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trying cerefolin


michiganjan
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I recently saw Dr. Grubb,

Among other things, he prescribed cerefolin. I started it this morning. Nothing to report pos or neg but I will let you all know what it does for me. It is supposed to help the brain function better, help one think better.

I also have prescriptions for Cymbalta and Mestinon. It will take me some time to try these. I want to take the cerefolin for at least a week and then try the Cymbalta first. Mestinon will have to wait for a couple of months most likely.

I also got a prescription for a stress test which I have tomorrow morning at 9. I really don't need to find out I have heart disease right now, but Dr. Grubb and Beverly both wanted me to get the test so I will. I am just glad I can get it over with tomorrow.

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My husband takes Cerefolin. He had some slight gastro problems for a few days at the start but no other side effects. He seems to think better - it wasn't an immediate influx of energy, just much less brain fog and noticeably more clarity.

Good Luck.

He is also doing well on Mestinon and that does seem to be giving him more stamina to get through a long work day. He has only been on that for a couple of weeks and he did have some twitching (while sleeping) and headaches in the beginning.

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Jan,

Please let us know how your stress test goes.

What strength/formulation of Mestinon are you on? (I have some that I'm hoping to start soon also - it's the XR version)

How long did you have to wait at Dr. Grubb's office? (I have my first appointment with him in May)

Hope you have a good week,

Lisa

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Dear Lisa,

My appointment was at 1 p.m. We arrived a few minutes before 1 and waited 15 minutes to get put in a room, then had a nurse take my blood pressure, then saw Beverly, and then Dr. Grubb. Beverly talked to me about 1/2 hour and Dr. Grubb about 45 minutes.

Also I got lucky getting the appointment. I decided I wanted to see him two weeks ago, called and got an appointment for the next week. There was one open due to a cancellation.

As I was checking out, they made an appointment for me to come back in nine months.

Mestinon is 60mg. I am not taking it yet. May not start it for a couple of months if I decide to take the cymbalta first, as Beverly recommended.

Just took the cerefolin this morning first time. No problems so far. I want to do at least a week on the cerefolin before starting anything else. I also have to get a liver function test done before starting the cymbalta because when I took Wellbutrin in the past it raised my liver function above normal.

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List,

I reposted this information here so you would see it. Beverly at Dr. Grubb's office had my husband start with 1/2 of a 60mg tablet 2x/day and then 3 times per day, then switch to 1 tablet 2 times/day and potentially moving up to 3 60mg tablets a day. At that point, he could opt to switch to one of the Timespan extended release tablets which is 180mg. I know someone else on the forum just recently had a problem switching from the 60mg to the extended release and decided to stick with the 60mg tablets.

The following is from the Myasthenia Gravis website ( http://www.myasthenia.org/information/Mestinon.htm ) regarding Mestinon. It seems as though the Timespan, extended release form of the drug is for people who need to take it during the night or they wake up too weak in the morning. I read somewhere else that if you have any type of motility issues, you will most likely get an inconsistent dose of the medication when using the extended release form (of course, I can't find that statement now but I'll keep looking). The info below does say that the absorption can be erratic and the side effects more likely when using the Timespan version. We are planning to stick with the 60mg tablets.

Are all pyridostigmine or Mestinon? preparations equal?

No!

Regular pyridostigmine or Mestinon? comes in two forms: Mestinon? 60 mg. tablets and Mestinon Syrup? 60 mg./5 ml. The greatest effect usually occurs in 60 to 90 minutes and lasts for 3 to 4 hours.

Mestinon Timespan? is an extended release form of pyridostigmine that slowly releases its active ingredients over an approximately 12-hour period. When prescribed, Mestinon Timespan? is usually given as a bedtime dose so the patient does not need to awaken for every 3 to 4 hour dose of regular Mestinon?.

Mestinon Timespan? should never be substituted for regular Mestinon?.or generic pyridostigmine.

Mestinon Timespan? should never be crushed.

The possible adverse effects of Mestinon Timespan? are the same as those for regular Mestinon? or generic pyridostigmine , but are possibly more likely to occur.

The absorption and effect of Mestinon Timespan? are sometimes erratic. Some physicians and patients prefer to schedule nighttime doses of regular Mestinon? or generic pyridostigmine.

Regonol Solution for Injection? 5 mg./ml. is sometimes required when patients cannot take anything by mouth. The physician will prescribe 1/30th of the usual oral dose by IM injection or very slow IV administration.

No single fixed dose schedule will suit all patients with MG, whose medication requirements vary from time to time, day to day, and in response to stress or infection.

Different muscles respond differently to a given dose of Mestinon? or generic pyridostigmine. The physician will select a dose that produces the best response in the most vitally affected muscles.

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