Steroids

[debhaz22]

Hi, can you all tell me the Steroid dose that the Dr.'s started you on after being diagnosed?
How long were you on that dose before they knew if they needed to raise or lower that dose?
Thanks!
Deb H

[annekat]

I started on 60mg. prednisone and I think that is pretty common, though some might start on a little more. Along with this, I was on 50mg. and then up to 100mg. CTX. It was maybe 2-3 weeks before I went to 50 or 40mg. pred and then further tapering in 2 or 3 weeks. I remember arguing with the doc at one point that I thought it was too fast, but the amounts and time periods are hazy; I wish I'd kept a diary. I don't remember if the doc gave in and let me go a little slower; he may have. In your case, I don't think you are taking an immunosuppressant yet along with the pred, so you might need to be on the higher dose longer until they start the MTX. As far as when to lower or raise the dose, they go by the bloodwork numbers, showing the levels of inflammation, etc., and your symptoms in general, how much they have improved or gotten worse. Others know more about the bloodwork than I do. After being on pred for awhile, you will get a feeling for it yourself, whether you can taper or need to stay the same or use more. It is pretty subjective. Is prednisone the steroid you are on? I ask because I know that Dr. Seo put Sangye on hydrocortisone at one point, and I assume she is still on it. I knew the reason but have forgotten it. You might want to PM her with some questions, as she is very knowledgeable, and I doubt if she'd mind. I need to check Twitter and make sure she is doing OK!

[drz]

Some of us started on extreme dosages cause it was necessary to keep us alive and try stop the bleeding in lungs and kidneys or other places. I remember getting 1000 mg of Solumedrol (Methylprednisolone) IV which equals about 1650 mg of prednisone. This high dosage usually brings on a manic psychosis. When I recovered enough to leave the ICU they cut that back in half and when I left the hospital weeks later I was down to 70 mg oral each day and then over many months ( well over a year) tapered it down to 5 mg. The taper was done according to how much bleeding they detected in the lungs and whether kidney function was maintaining stability. The taper goes a lot faster at higher dosages and very slowly at lower dosages.

During a flare or suspected flare they would again start higher dosages of Solemedrol like 500 mg daily or during milder ones maybe only 100 or 60 mg daily by IV and then bump the pred back up to 40 with a quick taper down to what dosage I was at before the incident.

[annekat]

I can't imagine being on that much pred, drz. Scary! But I'm glad it kept you alive. And you got down to 5mg. in less time than I'm down to 7mg. or thereabouts. Are you still on it?

[mmthomm]

I started on 60 mg after completing 3 days of 1000mg Solumedrol and Decadron in the hospital. After a month i dropped to 40 mg and then 30 to 25 to 20 and then flared because the RTX hadn't had enough time to be effective so I had to go high again on prednisone and am doing a much slower taper. As much as I would love to go faster on my taper, flaring just isn't worth it. I'm happy to report that I'm now down to 22.5mg a day and i will stay there for three weeks before dropping another 25%. Even though all signs point to me being in "medication induced remission", I am going to be patient with the prednisone taper knowing that eventually my face will not look like the moon. ;-)


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[Alysia]

I started with 60mg because I was in an acute state, life risking.
but at other periods there where variations like:
60-50-40-30-20-10 for a day or for 3 days each.
OR: 30 for a week, then 20 for a week, then 10 for a week. this is my doc fav.
I think that each one has his own optimal doze. it is also varied according to the damaged part : for the lungs I needed couple of months of 60mg. for ears about couple of weeks of 30 or 20mg, for the joints 20mg was enough, for the nose nothing helped

[woz]

I started on 100mg pred for a week, then went to 80mg the next week, then 60 following week, then tapered down to zero, took about 4 months for me, but everybody is different, and I was extremely lucky, as said above it all depends on you bloodwork, and how advanced the disease is, I had wegs involvement in, ears, eyes, sinus, muscles and joints, lungs, kidneys, and who knows where else. Don't try to taper to fast, just do it little by little, my doctor told me I could taper 5 mg at a time, but when you get down to 10-15mg, little by little, I tapered 2.5 per week, to be sure to be sure.

Regards,,,Woz....Good Luck

[mishb]

I only started on 25mg, I guess because I was already on mobic tablets (an anti inflammatory for my RA)

This amount still caused me to blow up in weight and the reduction to (now 3mg) was very hard.

I hate to think how I would have been on 60mg or 100. I guess it may have cleared up my eyes and ears, and probably my nose, quicker.

[debhaz22]

Thank you everybody. Here's a dumb question: is Medrol pack, and Prednisone the same thing??

Also, does anyone know if there is alternative to Steroids without the bad side effects (heart pounding and face flushing)?
Thx
DebH

[MikeG-2012]

Hi, can you all tell me the Steroid dose that the Dr.'s started you on after being diagnosed?
How long were you on that dose before they knew if they needed to raise or lower that dose?
Thanks!
Deb H

My first time around once diagnosed, I was basically on a 4 month taper that started at 60MG. Never really go below 20MG with all the sinus issues I was having. did 6 months of Cytoxin the first time around too.

After my flare in November, same thing, but started at 80MG in November and am down to 15 now. Hopefully, after having the RTX this time I can get off the steroids altogether. It's been a 6 week taper between doses, so the doc is taking it SLOW and steady.