply of the Entocort costs me $25.00. The Imuran is available as a generic, it costs $4.00/ month. I believe without insurance its around $30.00 / month.

This medication does seem to work quite well for me. I have suspected for a while that I have significant 'secondary' autoimmune issues at work of which the CC & Crohns are that latest members. In this case the Imuran really has targeted all of them with little to no side effects to date.

Its so good to not have any pain or D


--Joe

[starfire]

Yes, you do have good insurance!! I'm very glad about that. Mine is pretty good but not that good. I'm not complaining....... happy to have it at all.

It is wonderful that you are doing so much better. It must be quite difficult to co-ordinate more than one issue at a time.

You have really come a long way, Joe and I'm proud of you.

Love, Shirley

[Polly]

Hi Joe!

Thanks for the upbeat progress report. It is apparent that you are tolerating the Imuran very well and feeling much better. This is fantastic news! I'm curious..........in your internet travels, have you encountered others who have both Crohn's and MC?

Love,

Polly

[Kimberly M]

Hi Joe!

I am pretty new to the forum and don't post alot as I feel I don't have alot to offer. I have read some of your posts over the last few months though and know you have really struggled. I am soo happy to hear your good news!! It is so encouraging for so many to hear you are making such wonderful progress!

Congratulations and I hope you continue in this positive direction!

Kim

[ant]

Dear Joe

Thanks for the update. That's pretty positive news so far on your response to Imuran. I hope you continue to progress.

Do you or others happen to know if Imuran is less likely to cause osteoporosis issues then Entocort?

All best, Ant

[Joefnh]

Kim, thanks for such a nice note. This really is a great site and a wonderful group of people. I am not sure I would have made it this far without all the great people on this site.

Polly I have not run across anyone else on any of the Crohns boards that I have visited that have both CC and Crohns. My GI doc was quite curious about my case, and I think I mentioned at one point he sent the original set of biopsy slides off to Ceder Sinai and has been reviewing my case with Dr Sands at that facility. From what I have gathered its not common for both conditions to be present at the same time.

Its been great to have this positive of a response to the medication and to be tolerating it well. From what I can gather, some have issues with nausea with this medication. I have found that its best to take this with meals as it can cause some stomach upset when taken on a empty stomach.

Ant, great to hear from you. I have been following your posts about weaning off of the Entocort. That's really been a long road for you. Its always been great to read your posts and the wonderfully positive attitude that you have kept.

Imuran is considered a steroid sparing medication and does not have any of the bone related side effects that the corticosteroid medications can have including osteoporosis. Additionally it does not produce skin thinning or the fat pad redistribution that corticosteroids can produce after long term use.

It has been great to have visits from 'Norman' again and the increase in energy has been great.

--Joe

[tex]

Joe,

So far, so good.

It's a pleasure to read such an upbeat report.

I hope that the treatment continues to provide steady improvement.

Tex

[Kari]

Hi Joe,

I have been following your progress with great interest and it is so heartwarming to hear of your progress. Have often thought of how difficult it must be to deal with 2 similar, but different, conditions at the same time and wondered how you could possibly get them under control. It sounds like you're doing all the right things to help yourself. As well as conquering the D, you're also getting energy!!! That's such an awesome part of the healing process!!! Anyhow, I'm so happy for you - thank you for posting your update, it is a true inspiration.

Warm regards,
Kari

[harma]

he Joe great you are doing so well on Imuran and very brave of you and wise you took this medication. IBD's always seems to be finding a balance between diet and meds. And of course the difference with MC an Crohn is that crohn can actually damagae the colon permanent.

I hope you will keep on doing well and can in future quite some of the meds.

thanks for the update.

harma

[Rosie]

Joe, what a great report!! You have worked so hard at understanding the complexities of your two diseases, and now with the combination of diet and Imuran you finally are feeling good again! I hope you continue to improve!

Take care,

Rosie

[Pat]

Joe,

Good to hear you are doing so well on the Imuran. If I remember correctly the blood tests that one has to have periodically are what are so expensive about imuran. When I took it I was also on Entocort and when I stopped the Entocort it took about 5 weeks to eliminate the Entocort from my system. Then all hell broke loose again. Hope that is not the case for you. It wasn't the Imuran that was helping me but the Entocort, but I never achieved Normans. FWIW My dr really felt that Imuran was much safer than Entocort. Lots of Luck!

Pat

[Joefnh]

Pat there are a total of 3 blood tets that need to run before and while on Imuran

1.) Before starting you need to have a TPMT (thiopurine S-methyltransferase) test which is a genetic test to determine if you are part of the 1% of the population that cannot effectively process Imuran to 6-mercaptopurine the active (converted) ingredient for Imuran. If you do not have the appropriate TPMT level you will not be able to appropriately metabolize Imuran which can lead to a toxic buildup in the system. This is a one time test to be run before starting Imuran

2.) Initially you should have a baseline measurement of your liver enzymes and a simple CBC (Complete Blood Count)

3.) The CBC and liver enzymes should be run initially at 1 week then 1 month and then each 3 months after that to monitor for the correct level of white blood cells and liver enzymes.

I am not sure how expensive these tests are to run.

As far as Imuran being safer than Entocort I am not doctor, but in my research I feel that Entocort is a safer medication than Imuran at least for the first 6 months.

Imuran works by suppressing the formation of new blood cells during their S or resting phase and in a controlled dose of 2.2 mg / kg can reduce the immune systems response by limiting the production of lymphocytes. This minor suppression in turn reduces the autoimmune response that is responsible for autoimmune diseases like MC (CC or LC), Crohns, Lupus etc...

Entocort while a potent corticosteroid is 90% limited to 'coating' the lower part of the small intestine and the colon (large intestine), only about 10% actually makes into the blood stream.

If I have done my math correctly, with a 9mg dose of Entocort you receive about a 15mg 'equivalent' dose of prednisone. Using that as a reference, 15mg of prednisone is a fairly low 'safe' dose of prednisone for up to about 6 months of constant use. After 6 months of that dose, the risks of immune suppression, osteoporosis and development of diabetes do increase.

A good question to ask is that after 6 months on Entocort and you need to take it longer, then what. Obviously assumed increased risks do occur. It does seem like myself, that most with MC require Entocort for longer than 6 months. If possible a lower dose, lets say 6mg of Entocort reduces this risk.

What makes Imuran somewhat more risky is that it is designed from the first dose to suppress the immune system. Imuran does not carry the risks of osteoporosis or diabetes that a corticosteroid does but there is a slightly increased risk of cancer about 1 in 10000. With Imuran you also have to be careful of exposure to live viruses (stay away form sick people etc).

For me at least Imuran works incredibly well, with an almost 100% reversal of symptoms seen within the first 30 days of use.

I hope this helps answers your questions pat.

--Joe

[klhale]

Hi Joe,

I am so glad you are feeling better. I too was treated w/Imuran for about 6 months back in 2001. Keep an eye on you salivary glands in your neck. I came down w/Parotitis (aka Mumps on one side). Very Very painful and ever since that episode that sent me racing to the hospital, it turned from Mumplike illness into Sjrogren's syndrome(dry mouth, dry eye etc.). With swollen glands and all, the docs thought I might have gotten lymphoma from the Imuran.
Thanks goodness it was not cancer, but I got off Imuran, and would not take it again.
I suffer from Sjogrens to this day.
Like you, I have been on Entocort, which works really well for me.