FIRST TIME CRASHING!!

[Waydwnsouth1]

I just finished my 3 day course of IVSM I mentioned in my previous post. For the first time I am experiencing a crash from the steroids.

This was my 3rd IVSM infusion. I ended up in the hospital after the first one due to fluid retention in my lungs which caused chest pains. My steroids were infused over a one hour course of time at a civilian infusion center.

The second infusion was done at the VA and was infused over a 90 minute time period to help with the fluid retention. I handled that treatment just fine. No side effects, no mettalic taste in my mouth and no crash.

This 3rd time has been quite the opposite. It was given at the same VA Clinic over 90 minutes. But from day one I had a mettalic taste in my mouth, fortunately I was prepared and had peppermints with me, I couldn't sleep at night and had no appetite at all. I was up all night last night. Today I am fatigued, weak and still no appetite.

I feel like I may be crashing. I'm sure someone else out there has crashed on steroids. What is it like? What should I be looking for? My DW does not like the idea of me taking IVSM at all but she also understands they are a necessary evil at times. I know there are other options to steroids but I prefer steroids, even given my track record. I'd like to better understand steroids from those who take them than from what I can read on the Internet.

[pennstater]

I have always had a metallic taste with IVSM. Unfortunately, one of the side effects is inability to sleep. I do not do an oral taper for that reason, as it just prolongs it.

If you can't sleep, let your neuro know. Ask for something to help you sleep. There is no point in suffering needlessly. Without taking something, I was lucky if I slept all of an hour. Some of what you are feeling is from lack of sleep.

Hope you feel better.

[Thinkimjob]

[QUOTE=Waydwnsouth1;1491076 I'd like to better understand steroids from those who take them than from what I can read on the Internet.[/QUOTE]

Laughing with you, not at you.
I loved IVSM.

Yes, high blood pressure, metal mouth, horrendous thrushy tongue and insomnia. But it worked, and it worked fast.
Crawl in, walk out. Literally.

Usually the positive anti-MS effects lasted a good, long time.

The drugs make you energetic, a bit hyper and manic, and that will change when they wear off.

I had to have Xanax, so's I could sleep.

Can't have the 'roids anymore, lest my brain explodes.

[Waydwnsouth1]

Thinkimjob,

Thank you, thank you!! Thrushy tongue that's what I've been trying to describe to myself. My tongue has been just awful since my IVSM. It's slowly clearing up, thank goodness, I'm sleeping like a log now but as for crawl in and walk out not so much.

It's been 4 days since I finished my IVSM and so far no change whatsoever. If I had to say anything perhaps a bit worse. I was having significant trouble walking and the pain was overwhelming. The pain has gone back to my "abnormal" normal but my walking has not improved at all. I'm still having to use my wheelchair.

But I'm holding out hope that things may change. With this crazy disease one just never knows.

[Thinkimjob]

Forgot to tell you, plain sugar free yoghurt is really good for a thrushy tongue.
There are lozenges you can suck, too. Can't remember the name. Dr Google will know.

[dastardly]

Hi guys I just recently finished a 3 day corse of IVSM and other than the taste nothing happened, the first time I had this treatment 7 months ago I went into the hospital in a wheelchair, 2nd day I went in using a walker, the 3rd day just a cane what a miracle, well the miracle didn't happen this time but I wasn't as bad as the first Im just using a cane and when I get fatigued I use a walker, I don't need the chair, the only thing I can put it down to is now Im on tysabri had 5 infusions number 6 this week Craig

[pennstater]

Waydwnsouth1 and Dastardly,

Hope you both feel better soon. IVSM always left me recovering from the side effects for a few weeks. I hope you both get more recovery from your relapse than you have experienced so far.

[Bootlegger]

in same boat

I just got out sat after a 5 dose steroids. worse off now. pain worse as well as extreme weakness and still the headache. sorry for typos but on phone typing. im in Louisiana also. (nw la) 2nd flareup within 7 months. will get on here tomorrow on laptop. was suggested i consider aubigio since avonex not doing so well anymorr. i feel your pain and frustration Waydwnsouth. my last mri last summeer had no new lesions. but my symptims has increased. still not sleeping. . hang in there.

Thinkimjob,

Thank you, thank you!! Thrushy tongue that's what I've been trying to describe to myself. My tongue has been just awful since my IVSM. It's slowly clearing up, thank goodness, I'm sleeping like a log now but as for crawl in and walk out not so much.

It's been 4 days since I finished my IVSM and so far no change whatsoever. If I had to say anything perhaps a bit worse. I was having significant trouble walking and the pain was overwhelming. The pain has gone back to my "abnormal" normal but my walking has not improved at all. I'm still having to use my wheelchair.

But I'm holding out hope that things may change. With this crazy disease one just never knows.

[piper]

Laughing with you, not at you.
I loved IVSM.

Yes, high blood pressure, metal mouth, horrendous thrushy tongue and insomnia. But it worked, and it worked fast.
Crawl in, walk out. Literally.

Usually the positive anti-MS effects lasted a good, long time.

The drugs make you energetic, a bit hyper and manic, and that will change when they wear off.

I had to have Xanax, so's I could sleep.

Can't have the 'roids anymore, lest my brain explodes.

What do you mean 'lest your brain explodes'?? How do you know when you have had too many IVSM treatments? I hate them, but I do rely on them to help me through flares from time to time.