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Old 04-30-2018, 04:02 PM #1
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Default New Member; help with statins.

Greetings. I am a 67-year-old male who was diagnosed with MG 26 months ago. My disease is somewhat under control, after 2 very bad years, though I'm still plagued with occasional breathing problems, and days of complete fatigue. I take mestinon, cellcept, and am currently on 15 mg. of prednisone daily. I was once on IVIG but I had no success with it so am on it no longer. I have a wonderful neurologist, who is a neuromuscular specialist. His office is 5 minutes from my front door. I have lurked around this community for months and so impressed with so many folks on here. I would like to ask you to tell me why I shouldn't be on statins, as I am. I don't want to leave any stone unturned in battling this wretched disease. Thank you in advance for your help.
Bill
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Old 04-30-2018, 04:21 PM #2
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1. Do you have any heart /heart attack or related issues?

Some past threads on statins-
Dr. Hyman, MD's take on statins today:
Statins
and

Vitamins, Nutrients, Herbs and Supplements forum -
For discussion about vitamins, vitamin deficiency, herbal remedies and other supplements.
https://www.neurotalk.org/forum49/
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Old 04-30-2018, 05:26 PM #3
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We are very close in this crazy disease. Most meds have not helped me including IVIG. I am getting ready to try Solaris. My neuro-muscular Dr told me years ago NOT to take statins. Well I had 2 stents put in my heart 2 months ago and first thing they did was put me on statins (with neuro approval). Well needless to say I went down hill fast. After a discussion with my neuro he agreed to take me off. Reduced 1/2 for 8 days then stop. I am doing better now. Heart Drs will have to come up with something besides statins.

I suggest you see a skin Dr once a year. Cellcept, Imuran and prednosone cause cancer. Mine removed one on my head and had to do 3 cuts which put me in hosp for 8 days. My body can not accept invasion. I have had about 15 skin cancers removed. I'm 77 but started at 67 like you with this disease.

Beware of antibotics too. You need to give your Drs a list of drugs you can't take and carry one in your wallet. Believe it or not Hospitals are the worst place for you. I have 3 near me and none of them understand MG. You need someone to go in with you to your appts. and understand MG. My wife goes with me everywhere and is like having a live in nurse.

I'm sure you now know we are all different but it helps to read and learn as much as you can about this disease.
Prayers
Mike
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Old 04-30-2018, 06:36 PM #4
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Hi, Bill. Welcome aboard!

What is the reason a doctor brought up a statin? Do you have high cholesterol or just slightly above normal cholesterol? Slight changes in diet and a bit of exercise can help the latter.

I suggest reading anything and everything Mrs. D has posted about the status drugs. There's one that can cause a "wild type neuron" in the body, with the associated bodily damage.

Look up beets or red yeast rice. Both are supposed to help with hypertension (if you have that).

Don't ever assume that MG is causing all of your symptoms. Fatigue can be from anemia, sleep apnea, a low B12, and lots of other causes. Many people over the age of 50 have a B12 deficiency and don't even know it.

Have you had other basic testing done, such as Vitamin D and B12, TSH, CBC, and metabolic panel (to look at kidney and liver function due to the drugs you're on)?

Have you had a cardiac consult? Pulmonology consult? If not, I would highly suggest both. If you can find a good pulmy who is also a sleep specialist, that is very helpful. Even if MGers don't have apnea, a BiPAP or APAP (alternating pressure) can be very helpful to help us breathe better while sleeping. Muscles become weaker while sleeping for everyone. For MGers, that can be more problematic. Some MGers have their O2 go too low while sleeping, which is a great stressor on the heart and brain.

Do you have good omegas in your diet? You know, fish, flax, etc. Even walnuts are good for that. Steroids reduce the gel coating of the stomach, and reduce good prostaglandins in the body. So adding good ones is a good idea. Also taking a good calcium supplement with vitamin D is smart, due to Pred's effect on bones.

My advice? Know your disease, know what could make it worse (and better), look out for any new symptoms, and have great doctors. But even great doctors don't know everything. Be your best patient advocate in any situation—or have someone like Mike has; a great wife who is his best patient advocate!

MG does suck. Even on medications, MG has a tendency to still be there to a degree. So manage activity with rest. The worse MG becomes, the longer it takes to recover. Instead of a roller coaster, keep MG on an even keel!

Anything else you want to know or share? Yes, this is a great bunch of people here, even though it's sometimes quiet.

Annie
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Old 04-30-2018, 09:21 PM #5
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If you are looking for alternate ways to treat high cholesterol (if that is an issue for you), you might ask your doctors about trying high-dose niacin. When statins did not work for me, this is one of the things we tried in an attempt to treat my high cholesterol years ago, under doctor's recommendation and supervision. You'll need to check with them to see if it is also safe with myasthenia gravis, but it can be an alternative way to lower cholesterol. It does work for some people.

Sending lots of good wishes your way,
Erin
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Old 05-01-2018, 02:19 PM #6
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Thanks to all of you for the excellent and very helpful responses. There is still so much for me to learn. Let me respond to some of your points. I have no issues with hypertension, and no history of heart issues. My cholesterol is only slightly elevated without the statins, so that's a potential area for some dietary changes. I have seen a pulmonologist, who found my lungs clear and health. Thanks for the note on cancer issues. I have a nephew who is a local derm doc and he is happy to check me out whenever I want. I'll be seeing him soon. Some of my other complicating factors are diabetes (well-controlled) depression, Tourette's. The ocular part of my MG is complicated, with double-vision to the extent that I'm probably going to need strabismus surgery in the not-too-distant future. From what y'all are saying, it sounds as though I need to get in to see a cardiologist.

Any more info you can give me is a blessing. I appreciate you all.

Bill
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Old 05-01-2018, 05:33 PM #7
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Bill, I would definitely have your B12 checked right away. I know that GABA has been thought to help that condition, but B12 can be supportive as well. There were even a couple of studies I saw years ago that implicated the strep bacteria in the illness. Some people have a high ASO or strep titer.

Also, B12 is necessary in the metabolic pathway that prompts acetylcholine (ACh) release.

You don't know Mrs. D, but she was a professional in the medical field (retired) and her sources are impeccable. If it were me, I'd get a desk cycle or some such thing and do a bit of exercising with a bit of diet mod, instead of nasty drugs.

Did you know that steroids can cause depression? So can a higher acetylcholine level. Low AChR, we are weaker. Too high, we're depressed! Too much fun!

Be careful about doing surgery. That might help. But the drugs alone could tank MG. And the muscles will become stressed and will still be weak. There's a lot to consider with a surgery such as that. Your vision could become worse. Whatever you do, don't do Botox (that can tank MGers as well, given that Botulinum toxin can cause MG).

Diabetes is an Afib risk. So is sleep apnea. Sleep apnea is also a cardiac risk. So, yeah, find a very good cardiologist!

Many drugs can make MG worse. Go to Home to learn more.

When you saw the pulmonologist, did they do the MIP (maximum inspiratory pressure) and MEP (maximum expiratory pressure) tests? Your lungs might be clear and healthy, but the chest wall muscles are what pulmonologists need to track. Know what your normal numbers are can help figure out if MG is tanking. For example, my normal MIP is about -84 (MIP is shown in a negative, MEP in a positive). Right before my MG crisis, my MIP kept declining upon each try. In the hospital, my average MIP was -24. When that reaches the mid to low -20s, that's the time intubation or a BiPAP is used—patients might stop breathing! Neurologists and pulmonologists work together in a hospital setting to help MG patients. Neither of them is qualified to do the other's job! Other tests pulmonologists can do if MGers are becoming worse: O2 saturation (after walking for a bit), arterial blood gases, and overnight oximetry.

MG does have a high learning curve, such as knowing that heat can make us far worse. MG isn't a fun disease, but I try to ignore it and live the best life I can!

Annie

Last edited by AnnieB3; 05-01-2018 at 06:49 PM.
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