High dose Prednisone - can't sleep!
 

I am new to the forum. MG symptoms began with double vision and ptosis in Jan 2017. Most testing for MG was negative except for the SFEMG (Positive for neuromuscular disorder). Started Mestinon, which initially helped. Generalized MG symptoms came on rapidly and I started 60mg/day Prednisone and Cellcept. I can't sleep! I feel wired but so weak and fatigued, I can't expend any energy to become tired enough to fall asleep at night. Help! What do others do to get more than a 2-4 nap during the day??

Welcome
I was hoping someone would answer. Anyway this was how I started out, just double vision. All antibody test were negative. My neuro-opto put me on a large dose of Prednisone which cleared me of double vision. They tested my antibodies a few months later and I was positive. This was all in 2007. They tapered me off prednisone. I now take 20mg a day. They tried Imuran but it reall made me sick so I then went on Cellcept. In between I had many doses of IVIG. There is so much they don't know about this disease. I am now fighting various cancers which they blame on the Cellcept. They are going to try something new in Jan.
As for your sleep problem I can't help you. I would guess when they start tapering your Prednison that will go away. I wish you the very best.
Mike

Thanks, Mike. I'm trying Melatonin. It works some nights. Not so well on others. Since I don't have to get up early to go to work anymore, I guess it doesn't matter. I am worried about not getting enough restorative sleep.

It's way too soon to even think about tapering down on the prednisone. I started Prednisonenand Cellcept in November. Quite frankly, neither have given me any relief and my MG symptoms have gotten worse. Hopefully, this just takes more time. How long were you on Cellcept before experiencing secondary cancers? What kind of cancer? I had read Cellcept was supposed to be so much safer then the alternative immunosuppression meds avaiable to us.

Cellcept takes 6-8 months to start working. Mestinon never did much for me. I still take it. Keep in mind these drugs affect each of us differently thus "snowflake disease".
I had to go to Cellcept because Imuran made me so sick.
I was on Cellcept about 5 years before the cancers started. I had lung and skin cancers. Lung cancer is gone. Just finished radiation for 5 skin cancers. I have had about 15 skin cancers. I had a squam on my head that was removed by cutting out. The hole was about the size of a silver dollar. It upset my MG so bad I was in Hosp for 8 days. My MG responds very bad to body invasion. Also keep in mind a lot of deadning drugs Drs like to use upsets MG. This includes dentist.
As for sleep. I have good nights and bad nights. Take a nap mid-day because I really tire out in about 3-4 hours.
Mike

Try taking the prednisone in the morning. I had trouble sleeping when I was diagnosed about 20 years ago and taking 100mg of prednisone. You will also feel worse before feeling better. FYI, I'm now on 3mg of prednisone, trying to come off it all. If the melatonin doesn't work try Lunesta. Jim

Hi, Barbi-girl! Welcome.

I posted this over on Ron's post.

That's a fairly high dose of steroids. I doubt that it's too soon to think about tapering Pred. Who is monitoring the steroids for you? You may need something like IVIG in the meantime, as Mike did. These days, MG experts try to use steroids only during an exacerbation. The long-term side effects and inability to withdraw from the drug make it a difficult drug at best. Sure, it can really help AIs, but I've known so many people who wish they'd never taken it.

Do you have a pulmonologist? They work in tandem with neuros in a hospital setting. They could at least assess the pulmonary portion of your MG to monitor your progress. Neuros can't do that!

Massaging muscles can also help. Why? That has the same effect as exercise without actually exercising. But doing that could make you weaker as well. Worth a try!

I hope you can find relief too!

Annie

Annie - great advice. I wish I’d never started taking prednisone! It’s been 9 weeks and I’ve gone rapidly downhill in terms of MG symptoms. I can no longer walk, have had episodes of limb paralysis, speech slurring, unable to,swallow,shortness of breath, etc.. My Neuro Opthamologist started me on these meds. After 3 ER visits, I was finally seen by a nearby university hospital Pulmonololgist and a Neuromuscular Neurologist. The new Neurologist wants to taper me off the prednisone as soon as my insurance company will approve starting IVIG infusions. It’s taking forever and I fear the approval will not happen.

My symptoms are so exacerbated now that I desperately reached out to both Duke’s MG program and George Washington University’s MG program. Duke can see me in May! I see Dr. Henry Kaminski at GWU on Thursday of this week. My hopes are high and I pray I’m not disappointed. I’m desperate to have a Neurologist who truly understands this disease and will help me live. I honestly feel myself fading fast.

I doubt that Kaminski will disappoint! But I don't think you should wait that long for care.

You really need to be in a hospital. In that situation, having "approval to live," er, to have IVIG will be easier. If you are that bad off, you need more care right now.

Tests that should be done are a neurological exam, pulmonary function tests (MIP & MEP), arterial blood gas, CBC, O2, ECG, and whatever else they need to figure out why you are doing worse and to gauge the degree of exacerbation.

It's entirely possible that you have something else going on. Many of us have other AIs, such as thyroid conditions. That could make MG worse.

Do you have any signs of being sick? If you go anywhere, you have to wear a mask. You can't afford to be sick on top of this!

Sleep is important, but you need help with how badly you are doing. Not to scare you, but you can get to the point of needing intubation or a BiPAP. Muscles become weaker while sleeping. Who knows what your O2 is while you are doing that. They may need to do a mini-sleep study or overnight oximetry in the hospital too.

I'm so sorry you are doing poorly. In your situation, 911 is your best friend. Do you have a hospital close to you, where they know and understand MG?

I hope you'll be okay!!!

:grouphug:
Annie

Annie..today was a better day. I’ve had a PFTbstudy on Monday and it did show diaphragm and abdominal muscle weakness with no lung disease. The Pulmonary Tech said my results were not too bad for early MG. I was using a cane and collapsed in the hallway on my way out of the study room because of leg weakness. It was performed at a University hospital. The most they did was get me into a wheelchair so that my husband could get me into a car to bring home! Honestly, there are no good hospitals where I live.

My problem is that both my original Neuro Opthamologist and now my new Neuromuscular specialist have doubts whether I truly have MG. They have both documented this in their clinical notes. The reason....only my SFEMG was positive. Repeated Acetylcholine Receptor antibody tests and Musk antibody tests were negative. My EMG was also normal. At each office visit, my Neuromuscular exams are not bad enough for them to make the diagnosis. Nonetheless, they started me on Mestinon, progressed to Prednisone and Cellcept and are now trying to get insurance approval for IVIG. in the meantime, I deteriorate. That’s why I’m seeking another opinion.

Tomorrow is my big day seeing Dr. Kaminski. Have you heard of him? I’ve researched him and it appears he’s an MG expert. I need someone with experience who can confidently diagnose and treat me.

Do you have copies of your PFTs? If not, get them. They might not know your "normal" numbers and could have thought the ones they saw were "ok." I wish they would have done an arterial blood gas. Did they do your O2? Most techs don't save all of the MIP and MEP numbers. But in MG, having all of them is important, due to how we become weaker the more we do. If someone is stable, the numbers might be the same. If not, they'll be worse with each attempt.

I haven't seen Kaminski, but he does have a good reputation. However, many neuros tend to have massive egos. I hope he will be kind to you and respect the evidence.

The problem is that you are on drugs that suppress the immune system. That means the tests for MG might be normal now. Kaminski would probably view the SFEMG as more important that antibody tests, though they are both important evidence. Antibody production varies, and the severity of MG is not necessarily reflected by how high an antibody level is. There are other antibodies in MG, such as LRP4.

If he wants to redo the SFEMG, the test might be normal due to being on immunosuppressants. There are some people who are so bad, though, that they test positive even while on them.

MG is a clinical diagnosis that is backed up with tests. A thorough neurological exam is very important. The N-O and neuro you saw might not have been confident enough in diagnosing MG to realize that there are many presentations of this stupid disease. Some people can be very weak and test negative, while others can look fine and test positive.

If you can have a plan for "whatever it is" you have (sarcasm), any hospital can follow that. A good diagnosis is essential, but having a plan to treat a disease is more so. Kaminski can do that. A diagnostic letter is also a great thing to have from an expert.

I have no idea if you have MG. But the fact that you become weaker the more you do is indicative of myasthenia. What is concerning is that you aren't better on steroids yet. Please be careful of any withdrawal plan. After being on steroids for more than a few weeks, the adrenal glands tend to not work any longer due to the steroids doing that job for them! Withdrawal should be done slowly, or a person can have an adrenal crisis. That alone can tank MG.

That's probably more than you wanted to know, but there really is so much to know about MG. And having that knowledge helps during any doctor appointments, having tests, or managing the disease. I really hope that Kaminski can figure all of this out for you!

:grouphug:
Annie

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 “story” 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 don’t 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. Don’t 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 I’ll 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.

Whopee!!!!!!!!!!!!! I am so happy for you. Well written!!!
Best to you
Mike

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!!!

:grouphug:
Annie

Ions.
 

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 didn’t think MG patients could take this antibiotic but he said it was ok. That’s when Dr.Kaminski told me to download the “MyMG” app and reference it when doctors order new medications. He showed me his app! He bluntly told me to find another Pulmonologist! How’s that for looking out for the patient?

I have a question re: prednisone tapering. I’m on day #2 of tapering from 60mg to 50mg and feel “off”. 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.

Also, I’d love to read your articles mentioned. Please, do send.

Barbi-girl

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.

:grouphug:
Annie

Annie...I’m taking it very, very easy. I have to because I’m 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. I’ll read over all of the documents, again, thank you.

Yes, I’m 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 I’m wondering if I’ll be able to perform my high stress job again. Now, I’m faced with transitioning to long term disability in March and don’t have the energy to deal with it. It’s 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.

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

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?!! :cool:

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

Wanted to give you all an update. Everything said and suggested in this thread has come true for me.

I’ve 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 I’m 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!