[sandy56]

Hi all;
Just got a new diagnosis of MG based on tensilon test. CT of chest and repetative nerve conduction study negative. Antibody studies not back yet. I have been started on mestinon 60 Mg 4 ×day and prednisone 10 Mg 2×day. Just wondering about side effects that others have gotten; esp those that made you decide to go off it. I have follow-up appointment in 2 weeks.

Sandy

[pingpongman]

That low dose of Prednisone should be OK. I only had troubles when I was on high doses (60-80mg). He may later put you on Imuran or Cellcept as they are long term drugs used for MG, depending on how you do on just Mestinon.
Mike

[4-eyes]

Twice a day dosing is very unusual and generally not done. Otherwise, it is a low dose, and hope it works well!

[huntress]

That's a really low dose, I started at 60 Mg prednisone was okay for the first week then bam side effects hit...shakiness,depression,mood swings,nervousness...a few more
.Just be warned this is a mean medication in all ways. Even low doses.

[4-eyes]

I do really low doses (right now 7.5 every other day) and find that works for me. I will add that I use other meds, plus have had immunoablative chemo to "reset" my immune system. However, even before the chemo, I rarely used over 20 mg per day, and almost always have done every other day dosing, which greatly reduces any side effects.

I'm a pred lover, as it has saved my life more than once. I hope you have great success as well.

[cait24]

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

[sandy56]

Originally Posted by cait24

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

I go back to follow up with my neuromuscular doc in 2 weeks. I plan to ask him what the long term plan is. He should have my antibody tests back by then

[AnnieB3]

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

[sandy56]

Originally Posted by cait24

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

Thanks kathie
I spoke to my brother(pharmacist) and he said that short term low dose pred is fine and could be helpful. I should only stay on for a month. He said to tell him at my follow up that I don't want to do long term steroid therapy and he should have something else to offer me. The long term side effects are too harmful to consider unlessI am in a life or death situation.

[Mastas]

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.