So I saw my Nuero today and after they found out how little the Mestinon is really helping, decided to get me on Predisone. This has been a very difficult 2 months. I had no idea I could feel almost normal with meds. I have been living basically crippled, barely able to sit on the couch and lucky to shower without having breathing issues. The last time I saw them was only the second time, and compared to the first time, (when I was diagnosed) I was feeling 100x's better, and told them I felt 80% to normal. Well the first time I saw them, I was probably hours from crises, so I did feel 100x's better. Today my husband told them I was only about 20% of my normal self (which he had observed and never told me, I'm lucky he watches out for me ).

I am very very excited to learn that I don't have to live this way for the rest of my life. I can't believe I may be able to take walks after dinner with my husband again!!!! Thankfully I will be starting my doses at 5 mg, and increasing another 5mg a week until I feel better, but I would like to take a few weeks at the 10-15mg range. Anybody have advise about what dose works for them, and how to combat the side effects? Thank you

Jessica

I definately think it's better to start off at a low dose, especially if you have bulbar symptoms...Prednisone can make you much weaker at first, so this could cause a crisis...

I was started at a very high dose (60 mgs then increase to 80 mgs), and I've developed diabetes after taking it for only a month and a half...So taking a high dose might uncover things that may have been managed okay prior to taking the steroids...

I'm glad that you've got your husband looking out for you...I think that we tend to minimize things, and it's hard to be objective...

I wish you lots of luck on your road to recovery...You're going to be feeling awesome in no time!

Nicky

I started on 40 and just upped to 60.

Does anyone know how long they keep you on this stuff?

Diabetes?? Very scary!!! Nick, What are your docs telling you to be proactive on the diabetes??

I literally just found out that my blood sugar is abnormal (last week)...I haven't even been diagnosed with diabetes officially by a doctor...The nurse checked my sugar yesterday, and it was sky-high, so I'm guessing I have it...I had to leave a message for my neuro. to ask her what all this means and what I should do in terms of the prednisone...

To tell you the truth, I think that I may have had it before I even started the prednisone...I was having symptoms of it...But it wasn't as bad as now (the symptoms, I mean)...

really watch out for anything abnormal, which I'm sure you will do...Be very proactive...Write down any/side-effects you experience and tell your GP right away...I'm going to see mine today to get this all sorted out...

I'm scared to take my prednisone now

Hi Jessica,
I was started at 60 mg daily (and I was put in hospital for observation in case I crashed). I had no problems with increased weakness. That was Nov 2007. Then about 6 months later I started decreasing my dose very slowly. I seemed to plateau at 40mg alternate days (40mg one day, next day no steroids). At that point I was able to work and function "normally" but still felt weak on occasion (particularly around my period). My neuro wanted me to stay there until he reassessed me, but I'm still waiting for the reassessment almost a year later. I've been feeling way better lately (YAY) so last week i decided to go down to 35 mg and see what happens (I'm sure some of you are giving your computer disapproving glares right now). Don't worry though - I'm monitoring myself closely and if i feel at all different I'll go back to my 40 mg. I would dearly love to start to look like myself again though - I've had so many comments lately that I'm looking better.

I was lucky to escape diabetes, I watched my sugar really closely for the first few months, but inevitably slacked off as I got used to the pred. My side-effects have been all superficial, I had a bone scan and my bones are quite healthy and strong and I have had my eyes checked as well. You do need to be kind-of hyper-vigilant about your health when on steroids. overall, I've been lucky though. You might want to search Cushings syndrome as that is probably the worst "superficial" side-effect you might encounter. (I think I mentioned this in another post) I had swollen face, belly (central-belt obesity), a fleshy lump at the back of my neck, I lost some hair on my head, gained some on my face and arms (nothing too drastic though - my husband assures me I'm over-aware of it and no-one else would notice), have pretty bad stretch marks on my tummy and legs, slightly darkened eyelids, and a bizzare rash around my nose that no-one knows how to get rid of (right now this rash is my biggest annoyance). I wish I had some great tips for you, but I've just sort-of dealt with the side-effects. Try to stay cool, I find the heat increases the swelling and redness of my face.

Sorry I can't be more helpful! My brain is a bit mushy at the moment. Take care,
~Kathy

Hi Nicky,
I just read this after my huge post - I know you are scared of diabetes, but NOT taking your pred is not the answer. That can cause more problems, maybe even heart attack. Better to keep taking your meds as normal and wait until you hear from your neuro.

Hope you are okay!!
~Kathy

Make sure not to stop Pred cold turkey! You have to taper off or your adrenals will make you hurt as well.

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