Hi guys. I'm new to the forum. My name is Krysse and I have Lupus. I was diagnosed at 18, I'm 27 now.

Though I'm not here to discuss Lupus, I am here to discuss Myasthenia Gravis, which my father-in-law has. I am very close to my in-laws.

Background: He has had it for over a year. He has had that gland removed and it didn't help ... when the gland was removed, they paralyzed one of his vocal cords and now his voice is a raspy whisper. We are trying to get him into UCLA to get his voice fixed, but cutting through all the red tape is a nightmare. He had another surgery shortly after the removal of the gland when we determined that due to his MG he is extremely sensitive to anesthesia. The second surgery landed him in the ICU and on a breathing tube for several days. My father-in-law is in his 50s. He was diagnosed after experienced blurred vision. He takes many supplements and has been even before he got MG.

Question: He returned from his neurologist today who put him on a starting and continuous dose of Prednisone 40 mg/day because of his eyelids. As a Lupus patient myself, I'm familiar with this drug and the side effects as I've been on and off of it for almost 10 years ... never 40 mg though. I find this dosage to be very high and am extremely concerned as I know first hand how awful the side effects are. My question is, is this a normal dosage for MG patients? Have any of you been on this dosage and for how long? Did it help?

Also, I don't know the name of his MG drug, but he was taking it 4x/day and has been able to cut back to 2x/day at half a pill. As I mentioned earlier, he takes a lot of supplements. What supplements are particularly bad for a MG patient?

Any feedback would be much appreciated! I am going to browse through other threads in the meantime and apologize if I'm posting under the wrong topic.

Thanks in advance.

Krysse, I hope others will answer your questions in more detail, but I just wanted to say that I have read here more than once that Prednisone can make MG symptoms worse at first. My neurologist told me once that for this reason, it has to either be started when the patient is admitted to the hospital, or else gradually. So if he is going to start at home on a high dose, at the very least someone should watch him carefully and be alerted to the danger of worsening symptoms. Sorry I don't have more details--I just figured I'd better say that right away, if he just got the prescription.

Abby

I have been on prednisone off and on for about 7 years. My highest was 60 mg/day for about 3 months - then gradually weaned down to about 10/day. I can't seem to get below 10 without running into major breathing problems.

Is he on any other immunesuppresants? The med he was taking 4xday was probably mestinon and it's great he has been able to cut back on it. Did he cut back before or after starting the predisone.

Anesthesia can be a real problem for individuals with mg. I've been intubated after surgery also and had a whispery voice for about 4-5 months. It finally cleared up though. He needs to make sure his anesthesiologist know he has mg so they can use the correct meds for him.

Good luck and this is always a good place to get info from those of us who have been there!

Juanita

I just told him what both of you said and he said as far the the mestinon goes, that's the drug he does take, but it has a different name. He was taking 60mg/day and then was able to go down to 30mg/day. When he started having issues with his eyes and muscles, he increased his dose up to 90mg/day. (His neurologist gave him the green light a few months ago to adjust his medicine depending on how he felt). When he saw the neurologist today, he put him back on the 60mg/day (mestinon) along with the prescription of Prednisone.

I just think it's very strange that a doctor would allow a patient to adjust their own medicine and to also throw a patient on 40mg/day of Prednisone. Have any of your doctor's allowed you to adjust you mestinon medicine? I'm not sure if that's normal or not.

Thank you for the advice about monitoring him. I just told him that my husband and I would be monitoring him and he wasn't allowed to drive for a while until we know how the Prednisone is going to effect him. I did tell him the side effect I had from it (for my Lupus) at 20mg/day, so he knows a little of what to expect. I have the paperwork from the pharmacist with the side effects, so if any of the "uncommon" ones occur we will be going to the Dr. right away.

One of his vocal cords was paralyzed, which caused him to have that whisper/raspy voice. That surgery was over 6 months ago, that's why we're trying to see a voice Dr. at UCLA.

He is also allergic to shell fish and is lactose intolerant ... that's my worry with the supplements he takes. As far as supplements are concerned, are there any an MG patient should be taking and/or should avoid?

Thanks again for your responses!

Krysse, it is pretty common for neurologists to tell their patients to adjust the Mestinon (the generic name is pyridostigmine) themselves, within certain parameters. Mestinon is considered a relatively safe drug, and 30mg (half a pill) two or three times a day is a low dose. Here's what's important to know about Mestinon: first of all, too much can make your symptoms worse. And second, it has a really short half-life. After four to six hours, it's pretty much out of your system. So your father-in-law should pay attention and see how it makes him feel. If he feels strong for the first two or three hours, but weak again for the next three hours, the thing to do would be to increase the frequency, and not the dose.

One sign of too much Mestinon is muscle twitches.

I don't know much about supplements except that MG patients need to be careful with magnesium. Also, there's something out there called huperzine which is marketed to MG patients. It works just like Mestinon (by blocking the enzyme that breaks down the chemical that the nerves use to communicate with the muscles). Taking Mestinon and huperzine together would be like taking a bigger dose of Mestinon (the patient would have to be careful he wasn't getting too much, which would make him weaker).

Abby

Hi Krysse,
I adjust my mestinon depending on the severity of the symptoms. My MG comes and goes as it pleases so when the symptoms increase I take a little more of the mestinon but I take a fairly low dose to begin with. It should be noted that if you take too much mestinon it will mimic the symptoms of the MG so you must be careful not to take more than needed.
I am also on Prednisone and trying my best to get the DR. to get me off it. I started at 60mg per day but I was also a breath away from being hospitalized because of the MG. I always refused to be on it but really had no choice. It has caused my blood pressure to soar and as a result I am now on blood pressure meds. Never had high blood pressure in my life until I was put on the prednisone. Most people can handle the drug better than I with less side affects but if he can live without it I am sure he will be better off.
Don't know that taking either med with supplements is a problem.
Al

I also started on 60 ml of pred a day. My ptosis and double vision went away almost immediately. I an now down to 30 ml EOD and hoping to go down to 20 ml EOD soon.

Tony

Hi Krysse,
I am on 50mg prednisone daily. I started on 60 mg prednisone about 3 months ago. It has helped the muscle weakness in the legs and arms--not so much with the double vision. I did experience some increase in symptoms when I started the prednisone,but that has subsided.

Prednisone has a lot of nasty side effects, as others have mentioned, and you are probably already aware of b/c of your experience with it. I really limit the amount of salt I eat in foods, as well as sugar. So far, my blood pressure has been fine, I haven't gained any significant amount of weight, and my blood sugar is under control. I think I've been one of the lucky ones with dodging some of the side effects.

I can't really answer your questions about supplements. I'm also on cyclosporine for the MG and that drug interacts with so many others that I just try to stay away from supplements.

My neurologist has also told me to adjust my Mestinon dose depending on how I'm feeling; but I've been given an upper limit and told not to exceed that dose.

I hope your father-in-law sees some positive results from the prednisone.

And he sure does have a special daughter-in-law!
Cate

Wow, thank all of you for sharing your experiences with me. I'm very grateful.

So, today is day one of him being on Prednisone and he seems to be doing OK. He said he doesn't really feel any different. I remember my biggest side effect was feeling like I just got hit by a bus--every muscle in my body felt like it had been worked out for 10 hours a day. It was awful.

I'm glad to hear that it's normal for Doctors to tell their patients that they can adjust their medicine depending on how they feel as I thought that was kind of strange.

I do remember him telling me that magnesium was bad for him a few weeks ago ... then he changed up his supplement regime to decrease the amount of his magnesium intake.

I will keep you posted over the next few days on how he's doing. We just heard that he will be going to UCLA! His appointment is May 4th, so hopefully he will get his voice back.

Thanks again everyone!

Krysse, one thing about Mestinon - for just about everyone who takes it, it is vitally important to find out what DOSAGE a patient's body can tolerate first (if the dosage is too high, you feel like you've been run over by a train - it's pretty obvious).

Once the dosage is established, then the TIME INTERVAL can be determined.

While a patient never wants to take a higher dosage than their body can handle, many days they may find that they need to take the Mestinon earlier than normal.

Some neurologists understand this and others don't.

As far as the prednisone goes, I think it's normal to start off in the hospital with a higher dose, then level off after the patient goes home.

When I was in the hospital, they had me on 60 mg/day, and not only was I ready to cut a b****, but I was eating anything that wasn't nailed down!

Now I'm down to 10 mg/day, and things are much better.

You do need to lower Prednisone dosages under a doctor's supervision.