Predisone

DebE13 · Post by **DebE13** » Wed Dec 07, 2011 5:42 am

I'm tapering off Prednisone and am at a 20mg/day dose and know from past experience that the D will return once I'm off. I'm also taking Cholestyramine which seems to have helped a bit with nausea & stomach aches but it's hard to tell. I've tried Entocort about 3 years ago and it didn't help. I'm wondering if I should try it again if the D does return? I was hoping the Cholestyramine would do the trick. Tex, you mentioned in an earlier post that it doesn't do anything for the inflammation so I'm wondering what works for others? I'm not sure what the plan is once I'm off of it. I've been eating GF for about a week and half now and am waiting to see if some of my other issues go away (severe eye burning & puffy feeling in sinus/eye area). If I do notice improvement how do I know the reason- was is the prednisone, cholestyramine, or the GF diet?

I want to get the testing done through Entero Labs and need to convince my GI to give the orders so it wil be covered under my insurance but I'm not sure how to go about convincing my doc to do it. It seems "they" don't like being told what to do. I've had some very bad experiences with doctors but cannot see paying for the test out of pocket when I can have it covered under insurance w/his approval. He really doesn't know what to do with me anymore and has brought up Mayo. I'm hoping he'll be receptive to my request. Considering the thousands of dollars already spent on tests/labs that I knew weren't needed- hopefully he'll approve the one that may give me some answers or I'll have to start saving my pennies. I've been telling the doctors for years that it's food related and I've been made to feel like I'm nuts.

The taper off the prednisone is going to be a slow one so I'm wondering if by the time I'm off of it the GF diet will have helped enough to control the D? Are most people with MC able to control the D throught diet alone or in combination with maintenace drug?

Post by **tex** » Wed Dec 07, 2011 9:56 am

Deb wrote:I've tried Entocort about 3 years ago and it didn't help. I'm wondering if I should try it again if the D does return?

IMO, yes, because the combination of Entocort and diet changes can bring remission when Entocort alone does not help.

If I do notice improvement how do I know the reason- was is the prednisone, cholestyramine, or the GF diet?

Your past experience with prednisone should be sufficient evidence that prednisone only helps when you are taking it. You'll need to get away from the prednisone to prove to yourself that the diet, or the diet plus Entocort, will bring remission. Cholestyramine usually only helps when inflammation levels are relatively low, (IOW, in mild cases).

Deb wrote:The taper off the prednisone is going to be a slow one so I'm wondering if by the time I'm off of it the GF diet will have helped enough to control the D?

Maybe. For most of us who have been accumulating intestinal damage from gluten for a long time, it can take from 6 months to a year for the diet to bring remission, because the gut is slow to heal from this type of damage.

Are most people with MC able to control the D throught diet alone or in combination with maintenace drug?

I really don't know what the statistics are on that one, and it depends on whether we include drug-induced cases of MC in the statistics, because those are typically much easier to resolve relatively quickly, without the use of an anti-inflammatory drug. Certainly, many of the most difficult cases, (those that involve many, many food-sensitivities), seem to require a minimal dose of Entocort, or one of the mesalamine-based medications, in order to maintain stable remission on a long-term basis, (in addition to avoiding all known food-sensitivities, of course). However, for those of us with only a few food sensitivities, (or cases of drug-induced MC), most of us are able to maintain stable remission by diet alone - provided we ferret out, and avoid all of our food-sensitivities.

I wish I knew how to convince all GI specialists that IgA-based stool testing should be the first step for treating all cases of MC, but unfortunately, many GI docs seem to be handicapped by irrational thinking in such matters. They have their minds made up, and they refuse to even consider the truth, no matter how obvious. Every doctor is an individual, and a one-size-fits-all approach usually won't work. In most cases, it boils down to whether the doctor is open-minded or not. If he or she is not open-minded at all, they're usually a lost cause. If he denies that diet has anything to do with MC, then I don't now of any reliable way to convince him to order a stool test for you.

Maybe someone else has some ideas that might work.

Tex

DebE13 · Post by **DebE13** » Thu Dec 08, 2011 4:39 am

Would trying the Entocort now while still tapering the Prednisone be more effective than waiting for the D to return when I'm off the Prednisone?

starfire · Post by **starfire** » Thu Dec 08, 2011 7:53 am

When I was diagnosed (early 2004), I was given pred and had difficulty coming off it. Dr left me on it for 3 months continually trying to reduce the dosage. At the same time he had me on Asacol with the idea that the Asacol would control the symptoms after withdrawing from the pred.

I finally told him I was coming off the pred no matter what. He then had me introduce Entocort (ramping up the dosage) and at the same time reducing the pred dosage. I then had no problems eliminating the pred. After another 3 months I had reduced the Entocort to O and maintained on Asacol.

I don't know if this answers your question but it seemed to work for me.

Good Luck,
Shirley

Post by **tex** » Thu Dec 08, 2011 10:42 am

Deb wrote:Would trying the Entocort now while still tapering the Prednisone be more effective than waiting for the D to return when I'm off the Prednisone?

Probably. I agree with what Shirley said - it's safest to increase the Entocort while reducing the prednisone. With corticosteroids, one has to be careful not to OD, because that can have serious consequences, some of which occasionally turn out to be permanent.

Tex

DebE13 · Post by **DebE13** » Thu Dec 08, 2011 12:02 pm

That's good to know- thanks. I'm taking 20mg daily right now and have to check in next week for the new dosage. At least I'll know what to ask. I've been on prednisone since July and really want to be done with it. My GI wasn't very clear what the big plan is since I've not stopped complaining about all the other issues aside from the D. When I told him that the Entorcort and Asacol didn't work for me years ago it ended any further conversation about what to do. It's disappointing that he wouldn't at least suggest giving it another try since it's been over 3 years. Oh well, I guess I should get used it and not let it anger me as it did in the past. I'm thankful for getting such useful information here and if I have to advocate for myself- then that's the way it'll be. I expected that the medical doctors would direct me to what is best and have realized how poorly they inform their patients at times.

harvest_table · Post by **harvest_table** » Thu Dec 08, 2011 8:15 pm

Hi Deb,

I understand your concerns about your health and road to recovery- glad you found this group and are asking questions.

My experience with pred was only a 2 month dosage shortly after my cc dx which really helped me feel back to normal after a very long time. I did not address diet at that time so after weaning off my symptoms returned also. I then began a 6 month entocort and gf diet.

Since then, many years later I would say that I'm maintaining my symptoms with diet alone but the combination of meds and diet got me on my way.

Glad to hear your going GF.

Love,

Joanna

DebE13 · Post by **DebE13** » Fri Dec 09, 2011 5:28 am

Thanks for the link Joanna- it may sound silly, but I get so excited to find good information that helps me learn about what's going on. For years I've felt like I was just floating out there all by myself with lots of "could be" explainations and no real help when the traditional (and non-traditional) treatments weren't working.

I think a big part of it too is finding an acceptance. About 2 years ago my chiropractor brought up diet modifications and I clearly remember thinking she was way out there and I would never be doing that (because of everthing I would have to give up). This is another reminder to never say NEVER. I'm still grieving over food too but my health has become so poor and my quality of life has declined so much that there really isn't a choice. I've missed out on 4 years of fun with my husband and son and that's time I will never get back. I at least don't have the anger I once had towards my poor family who had to put up with me- I'd fume at the dinner table after cooking a "good" meal and then make mine and then feel like I was being punished because I had to eat what was on my plate.

I look forward to browsing through some new-to-me info tonight!

Lesley · Post by **Lesley** » Fri Dec 09, 2011 1:39 pm

I took prednisone 2x in high doses, once in 2003, and once a few months ago. Coming off it both times was excruciating. I never want to do it again.

I am of the C persuasion. Eating the wrong thing (everything except what is below) sends me screaming to the toilet, but when I stick to basic meat (beef and lamb)and potatoes I get horribly constipated, and entocort makes it worse.

Right now I am trying to figure out if entocort helps with the gut inflammation at all.

I also grieve the food, especially the easy stuff, like cheese and crackers and eggs for a light supper, SALAD, FRUIT, VEGGIES (the basis of my diet before MC) and flavors I miss. Still, I am getting into the habit of looking at EVERYTHING I eat with a fine tooth comb, and trying to figure out how to get more protein.
I am missing my grandkids horribly. I can't travel to see them because I don't have grip on my illness yet. As soon as I figure out what I can and can't eat and feel better I will get on a plane.

This is the best place to get help and support. The doctors neither know, nor, it seems, wants to know what helps us. We don't have much respect for most doctors around here.

DebE13 · Post by **DebE13** » Fri Dec 09, 2011 5:19 pm

All I can say is I wish I came with a owner's manual! I would be more than happy to eliminate any and all foods that I shouldn't be eating but I haven't figured it out yet. I guess as is with most things in life- it just isn't that easy.

I've read several posts talking about how horrib.le coming off Prednisone is- could you explain a little more? I'm at 20 mg now down from 40 mg and I'm wondering what happens. After a few weeks at this dose it seems like it's less effective, not sure what's going to happen when the dose is decreased. I have numerous side effects right now from taking the Prednisone- is that what you're referring to or are there other things that happen? I am also fortunate that with my CC I don't have pain. I get gas & bloating but it isn't what I'd consider "pain."

I continue to grieve food- my upbringing celebrated food. I used to enjoy cooking, baking, experimenting with campfire cooking, etc., and now it's no fun if I can't eat it. My favorite is pizza, artisan breads, and all of my mom & dad's home cooking. It's especially hard with eating out- we always went out to eat on Fridays but now it's just so hard I don't want to which is difficult for my family. I'm trying to figure out what I will do for Christmas when my step son comes to visit from out of town and we traditionally go out eat. It's not worth taking the chance right now to eat and get sick.

Lesley, I am so sorry that you can't travel. I know how you feel, we like to visit his sisters in Florida when we can and I really don't want anything to do with that type of travel when I have to worry about D and now foods. We go to our cottage up north almost every weekend, aside from winter months, and even planning for the trip gets to be a drag.

I have such hard feelings for the doctors I've dealt with and continue to be scolded by my mother (god bless her goodness) because they just don't get it. I have had horrible experiences with some doctors especially when I talked about trying alternative medicine. I'm on my 4th GI and consider myself lucky (ha ha) that he would take me. I was dropped by one when they learned I sought a second opinion. So right now I am behaving myself and trying to do what they say and find the least offensive way to tell them what I want although they may not get it.

In the short time I've been here- the support and information is a Godsend. I have hope again.

Lesley · Post by **Lesley** » Fri Dec 09, 2011 5:48 pm

Deb,

All I can say is I wish I came with a owner's manual

or replacement parts.

Prednisone is the strongest anti inflammatory there is. Which is why it is good for suppression of pain - joint, muscle, you name it. I have bad back and shoulder injuries, and a lot of joint and muscle pain, so the prednisone helped while I was on it. But the side effects were awful. As I reduced the prednisone the pain came flooding back, and the D also started again. It seemed worse than before. I was miserable. I didn't want to take entocort so I didn't use it while I was getting off the prednisone. I was determined to get it under control with diet alone.
Unfortunately I was not successful, and started Entocort last weekend.

If you don't have pain as you reduce the dosage go for it! I HATE the stuff. I want to get off all my meds. I am so sure they played a large part in the development of my MC.

One day, soon I hope, when I know what sets me off and what I can tolerate, I will be able to travel. But I know it will always be complicated, especially for the people on the other end. Airlines are so strict about weight requirements that carrying all my food with me is not possible. How can people in a different country prepare stuff when I don't know what products will work for me?

With a bit of luck you will settle down and get things under control soon. going to your cabin shouldn't be a problem when you know what agrees with you and what doesn't. You will need to have the basics there so you can prepare a meal.

Oh, and as a foodie and (in my past) a very good cook and baker, I know about grieving for food.

Deb · Post by **Deb** » Fri Dec 09, 2011 6:35 pm

Deb and Lesley, I think a lot of us understand the grieving you're going through, having to give up our favorite foods. I remember posting on here that I was feeling like I was going through a grieving process for a death and in a way it was. I am fortunate in that I was able to attain remission with the elimination of gluten alone. I may still have some other issues (causing acid reflux) so am continuing to monitor my diet. But where I've gotten to, the food is not the important part to me now....it's the socialization. If I get to spend time with my kids/grands at a nice dinner I'm okay having a baked potato, if that's all I can eat. The food has become a whole lot less important than the company.

Gabby · Post by **Gabby** » Fri Dec 09, 2011 7:19 pm

Hi DebE
I like this article about the stages of gluten loss:

http://glutenfreeeasily.com/five-stages ... -plus-one/

It gets easier when you start feeling better. And when you have been GF for a while and then do a test and feel rotten afterwords, it gets even easier.

Gabby

draperygoddess · Post by **draperygoddess** » Fri Dec 09, 2011 7:49 pm

Thanks, Deb! You're absolutely right. I learned a good lesson about this very early on: right after I gave up gluten (before I lost dairy and potatoes), I was visiting my husband's family. Our niece is severely gluten-intolerant and has had to learn how to eat like we do, at a much younger age. We stopped by the Great American Cookie Co. for GF cookies (which were wonderful, by the way), and when I got one, she asked me if I couldn't eat gluten either. She said, "Oh, well, there's lots of stuff we CAN eat." Now, here's an 11-year-old girl who can't have cake at birthday parties, or pizza, or many of the things her friends eat at lunch every day, and she has such a GREAT attitude! I'm fortunate not to have a diet as restrictive as many of yours, and I remind myself of that every day when I read your posts. There's always somebody worse off than I am!

Deb and Lesley, I hope you're able to find some answers soon! Feel better! We're all pulling for you!

Post by **tex** » Fri Dec 09, 2011 7:50 pm

DebE13,

Here is a description of how prednisone withdrawal affected the founder of the original board that this board superseded. She used prednisone for several years, (because it was the only effective treatment available back in those days), and she had a very difficult time withdrawing from the drug, because of the horrible withdrawal symptoms. This description was written about a month after this board was started:

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=692

Tex