Newbie... First post!

[SallyB]

Hi Gayle Great to meet you and thank you so much for the information.
Earlier on this year I had to have an injection of steroid into my hip for a trochenteric bursitis. About 24 hours after having it I had terrible facial flushing where my face was very red and hot and swollen. I mentioned it to the Doc who told me that I should not have any more steroid until I have been tested to see what I am allergic to.
I went to see an immunologist who did skin testing which showed no result and because I have what they called *Delayed* reaction it means I need further *Patch* testing to confirm. Because of this and the fact I was told I clearly have an allergy and could go into anaphalactic shock I will have to wait to see when I can get the testing done. My Gastro has said that it could take months and thinks we should try them...very worried and husband is also very concerned. My Gastro has said that it really is the only option for MC. Why is nothing ever straightforward. I seem to be beaten before I have started.
My Gastro has now called me *Challenging*......
I guess in some ways I am lucky that I do not have to pay for any of my meds as I have an underactive thyroid and take thyroxine, in the UK if you are taking a drug for something that is deemed to be lifelong treatment you get all your medications free of charge.

[tex]

Thank you Tex for all the info...Do you know if Enterolab do testing for people from overseas?

Sure, I can think of members in places such as Spain, the Netherlands, and even Hong Kong, who have ordered tests there.

You can see examples of results for many of us here.

I certainly agree with Gayle that you would need to hash out that issue about "never taking a corticosteroid again", with your doctor, before taking it, to make sure that you would not be putting yourself into a risky position by taking Entocort. The allergic reaction may have been caused by some inactive ingredient in the drug that you had previously, but that needs to be tracked down, despite what your GI specialist says. His life is not on the line — yours is, so please don't let him stampede you into taking a risky treatment. Budesonide is not the "only" treatment option for MC, contrary to his claims. He's apparently not even aware of the first line of treatment, namely diet changes.

You're very welcome,
Tex

P. S. Incidentally, while this branded product is known as Entocort CR in many countries of the world (including the UK), I believe that in the U. S. it's known as Entocort EC.

[Gayle]

Sally,

Hummmm … Interesting reaction, which sounds rather like some kind of a nicotinic or histamine reaction, but it occurred 24 hours after the injection? Am I understanding this correctly?

The word you used which does raise red flags is swelling. If the tissues of the face have become swollen – then what else might swell next time? – like the airway tissues, which then could become a more dangerous situation.

I also wonder about what your blood pressure and heart rate did during this time, but am also guessing that you were probably at home, so these kind of things were not observed specifically?

Because these kinds of things tend to dog me -- here is what I think I might consider doing:

1. Go back to the clinic where the injection procedure was done.

Request that they to go back to your records to find EXACTLY what the drug they used was. This information should include what the specific steroid component of that drug was, plus all other inactive ingredients. And, also request information on exactly who/what was the manufacturer of that injectable which was used in your treatment.

(I do not really know for sure, but I don’t believe that Budesenide is available in injectable form???)

2. Write a letter detailing you experience to Promethius Labs which is the originator/developer/patent holder of Entocort CR. Outline your situation and tell them your history, and include the specific name of the drug that you received, which you now have reason to believe you had a reaction to.

3. Send electronically to Prometheus Labs, you can find that information at http://www.prometheuspatients.com/

4. Ask them if they have any comments, opinions etc. regarding your suitability to take Entocort after having such an experience. This can’t hurt, and MAY provide you with some interesting information. Realistically, these Doc's can’t be expected to be taking the time to do this kind of investigation, but we can! So give it a go girl!! See what happens.

Gayle

[JFR]

Budesonide is not the "only" treatment option for MC, contrary to his claims. He's apparently not even aware of the first line of treatment, namely diet changes.

I just want to second what Tex is saying. Diet is the first line treatment for MC and many people here have used only diet, myself included. Granted this can be a much slower way to proceed but not having a medication that helps does not mean you are doomed to never getting better. I only eat about 12 foods but it's definitely working. I also found Enterolab testing very helpful but even before I got the results back I eliminated the big four (gluten dairy, soy and eggs). I still only eat about a dozen foods. I don't really mind the restrictions since it means I can leave the house. something I couldn't really do 6 months ago. SO if you can identify a few "safe" foods and just stick with those for a few weeks, you might find things improving. Patience is a necessary ingredient as well, and that can be the hardest of all.

Jean

[SallyB]

Hi Jean

Thank you so much for the info. I hate taking drugs and will avoid them when I can. I have real problems swallowing tablets which puts me off as well.
I have eliminated all gluten dairy and soya.....

So glad to hear you have managed to control it. Patience is very much a virtue I find very hard! xx

[SallyB]

Is there a prize for the number of times you have to go to the *Loo*....My average at the moment is approx 12 visits a day and it's getting really tiring. My D can be anytime but a lot of it is at night time so broken sleep is a real issue.

[Leah]

Welcome Sally. We all know you feel right now. This disease takes over your life and you can't help feeling sorry for yourself. It can and does get better.

Since you have read Tex's book, you know that Budesonide is the drug that seems to work the best for this disease. I started with 9mg. a day and slowly tapered off in a matter of six months. I felt better almost immediately with it. Some do the Pepto treatment, but it makes me feel sick. During the time that the drugs were working on the inflammation, I did the elimination diet. I basically took out gluten, dairy, and soy. I also stayed away from most night shades ( potatoes, tomatoes, peppers, eggplant), fiber, beans, acid foods,coffee and tea, and raw fruits and veggies. It was tough VERY TOUGH , but I figured I'd take out everything that could possibly be bothering me while I was on the drug, and then slowly introduce things one at a time back in later (after i had healed).

So, what did I eat? Protein, cooked veggies, applesauce, canned peaches, rice, sweet potatoes, rice cakes with almond butter, corn tortillas, Rice Chex cereal with almond milk .....

After I got off of the budesonide, I did start taking one OTC antihistamine a day and that seems to help with the last bit of "solidness". Mast cell issues. I am happy to report that I have been able to add many things back into my diet- mostly in small portions, but at least I can eat them now. You can't imagine how happy I was to eat a salad!

I'm so sorry about your cake business. I was a pastry chef many years ago and I guess it's a good thing I changed careers years ago. I am now a personal trainer and recently got my nutrition certificate. I'm hoping to not only help people lose weight, but educate those like us who are getting no help from their doctors.

Keep us posted on your progress and ask any questions. We are all here to support each other

Leah

[brandy]

Hi Sally,

Welcome! I agree with Zizzle there is big money in gluten free cakes. I'd love to have a place here in Florida where I could pick up a GF cake. There is nothing unless you go to a big city.

Diet is extremely key and was very helpful to me early on. Try to stick to real foods (i.e. limit anything with an ingredient list.) Think protein and overcooked veggies.
For about 6 weeks I ate just three foods but within 3 days it took my D from 12 x per day to once a day.

I wasn't aware of the pepto bismol treatment when I found this forum. I believe one current member is having good results. It seems to work for some and not for others. What do you have to lose.
You can always try it until you figure out about the Entocort. I was also an entocort user. It worked in 3 days but I found it somewhat of a strong drug to be on. Many members don't seem to have side effects.

Believe me you can get drastic improvements with diet alone. My employer and friends kind of forced me to go on Entocort but by the time I started like I said I was on one softserve movement a day.

Anything you can do to relieve stress can help...yoga, tai chi, meditation etc.

Brandy

[tex]

Is there a prize for the number of times you have to go to the *Loo*....My average at the moment is approx 12 visits a day and it's getting really tiring. My D can be anytime but a lot of it is at night time so broken sleep is a real issue.

We have at least several members who were having 40 to 50 BMs per day before they were able to control the disease. Eating most of your meals earlier in the day, and eating much less (or very little) after mid-afternoon or so, often helps to minimize/prevent nighttime problems. If you get hungry later in the day, eating small snacks is usually better than eating a large meal.

Like most members here, I would get up earlier than I previously did, to hit the bathroom, and I usually had to visit it twice before breakfast. I usually ate a substantial breakfast (followed by another trip to the bathroom, of course). I always ate a large midday meal (unless I was too sick to feel like eating), and maybe a snack or two during the afternoon, and I very rarely had to get up during the night.

Tex

[SallyB]

Hi Brandy

Lovely to meet you and thank you for your encouraging words it really means a lot. I have made quite a few GF & DF cakes which people seem to love so when I am feeling better I will get the pots and pans out again and start baking!

My Gastro mentioned trying me on Bismouth but said it wasn't available in the UK. I know we have pepto bismol, that is the pink stuff in a plastic bottle? We can buy that over the counter at the chemist here.

I am trying with the diet and expecting it to change like right now and clearly thats not going to happen. I really dont like the idea of using a powerful steroid! Why can't they make drugs that we can take that are not so powerful.
I really do need to address my stress levels. All this started after a really stressful few months when we were trying to buy a house and the deal fell through...was a really tough time now this has started!
Thanks again for the help Xx

[SallyB]

Hi Gayle

Thanks so much for the info what a fab idea! I do have a list of what was in the injection so I shall get an email off the the drug company.

Thanks so much for the help and info really appreciate it!

Sally
XxX

[tex]

My Gastro mentioned trying me on Bismouth but said it wasn't available in the UK. I know we have pepto bismol, that is the pink stuff in a plastic bottle? We can buy that over the counter at the chemist here.

That's what we use. Why use a prescription drug, when an over-the-counter (OTC), drug is much safer, and just as effective? Your doctor probably didn't mention it because physicians are programmed to write prescriptions, and for some strange reason they just assume that prescription drugs are more effective than OTC drugs.

They're not. OTC drugs have to pass the same FDA requirements (or European Medicines Agency {EMEA} regulations), as prescription drugs. Sure, the most powerful, life-altering drugs require a prescription, but that doesn't mean that OTC drugs are not effective for the claims listed on their label. Imodium (loperamide), for example, is an OTC drug, whereas Lomotil (diphenoxylate/atropine), is available by prescription only. They work the same way, and for all practical purposes, one works as well as the other for most of us.

Tex

[SallyB]

hi Leah

Thanks for the info great to meet you..I so look forward to the day when I can say I feel *Normal* again I realise that it will be a long road.
Has antihistamine been show to help then?

[SallyB]

Hi Tex

Wow 40-50 BM a day!.....that's horrific bless them...
I am really surprised that the Gastro didnt suggest I buy pepto bismal over the counter. Doctors here normally encourage that as it can be cheaper. Are meds very expensive over there..In the UK the NHS charge about $12 per item as it is subsidized. Some times OTC meds are cheaper. As I said in a previous post I am lucky I don't have to pay for any of my meds as I am on Thyroxine so all my treatment and meds are free although I did use my private health insurance to see the Gastro, so with his visit and the colonoscopy it cost about $3207. Does it all cost a lot more with you?

[tex]

Does it all cost a lot more with you?

The cost of medical exams/tests varies from one clinic to another, but in general, a colonoscopy typically costs at least 2 or 3 times that amount, here, and prescription drugs are outrageous. Over here, a one-month supply of Entocort probably costs 2 or 3 thousand dollars these days, for patients who don't have insurance (I say probably, because I haven't looked up the exact cost lately, but it varies from one pharmacy to the next, and the cost continues to climb).

Tex