Freaking nightmare working with GI's nurses and specialty pharmacy

A case of "too little too late", but write a formal letter in as much legalese as you can and XC every top-of-the-line supervisor/manager/doctor/insurance and send it certified. At the very least you'll have an iron-clad record just in case you have to pursue legal recourse.

I know we all have horror stories (although maybe not as severe as this). When I was having trouble with Walgreen's Alliance, I was lucky to have the manager place me on hold while he called my doctor. Of course, the doc was unavailable, but the manager assured me he would continue to call, and sure enough the problem was fixed.

When I switched GIs I made sure the new one had a dedicated insurance/pre-auth person that I insisted on meeting on my first visit.

To be fair, nurses in small shops don't often have the training to handle admin crapty stuff.

Keep us updated!

Best,

oh yay - it's fixed! I didn't realize earlier when I posted that I had just read "Page 1"... duh

Maybe it's time to look for a new GI?

My doctor actually wrote me back personally through the online portal last night, so that was nice. He said I could pre-dose with 25 mg Benadryl and 500-600 mg Tylenol next time if I want to.

I know we all dread the pred, but do not be too cavalier/reckless about tapering. There's no prize for the rabbit in this particular race, but rather it is always the turtle who gets the metal in this race.

I started remicade while on 20-mgs of pred. It was a full 9-weeks after starting remicade until I was off of the pred.

Your body isn't even at ideal therapeutic (healing) levels of remicade, until week 6 of remicade. If you are off of pred before then, it's just a crazy gamble IMHO. Anything less then 12mgs pred, and you're at less then your body naturally makes (equivalent of body's natural and cortisone production) so you're getting no extra benefit from taking the pred at all (just in a holding pattern).

Yeah your call of course, just seems like a warning sign I had to bring up.

If you're at 5mgs of pred, then your body would produce the equivalent of 7mgs of cortisol from the adrenal glands to balance out the 12-mgs your body has on average. Pred withdrawal is when the cortisol isn't produced at all or not at the needed rate. I do not think you are at risk of withdrawal. So, below 12-mgs of pred, you're just at normal levels of what your body would normally have. If that makes sense.

Being at 20 or 15mgs of pred has an effect, as pred/cortisol is an immunosuppressent and that's a higher level then your body normally has.

A lot to it all for sure. My former GI loved to quiz drug reps when attempting to sell him their products, on how their drugs actually worked within the body, and threw them out when they were clueless! There's a lot to it all.

Remicade blocks a protein created by the immune system that's used in the signaling of our immune attack. Muffle/silence that immune battle cry, inflammation is not created, and we feel better. One Remicade protein binds to one TNF-Alpha particle, making the pair inert and they are harmlessly passed out the body, avoiding inflammation in that one instance. However, it is important to have enough remicade proteins to get you by until the next infusion to sustain a response. During the 1st or 2nd loading dose (week 0 and week 2), it is common to have a response that lasts for days or for a week or so, and then you might relapse again until the next loading dose infusion. When you reach the 3rd infusion (week 6) you should be at therapeutic levels thereafter and sustain your response. Often they'll do a remicade concentration tests shortly thereafter (like at your first 8-week maintenance dose) to make sure you have enough medicine to sustain a response. Dosage/frequency is variable for those who have not enough.

Cortisol/prednisone is an interesting hormone. Immune suppressing, a mild pain reliever, regulates sleep and awake cycles, among other things. It's one of those fight-or-flight hormones, along with adrenaline, that enables you think fast, fight and or run away to live another day. Of course we hate it for the side effects, which are known (and relate back to the prior couple sentences).

Some reminders as you might be on pred for a few more weeks at least. Pred leeches calcium and potassium from your body. So, make sure to take a daily Vitamin D and Calcium supplement while on pred (or eat foods rich in those minerals) for bone strength, and do some light, weight bearing exercise to also encourage bone strength. I'd eat a banana a day for the potassium.

iPoop said...
Yeah your call of course, just seems like a warning sign I had to bring up.

If you're at 5mgs of pred, then your body would produce the equivalent of 7mgs of cortisol from the adrenal glands to balance out the 12-mgs your body has on average. Pred withdrawal is when the cortisol isn't produced at all or not at the needed rate. I do not think you are at risk of withdrawal. So, below 12-mgs of pred, you're just at normal levels of what your body would normally have. If that makes sense.

Being at 20 or 15mgs of pred has an effect, as pred/cortisol is an immunosuppressent and that's a higher level then your body normally has.

If you were right about this, why would anyone be put on just 5 or 10 mg of prednisone (such as transplant patients)? Can you show me a link to this info. because I can't find anything online that says this. Thanks. By the way, I went down to 10 mg 6 days ago and so far, so good; knock on wood.