I saw my MG neurologist and am starting cellcept and I am reducing my prednisone dose. 😄
Here is where I have a question ---

Instead of taking 40 mg of prednisone each day, my neurologist said to make 60 mg on alternate days. OK I thought, I will try this.

My other health issues, colitis and diabetes went crazy nuts. I indefinitely felt better on the prednisone days and worse on the non prednisone days.

I saw my General doctor, who manages my diabetes and colitis and he told me to stop the alternating day prednisone and just take 30 mg each day. He said the the swing of ON and OFF was too harsh for me.

I have done this and I feel better but I wonder what my Neuro is going to say. I don't understand the theory behind alternating days, especially at high does.

I welcome your thoughts and experiences.

I'm not even sure the "correct" theory is correct.

If a patient is not on Pred yet, a doctor can put them on it every other day. Why? In an attempt to keep the adrenal glands working.

When someone is on Pred every day, the adrenal glands stop working. Why? Because Pred is doing their job for them.

So that first scenario can work, but what often happens—especially if a patient is started at a high dose (by high, I mean anything above 5 mg.)—is that a patient begins to see a dip in symptoms on the off day and ends up needing it every day anyway.

The second scenario, when doctors don't think, is when a patient has been on Pred for a while. At that point, the adrenals are not working. When they do this, frankly incredibly stupid, alternating days routine, they are putting a patient's very life at risk.

Adrenal insufficiency, no matter the cause (i.e., primary from Addison's disease or secondary from Pred), can be life-threatening. A patient can have symptoms such as profuse sweating, extreme fatigue/inability to stay awake, muscle pain, confusion, etc. Those are warning signs, not "side effects!"

That's why coming off of Pred is so hard.

Steroids are useful, but the side effects and inability to withdraw are overwhelming to one's body and life.

I don't honestly believe that the every other day while beginning Pred works. It definitely doesn't work, and is dangerous, after a patient has been on Pred for a while. It doesn't take that long for a body to get used to a drug. Our bodies adapt fairly quickly.

Even a drop from 40 to 30 can have ill effects. Doctors do NOT think about adrenal insufficiency!! Why I don't know. You might be able to handle a 10 mg. drop. But you might not.

Pay close attention to any new symptoms! A drop in dosing might require 2 mg. at a time. Or less.

I hope you can get through this. And I have to wonder—did you have diabetes before you were given Pred? If so, then the prescribing doctor should be given a lecture on idiotic doctoring.

Annie

Thanks for the insight. I really appreciate it.

I am sticking with my daily prednisone and disregarding the alternating day thing, it's just too awful.

In answer to your question, the diabetes did not start until after I was on the prednisone. Or at least we did not become aware of it. No one ever tested me for it with all the testing that I had before diagnosis. When my GP doc did do an a1c test after being on prednisone for 8 weeks (from Neuro doc)! my number was 7.4.

Then it might be Pred-induced diabetes, which could go away after withdrawing from it. Have you seen an endocrinologist? If not, I highly recommend doing so!

Don't let a neurologist do the job of an endocrinologist. Or a pulmonologist. Sometimes we need several specialists to manage our care well. That sucks, but so does not receiving the BEST possible care.

I really hope you can get off of the Pred. It can do so much harm to the body!

Annie

Dear Lily7 and AnnieB3,

I have really enjoyed reading your posts on this thread. VERY interesting.

My next comment is really "out of place" since it is unrelated to the thread and the ONLY commonality is the prednisone.

Just moments ago, I returned from the pharmacy, picking up my script called in by my doc, for prednisone. This is very short term, for an acute issue. I take 4 pills today, 3 tomorrow, 2 the next day, and the final remaining 1, the following day. Yes, a total of 10 pills in all. This is not my first time needing prednisone for an acute issue, but it is also not a common occurrence in my life. I think I have taken a similar course of pred on just 3 or 4 occasions. It does elevate my blood sugar levels while taking it and have been told to expect the rise for the time I am taking the pred.

I found it very interesting to read that long term use of pred can induce diabetes.

That also has nothing to do with MY situation but I found it interesting.

I do have a question for AnnieB3 regarding adrenal insufficiency. The symptoms you list describe me to a T with the exception of confusion. What are some of the causes of adrenal insufficiency other than Addison's and long term prednisone use? Are there varying degrees of insufficiency?

Well, I did not mean to make this about me. I just wanted to thank both of you for the posts and the thread. It was very interesting. Thanks again.

Hey, Hopeless. I think your best bet is to find a very good endocrinologist and let them know your symptoms. They have tests they can do to determine if any levels are off, such as ACTH.

I like Medscape, for thorough descriptions of conditions.

http://emedicine.medscape.com/article/116467-clinical

Diet is so important, even while on Pred. There are books devoted to living well while taking it.

Yes, of course, adrenal insufficiency effects can vary and to different degrees.

You probably should talk to an endo about possibly being pre-diabetic. Dietary changes can help with that, too.

Since so many of us with an autoimmune disease have more than one, I think your questions are very appropriate to the conversation!

I hope you will find an endo to evaluate your symptoms.

Annie