Hello and WELCOME! I've said it b/4 and I'll say it again - even with all of my side effects, I love my pred! It has truly been a life saver!

I was started @ 10 mgs in the hospital. It was doubled until I was @ 80 - 8 days later! I felt AMAZING! I was up and watering my yard and taking care of my family like I used to!

Even on 60/40 pred, my blood sugar has stayed low - it was 79 the other day, but it has gone up to 140 on a few occasions......

I HAVE been down to 15 mgs, but crashed - apparently that is the "magic" number - I know I'll be back to 20 soon. I have been told that I will probably always need to be on a low dose, but as long as I am able to function I am very happy!

I have been told that there is ALWAYS weight gain when you are on pred, so be prepared. However, it is soooo much better than having a crisis. Once you find your magic number things will even out. I know it worked wonders for my Gram - she looked normal after a few years - and that was on the hard stuff!

I am so happy to hear you are feeling GREAT!

Big hugs!
Erin

Hi Jessica,
I too started Pred at 5mg/day, as an in-patient and I stayed at that level for a week due to the worsening of all symptoms. After that, increase by 10 mg/d every week, and I was released from the hospital at 45. The dose was later increased to 75 mg/d (1 mg/kg of weight, which is the usual max dosage) due to the lack of results.
I noticed a sharp increase in my physical abilities (I had generalized MG) after about 5 months (I also take Cellcept...),bulbar symptoms disappeard after about 3 months from the beginning.
Pred dose was then continuously tapered and I'm now closed to my stable level as the change from 5 mg to 4mg/d caused some problems and I now try 4.5 mg...with my 4 daily 60 mg Mestinon.
Pred may cause osteoporosis (increase calcium content in your food intake), potassium depletion in blood (eat food with high potassium content), glaucoma (have your eyes regularly checked for that), diabetis (decrease sugar intake) and weight gain (significantly reduce salt in your food!)>
All this should also be regularly followed by blood analyses which your neuro should prescribe.
I hope everything will go well for you,
Maurice>

Hi, I have this love/hate relationship with prednisone. It has caused me a whole knew file of medical problems, and yet, it makes me feel like "today, I'm strong enough to make dinner" If I didn't have it, I'd be bedridden.
I started out with 20mg in the hospital, and then went up to 60, and then down to 30 for a many months, and then to 20mg. For the longest time, I couldn't go below twenty with out my breathing tanking. After a year of weaning down, and going back up, weaning down again, I'm at 10mgs, and have been holding at 10mgs for the last 10 months. (oh, and my dosages have always been daily, for some, it's every other day)
I've been on Prednisone for over 5 years now. I wasn't given the choice of how much to start out on, nor was I in any way shape or form informed about Prednisone," just take this, and let me know how you're feeling". My first neuro wasn't very talkative, and had a very thick accent. She was nice and all, just not one to tell her patients what to expect.And I look back, and she really didn't know as much about MG, as she should.

I now am with a Neuro-Muscular specialist, and I love him, he is a director of the MDA in his city, and has several MG patients. He knows his stuff. Oddly enough, I had the option of having him as my doctor when this all started, but I would have had to wait a couple of months to get in to see him, and I didn't want to wait that long, so I choose who ever I could get into first, and the fastest in his practice. I should have waited, and seen him, causeI wouldn't have had to wait so long for certain meds.

Knowledge is very powerful in controling your health, so read as much as you can about Prednisone, and your illness/illnesses. And most of all, Listen to your body.
best of wishes
Love Lizzie

Jessica
So glad you are getting relief, no one likes being on these drugs, but if they help your quality of life so be it !

How long does it normally take for you to feel better after starting prednisone? I have been on other treatment for MG but for some reason over the last couple of months it isn't working like it used to. I am thinking about going the prednisone route but am still unsure because I have had flare ups of MG in the past and it has always calmed down eventually without the use of Prednisone. This flare is lasting longer than usual so I am in a little pickle right now.

My neuro wants me to see a MG specialist at the end of the month for a second opinion on my treatment plan so I have until September 30th to decide if I want to try prednisone. I guess the hospital stay, the "getting worse before you get better" kinda frightens me a little bit as well as the possible side effects of prednisone.

I'm so confused.

Hi Shari, I would wait and see what the specialist says. If you can avoid going on prednisone that would be great. Although Prednisone can work wonders, it is Not with out dangers of it's own.
The down side to it is, once on, it's very difficult to get off. After being on prednisone for about 7 days, the body "has" to have it, as the adrenal glands shut down, and have to be slowly wake up again. And sometimes, after a long time on it, the adrednals don't want to wake up.
I've had prednisone be blamed for Pulmonary Hypertension, and of course diabetes, high blood pressure, weight gain, and although so far I'm good, it can cause bone loss.
These are just a few things, please read as much info as you can before making a decision.
On the positive side, Prednisone has given me a little of my life back. I'm not as weak, I don't collapse with fatique. I'm able to get the laundry done, and some work around the house, and most importantly, double vision doesn't happen as much, and breathing is much better on prednisone.

So, I guess what I'm saying is for me, Prednisone has put me in the preverbial 'between a rock and a hard place' . I've been on prednisone for well over five years now.
Some people don't have hardly any problems with it, others have a mountain load of issues while taking it, and many are inbetween . Unfortunately, I'm one who has had many other medical issues because of it, but I need it.
Educate yourself as much as you can.
Best of wishes to you, and please give an update on what you choose, and what the specialist says.
Love Lizzie

Thanks Lizzie,
Everything you mentioned is the reason why I am trying to do everything in my power not to begin prednisone therapy. I tend to have a bad MG flare up every four years or so but am really baffled as to why I had this one considering that my treatment plan for MG for the past 4 years has been pretty aggressive. We have increased my cellcept dosage from 2000 mg to 2500 mg daily and now have bumped my IVIG back to once a month instead of every 6 weeks. I also have increased my mestinon dosage a little as well.
It's been a couple of months now since my MG symptoms have come back and they are still hanging around so I guess I am just a little impatient about getting them under control again I tried a different IVIG brand the last couple of times and I am going back to the one I had before. The new brand left me feeling worse with side effects than my old one and it doesn't apppear to be giving me the benefits that I used to get. But prednisone really scares me because of everything you said.

I can say this, the intensity of my weakness is not nearly as bad as it was a couple of months ago so maybe I just need to relax and not worry about it so much. My husband keeps telling me to take it one day at a time as I have done in the past. I guess I just got spoiled to feeling "normal" for so long that it is hard for me to adjust to feeling like this again. I am still not as bad as many others who post on here so I am really thinking long and hard about the prednisone therapy.

I just want to get back to being able to do things with my husband and kids instead of being afraid to do anything because it might make my MG worse. I am not living right now, just merely existing.

Hey guys,

My hematologist said that my diabetes is borderline, and I should be able to manage it with diet...He told me to monitor it in the morning and a couple of hours after a meal...So far, it hasn't been too bad...Also, I think that my neuro. might reduce my prednisone because of this, so I'm kinda relieved....Taking prednisone is kinda too scary for me, I think...There are just too many new diseases/infections to possibly contend with...At least with the MG, there's just the one...The infections thing scares me a lot...I might search the internet too much, but I'm always finding these articles about people getting brain infections because of prednisone, and it's kinda too scary!

Nicky

Nicky,
That's good news about the diabetes! Was worried about you. Even if you can't lower the pred right now, at least you know you can impact the sugar levels adequately enough through diet for now.
Sue

Hey sweetie! Whatever you decide about pred, please do not stop taking it cold turkey. It is really dangerous!

How are you feeling today?

Love,
Erin