I feel WONDERFUL.....and it can't last, of course.
Jan 13, 2014 15:20:42 GMT
Post by elained on Jan 13, 2014 15:20:42 GMT
Dearest PID family,
Yes, I feel wonderful. I wake up without pain, sleepiness, depression. It's a whole new world. It is the world of oral steroids. In my case Methylprednisolone (Medrol). 4mg of Medrol is equal to 5mg of Prednisone.
I've been taking 4mg every day since December 18. Almost a month.
I take the Medrol in order to be able to tolerate monthly IVIG. I had the first IVIG on December 19, and then next one will be January 16. With my Immunologist, we are taking this a month at a time, to get me through the winter. I have Primary Immune Deficiency Disorder, so my own immune system isn't adequate to protect me from infections. The IVIG strengthens my immune system, to keep me healthy.
So this is the thing. Long term use of steroids is very hard on our bodies. I've seen many long lists of the bad things it steroids do. There are almost no lists of the good things steroids do because they do it all, take away pain and sorrow over night.
Of course we are all different, and for some steroids are an immediate nightmare. But for me they are a release into another world. A world where I can keep my eyes open and see beyond my immediate pain, itching, swelling, fatigue, and sorrow.
I do have to be careful not to push too hard and too long, however, because I'm not "really' healthy, I just feel that way. So if I overdo, by night time I crash completely. Not in a scary way, but clearly exhausted.
Here's the thing: I would love to take this forever. 4mg isn't a LOT. I AM almost 72 (March). Many of the negatives of long term use of steroids are things that happen several years down the road. I might not even BE here. In fact, I didn't expect to BE HERE NOW.
I know people who take low doses of steroids regularly.
There is a method called :
ADT® (Alternate Day Therapy)
Alternate day therapy is a corticosteroid dosing regimen in which twice the usual daily dose of corticoid is administered every other morning. The purpose of this mode of therapy is to provide the patient requiring long-term pharmacologic dose treatment with the beneficial effects of corticoids while minimizing certain undesirable effects, including pituitary-adrenal suppression, the Cushingoid state, corticoid withdrawal symptoms, and growth suppression in children.
The rationale for this treatment schedule is based on two major premises: (a) the anti-inflammatory or therapeutic effect of corticoids persists longer than their physical presence and metabolic effects and (b) administration of the corticosteroid every other morning allows for reestablishment of more nearly normal hypothalamic-pituitary-adrenal (HPA) activity on the off-steroid day.
dailymed.nlm.nih.gov/dailymed/lookup.cfm?setid=39d5270b-d957-4821-93d6-501b7b9f02d4
I wonder if I could try this. Or am I just foolish to want to continue with Medrol forever?
Yeah, probably foolish.
Foolish Hugs to everyone,
Elaine
Yes, I feel wonderful. I wake up without pain, sleepiness, depression. It's a whole new world. It is the world of oral steroids. In my case Methylprednisolone (Medrol). 4mg of Medrol is equal to 5mg of Prednisone.
I've been taking 4mg every day since December 18. Almost a month.
I take the Medrol in order to be able to tolerate monthly IVIG. I had the first IVIG on December 19, and then next one will be January 16. With my Immunologist, we are taking this a month at a time, to get me through the winter. I have Primary Immune Deficiency Disorder, so my own immune system isn't adequate to protect me from infections. The IVIG strengthens my immune system, to keep me healthy.
So this is the thing. Long term use of steroids is very hard on our bodies. I've seen many long lists of the bad things it steroids do. There are almost no lists of the good things steroids do because they do it all, take away pain and sorrow over night.
Of course we are all different, and for some steroids are an immediate nightmare. But for me they are a release into another world. A world where I can keep my eyes open and see beyond my immediate pain, itching, swelling, fatigue, and sorrow.
I do have to be careful not to push too hard and too long, however, because I'm not "really' healthy, I just feel that way. So if I overdo, by night time I crash completely. Not in a scary way, but clearly exhausted.
Here's the thing: I would love to take this forever. 4mg isn't a LOT. I AM almost 72 (March). Many of the negatives of long term use of steroids are things that happen several years down the road. I might not even BE here. In fact, I didn't expect to BE HERE NOW.
I know people who take low doses of steroids regularly.
There is a method called :
ADT® (Alternate Day Therapy)
Alternate day therapy is a corticosteroid dosing regimen in which twice the usual daily dose of corticoid is administered every other morning. The purpose of this mode of therapy is to provide the patient requiring long-term pharmacologic dose treatment with the beneficial effects of corticoids while minimizing certain undesirable effects, including pituitary-adrenal suppression, the Cushingoid state, corticoid withdrawal symptoms, and growth suppression in children.
The rationale for this treatment schedule is based on two major premises: (a) the anti-inflammatory or therapeutic effect of corticoids persists longer than their physical presence and metabolic effects and (b) administration of the corticosteroid every other morning allows for reestablishment of more nearly normal hypothalamic-pituitary-adrenal (HPA) activity on the off-steroid day.
dailymed.nlm.nih.gov/dailymed/lookup.cfm?setid=39d5270b-d957-4821-93d6-501b7b9f02d4
I wonder if I could try this. Or am I just foolish to want to continue with Medrol forever?
Yeah, probably foolish.
Foolish Hugs to everyone,
Elaine
