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 :sad:

[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.

[MikeG-2012]

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

I asked that of my Rheumy the second time around and got a definite "no". Hang in there, the 'roids will do things to you that you will detest, but it is livable.

I would recommend a good book since you haven't been through this before: Coping with Prednisone (http://www.amazon.com/Coping-Prednisone-Revised-Updated-Cortisone-Related-ebook/dp/B00CK503H8/ref=sr_1_1?s=books&ie=UTF8&qid=1395358473&sr=1-1&keywords=coping+with+prednisone) I thnk it will help you through the journey with the drug we all love to hate.

Hang in there Bulldog! I know you can do it!!!

[debhaz22]

Hey Mike, it's me "The Bulldog"!
Thx. Did you have bad side effects from that much steroid?? I had terrible side effects at 24 mg!
Deb H

[debhaz22]

Thanks! I'm going to order it right now.
Deb H (aka The Bulldog ;)

[brettgrant99]

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

At least when I have gotten them, my PCP has claimed that a Medrol Pack is the same as 5 mg prednisone. I think that they are very similar, but I can't tell if the differences are significant. May be like the difference between advil and aleve. I know that Medrol is a brand name, and sometimes at the pharmacy they switch the two (I've gotten the pack and just the bulk pills, the bulk pills have always been called prednisone, not methylprednisone). Probably doesn't really matter.

Good luck.
Brett

[debhaz22]

Thanks Brett!

[MikeG-2012]

Hey Mike, it's me "The Bulldog"!
Thx. Did you have bad side effects from that much steroid?? I had terrible side effects at 24 mg!
Deb H

Yep, puffed up like the stay-puff marshmallow man from Ghostbusters. Here's a list that i can remember: Fatigue, prednisone acne, muscle cramps in unexpected areas (forearms hurt the worst), moody, sleeplessness, agitation over simple things, heart racing, hot flashes, rapid over-heating doing simple tasks--especially in the summer months, oh and the worst one--INCREASED APPETITE!

Over the 5 years I've been on and off the steroids (major sinus issues prior to diagnosis), I've gained a significant amount of weight. For me, that is the hardest thing to live with right now. I grew up learning and living with horrible eating habits. That, combined with and lack of self control and the prednisone only made it worse. I can't wait to get semi-healthy again so I can start doing something about it. I'm reAlly tired of working from the fat clothes side of my closet.

I think the book will help you. Right now, you don't have much choice in treating this stupid disease, so please don't over-think it and get too worked up right now. Things will change, and it will be aggravating as anything you have ever went through, but you'll get through it.

Oh, and Medrol is the brand name of methylprednisolone or prednisone. Solu-medrol is the liquid version that they use via IV.

[debhaz22]

Gosh Mike, you've sold me on the Steroids! The side effects sound lovely!! ;)
BTW: I ordered that book last night that you recommended.
"The Bulldog"

[windchime]

Gosh Mike, you've sold me on the Steroids! The side effects sound lovely!! ;)
BTW: I ordered that book last night that you recommended.
"The Bulldog"

The book is really good. I got mine last week. I got it used on Amazon for $6 and it included shipping. Came from the UK. That's for those out there that might want to order it. There is a lot of good information in there.

[annekat]

On the flip side, Deb, there have been times I have wanted prednisone and actually craved it, because I knew it would help me feel so much better. Some of this was before I knew I had WG, when my ENT would prescribe it for me for sinus infections and allergies. He didn't want me to be on it all the time, though, not knowing I had Wegs and would have to be eventually, so he would sometimes deny it to me in more minor situations, and I can remember more or less begging him for it. For one thing, I had a lot of voice problems from all the mucus in my throat, and pred always cleared them up, so I could actually talk to people! Also, pred can give people a lot of energy and sort of a euphoric feeling as they bustle around getting things done. Everyone is different.

Early in WG treatment, I did not mind being on a lot of pred, but then was also dealing with the side effects of CTX, which were worse, until I got used to it. I did not want to taper from 60mg. as fast as the doc wanted me to, though I don't remember the exact progression of it. I had to live with the moonface, but I did not mind the appetite increase, as I was able to thoroughly enjoy a lot of healthy meals loaded with veggies, things I knew I needed to eat more of. Stir fries with veggies and eggs and other proteins, on top of rice, were the easiest things to prepare in my medicated stupor. I did gain weight, but not to the point of obesity, and was able to lose most of it later... Everyone is different in that way. I guess my point is that pred can be enjoyable for some people sometimes. Maybe when you are also on MTX, the pred problems will become secondary as you get used to the new med. Best of luck.

[annekat]

Sounds great, Cindy. I will try to remember to order it myself when I'm sure my bills are covered. I hope people will keep talking about it so as to remind me, though I think I may have saved a bookmark for it, too.

[debhaz22]

Really Anne? Begged for steroids? I don't know, I had such bad side effects from the tiniest dose, I hated it although did help my body pains, mouth sores, hoarseness, cough...You didn't get the heart pounding and face flushing??

[annekat]

Really Anne? Begged for steroids? I don't know, I had such bad side effects from the tiniest dose, I hated it although did help my body pains, mouth sores, hoarseness, cough...You didn't get the heart pounding and face flushing?? Yes, I have begged for them, to relieve my symptoms! When I first took them, pre-Wegs, I may have had some of what you are describing, but it wouldn't have been from a tiny dose... it would have been more like around 50-40mg. I even had some unusual coughing a few hours after taking them, which the doctors I talked to, except for one, did not think could be from the pred, even though that was listed as a possible side effect in the papers that came with it. I guess little by little I got used to some of those effects and if I was really miserable with a sinus infection, allergies, or whatever it was, I really craved the relief that it could bring, in combination with the antibiotics they might be giving me for infections. If I'd had as much face flushing and heart pounding as you did, I guess I would have felt more like you do about it.... everyone is different.

Once I was dx'ed with WG and pred became a constant, it wasn't a problem for me in combination with the immunosuppressant. I felt so lousy and fatigued all the time that the pred actually gave me a little boost. That isn't to say that I have never felt a little jittery from it, in an unpleasant way. And, in retrospect, I did have a pretty high heart rate at beginning of WG treatment.... but I was attributing that more to my breathing problems and being out of breath all the time. I imagine the high dose pred contributed to that, too.

Funny thing, after being on it non-stop for almost 3 years, I'm now at much lower doses, lower than 10mg/day, but I feel like even a tiny bit does a lot more, including the side effects like jitteriness. I've read that on here before, too. I don't know how I'd handle 60mg. right now if I had to. In any case, I'm sorry that even a small amount can affect you so negatively, and I hope you somehow can get used to it so this is less of a problem.

[gwenllian111]

Honestly, i'm terrified of being put back on pred. Last time I started having psychotic hallucinations, and severe depression (to the point that I wanted to end my life).

:(

[annekat]

Honestly, i'm terrified of being put back on pred. Last time I started having psychotic hallucinations, and severe depression (to the point that I wanted to end my life).

:( Wow. There appears to be a wide range of how people react to pred, whether it makes their lives miserable or really brings relief and a bit of energy. My neighbor has RA and also could not tolerate it, so just didn't use it when it was prescribed, though he was on MTX for many years and is now on something else. I wonder if any of us could get by on just the immunosuppressant without the pred, or if there is some other form of steroid or anti-inflammatory that would be effective against our symptoms but might be less problematic for some of us.

[MikeG-2012]

One of the deputies who works on our campus is allergic to it. He said he about swelled his throat shut last time he took it which was the last time he took it!


MikeG-2012

Diagnosed April 2012

[windchime]

On the flip side, Deb, there have been times I have wanted prednisone and actually craved it, because I knew it would help me feel so much better.

This is interesting because any time I've had bronchitis or a sinus infection over the years I've always wanted pred too. Mostly cause I knew it would fix me. The docs however were always hesitant to prescribe it, of course. My side effects are minimal, I think. 20 pound weight gain, but no moon face. On the higher doses I would only sleep about 4-5 hours a night. Now 7-8. Some nervousness, but since I was on albuterol at the time who knows which was causing that. Down to 15mgs now going to 10 next week. Yeah!! Good luck Deb.

[drz]

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

Medrol is probably a Solumedrol package as opposed to generic prednisone. It is stronger and given IV while pred is oral tablet.

[windchime]

The dose packs just show you how much to take every day versus handing you a bottle of 100 pills and telling to you have at it. As you get used to pred you may be able to regulate your own pred. It will depend on your relationship with your doc. The dosing can be complicated and the dose packs alleviate the confusion.

[windchime]

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

Deb

Medrol and solu medrol are brands names for methylprednisolone, which is generic pred.

http://en.wikipedia.org/wiki/Solu-Medrol

[annekat]

One of the deputies who works on our campus is allergic to it. He said he about swelled his throat shut last time he took it which was the last time he took it!


MikeG-2012

Diagnosed April 2012 That is interesting because it reminds me of when I first experienced high dose oral pred, pre-wegs dx, when I was prescribed it for severe ear or sinus infections, usually as a ten-day course. Several hours after taking it I'd have some pretty violent coughing, kind of like my throat was closing up, but not as extreme as the case you mention. After coughing awhile, it would subside, and it stopped happening as I tapered to the lower amounts. My ENT and his nurse did not think the pred would cause this, but it bothered me enough to call after hours where I got another ENT on-call who said he thought this could happen with pred. But he didn't say I could be allergic to it or should stop taking it; in other words, another one of those vague answers from docs. I just kept putting up with it knowing I'd stop coughing and it wouldn't kill me, I guess. By the time I was initially being treated for Wegs, it didn't seem to be happening or was cancelled out by all the coughing I was already doing anyway. Makes me wonder, though, whether this could indicate some degree of allergy to pred.

[windchime]

Some more info on the difference between methylprednisolone and prednisone.

The Steroid Curse: Prednisone Vs. Methylprednisolone - Helpful Tools and Devices - Rheumatoid Arthritis (http://www.healthcentral.com/rheumatoid-arthritis/c/568286/161613/prednisone/)

[annekat]

Some more info on the difference between methylprednisolone and prednisone.

The Steroid Curse: Prednisone Vs. Methylprednisolone - Helpful Tools and Devices - Rheumatoid Arthritis (http://www.healthcentral.com/rheumatoid-arthritis/c/568286/161613/prednisone/) Well, then maybe there is hope that Deb could try the methylprednisolone as an alternative.... it must be available in the US, I'd think. In fact, I used it once, having ordered some prednisone from one of those Canadian pharmacies but what came was prednisolone (same thing without the "methyl"?), via India. I really noticed no difference but was not using it at high doses but only like 5mg. for joint pain. It worked for that. I'm wondering, though, about people like Gwen, who is in the UK, and I assume would be using this and not what we use by default in the US, yet she had big problems with it in terms of psychotic-like episodes, which I've also heard of people having with prednisone.

[drz]

A quote explaining difference between prednisone and prednisolone.

"Though prednisone and prednisolone are used in the same manner and equally as effective, they should not be confused with each other. Prednisone is activated by the liver into prednisolone. For this reason and because it is more easily absorbed, prednisolone is the drug of choice when hepatic disease or insufficiency is present."

As you may know, they are both intermediate strength synthetic corticosteroids. "Prednisone and prednisolone are synthetic members of the glucocorticoid class of hormones. They are an intermediate acting, broad antiinflammatory, medication. They have less activity than dexamethasone or betamethasone, but exhibit greater activity than hydrocortisone."