NeuroTalk Support Groups - just started prednisone -any advice??

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- - just started prednisone -any advice?? (https://www.neurotalk.org/myasthenia-gravis/188111-started-prednisone-advice.html)

Quote:

Originally Posted by Mastas (Post 982023)

Hi....I am "new too". I was diagnosed a few months ago. Dr. Put me on prednisone and my side effects were really bad. At 40, I went two days without sleeping. He lowered me to 30 but I still felt awful. I am now in the process of getting off prednisone and on cellcept. The process will take six weeks. This is week two and I am typing in the middle of the night bec I can't sleep :(. I guess everyone is different, but I can not tolerate it. I have a friend with RA and it works great for her. I have just decided it is going to be a trial and error thing..ln time, they will figure out what meds work best. I am in central FL too (Orlando). I really like my dr. He is also sending me to St Pete to get some more info from a dr there that seems to treat more MG patients.

After I wrote this...i went back and read some of your other posts. Dr. Weiss is the dr. I am seeing in St. Pete. My dr in Orlando thinks he is the best in FL. He was going to send me to Mayo or Shands and he said he checked with some people and he decided to send me to Weiss.

Quote:

Originally Posted by Mastas (Post 982023)

Thanks Mastas
I live in Brooksville and just got diagnosed by Dr FRANKLIN (associate of Dr Wiess) in St Pete. So far I am happy with him. I just started having insomnia last night. I plan to call the office nurse tomorrow and ask for advice. I am also having day sweats and dizziness. I found that my mestinon did not last more than few hours today. Good luck with your treatment

Quote:

Originally Posted by AnnieB3 (Post 981661)

Sandy, Ditto on how Pred can be on the body.

Doctors often don't "think" about that fact. For example, is the plan a short-term or long-term one? It is easier to taper from Pred if it's done on a short-term basis and is on a fairly quick taper. Many doctors do the every other day Pred dosing to make sure adrenals don't completely tank.

Also, in a situation like yours where you were in the hospital, they often start with a "loading dose" of IV Solu-Medrol first and then go to tablets.

Since Pred is so hard to get off of, it's important to decide if it's a short-term fix or a long-term plan. And they often go right to Pred after Mestinon for two reasons. One, it's part of the "alogrithm" for treating MG. Two, it's cheaper than the other drugs like Imuran or IVIG.

I've known very many people who had to be on Pred. The side effects can be horrid. Instead of only MG, they now have Pred-induced diabetes, bone fractures (pins in hands), infections that don't heal and so many other lovely side effects. Many people have a tendency to think that, "Oh, that won't happen to me." The fact is that Pred is a very tough drug. It can also cause cancer, so if you have cancer in your family, that is a very real concern.

There are books out there on living well with Pred. Again, you might crave sodium, due to how it affects the adrenals. But if you have added salt, you might puff up and get high blood pressure.

No, you don't want MG tanking either. But you have to be aware of all of the possibilities because it's YOUR body and not even a doctor has the right to determine how a drug will affect it.

Good luck with your choices. They aren't always easy ones to make.

Annie

Thanks Annie
Somehow I missed your post yesterday. I do plan to call Dr Franklin's nurse about the insomnia I am starting to get. I also am having day sweats and dizziness. I also found I was weaker and my mestinon only lasted a few hours after poor sleep. There really is a learning curve with this disease.

I had insomnia for the first month on pregnisone and then it slowly began to subside. My face gets flushed but otherwise, I am not bothered too much.

My mestinon only last about 3 hours, after which I get the sweats and lighheadness. I think it is the return of the muscle weakness that makes me feel this way. I got this before pregnisone and I have not noticed it getting any worse. Before mestinon, I got this feeling all the time and the sweating was so profuse, I felt like I was going to pass out. Now I only get it when the mestinon starts wearing off.

After 4 weeks on high dose pregnisone, the neuro is starting to wean me off. I am to reduce my dose by 5 mg a day every 2 weeks. It will take me about 5 months to be weaned off pregnisone.

kathie

Quote:

Originally Posted by cait24 (Post 981564)

Most people do not tolerate pregnisone very well. I am on 40 mg a day and I think I am the exception. It has made my symptoms more stable. I have not gained a pound of water. My mood is better, I laugh and sing now which I do not think I have done in 2 years. I have more energy but I do not have any more strength. It may have been so beneficial to me because I have more than 1 autoimmune disease, so it improved several of them. I have MG, Hashimotos hypothyroiditis, an intestinal component of one of my auto immune disease and perhaps hemolytic or pernicious anemia (high RDW).

So hope for the best and ask your doctor if pregnisone is a short term or long term treatment for you. I would be more concerned if he expects you to stay on this drug for more than 6 months.

good luck
kathie

Called and spoke to the nurse about my insomnia and the doc had me drop my pred dose from 10 Mg twice a day to 10 Mg in the morning only. I sure hope that it starts helping soon. I think lack of sleep is making my fatigue and dyplopia worse. My mestinon only seems to be lasting about 21/2 to 3 hours as well. I hope to wean off completely soon.

Sandy, Mestinon kicks in after about 20 - 30 minutes. It lasts for only about two hours after that. ;) That's how the drug is.

There are two things you and your neuro can discuss: Raising the dose amount/mg. and increasing the dose frequency. More is not always better with Mestinon (meaning dose amount/mg.).

If you get too much acetylcholine in your body by taking too much Mestinon, you can have a cholinergic crisis.

If you don't get enough acetylcholine, it's called a myasthenic crisis.

Both make you weaker but the cause is different.

When you said "wean off completely soon," you meant the Pred, right? I was on Pred for a month after my MG crisis. It worked more quickly on the facial muscles but it took longer for the other, "larger" muscle groups.

It should help having the Pred only in the morning. I hope so.

Annie

Quote:

Originally Posted by AnnieB3 (Post 982574)

Annie
I spoke to the NP at my doctors office. She said he wanted me to only take 10 Mg in the morning. Also I could add an extra dose of mestinon or take it at 3 hours instead of 4 if needed. I have been sleeping a little better since the dosage drop. Have not needed to up mestinon dose so far