Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
My Dr doesnt want me on steriods long term and had trouble getting him to agree to Prednisone but he has given me a 4 week trial of dexamethasone, 6mg pills starting 4 per day a week reduced to the one day a week the last week. If this seems to help me I hope I can stay on it at least one pill a day for 6 months. Sure there are side effects but when your entire life consists of being stuck in bed unable to get around your house, side effects seem to be not so offputting.
My question is this: has anyone else noticed that the dexamethaone makes you feel worse than prednisone in the first 2 induction weeks? Having much more breathing problems and not sure if its the normal worsening from the new meds or if its an actual MG crisis heading my way again.
BTW, a nurse told me a good test to see if your breathing needed immediate medical attention, dont know if everyone is aware of this:
TAKE THE DEEPEST INTAKE OF BREATH you can and then as you exhale count as far as you can (you can so this as rapidly as you can clearly pronounce the numbers). Do this in one exhallation and dont stop till you have audibly gotten the last you can say. If you do 22 or less counts, time for medical intervention. The last few days Ive been close, down to 24 and its making me wonder if its the Dexa being in the first week.
My question is this: has anyone else noticed that the dexamethaone makes you feel worse than prednisone in the first 2 induction weeks? Having much more breathing problems and not sure if its the normal worsening from the new meds or if its an actual MG crisis heading my way again.
BTW, a nurse told me a good test to see if your breathing needed immediate medical attention, dont know if everyone is aware of this:
TAKE THE DEEPEST INTAKE OF BREATH you can and then as you exhale count as far as you can (you can so this as rapidly as you can clearly pronounce the numbers). Do this in one exhallation and dont stop till you have audibly gotten the last you can say. If you do 22 or less counts, time for medical intervention. The last few days Ive been close, down to 24 and its making me wonder if its the Dexa being in the first week.
Steroids can actually make you worse before you see improvement. This is the reason that many doctors prefer to start patients out on lower doses and increase the dose as you begin to improve. The idea is to avoid a major crash before you start to feel better. If you are getting close to the mark on your single count breath, do not delay. Please call your doctor and discuss this.
I started at 5 mg per day for 2-3 weeks then increased by 5 mg every 2 weeks until I got to 40 mg per day. Once I got to that point and became more stable for at least 3 months we gradually decreased it to 20 mg where we continued that dose for almost a year. After my Cellcept began to work we weaned me off of the prednisone completely.
Regarding whether dexamethasone makes us feel worse than prednisone... I think that's a personal issue. I've never noticed that much of a difference between the two and I've used both pretty regularly. I have talked to others that have had more difficulty with one vs. the other.
I think the overwhelming majority of doctors start patients out lower on medications and work the dose up to the dose that works best. You have started out taking 24 mg per day which may be too much too soon for you. Everyone is so different and perhaps you only need 10 mg.
I encourage you to call your doctor and discuss your symptoms. You want to avoid any potential problems with your breathing especially.
Good luck and please let us know what happens. If you are ever in question about your breathing don't second guess yourself. Go to the ED or call 911. Better safe than sorry. HUGS!!
I use the breathing test every so often. At times, I've put my CPAP machine on during the day when I was feeling short of breath,.