Multiple Sclerosis (MS) Support Group

How horrible! Please take something to sleep! I can only imagine how you feel and it is painful to even think about! I was very fortunate in that the steroids made me feel terrific! Never felt or LOOKED better after it! Evidently I have serious inflammation issues that really age me. After my course of roids I not only felt fantastic but looked younger. Having said that, the first time I had them I was in the hospital and had other issues that were causing me problems but sleeping was never a problem. The second time I had them, I had to pull some all nighters (was able to take the treatments as outpatient) for a project and so it was actually a blessing. Of course, I crashed the next week but the project came off beautifully! I wish I could do something for you, I really do. That is one of the drawbacks of this forum, we can "be there" for each other only in a cyber sort of way and it is a very helpless feeling. I hope you have friends and family that are wrapping you up in arms of love and helping to bear your burdens in practical ways as well.

I feel that way. My doctor told me that I would have lots of energy and I was so disappointed. I was tired, but couldn't sleep I just had to rest. My symptoms improved, but my body felt exhausted. and that feeling last for about two weeks after the last dose. I did finally start sleeping after about 3 days though. She gave me Lunesta 3 mg to help with the insomnia. Hope you start feeling better soon. I hate steroids, but they seem to be a necessary evil.

the "/" didn't come through, it was a 90 minute steroid infusion not 12 hour. Previous steroid I felt so great the next day. Some I read that they had to wait up until 6 weeks before they felt the effects. So this is unusual for me. My ON has improved after the first steroid treatment as I expected for me. But I have become so tired and headache-y.

I am concerned I have 2 things going on. The ON which was MS & this fatigue & headache that wasn't. Since I use Tysabri the concern is rather large.

I have read that steroids affect people differently & they effect each person differently each time they have them. So that may be happening to me. I kind of would like to get an MRI. The first time I did steroids, I had a multi symptom attack with an MRI that describe "extensive with matter damage likely from MS" The doc ordered the IV steroids be done over 4 hours because of headache. I would have nothing to do with that and demanded they speed it up, because I didn't get headaches. Well I hasve them now. Perhaps that is what is making me so tired. I will request they slow it down tommorrow because of headache. My BP has gone from 120 t0 106 in two days..
I know that causes fatige. I will try to drink more in case that is happening. I don't have temp control in my appartment and it is over 80 here because of a warm day that followed acold days. The apartment is heating as if it were cold. It will coll down at night so that will help.

And your reply Neener, thanks for posting it.

It may be on of those "steroids affects each individual person differently each time they get them". For sure I will request they slow it down tommorrow. Thats not something I ever thought I would ever do.

I believe the steroids can cause headaches, but I would of course report everything to your doctor especially since you are also on Tysabri. You certainly don't want to take any chances. I've had steroids 3 times in the past year and have felt worse after each round seems like it gets harder on my body each time. My doctor does slow down the infusion with me and they are done over a 2 hour time period. My blood pressure is unstable and she worries about that. I'm not sure that it helps with the side effects, but it allows her to monitor me closely during the infusion. My doctor has an infusion center in her office with recliners and an RN. It's nice because she's right there if anything comes up and I don't have to go to the hospital.

It gets worse after steroids, huh/ That was what I was comming back to ask you. Before things got better for me after the first u=infusion then continued to get better. After about two weeks after I finished thre taper they would get worse. Once the doc prescribed a second round of steroid for the worseninfg 2 weeks later. Once I didn't say anything and nearly lost my DL. Then a thirs time half stayed better half worsened over time & stayed wiorsened until present....

But I imagined the people who had to wait for about 6 weeks to feel improvement from steroids did not worsen during that time.

My On is much better after the steroids, everything else is worse.

You worsened and then improved.
I improved right away & sometimes stayed improved and sometimes didn't
I imagined some people stayed the same but finally felt an improvement after 6 weeks.

This Tysabri is so frustrating, unless the nurse is involved in Tysabri they have no idea what it is, they are only concerned about the infusion they are giving.

Thanks for the moral support. I really do want to call the doc on Monday, but feel like such a wimp to be doing it. And as I said, the steroid infusion nurse would not understand my concern.

It really does sound like you need to speak with your doctor. The only thing that gets worse for me is my vertigo and dizziness which I have had along with other symptoms with all of my last 3 relapses. Generally all of my symptoms resolve within about 2-3 weeks after getting solu-medrol. I do generally feel terrible for about 2-3 weeks after getting steroids generally weak, extremely fatigued, loss of appetite, difficulty concentrating, etc. In your case however since you were having headaches and other symptoms before you had steroids and you are on Tysabri I would still talk to your doctor see if an MRI might be warranted and not worry about feeling like a wimp. If I were in your shoes I would do the same. Take care.

I hope you are starting to feel better & will contact your Dr if you havent already,.
I have had headaches from the infusion, real bad fatigue but not able to sleep - 2 different things I have found, the Dr prescribes sleeping help for me every time.
I always have to drink a lot when on the drip, regardless of if in hospital or go in each day. It usually takes me till day 2 to start improving but I dont get the energy burst others talk of. I get teh hunger after I am off them or on a taper down drip.
The last time I had the drip I reacted to it & went real read & lumps/sores all over so they stopped it, then gave me the rest real slow after a antihistamine. I had never had that reaction before so it does show that it can affect you different each time too. I am not allowed to have any more now (got cushings syndrome from too much cortisone) so dont know what happens next time, just hope it dont happen too soon.
Take care of yourself & seek medical help as soon as you can, if the nurse doesnt know about tysabri can she call a dr to see you?
Gentle hugs

I've had that affect. The first few days I was exhausted but by the end of the course I was bouncing off the walls and easily irritated. Not to mention the insatiable appetite. I ate a huge veggie platter (the kind they sell at the grocery store for parties and stuff) in two days. Along with second helpings at every meal. I even went to Boston pizza for dinner one night and had cheese cannelloni's and afterwards went to Dairy Queen for a peanut buster parfait

I never got the energy either. I just felt "wiped" from the treatments. My doc had talked about sleep aids when he set up the tx but I was already on Trazadone. He told me to double it because I would not be able to sleep. He was right!
It took a long time (months) to see any significant results. Can't imagine how long it would have taken without tx!