How to handle parties/social events when you HAVE to go

[Mel9]

Just an update here. I finally found a way to stop the post-party PEM .... but its definitely not for everyone. A megadose of prednisone (35mg) around 4 hours before the party.

I've tried it 2x, and its worked flawlessly both times. Theres no way its a coincidence... before this... I havent had a party without PEM for years. I'm still staying away from parties in general, but having this tool at my disposal is really great. I hope it continues to work.

But I hesitate to recommend it to everyone... especially if you get post prednisone PEM after 1 day. And of course... staying on prednisone for more than a day is a BIG no-no... This is a 'once in a while' fix.

Works for me too. I was prescribed dexamethasone for Herheimer reactions while taking antibiotics for Borrelia infection. A few times since I was forced to participate in social occasions for work and felt severe PEM coming in. I discovered that four 0.5mg dexamethasone tablets completely prevented the PEM.

 

[Mel9]

Works for me too. I was prescribed dexamethasone for Herheimer reactions while taking antibiotics for Borrelia infection. A few times since I was forced to participate in social occasions for work and felt severe PEM coming in. I discovered that four 0.5 mg dexamethasone tablets completely prevented the PEM. That amount also stops my herx reactions. I am very careful not to take too many as they can be harmful. No more than 4 tabs once per week so far.

 

[Hip]

Just an update here. I finally found a way to stop the post-party PEM .... but its definitely not for everyone. A megadose of prednisone (35mg) around 4 hours before the party.

I've tried it 2x, and its worked flawlessly both times. Theres no way its a coincidence... before this... I havent had a party without PEM for years. I'm still staying away from parties in general, but having this tool at my disposal is really great. I hope it continues to work.

But I hesitate to recommend it to everyone... especially if you get post prednisone PEM after 1 day. And of course... staying on prednisone for more than a day is a BIG no-no... This is a 'once in a while' fix.

Very interesting, @hamsterman.

I have now just added prednisone to my list of PEM Busters in this post.

 

[hamsterman]

Works for me too. I was prescribed dexamethasone for Herheimer reactions while taking antibiotics for Borrelia infection. A few times since I was forced to participate in social occasions for work and felt severe PEM coming in. I discovered that four 0.5mg dexamethasone tablets completely prevented the PEM.

Good to see Im not the only one here. Corticosteroids almost feel like cheating... something that is too good to be true, and you will be doing long-term damage by using them. But using them very carefully and occasoinally, at very strategic times.... there seems like there is no payback, no tolerance building, and no need for tapering.

But when I get careless about it.... it can be terrible. For example, I once used them for Disneyland... I took Prednisone at 9:00am and felt great... but by the late afternoon, when I shoulda wound down... I kept going... and went into a severe PEM lasting almost a week.

 

[hamsterman]

Very interesting, @hamsterman.

I have now just added prednisone to my list of PEM Busters in this post.

Glad to contribute, and your list is very helpful. But can you put a warning next to Prednisone. Its in a very different class than your other PEM busters. I've experimented with Prednisone quite a bit over the years (especially in the last 5 months).... and it can be a life-saver... but can also be dangerous if used improperly. Make sure to note that it should never be taken regularly, or for any extended period of time.... honestly... 2 days in a row MAX... but 1 day is better. I would also suggest no more than 4 times a month (just from my experience... it could be more). Its very important that no tolerance is built up, and that your adrenals have no time to adjust. Also, smaller doses dont work. Also, its PEM protective properties don't seem to work through the entire day.... I've noticed they seem to drop off after about 6-8 hours... and even though you may still feel very alert and sociable... your really running on fumes... which can cause major PEM afterwards (as I've noted on my previous post)

 

[Hip]

But can you put a warning next to Prednisone.

Good idea, I have now done so.

Also, smaller doses dont work.

In this post in another thread, @ukxmrv said that 10 to 20 mg of prednisone works for him, so perhaps the effective dose for PEM prevention may vary from person to person?

Make sure its Prednisolone (with the 'l') since its in your system much longer

Could you explain what you mean here. You said you used prednisone rather than prednisolone.

 

[rosie26]

Corticosteroids almost feel like cheating... something that is too good to be true,

I had the opposite effect. There was nothing good about prednisone for me. Prednisone had me wanting to take my life. Definitely not for me. Not helpful, quite dangerous and I only took 5mg 1x.

 

[Fritz18]

I try to go early and leave early. I usually stay close to my wife so she can do most of the talking (my voice starts to fade if I talk for too long) and when I do say things, I try to ask open questions so other can do the talking. If we have to go out for dinner with another couple, I try make sure we go to a quiet place.

 

[hamsterman]

In this post in another thread, @ukxmrv said that 10 to 20 mg of prednisone works for him, so perhaps the effective dose for PEM prevention may vary from person to person?

What I meant by small doses was the smaller maintenance type doses, usually around 5mgs. I tried everything from 5-20mgs, and it didnt work for me. But I am pretty large in stature, so maybe thats on the high end.

Scratch the 'prednisolone' comment. Although my GI doctor prefers prednisolone, I just asked my brother whos a pharmacist, and he said their basically identical... ones just a precursor of the other.

 

[parabola]

hi @hamsterman ! I have just bought some 5mg prednisolone to try as a PEM shield for one-offs. Can I ask how much you weigh? I am tall but quite slim so thinking I might be able to get away with a smaller dose. (BTW I was told several years back that the difference is prednisolone is easier on the liver than prednisone).

 

[Wolfcub]

I find these things VERY hard. And I am only "mild" on the CFS scale. I might be doing not too badly alone and living quiet life, even gentle walks doing me no harm.
But even if I have to go out to dinner it seriously is no fun. I can feel myself "running on fumes" and under the circumstances it's not even possible to sneak out anywhere and lie down etc. I don't even get to that stage, as the event isn't even a long one or might be out at a restaurant etc.

The talking, the talking while eating, the pseudo-jolly way I am supposed to be, the strange worried looks I'd get if I said I wasn't too well (people don't generally know, and paradoxically I look okay), the loud noise of the pub or restaurant, the refusing a second drink, and only being able to sip at half a glass of wine, the getting dressed to go there, and the waiting about until eight when I am ravenously hungry at five, the slight concern about "will I get a funny turn while I'm there?"...... It is all too much to be honest. I wish I never had to go out anywhere ever again.
But if I say no or make an excuse, people think I am unfriendly.

It usually takes me a couple of days to recover. Honestly I'd pay someone not to make me go.

 

[Mel9]

Two years later: i now avoid using this because I ended up getting ‘moonface’ appearance.

Best thing is to avoid the party I think.

 

[parabola]

Two years later: i now avoid using this because I ended up getting ‘moonface’ appearance.

Best thing is to avoid the party I think.

Can I ask how frequently you were taking pred and how much?

 

[Mel9]

I was using it to cope with
‘Herx’ reactions, almost daily.

 

[parabola]

I was using it to cope with
‘Herx’ reactions, almost daily.

Oh wow.. I was going to say, I took it for close to two months for Crohn's and didn't get the moon face at all. Have you had your bones and adrenal function checked since?