Feeling worse one week after Solu-medrol?

[marie0610]

My boyfriend was dx last Monday (6/10/13) and starting a 3 day 1g Solu-Medrol infusion that same day. Besides the initial side effects (insomnia and muscle aches from low Potassium) he was feeling better and his dizziness was subsiding. However, yesterday, a week from the first dose, his symptoms began to creep back up and today they are worse. Is this normal? He's thinking of calling his Dr. but doesn't want to bother him if worsening symptoms is a common occurrence after the steroid treatment. FYI he was not given a steroid taper.

[Dreams008]

Very common. I have done both Solumedrol and Acthar Gel. I normally don't have terrible side effects while on the drug, but it's after when I feel the negative effects. I don't quite feel myself for about 2 weeks after a steroid treatment. Some of my symptoms are dizziness, my head feels loopy, like it's heavy on my shoulders, very weak legs and arms, extrememly tired, and I gain a LOT of water weight. Last time I gained 10 lbs of water weight and my feet looked like the Nutty Professor He can expect to feel unwell for about a week to two weeks after. It's a potent drug that went into his body and it's called the "crash" that happens after. His appetite might increase as well. Limit salt intake. Make sure he's eating a lot of potassium. Baked potatoes with a little sour cream is a good food idea. They contain a good amount of potassium...more than bananas...and hardly any sodium. Getting through the work week is rough, so he may have to take a couple of days off. I have a desk job, so thankfully, am able to sit most of the time. Feeling weak and exhausted is very common after Solumedrol. I actually had to have my mother come stay with me one night because I just felt so bad. But, it will pass Give it time.

[marie0610]

Thank you so much for your great information and advice. It's so appreciative. This is still so new to both of us and, although his Dr and nurses are wonderful, they didn't quite tell us what to expect. So thankful for this site and for helpful people like you

[Dreams008]

Still very new to me as well. I was diagnosed Oct 2012. I would recommend calling the doctor only if a symptom is interfering drastically with daily life. Because Solumedrol can lower the ability to fight infections, I came down with shingles on my scalp...ouch and itchy...so I had to go to the dermatologist to get put on some meds.

Otherwise, there won't be much they can do for him if he just calls up and says he doesn't feel well. Make sure he's drinking a lot of water. Be careful of sugar, as steroids can raise a person's glucose levels. Remember, that even though he just completed the steroids a week ago, they are very much still working in his system.

The steroids I just finished, I'm told by my doctor, don't kick in until 2 to 3 weeks after. I normally get a CBC of my blood after a couple of weeks off the steroids to make sure all my levels are ok. He may have a slight increase of his WBCs, but that's because of the Solumedrol my doctor told me, and it eventually goes back to normal.

If you read WebMd, it says steroids can raise your WBC count, so don't be alarmed. As far as you, be patient. I got very cranky while on the Solumedrol and after. Be very patient and understanding if words come your way. Don't be offended. Steroids really mess with emotions. Hope he's feeling a little better within another week.

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[michelerenee]

Thank you for this post and all the answers.

I just had my first infusion today and one more tomorrow.

I have a terrible headache, some nausea and general ickiness afterwards.

I am hoping to feel the beneficial effects sooner rather than later.

Good luck to all of you and thank you for the informative responses.


Michele

[marie0610]

michelerenee: good luck with your infusions. From what my bf experienced, it seems that the headache and "ickiness" is pretty common. He had a headache until about 2 days after his last dose - I told him to take something for it but you he's a man so he's stubbron haha. Hang in there - drinking water defintely seemed to help. Also if you are having the muscle aches like he did due low pottasium (solu-medrol can cause that) eat a couple bananas and that should help. Take care

[lorib]

I usually do okay with steroids and the taper following infusion. However, when I started getting allergy shots a few years ago they gave me some steroids to knock out my immune system so I could have about 6 months worth of shots in 4 hours.

Everything went okay, but the next day I called the nurse at my neuro's office in a panic because I thought I was having a relapse because my MS symptoms were active . She said I was going through withdrawal from the steroids and it should be better the following day. The next day I was better, but I learned that it's not a good idea to stop high dose steroids cold turkey!

[marie0610]

Thanks lorib. I think if he ever needs steroid treatment in the future we are going to request the taper - seems to cause less "withdrawl" that way.

[marie0610]

I'm glad you warned me about the emotional/crankiness side effect. I witnessed that today. He had to cancel our plan because he had an emotional breakdown about not having clean clothes! Poor guy. Thanks again for all the insight and I wish all the best for you

[Hannah Brintnall]

I'm wondering why he WASN'T given a taper. My symptoms were AWFUL when I was on IV infusion and stayed awful for the 2 week taper. In 2 weeks I managed to gain 25 lbs of water weight, had shortness of breath, fatigue, insomnia like you wouldn't believe, and felt the desire to eat everything in sight, and still want more. Once the oral course of steroids were gone, it took almost 2 weeks before I felt slightly "normal" again.

Hannah

[marie0610]

Hey Hannah. Sorry you had a hard time too. I have no idea why he wasn't given the taper. He even asked the infusion nurse and she said sometimes the Dr prescribes them, sometimes they don't. I was surprised because even when I was on an obviously much smaller dose of prednisone for a knee injury I had a taper. Who knows