Got in touch with my doctor

Beth · Post by **Beth** » Mon Dec 18, 2006 4:52 pm

Hi everyone,

I got in touch with my PCP just now. Finally. But I could spit nails. She really didn't want to prescribe the medication for me since she doesn't know about MC, and she said I hadn't let her treat her (she apparently was pissed that I went to see a naturopath). She kept going on about how I hadn't tried an elimination diet, etc (if only she knew!), and every time I tried to interject, she just kept talking. And then she said that I hadn't allowed her to be a partnership in my care, and that that wasn't the kind of care she wanted to be a part of. BUT. I got her to call in the prescriptions for me. She didn't even know what entocort is, but she still called it in. Didn't ask me to come in to see her, didn't ask me to do a follow up. It took me a good ten or fifteen minutes to get her to say she'd call it in. She was just arguing the whole time. I'm glad I got the prescription, but I haven't been this mad in a long time. I'm DEFINITELY changing primary care physicians. This is ridiculous.

Pissed off in Boston.

bobh · Post by **bobh** » Mon Dec 18, 2006 6:50 pm

Well done - getting your prescription despite insurmountable odds!

harvest_table · Post by **harvest_table** » Mon Dec 18, 2006 7:07 pm

Ditto Bobs sentiments....good job Beth!

Actually, I'm surprised that she did agree to write it for you without seeing you first. That seems to be the common practice with our physicans, they want that $ for an office visit or to cover their butts should something go wrong.

Did you happen to mention you had found an online support group for MC folks and that is why you wanted to try these meds? It's too bad you couldn't get a word in edgewise, she might have been able to learn something about MC. How frustrating.

Now, this is going to be very interesting following your recovery with these meds. What exactly are you taking and what's your plan of attack?

Rooting for you in Alaska!!!! Hope your feeling better very soon.

Love,
Joanna

Beth · Post by **Beth** » Mon Dec 18, 2006 7:22 pm

I'm doing the same thing Bob did - starting at 60 mg of prednisone for two days, then tapering down by ten mg every other day until I get to 20 mg, and then I'll go on 6 mg entocort as I taper off the prednisone. But I'm really doing this on my own. I need a good doctor, and I can't find anyone! That will be my next order of business. But at least I'm going to put a stop to this endless D. Everything I eat - and I've eaten almost nothing for 4 days - gives me horrible cramps and then goes straight through me. I pray to god this will work!

bobh · Post by **bobh** » Mon Dec 18, 2006 7:44 pm

Well, since no one else is being your Dr. I suppose I'll step in...

Your inflammatory conditions should improve dramatically over the next few days. As I mentioned in another post, I personally felt almost "euphoric" from the initial steroids. After about a full week, tapering down the dose of Prednisone, I had a fairly smooth landing - but still felt a bit of a "buzzy" sensation, like a bit "pumped up", and was very ready to get off the train. It is a very different train ride than being fatigued with constant trips to the bathroom.

Polly · Post by **Polly** » Mon Dec 18, 2006 8:27 pm

Good work, Beth.

You ARE the woman! I am so proud of you. You have already learned the most important "rule" here - that the best way to tackle MC is to take matters into your own hands and be assertive (obnoxious really) as hell. Way to go!!!!!

Love,

Polly

bobh · Post by **bobh** » Mon Dec 18, 2006 8:40 pm

Beth, the MD may not have mentioned this, hopefully the pharmacist will, but you are supposed to take the Pred "Early in the day, with food".

When I did that protocol, I had an afternoon Dr. appointment, then went right to the pharmacy. I was really excited, hoping to take the pills soon as I got them, but then learned that it would have kept me awake if I took them in the late afternoon.

If you are getting 10mg Prednisone, you would take 6 of them, all at once in the morning, with something on your stomach (they never bothered my stomach).

My MD had me "staggering" the Entocort throughout the day, but others here were told to take all of theirs together, in the morning. After 3 months, I have shifted to taking 2 Entocort every morning so I don't forget the 2nd one. If I am aware of any hint of inflammatory condition starting up, I may take a 3rd one at the end of the day (rarely). This has maintained a remission for me.

Beth · Post by **Beth** » Mon Dec 18, 2006 9:26 pm

Thank you, Dr. Bob. I definitely appreciate your (kind) advice!

Post by **tex** » Mon Dec 18, 2006 9:51 pm

Beth,

Wow! I can't believe you convinced her to do that, considering her mood, and her attitude. You definitely have some outstanding powers of persuasion. You could probably sell ice to an Eskimo. Good work!

I'm anxious to see how long it takes you to achieve remission, after you start the treatment.

Wayne

harvest_table · Post by **harvest_table** » Tue Dec 19, 2006 12:45 am

Beth wrote: I pray to god this will work!

I do too. Just remember long term diet will be your saving grace and the meds will give you a running start towards that. Ironic as it might seem, you have a good plan.

Love,
Joanna

MaggieRedwings · Post by **MaggieRedwings** » Tue Dec 19, 2006 6:39 am

Morning Beth,

I am just amazed at what we go through with the medical professionals and that they just don't understand the disease. I am proud of you that you stuck to your guns for the Rx and am really surprised she just called it in. CHANGE DOCS. Let this be your NY resolution.

Love, Maggie

artteacher · Post by **artteacher** » Wed Dec 20, 2006 6:11 am

Dear Beth,

Right on! You rock.

Marsha