High dose prednisone withdrawl

[Pistachio]

I'll try to be coherent. I'm not doing well. But I need some hope.

Found first cervical lesion. Was prescribed 1250 mg, daily, of prednisone for 5 days. This is equivalent to the daily IV dose one would get. While on it for 5 days I had all the usual fluid retention, feeling irritable, lots of energy, etc.

Wednesday morning (2 days ago) was my last dose. Yesterday I was absolutely exhausted. I worked but it was brutal. My problem is today - super tired (slept over 10 hours and napping) but most of all weak, wobbly and I feel HIGH. My muscles feel like I have the flu - very achy. It would be very unsafe for me to even drive in my current state. I'm drinking water like crazy.

Can anyone share how long it took to feel back to normal after 5 days of high-dose prednisone for a relapse? Do you have any suggestions or advice.

I just want to feel better. To feel anything but this, right now. I wouldn't wish this on anyone.

[pennstater]

Sorry to hear. Were you offered a Prednisone taper? That may help ease the withdrawal. I never tolerated the taper well, so went without it. It usually took a few weeks to feel better for me, but my symptoms weren't quite as severe as what you described. Hope you feel better soon.

[Seasha]

So sorry to here this.

I was given the same 5 day high dose prednisone steroid without the taper years ago to help with optic neuritis. UGH. The day of my last dose I thought I was going to die of a heart attack and was very agitated. My pcp Rx'd Valium to calm my nervous system down. Within a week I was feeling more like myself. It did nothing to help with the ON which finally subsided in a month or so time. I will never go that route again - especially without a taper down.

You might want to ask about Valium. If you are working, it would be better to take at night. It's good you're drinking lots of water.
Hang in there! Thinking of you and hope you feel better soon.

[REG53]

I am so sorry for what you are going through. I had 5 days of solumedrol for a bad relapse I had years ago. I felt like a truck hit me. Fatigue was really bad. It took two weeks before I started feeling better.
Hope you feel better soon.

[Mamabug]

I was always given the taper and that helped.

Sorry for what you're going through.

- Faith

[Seasha]

How have you been feeling, Pistachio, now that it's been almost a week? Hopefully, much better!

[Pistachio]

How have you been feeling, Pistachio, now that it's been almost a week? Hopefully, much better!

Hi Seasha, thank you for checking in on me. I started to rally around Saturday night. Sunday was "okay" and by Monday I was mostly okay. I'm still feeling the odd lingering effect. My blood sugar really took a hit on Saturday and Sunday. It's better now but just the slightest bit off. It continues to improve each day. Apparently blood sugar can be adversely affected by prednisone.

One positive I noticed is how small my legs are now. I never knew I retained any water (normally) but now that I have whooshed out most of the steroids water retention my legs are the size they were in my 20s! I feel much less bloated than I normally am. I guess I did have a lot of inflammation going on. I'm 51 now so that's saying something!

[Seasha]

Good to hear! I'd love to have my 20 year old legs again. In fact, my whole body!

[Kimba22]

Glad your feeling better, Pistachio. Let your neuro how you felt, and ask if will prescribe a prednisone taper if you need to take high dose cortosteroids for a flare again. I've had some neuros that always did and some that normally didn't.

blood sugar really took a hit on Saturday and Sunday. It's better now but just the slightest bit off. It continues to improve each day. Apparently blood sugar can be adversely affected by prednisone.

Yes, that's one of the possible side effects. I don't normally have any problems with my sugar levels, except when I've been on IV Solumedrol for flares. I've usually been in the hospital when I had it, so it was checked every morning. It's gotten high enough that they've given me insulin shots for it!

Also good to hear your less bloated now, and are retaining less water than you were before the prednisone.

I'd love to have my 20 year old legs again. In fact, my whole body!

Me, too!! I always thought I looked pregnant for a few days after treatment with steroids!

[mike423]

So have been reading about taper off pregnizone and I have 4 days of 15 total along with original 3 days of IV left. I've had MS for over 20 years now and been on 7 different therapies and have never felt this terrible. Went on steroids after first dose of Ocrevus 2 weeks ago for vertigo and walking difficulties with insane RLS. In my research, or my detective skills, joking of course, I've noticed that vertigo is a side effect of pregnizone. WTH. Sorry, so my question is as I can't figure out how to post a new thread, is there a light at the end of tunnel? Regretting ever doing these steroid treatments as done it 3 other times in the past without success of any kind. Anyone have any ideas or thoughts. I'm on gabapentin for sleep at 100mg each night as I was originally on 100 day and 100 night. Want to go back to 200 a day if not more. Obviously looking for help or advice regarding any of these issues and thanks everyone in advance. Thanks Mike423

[pennstater]

Hi Mike423.

Sorry to hear about your relapse. I personally have never had much luck with steroids resolving vertigo for me. It helped with other symptoms, but not that.

Depending on the cause of the vertigo, vestibular therapy may help. It is a specialized form of PT. I have had some success with that. Meclizine also helped some, but it was more due to the fact
it made me really sleepy and allowed me to sleep thru a lot of it.

I tried Gabapentin before for nerve pain, but it actually made me dizzy. It seems if any medicine says may cause dizziness, it does for me. But neither IV solumedrol or Prednisone did that. Just everything else.

My only real advice is to discuss with your Neuro and see if you need to continue the Prednisone taper. Some neuro's will allow you to discontinue if having intolerable side effects.

As for starting a new thread, when you open the main forum, scroll past the sub-forums and you should see a red button that says "New Topic"

1. Click the New Topic Button
2. Enter a tile and text in the text box
3. When finished entering text, hit the red Post button below the text box
4. The post will be visible once a moderator approves it

Hope you feel better soon.

[Pistachio]

So have been reading about taper off pregnizone and I have 4 days of 15 total along with original 3 days of IV left. I've had MS for over 20 years now and been on 7 different therapies and have never felt this terrible. Went on steroids after first dose of Ocrevus 2 weeks ago for vertigo and walking difficulties with insane RLS. In my research, or my detective skills, joking of course, I've noticed that vertigo is a side effect of pregnizone. WTH. Sorry, so my question is as I can't figure out how to post a new thread, is there a light at the end of tunnel? Regretting ever doing these steroid treatments as done it 3 other times in the past without success of any kind. Anyone have any ideas or thoughts. I'm on gabapentin for sleep at 100mg each night as I was originally on 100 day and 100 night. Want to go back to 200 a day if not more. Obviously looking for help or advice regarding any of these issues and thanks everyone in advance. Thanks Mike423

To be honest, for me, the prednisone days were terrible. I absolutely hated being on that stuff. After I was done ( I had no taper) it took me about 5 days to get back to feeling even remotely normal. All in all it probably took 10 days, post prednisone, to fully recover.