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High dose Prednisone - can't sleep!

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Old 01-11-2018, 08:57 PM   #11
Barbi-girl
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Dr. Kaminski exceeded my expectations! I am so fortunate to have seen him today and must surely have a guardian angel who made this happen. He is brilliant, humble, professional and really listened to my ďstoryĒ before reviewing medical records and test results. He said with 100% confidence that I have Myasthenia Gravis, no doubts whatsoever. He acknowledged that most Neurologists are very hesitant to declare a diagnosis simply because they donít see enough of,these rare disease patients. They tend to only be confident if the Patients are seropositive, which I am not. He told me he sees MG patients exclusively and 10%nof his patient population are seronegative.

He ordered a tapering if the prednisone to begin immediately. In addition, wants to do 6 months of IVIG infusions while giving the Cellcept time to kick in. He identified other contributing factors and consequences of the prednisone which need to be evaluated - will enlist my primary care to assist here. He talked with me at length about what to expect in terms of the long haul of this disease, how the first year is the hardest.

What he gave me was hope! I cannot say this enough to all MG (or,possible MG),patients...if you have a bad feeling about your current doctors or treatment, seek out the best. Donít let distance or money be an obstacle. This is your life and you only have one chance with it. I think Dr. Kaminski may have given me back mine.

Oh...he will be sending communications to my local Neurologists because he recognizes Iíll need someone local to execute his treatment recommendations. Ill see him again in 3 months and have a way to contact him, if needed.

Today, was a GOOD day.
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Old 01-12-2018, 08:53 AM   #12
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Whopee!!!!!!!!!!!!! I am so happy for you. Well written!!!
Best to you
Mike
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Old 01-12-2018, 10:35 AM   #13
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AWESOME!!! Well, not the MG part, but the fact that Dr. Kaminski's reputation is accurate. There are some truly great neuros/MG experts out there.

I did the same thing you did, and sought out an expert. MG is an odd disease, but, IMO, that's what makes the diagnosis so obvious. Besides LEMS and CMS, MG is the only disease where muscles are fatigable.

Just don't think you're superwoman now! Give all of this some time to sink in, and take it easy. There's a lot to learn about the disease. Managing MG is an art form.

If you haven't already, go to Home to learn more. Or PubMed or any other good sources.

I urge you to find a good pulmonologist as well. I have some pdfs of articles about a MG crisis, etc., if you want them.

Thank you, Dr. Kaminski!!!


Annie
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Old 01-12-2018, 10:44 PM   #14
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Annie...your recommendation about the Pulmonologist is right on. Dr. Kaminski told me the exact same thing. I did bring him my PFT study results for review. I was already seen by a Pulmonologist following my first respiratory issue and he prescribed Azithromax and a Ventolin inhaler. I told him that I didnít think MG patients could take this antibiotic but he said it was ok. Thatís when Dr.Kaminski told me to download the ďMyMGĒ app and reference it when doctors order new medications. He showed me his app! He bluntly told me to find another Pulmonologist! Howís that for looking out for the patient?

I have a question re: prednisone tapering. Iím on day #2 of tapering from 60mg to 50mg and feel ďoffĒ. Very tired and achy. What side effects can I expect on a prenisone taper?

My first IVIG infusions are next week, along with a chest CT to evaluate the Thymus. I want to be at my best for these infusions. Any advice here from the community would be welcome.
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Old 01-12-2018, 10:46 PM   #15
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Also, Iíd love to read your articles mentioned. Please, do send.

Barbi-girl
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Old 01-13-2018, 09:23 PM   #16
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I would caution that some MG patients can't handle Z-Pak. I personally do fine on that and Biaxin (Clarithromycin). Quinolones are relatively contraindicated as well. DO NOT take Ketek (Telithromycin)!!!

I've included some of the pdfs for you. Knowledge is key while managing MG. You can do a search on MG + myasthenic crisis and find more info. If you are ever unsure about a drug, search "drug name + acetylcholine" to see what effects the drug has on reducing or increasing acetylcholine (or no effect).

Some patients can't even handle a 10 mg. drop in Pred. Track all of your symptoms. If you begin to be extremely tired, have sweats, or feel just completely out of it (or weaker), then the drop is too fast. As I said, you can have an adrenal crisis if this goes too quickly. Even a great neuro is not an endocrinologist! Those adrenal glands need some time to catch up to withdrawal.

A pulmy can figure out what your normal MIP and MEP are, and other readings. That is key if you begin to have an exacerbation. If you say where you live (general area), someone might be able to recommend one. There's no time to mess around with a substandard pulmonologist during a crisis! And do not let anyone tell you, if you have hyperventilation during an arterial blood gas, that you are anxious!!! The hyperventilation would be from insufficient breathing. Yes, doctors have been known to do that.

My biggest advice would be to let this simmer for a while. AND don't push yourself. That's how people end up in a MG crisis. The worse someone is with MG, the longer it takes to recover. Maintaining some kind of stable normal instead of sending your body on a weakness roller coaster ride is the best plan!

We are very lucky to have doctors like Dr. Weiss (St. Pete, FL), Dr. Howard (UNC), and Dr. Kaminski to help us. There are more, but those are a few great ones.


Annie
Attached Files
File Type: pdf MGCrisisExtubation.pdf (73.1 KB, 5 views)
File Type: pdf MGRespiratoryComplications.pdf (95.6 KB, 6 views)
File Type: pdf NMDiseaseCausingAcuteRespFailure.pdf (120.9 KB, 29 views)
File Type: pdf NonInvasiveVentilation.pdf (76.9 KB, 5 views)
File Type: pdf Mestinon_Suspension_60mg-Tablet_60-180mg_PI_May01.pdf (38.7 KB, 4 views)
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Old 01-13-2018, 09:59 PM   #17
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Annie...Iím taking it very, very easy. I have to because Iím so weak and need to be well enough by Thursday and Friday to begin the IVIG infusions. I did feel chilled last night. My temperature was below normal - 96.8 with shivering. Not wanting to go to an ER with this rampant flu epidemic, I wrapped up in blankets, drank warm herbal tea and took a 3 hour nap. Felt much better afterwards.

I live in the Richmond, VA area, so any Pulmonologist recommendations would be appreciated. Iíll read over all of the documents, again, thank you.

Yes, Iím in shock and trying to come to terms with what this all will mean in terms of life changes. I was employed full time prior to my health deterioration but went out on short term disability in September. I foolishly thought a six week break with rest would get me on my feet so that I could return to work! From what Dr. Kaminski told me, this upcoming year will be very difficult and Iím wondering if Iíll be able to perform my high stress job again. Now, Iím faced with transitioning to long term disability in March and donít have the energy to deal with it. Itís not an easy process. How long are most people out before treatments get them to a place where they can resume their lives, if ever? So many questions, I know.
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Old 01-13-2018, 11:46 PM   #18
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Naps are good. I take one every day. Best advice I can give you is listen to your brain. Don't push it, if you think you are tired well you are. Avoid heat also. I know it's winter but just store this away. My IVIG treatments go very nicely however some people have trouble. IVIG is just a slow drip IV bag. Mine take about 3 hours. I go to a infusion center. They provide snacks and lunch if you are there during lunch time. They also provide TV, movies ect. Be picky about your treatment. Don't accept poor conditions, our lives are tough enough.

One thing that bothers me as much as heat is stress. Holidays are really tough. My wife is a angel she knows more about MG than I do. She goes in to all my Dr visits and I suggest you find someone to go with you.
hang in there
Mike
PS: If you don't like a doctor find another. Some will actually abuse you. You will eventually find a Dr you trust
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Old 01-15-2018, 08:22 PM   #19
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I just wanted to give you a few more tips. Your temp might have been down due to dehydration. With MG, drinking and eating can be a problem. Try to stay as hydrated as you can. I drink cold water and always have water by my bed, in case I wake up choking! That tends to happen when Mestinon wears off (I'm only on Mestinon, though, and take it every 3 hours, around the clock).

If you have trouble swallowing, bend your chin downward. Watch out for tough to chew, sharp, or sticky food (i.e., peanut butter).

If you do become overheated, for whatever reason, make sure you cool down right away. And take a nap, as Mike does. Managing MG is as important as drugs are. Alternating activities with rest is crucial, even on drugs.

Socializing is one of the toughest activities. The majority of muscle groups are used, and all at once. That creates a larger demand for acetylcholine than, for example, typing on a computer. Alternating use of muscle groups can help as well.

There are people who do resume a "normal" life. Some are lucky to be in remission. Did Kamniski talk about a thymectomy?

I have more conditions than MG, and can allegedly only be on Mestinon (long story having to do with not very nice neuros). I am on SSDI. If it looks as though you may need that, apply early. That process can take up to 2-1/2 years! Many people are turned down the first or second time they apply.

There's no way to tell how your MG will progress. Remain hopeful about the drugs helping you! As I said, many people do still work with MG.

Green tea, btw, does the opposite of Mestinon. Just be careful about anything you drink/eat or any supplements or herbs taken. Caffeine, for example, does the same thing (to varying degrees) as Mestinon. Too much acetylcholine can make someone worse as well. That can lead to a cholinergic crisis (too much acetylcholine), the opposite of a myasthenic crisis (not enough acetylcholine). When your drugs do kick in, you may need to back off on Mestinon.

Not an easy disease, is it?!!

Whether or not you tell your employer about this is up to you. I have found that it helps to have some simple written explanation for family members or friends when you tell them.

I like the example of muscle gas, which is what I call acetylcholine. A car won't run without gas, and our muscles won't run without acetylcholine (ACh). Normal people have enough muscle gas for their muscles to work well. MGers have only fragments of that getting to the muscles, due to the antibodies blocking the muscle receptors. Without enough gas, our muscles will sputter or not go anymore—which can be life-threatening. The more we do, the worse we become.

I can tell you that I've had MG my entire life (only diagnosed at age 41). Has that been difficult at times? Sure. Now that I'm 59, I am concerned about what my future will hold. But I still am grateful every day that I'm doing well enough to write, play with my dog, Sami, and enjoy each day.

Attitude really helps while having a disease.

I hope the IVIG goes well. Many people premeditate with Benadryl and acetaminophen (and afterward for a couple days). If you haven't taken Benadryl before, be cautious. That drug does the opposite of Mestinon. Liquid Benadryl is great, because you can titrate the amount. Make sure they do the infusion slowly. Drink plenty of water for several days. Some people get a headache. Some do get aseptic meningitis. But don't freak out about that!

Unfortunately, Mike is right. Some doctors are real brutes. Some nurses can be, too. But we don't have to be! You can always ask for another nurse or find another doctor. There are mostly good ones out there.

Good luck this week!

Annie
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Old 03-13-2018, 07:38 AM   #20
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Wanted to give you all an update. Everything said and suggested in this thread has come true for me.

Iíve started on monthly IVIG treatments and the slow prednisone taper (current dose is 40mg). In addition, I completed a sleep study last night and the Pulmonologist said the results were moderate to severe for a Myasthenia patient. I stopped breathing, on average about 14 times in an hour. During REM, breathing stopped 57 times. My O2 saturation got down to 77% and this was considered unacceptable. Next step will be another study to fit me with a BiPAP as soon as the Pulmonologist gets approval from my insurance to proceed.

This is all taking so long and Iím not feeling very well yet, but am encouraged by all of you kind people sharing advice and information. Dr. Kaminski is fantastic, so I must also give him credit, along with my local Neuro-Opthamologist who is executing orders and treatments. For anyone looking for a top Neurologist in the DC, VA, MD area, see him!
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