I was on prednisone for awhile...60mg a day. It is an amazing drug, with a lot of nasty side effects. I couldn't sleep (they called me the predni-chef because in the middle of the night I would be up cooking meals and freezing them), I was hungry all the time (I joined weight watchers and was HAPPY if I gained one pound or less per week! People thought I was crazy, but imagine how much weight I would've gained if I hadn't joined!). I had the classic moon face. Now everyone thinks I lost all this weight, but I'm the same...my face is just back to normal. I had steroid-induced diabetes while on the higher dose and had to give myself injections. Once tapered below 20mg I was able to stop the insulin. I'm sure there are other symptoms, but I'm just waking up and haven't had my caffeine yet! I was on imuran, too, whiling tapering off the prednisone. I had 3 boughts with pancreatitus (first one my gallbladder was removed). Needless to say, I am no longer on imuran. I am no longer on prednisone. I take mestinon as needed. If symptoms were to flare again, I know that a low dose of prednisone would work for me. Would I take it again? If necessary. I would want to try IVIG first or cellcept and use prednisone last. Now, some of us have had great success with imuran...I'm just not one of them. As for the prednisone...the key is finding the right dosage that works the best. Good luck with finding what works best for you. Remember, everyone reacts differently to meds...waving my magic wand to get your mestinon working right for you! :)

Hi Unsure,

You must be so frustrated right now. It takes time to find the right meds that work for you. Mestinon helped in the beginning of my treatment, but after a few months, it lost it's positive effect totally and I stopped taking it. It' s all about the quality of life and weighing the pros and cons of each med, and what risks or side effect are worth achieving that. I was dx when I was in a crisis, so I was started on high dose pred
right away ( actually , too high a dose according to neuro 3 ( 100mg, I weight 120 lbs.) It did bring mg into remission which was great.I was weaned down on pred, but never started on cellcept , Imuran, I did have another crisis and found neuro three. I had 3 days of ivig , and brought up to 60 mg of pred., mg was brought under control and I was started on Imuran. After a month , I had IVIG and slowly started the pred. wean. After 2 years, I am now down to 8 mgs a day. As far as the preds. high dose caused, moon face, insomnia, anxiety, mood swings, weight gain, easy bruising. Some of this can be controlled with low salt diet, sleep aids, healthy diet and Cymbalta helped with anxiety and mood swings. Once I was down to 30 mgs a day, I lost moon face, insomnia, and extra weight. At 8 mgs a day, I have no symtoms. Long term use can cause osteoporosis, so I take calcium and bone supplement and do yoga and lift light weights.
I think you need to let your Dr. know what's going on and discuss what options you can take.

Hang in there!

Judy

Hi Unsure, I too can relate to the mestonin level challenges. I worry about taking too much, but cant get any relief at all without it. However, it never, ever, makes me feel 100% and I guess it is unrealistic for me to expect that but there is a part of me that is still hopeful. Last week i was at my wits end and called my neuro to get some relief. We briefly discussed my mestonin and she feels at the stage i am at, that frankly it would be hard to overdose without really going crazy. I am currently taking 90mgs every 3 hours and feel better than i have in a while. That having been said, she has now begun to "finally" think that i need additional treatment. She would like to see me on cellcept/mestonin and is not a big fan of prednisone since its such a commitment. She was not willing to begin the treatment without me seeing a MG specialist who could give me any/all the options and make a decision at that point. Soooo... I am going to see a specialist this week and I would imagine i will add a new pill to my regimen. In my research, and i assure you i have done plenty, i am terrified of the prednisone side effects, so great, there is another option... cell cept... however, that is basically a poison you take to control things.... i believe its a pick your poison kind of thing... I am sure there are other options which i have not yet investigated, ivig, imuran etc. But really, everyone is different, this has been my experience so far, which in reality has only been a short time (2-4 months depending on how you look at it) Problem is i am a typical a persoality with a busy, traveling career, 2 kids and a life i am not willing to give up so I am attacking things as aggressively as i can.. bad news is MG didnt get the memo and most days its winning, got to keep the faith and keep trying everything out there... the waiting is hell.. i know...its so hard.

my drug schedule
90mg every 3 hours when awake
last pill of the day is a time release 180 so i can get out of bed in the am

best wishes to you...

Thanks you all for your replies...can I ask - how long would you usually be on the higher doses? I know we are all different and respond differently but is there a standard guideline of initially dose and the reducing down?? I've heard a lot of oeople talking about tapering??

Also, I assume that they also help our energy levels? This is where I really struggle - I am so fed up of resting but know that my body can't do anymore right now.....I have been postponing washing my hair for 3 days as I just haven't got the energy for it! How bad is that?! I've no chance of doing all the things my head misses and wants to do!!

Thanks again.x

I take Imuran; the only side effects at first was flu like symptoms. It passed, but I remember when it kicked in- I went back to work full time. I was on 20mg of prednisone at one time. I had a moon face, hair loss and gained weight in my neck and belly. Looking back I would follow the same treatment plan again. Good luck. Some have expressed concern over only taking mestinon, because MG is progressive and mestinon treats only symptoms. Good luck! HUG!

You might want to read about experiences and information in the Links Group. Right now prednisone happens to be the first discussion on the first page. There is another discussion whose primary focus is Mestinon in the Links Group. Gwyn's comments in the discussion that is the first link are particularly helpful, for example, and there are excellent off site articles linked as well.

Your current neurologist is experienced and the best person to talk to about your medications, but it is important for you to understand something about the risks you are taking with each kind of treatment. Some risks can be anticipated, others may happen only to a few persons taking the drug. When it comes to medications, if we cannot get by with the safest drug, which is Mestinon, we are essentially picking our poison or using investigational treatments or other treatment like IVIg whose mode of action is not fully understood and have risks of their own. BUT MG is an unpredictable disease, both for good or ill and I am thankful for a neurologist who always seems to be considering "what if."

Just a quick run down for you and new people about medication options at the beginning--afterwards they really vary. Mestinon is the mainstay of treatment for the functional problem which is getting the muscle to contract when we tell it to. It works by slowing the breakdown of the messenger between the nerve and muscle so it has longer to find a functioning muscle receptor. Other treatments which work immediately or nearly so, are prednisone which is an immune modulator, IVIG which is an infusion, and PLEX which temporarily removes antibodies from the blood stream. The two immunosuppressants most often used, agreeably better long term treatment than prednisone, especially high dose prednisone, are Imuran (azathioprine) and CellCept (mycophenolate mofetil), but they do not help in acute deterioration. If we are not one of the fortunate people who go into immediate remission with Mestinon, we will likely have to be taking one or several of those treatments. Which ones you and your doctor chose will depend on your tolerance for side effects and uncertainty, genetics (especially in the case of Imuran metabolism), experience (both yours and the doctor's), your response, goals, health, age, etc. We are snowflakes and MG can be a formidable adversary.

Personally, I prefer the devil I know--prednisone and older treatments, but should they fail to give me active years with my family and on the mountain trails, I am glad there are others to consider. b.

Prednisone and cellcept gave me life.

I didn't see anyone respond about predinsone and energy. I am on 30mg of prednisone, and it makes me tired but that just might be from the insomnia. I can get to sleep because I'm tired, but after a few hours, I'm wide awake and not going back to sleep. That makes work difficult, because once I get tired enough to fall asleep, time to wake up! Juggling kids, family, work, MG doesn't fit into the picture too well.

I had to take sleeping pills when on 30 of prednisone,
I am down Tao 6 of prednisone and somet iMessage still need sleeping pills to sleep. Ther than that is gives me more energy.

Prednisone has not been that bad for me, frankly. I'm on 20mg right now, trying to keep it as low as possible to avoid the really bad side effects. For me, it's made my bladder irritable, I retain water (so I stick to a low sodium diet and make sure to get plenty of potassium to counteract the effects), I get headaches, and I definitely have mood swings (just ask my poor friends!), but while that sounds like quite a bit, I've adjusted to it well. I have more energy and feel a lot stronger, so it's a tradeoff I'm willing to make. I haven't gained any weight or had moonface, which I totally expected to get.

It is frustrating to rely on steroids, but even on chemo and doing no exercise (or anything), I reply on steroids to keep my eyes open. They demand respect in terms of diet and supplements, but they improve quality of life. To say that Mestinon is the safest drug is to not consider the possibility of disease progression, in my opinion. Don't forget steroids that do not need to be taken daily; taking steroids weekly or twice weekly can reduce days of insomnia.

Hello unsure..

I have been on 30 mg of prednisone for 18 months. It has been a necessary evil for me. It has played its role in stabilizing mg along with ivig, methotrexate and cellcept. After my April infusion we will try to start tapering.

With that being said..I did get cataracts that required surgery (im 47) and osteopenia. But I avoided worse.

I suggest reading Coping with Prednisone if you think you'll need long term treatment. I found it valuable. Good luck :)

Barb

It is interesting to see how everyone is so different. Prednisone has been such a love hate thing for me as well. I was like you and felt like no matter how much I slept I still was completely exhausted. Waking up in the morning was excruciating before pred. Since going on pred. I have a lot of energy, infact I can't take a nap if I wanted to.Now I wake up at 7 am with no problems. It has also helped the fatigue in my limbs which is helping me to work, unfortunately my disease seems to be progressing despite pred, immuran and mestinon because my breathing, eyes and swallowing continue to go down hill. I only have been on 20 mg for 4 months now but I haven't tolerated prednisone well so I'm really hesitant to go on higher doses. In the beginning I had headaches and insomnia (also I ended up in the hospital after my 3rd day of taking it because of significant lung weakness and crash in potassium) the headaches and insomnia went away but I still have a TON of sweating, high blood pressure, high heart rate, gained 10 pounds, wierd periods, fat on neck and belly, moon face (i was always on the thinner side now I feel bloated and fat) but despite all this my by far hardest thing I have dealt with on pred is the mental. I have had so much depression and anxiety and just a general unsettled feeling, I don't feel like myself. I have always been a very easy going happy person and since on prednisone I feel so sad and anxious. It is hard because the mental has been just as hard if not worse then the extreme exhaustion and fatigue but without it I think my breathing and swallowing problems would rapidly progress. I feel trapped on it. Anyway I don't mean to scare you because I do think the prednisone saves lives I just want you to be aware that everyone reacts so differently to it. I think I would be in a mental hospital if they put me on 60 or 80 mg. Good luck with your search. Sometimes you just have to bite the bullet and try. I remember the first day I started prednisone, I stood in my kitchen for a half hour with it in my hand until I finally said to my husband "hold on this might be a bumpy ride" :-)

As if we don't have enough on our plate, we have to worry about these horrible medications that hold us hostage too.

I have been on prednisone since November of 2012. My dosage has varied from 0-40 mg a day in that span of time. I started at just 5 mg and worked my way up to 20 mg where I stayed for quite some time. When my cellcept kicked in a bit I began to wean myself off of the prednisone. I was able to get off of it for about 3 weeks total and then due to breathing issues had to restart it. I started at 5 mg again and was up to 20 mg when I had my "mini" crisis in December due to sinus infection. While hospitalized I was put on 40 mg per day of oral prednisone and an additional 20 mg of IV methylprednisolone. I am now on 25 mg a day of the prednisone and working toward 20 mg or lower if possible.

Okay, now for the nitty gritty details of my love/hate relationship with steroids. I use to weight between 145-155 lb and now I'm about 250, if not more. (I'm terrified of the scale these days.) Not all of that is from the prednisone though. Since I can't exercise without complete exhaustion it's probably caused about 20% of that weight gain. Another 10% of the weight gain is that my husband has been doing the cooking since I can't really do it myself after working all day. I am a walking side effect commercial for steroids. I have full moon face, weight has been redistributed to the face, neck, belly, etc. I have moon face from hell and my face is always red hot. I get very sweaty and therefor uncomfortable most of the time. I always feel like a water retaining sea cow and occasionally I have mild high blood pressure but it seldom rises above the 130/84 (ish). I had insomnia shortly after coming home from the hospital, mainly because I had gotten so much steroid in the hospital. Once I was back to 40 mg or less per day, I slept just fine. I still nap quite a bit but the steroids really does give me a boost of energy and I don't have to nap as often. I do have anxiety which has worsened since starting the steroids but it's controlled well at this point. Of course I also have the hair loss and strange bumps and skin tags that pop up in weird places.

Now for the positive effects (and yes there is a positive effect). I can get out of bed in the morning and shower without having to nap between the shower and getting dressed and ready for work. I can hold the hairdryer now if I have to but avoid it whenever possible for energy conservation. I can work go to work and be functional but perhaps a little slower than I'd like. When I absolutely have to do something physical I can push through it and get it done. Without the steroids there's NO "push through it". My jaw isn't nearly as weak as before and I don't have ptosis every day. My voice is strong and the best of all is the fact that I can breathe. I have fewer incidents of choking on air and my own saliva and almost no choking on food.

So, if I had it to do over again I think I'd still follow the same path although I wouldn't wean off the steroids as I did. I would stay on a low dose steroid instead to keep stabilized. So that's my experience with steroids. I've never really had an issue with mood swings or anger/aggression and no more depression than I had before the MG. I had a head start on the depression though from my Hashimoto's thyroid disease.

I hope that you can find a good treatment option for yourself. I think it may be necessary to do the steroids if only for a short time while cellcept of imuran starts to kick in. I have had no side effects from the cellcept and it's a bit safer for those of us with a strong family or personal history of cancer (of any kind).

As everyone else has mentioned, we are snowflakes for a reason. Your experience with these medications is going to be unique and you may have side effects that nobody else has experienced. I encourage you to start low on the steroids and work up, if needed. Some doctors start higher an work down from there. (I don't know about other DS members but we see it a lot in patients that transfer their care to our office.)

Good luck in your search for the right treatment options for you. Please keep us posted on your choices. Big hugs to you my friend.
Aloha,
Angie

A progressive increase in mestinon indicates disease progression and should not be taken lightly. I used IVIG to push this back and C ellcept to get my life back. Never took steroids as was the plan.

I am seropositive for MG. If you are seropositive, it is my opinion that you owe it to yourself to give Cellcept a try.

Good luck!
TJ