Adverse reactions to methyl pred

[choco]

Anyone else taken oral steroids and had an adverse reaction? I used to take IV steroids but they stopped working (I am SPMS). I then took oral steroids and they seemed to work albeit not as well. However on the last two occasions that I took the oral steroids I had an adverse reaction where my symptoms became in fact worst than before I took them.

I am going through the beginning of a relapse and am not sure what to do - whether I should take the steroids or not. The last time I took them I swore never again but really I am at my wits end and don't know what to do. I live on my own and the simplest of things have become so difficult to do. I have become afraid of my own body.

[DogMa]

Many years ago I had an allergic reaction to oral prednisone. My neuro. insists that can't be right and it won't happen again, but I am hesitant to test his theory. At the time I experienced flushing all over and swelling, I had not been diagnosed with MS though so no ideas re relapses, etc.

[rdmc]

About 20 years ago, I had an allergic reaction to Medrol.

It was a severe reaction, my tongue swelled up and blocked my airway, ER administered meds to control the reaction, but I was advised to stay away from steroids.

And so I have...I've never taken steroids again. During relapses, I just wait them out. Research shows that although steroids may lessen the relapse symptoms and duration, in the end they have no effect on disease progression.

If a doctor tells you it can't happen, he's wrong. Here is a standard medical info sheet on Prednisone. Notice under the heading "Before taking this medication"...it clearly states that you shouldn't take it if you're allergic to it, so why list it if it's not possible to be allergic to the med.

http://www.drugs.com/prednisone.html

[choco]

Many thanks for your replies. The thing with me is the first couple of times I took the oral steroids they worked. Then the last two times I took them I had some sort of reaction where the symptoms were even worse than before I took them. I don't know if you would call this an allergic reaction. All I know is I don't know if I want to take the chance of things ending up even worst. So right now I am even more limited than I was before the onset of this relapse. I just don't know what to do.

[Pkar2]

Choco, I am curious. Are the steroids stronger than the first time you took them when they worked?

The reason I asked is because the last time I communicated with you, I was going through the worst relapse ever. I tried to get some help, but didn't happen for a month in a half when I started to feel a little better. They gave me steroids but asked how strong I wanted them. I told them the lowest possible. I now have them just in case it happens again. They might not work, but I don't want to have any reaction to them. I would just rather wait it out.

I am also alone and have SPMS Whatever you do, please stay calm because it will get better. It has been two months for me and I am better. What I believe happened is that I went to the dentist and got an infection where he injected the needle for a stupid cavity filling.

Hope this helps.

[choco]

Hi Pkar2, how you been? To answer your question, no change on strength of the steroids. The strength of the dosage was the same on all occasions. I have only taken oral steroids half a dozen times or so - the last two times they were an unmitigated disaster.

So far I have not taken them this time. They are sitting there in the box waiting for me to decide. But the good news is that I am beginning to feel better without them. Going back to our discussion on MitoQ, I cannot help but wonder if this has helped to shorten the relapse if indeed what I was experiencing was a relapse. Are you still taking this? Do you feel it has helped you?

It seems that we are in similar circumstances - SPMS, living on our own... You know that expression what doesn't kill you will make you stronger? I am really beginning to believe that is true. Take care my friend xx

[Pkar2]

Hi Chocco,

I am really glad to hear back from you.

Well, I am not sure if the lower dose of the steroids will help you or me. I will just keep them in case. Really don't want to use them, but we will see.

As far as the MitoQ, I do still use it. I take two a day and sometimes one a day with another Coq10 pill. I do know they are great for you. I am not sure, nor do I believe that MitoQ was the only thing that helped me feel better. I still use my electric muscle machine and I know for sure that is helping. I need to keep exercising this body and this made it a little easier for me.

In the last two days, I am taking more of my Vitamin D3, B12 and Lion's Mane pills. You got me on the Lions's Mane. I will never stop taking that after the research I did.

I do agree with that saying, what doesn't kill you makes you stronger and I also believe at times being alone makes me stronger. I am going to continue to fight this thing no matter what. You take care, too, friend.

[Pkar2]

Choco, I should have reread my post before posting it.

I need to make sure I type the person's name right. Sorry.

[choco]

Pkar2 i looked under your profile for a email address in order to write to you but couldn't see one 😔. Mine is in my profile, please drop me a line and we can catch up more on the mitoQ and lions mane, ect.

[BigA]

If you are secondary progressive, why are you taking steroids? Or if you are having relapses, are you really progressive?

In any case, you don't *have* to take steroids. They're not supposed to make a difference in the long run, so if you have a relapse and can't do your job because you're seeing double and the steroids will bring you back to baseline (or not) and you can go back to work, that's great. But if you can live with the effects until you slowly go back (or not), then you don't need to take them.

At the end of the day, anyone can have a personal reaction to anything. If there are people who are allergic to their own sweat (Cholinergic urticarial), who can say a reaction can't happen?

[Guzzy]

Hi Choco
I've never had a swelling-up or allergic type reaction, but I've gone a bit psychotic!!!

Steroids have never, ever worked for me. They seemed to make me worse. Even 16 years ago when I had IV steroids, they did nothing, and I only got better about a week after stopping them.

In my entire 16 years since diagnosis I took them that time IV because I was paralysed. Once since in tablet version because my vision was going funny. That's it - I avoid them at all costs; there seems to be no benefit to me in taking them.

Is anyone else the same?