Steroids

[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.