Re: tapering pred

[Guest guest]

I have gained so much weight from the monthly IV treatments and oral prednisone but they are tapering me as long as I do not have symptoms.

Kat,

Since you have already had a relapse in your sarc, and now it's more than just lungs-- it is so important that they get you on some other immunosupressant drug while you taper off the pred.

If you go off all meds-- then the sarc is going to party on-- and it's a real bad party.

For those of us with multiple systems involved, we have to stay on immunosupressants.

Plaquenil, Imuran, Methotrexate, Arava, Humira, Enbrel, Remicade, are all choices. Read the drug lists in www.arthritis.org.

This one is the best of all that I've seen. (You can see it online free, and subscribe for $20 a yr).

Tracie

NS Co-owner/moderator

************************************** See what's free at http://www.aol.com.

[Guest guest]

Tracie,

My lungs are okay. I just have the scar tissue as they did a chest xray and there is nothing active. I do not even have the erythema nodusm which I usually break out with nor the weight loss which I had when I had the attack in 1980.

KatSee what's free at AOL.com.

[Guest guest]

Tracie,

I forgot to tell you that they are tapering my oral prednisone but continuing the IV solu-medrol of 1000 mg every month. Then in a few months time they are going to do another MRI.

KatSee what's free at AOL.com.

[Guest guest]

My lungs are okay. I just have the scar tissue a

Kat,

You probably know this, but the scar tissue in the lungs is what keeps that part of the lungs from being able to get as much bloodflow across, so the air that does cross that area, isn't as well oxygenated.

If you think of your lungs as a sponge (a stiff sponge actually- they are very dense)-- and that sponge is breaking down or the cells are breaking apart- and they've gotten larger and less able to absorb the liquid-- then you have a true picture of what is happening to your lung tissue.

For me, 60% of my lungs are scarred, so the other 40% is making up the lack of ability for that loss. The technical term is pulmonary fibrosis--- and this means that our lungs are working overtime to get enough oxygenated blood to our cells- if that isn't in sync, then our bodies natural defense if to make sure the vital organs get enough oxygen-- and the result is numbness to the extremities.

The lungs are pretty incredible, as we can actually live on as little as 20% of the lungs-- doing 100% of the work-- but it is at the expense of overload, and eventually, the heart or lungs give out.

It is so very amazing that our bodies can do this-- but physically- it wears you out.

Blessings,

Tracie

NS Co-owner/moderator************************************** See what's free at http://www.aol.com.

[Guest guest]

they are tapering my oral prednisone but continuing the IV solu-medrol of 1000 mg every month.

That is brutal-- I'm surprised that they aren't cutting out the solu-medrol (which is prednisone) and keeping you on the oral. You'll probably continue to need the oral-- or a substitute to take it's place.

The more IV you get over time, the result is the same, bone thinning, weight gain, hardening of the arteries, cataracts, diabetes.

However, if it works for you-- and you can manage the side effects- it's still frontline treatment for sarc. My concern for you is that it is still blowing out the adrenals and the ability of your adrenals to produce their own cortisol.

I also am aware that even on the other choices- Imuran, Arava, Cytoxen, Plaquenil-- that they too have similar effects on our hormonal system.

The more immune compromised I become, the more attention I am finding myself paying to these issues. At least, I'm not in a nasty place emotionally-- which for me was a huge issue on steroids.

Take care,

Tracie

NS Co-owner/moderator************************************** See what's free at http://www.aol.com.