[Lily7]

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.

[AnnieB3]

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

[Lily7]

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.

[AnnieB3]

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

[Hopeless]

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.

[AnnieB3]

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

[kiwi33]

Hopeless, adding to the excellent Medscape link from AnnieB3, this one might help you as well; http://www.niddk.nih.gov/health-info...act-sheet.aspx.

[Hopeless]

Hi kiwi and AnnieB,

Thanks to you both for the great articles. Well, I definitely do NOT have adrenal insufficiency. I have the exact opposite of most things stated in the articles with the exception of the symptoms I stated here that I DO have. Symptoms such as profuse sweating, extreme fatigue/inability to stay awake, muscle pain.

But as we know, the same symptoms can be shared by numerous conditions.

I guess I should have included some basic background to prevent misleading you. I AM a diabetic and have a GREAT endocrinologist.

It appears the ONLY symptoms I DO have that are included in adrenal insufficiency are the ones mentioned above, the extreme fatigue, can't stay awake, muscle pain, and actually not profuse sweating, but more like night sweats with the thermostat set at 68 degrees or lower. I will break out in a sweat during the day time on some occasions, but more often at night.

I recently was informed that my hormones are way out of whack. Before I mislead you on that, I am in my latter 60's. I am thinking that may be the source of the night sweats even though I am LONG past menopause.

The other symptoms could be contributed to medications and other health conditions, like my cardiac issues and others.

I am VERY fortunate to have a great team of 8 physicians (7 specialists and 1 PCP) taking care of me, but none have given me a "definitive" answer for my extreme fatigue and inability to stay awake like the normal sleep pattern I had a decade ago. The responses are as vague as the symptoms. I do not think they have left any stone unturned but there has been no clear cut test result to pin point the cause.

Whenever I see "extreme fatigue", my antenna goes up in search of an answer to what is causing this in my life.

I am so grateful to you both for the information you provided and am sorry that I put you to the trouble.

Speaking of my endocrinologist,.... this guy is super smart and not just my opinion. Other docs have told me this as well, without knowing I was a patient of his and it was not a solicited statement. He is HIGHLY admired by his colleagues.

He does labs (BMP and a few others) every 3 months, and more comprehensive ones less frequently. My PCP tests everything under the sun once a year and some things during the year. It is a good thing our bodies make more blood and rather quickly otherwise I would be very depleted.

My endocrinologist got my lab results one time and as we were going over them, he began to ask me, (what I thought at the time), were some "strange" questions that he had never asked before and I have been seeing him for years.

He went on to tell me that one of my labs was very out of whack and it made NO sense. He said that the result was totally inconsistent with my health and the responses I gave him to the "strange" questions. He ordered the labs to be repeated as he KNEW they were invalid. The repeat lab results came back exactly as he expected,.... within normal ranges.

It is sort of like when I test my blood sugar level and it is NOT what I expect. I wash my hands AGAIN, make sure I wait until the alcohol wipe has dried, and repeat the test. Sure enough, I was correct not to accept what I felt was an erroneous reading. But, just to be really sure, I test a 3rd time, within a minute or two for solid confirmation.

I am amazed at the amount of knowledge of some of the NT members. Some members have extensive knowledge from personal experience and about the conditions from which they suffer. Some other members are obviously trained in a medical profession or related field of study and are so giving of themselves to share their knowledge with the members.

Once again, I just want to thank you for being so helpful and thoughtful. (And for sharing your wisdom.)

[kiwi33]

I am glad that I managed to help a bit.

It sounds to me that your endocrinologist is right on the ball - excellent clinical judgement and excellent inter-personal skills is a great combination .

[AnnieB3]

Hopeless, Have you been tested for Celiac Disease? Have you had your B12 and D tested? Have you ever had a brain MRI (pituitary)? How is your thyroid?

Sorry, Lily, now I'm off topic.

I have great doctors, too. That doesn't mean they're not infallible. Many doctors don't think to test for the simple tests when a patient has fatigue. They often think that all women are tired and that it's somehow normal.

When I told my doctor back in 1997-99 that I was so tired that I felt sick, she didn't test for my B12 until I put it in writing. I was severely deficient. And she is the best internist I've ever known.

Keep logging your symptoms. Clues are everywhere!

What lab was out of whack? Changing labs don't mean that the first one was wrong. For example, antibody levels change and don't necessarily reflect disease severity.

Do you eat a snack in the evening to help with blood sugar issues? You know, like a half a slice of whole grain bread with almond or peanut butter?

I hope your docs can figure out what is going on.

Annie