20 Days off Entocort

[DebE13]

I finally stopped tapering after being on Entocort since February of 2012. I made in 20 days before having problems. It's hard to gauge the effectiveness since I've never had C or regular Normans while taking it so I haven't had a sign that it's time to taper. The idea of starting over at 9mg for who knows how long just does not appeal to me since I want to simply be off steroids. I most likely pushed it too much by eating pecans several days in a row. (I know raw nuts are hard on the guts) I don't know that for sure but I'm searching for answers with my diet since it is very restricted and I am vigilant about avoiding gluten, dairy, soy, and eggs. Nuts seemed to be ok but the minimal dose of 3mg every forth day must have helped with blocking a flare. I knew I was in trouble when I started going to the bathroom at odd times during the day, waking up in the middle of the night to go, and having D be my alarm clock in the morning. I don't dare lounge in bed or I will never make it the down the hall in time. I generally have my 4 runs to the bathroom each morning and then I'm pretty good for the rest of the day. I know this is nowhere near normal but for me it was tolerable if I could be off meds.

After the night visit I took 9mg of entorcort the next morning hoping it would help put a halt to the downward spiral. I debated if I should keep taking it but just couldn't. I know it's not meant to be used like pepto or immodium (neither work at all for me) but I'm grasping at straws. I cut back to mostly just meat, rice and my veggies, which is my normal diet. Looking back, I was eating more fruits than I have in the past and maybe that contributed to it too. So, no more fruit or nuts. Other than that there isn't anything more in my diet. The other problem I have is that I like to eat all day long. I'm trying not to snack at all and just stick to three meals and nothing more especially in the evening.

It has been four days now and things aren't getting worse but I feel like a timebomb waiting to go off. My hemmorhoids have gotten considerably worse and today I have a nasty rash on my face and swollen eyelids that I haven't had for a long time. I worked in the garden for most of the day yesterday and sat in the sun for about 15 minutes to read a book. After that I got overheated and moved to the shade. I thought the sun might do me some good.

My fatigue, brain fog, and equilibrium have gotten considerably worse but I don't know if it's related to going off the entocort. I don't think so but it's hard to tell what problems go with what issue. I have a two week wait to see my endo for the first time since my ultrasound in June. Hopefully he will agree to treat my thryroid and some of these problems will go away. My patience is wearing thin and I'm feel a bit angry that my whole summer has been shot because the healthcare system moves so slow. I keep calling a couple times a week to see if there's been a cancelation but I think I will be stuck waiting. I don't know how to become a priority. I had to pull over to the side of the road last week because the car seemed to be floating and turning sideways. That scared me. It hasn't happened since but I continue feel off balance and feel like I could just drop and take a nap at any given moment. I was told the endo will most likely do a whole hormonal work-up. Hopefully, within those tests he will find something that is not normal and I will have some answers. I'm the most normal sick person I know.

[tex]

DebE,

I'm very sorry that you've had this setback. The rash and swollen eyelids suggest a possible mast cell reaction to sun exposure. Don't they?

I've forgotten your history with antihistamines, but have you experimented with enough of them to find 1 or 2 that might help?

There are suppositories available that can help to settle down the 'roids.

I can't help but wonder if something in your environment besides food and stress might be contributing to your symptoms, but I have no idea what it might be (if it exists).

I agree with your assessment of the medical system. When we're really sick, every minute is agony, and yet minutes, hours, days, weeks, and even months don't seem to be of any significance to most specialists. Our pain doesn't even seem to register on their radar. That said, there's not much they can do to change a market that's controlled by supply and demand — too many sick patients and not enough specialists. Of course, the primary problem is that they rarely actually cure anyone — they only treat them.

I hope you can find some answers soon.

Tex

[DebE13]

Thanks Tex,

This is the frequent rash I had in 2011 when I was at rock bottom. It generally was triggered by working in the garden (something I refuse to give up, but cannot spend as much time in it as I'd like) but this time it seems to have been from the sun. I have totally lost my ability to regulate my temperature. I am hesitant to go anywhere without long sleeves because I'm often cold. But on the other hand, I can burst into a hot spell without warning. I did go through a period of time where I had night sweats but that's been a while and seemed to be related to my prednisone days. I don't believe it's pre-menopausal but never been through it so I really don't know. I don't tolerate the cold well and never have which was comical at times when I worked outdoors. I had layering down to a sciences and didn't get out of my coveralls til late spring. I tolerate the heat even less. If I were the indoors type it might not be so bad but its down right irritating to be trapped inside. Wisconsin weather can change on a dime. I routinely pack my swimsuit and long underwear on our weekend trips up north.

I've been following the histamine threads since I joined. I suspect I have issues but my diet is so limited right now I don't consume many high histamine foods. Although I do cook meals in advance to eat during the week and have read the debate on that topic. I've tried nasal Crom, histame, Allegra, Zyrtec, and Benadryl. I don't notice much when taking it and it does nothing to change the D. I continue to take it because I do have seasonal allergies and it helps with the itching I get from working in the garden. I took an Allegra hoping it would calm the rash but it didn't touch it. Benadryl helps but I sleep enough the way it is so will put up with the rash until bedtime.

I'll have to look into the suppositories- are they different from preparation h or tucks? Neither do anything for me. Mine are external and literally a pain in the ass. Had one lanced once when I was young and very stupid. I will never do that again. Ouch x100.

My appointment was originally on August 9th so I should be happy I was at least able to move it up to July 26th. I have hope that I'm moving forward but have a dreadful feeling that I may be pronounced normal and healthy since that's the trend. Although, these are all new docs so it is encouraging that I wasn't dismissed after my first visit. Again, the hardest part- patience.

[tex]

I took an Allegra hoping it would calm the rash but it didn't touch it.

Remember that antihistamines can only prevent a histamine-based reaction from being completed — that is to say, they can only block the histamine receptors to prevent histamine from attaching to receptors in order to complete the reaction. Antihistamines can't reverse the damage that has already occurred, once a reaction has been successfully completed (though they can certainly prevent additional reactions from making the symptoms worse). Only a corticosteroid can resolve a rash, once it has already formed.

I'll have to look into the suppositories- are they different from preparation h or tucks?

Yes, they're different (they're designed to be inserted rectally, where they dissolve at body temperature to deliver the active ingredient/s), but if your 'roids are entirely external, then suppositories probably wouldn't offer any treatment advantages.

If you're having that much trouble regulating your temperature, then surely any endocrinologist worth her or his salt should be able to find the problem somewhere within your HPT axis.

Tex

[Leah]

Oh DebE. I feel for you. Sometimes getting out of these flares takes time. My last one took me about a month. During that time, I started taking Histame ( which helps the body break down and rid itself of excess histamines) I took out high histamine foods for a while and I switched to Allegra. I slowly but surely got better, but it sounds like your thyroid is whacked and really needs some TLC. While camping, I took 3 tylenol PM tabs to help me sleep and discovered that they make me have normans! When, I think Sheila, looked up the active ingredient, it turns out to be an antihistamine... similar to Benedryl! That was a big clue that my problems mostly stem from histamines. I remember that tex said that we can take more then the recommended dose of antihistamines, so maybe you can try that and see if it helps.

I hope you feel better soon
Leah

[DebE13]

Thanks Tex- as always, you are a wealth of information. Pre MC I never though twice about popping a pill or using OTC drugs not understanding how they work or what is in them.

It's almost comical today, a good lesson in things can always be worse. My itchiness has spread or my mind is fixated on how uncomfortable I am. It's in he high 80s here which is hot for us and makes things even more uncomfortable.

I finally went to the store to pick up some Benadryl because I'm out. Why does the makers of Benadryl specifically say on the box that the diphenhydramine is made in Japan? Does this mean anything? I'm hesitant to use a generic because of the different ingredients. They seem to be ok but lots of things seem to be ok until I find out they're not.

Leah, thanks for the tip. I'll have to pay more attention to histamines. I should start my journal again but I stopped when I started feeling like I was being punished for having to keep track of everything. The info is valuable but sometimes the smallest of things makes me feel like it's just one more thing I have to do that healthy people don't and I get resentful of my diet. Although the sensible me knows its only to my benefit.

Glad you stumbled on a new method that offers some relief. I hope your camping trip went well.
How many Allegra do you take?

[tex]

It's in he high 80s here which is hot for us and makes things even more uncomfortable.

After spending a week or so with temps near and above 100, I'm amazed to see that the temperature here right now is 69 degrees. Weird weather.

Why does the makers of Benadryl specifically say on the box that the diphenhydramine is made in Japan? Does this mean anything? I'm hesitant to use a generic because of the different ingredients.

Maybe they're just proud that it doesn't come from China.

Tex

[DebE13]

it's so sad that we have to scrutinize and doubt everything. It did give me the laugh I needed though!

I am not complaining about the heat because I think it was just last week I was confident enough to put the snow shovels away. I'll take green over white any day. That is odd weather for you.

[Leah]

Deb, I usually only take one a day, but if I am going to a restaurant or a social situation, I sometimes will take 2.... or I take an extra Histame.
I know what you mean about having to watch everything you eat. I feel the same way sometimes. I live too active of a life to be as careful as some are here. I commend them, but I am always looking for ways to live as "normal" a life as I can. I do try not to OVER DO with the histamine foods, but now that I am back in control, I do still eat some avocado and use vinegar and mustard when I want to. The one thing I don't do any more is eat left over chicken.

Feel better soon
Leah

[Gloria]

I agree that you're probably having a histamine reaction. I never used to worry about being in the sun, but these days I always wear a hat when I'm working in my garden or out in the sun for any length of time.

Like Leah, I accidentally discovered that the ingredient in Benadryl made my MC better. I bought and used Benadryl for a couple of weeks with great success. I dropped one Entocort pill and from that point on, Benadryl ceased to help me.

I presently take one Claritin RediTab a day and it seems to help the histamine issues. We each have to test the different types of antihistamines to know which one helps the most.

If Entocort provided some type of remission for you, I'd recommend that you go back on it. One pill every day or every few days is not a high dosage. If it makes your life more normal, it's worth it. That's the decision I've made, anyway.

Gloria

[DebE13]

Thanks for the tips Gloria,

My biggest problem right now is I've been using all the products but I don't notice that much of a difference with any of them. Was it immediate or did you have to take them daily for a period of time?. I still have the rash but it is better. My skin is now starting to flake off in areas like a sunburn. It's weird though because the reaction was not a sunburn it is a rash.

The entocort never brought a feeling of being somewhat normal but it improved the night issues and frequency. I still haven't taken any since the emergency dose. Just waiting it out to see if I improve or get worse. Looking at my supplemental foods to my meat and veggie diet and they are primarily high histamine foods.

[Leah]

Deb, are you sure you have a histamine issue? One way to find out is to take more antihistamine then you normally would and see if your symptoms improve. Mine does every time I do it. it's so obvious. There was my answer..... but i choose not to take too much of the stuff on an every day basis. I just don't want to take a lot of drugs. Having a perfect norman every day just isn't that important to me.

leah

[DebE13]

No, I don't know for sure but I don't know what's left. I do have seasonal allergy issues and freak rashes that I can't pinpoint the cause. I never had these problems pre MC. What would be more than normal? 2 pills, 3 pills? More than one day in a row?

I rotate Allegra and Zyrtec when needed but have been taking it (1 pill a day) more frequently because of my recent rash. Of course, I am taking Benadryl now to help calm my angry skin. Not sure how much it is actually working because I've had it since Sunday but it is getting better. I did take two Benadryl one night at a three hour interval because my face was on fire. That night I had cramping and D in the middle of the night. Not sure if it was a fluke but I found it odd since I was hoping for something a bit more normal. It helped me sleep so that was a plus.

[Gloria]

The only antihistamine that gave me Normans immediately was Benadryl. As I wrote above, that stopped helping me after a couple of weeks. I then spent several weeks testing all of the other antihistamines. None of them provided any noticible improvement, so I stopped taking them completely. This was in the winter.

Toward the end of summer, I began getting itchy head sores as I have for the past couple of summers. Then I had an itchy bump on my back which began to spread to my entire back. You probably remember reading my thread about it. In spite of using a cortisone creme, I still had the itchy rash in October. That's when I began using Claritin in the morning and Zyrtec before bedtime. My rash slowly went away, but I think it took a couple of months. I finally dropped the Zyrtec, but have continued to take a Claritin Reditab each morning. I tried reducing it to 1/2 pill, but I started to get a rash again. I'm holding my breath for this summer's results.

Gloria