Does anyone feel worse after steroids?

[steph74]

I am currently being treated with 1 gm Solumedrol once/month.  I had a three day course last spring and felt AWFUL afterwards.  I did eventually feel a bit better overall, so maybe it was worth it.  Even the one day dose makes me feel pretty lousy.  My sx actually seem to get worse for a few days afterward!

I'm not dx, but symptomatically fit the diagnostic criteria (we'll see what the 3T MRI has to say...)  If the steroids make me feel worse for a few days, does this suggest that it's not an inflamatory process causing my sx?  Anyone else feel worse after solumedrol?

Stephanie

[steph74]

Thanks, Rena.  That's really helpful.  I had a horrible withdrawal when I had a three day infusion (no oral Prednisone weaning)--it hurt to be touched, every part of my body was in pain.  My doctor said if I had a three day course again she'd give me a step-down so I didn't "crash" next time.  But then she ordered a 1 day/month course.  I'm not sure I need it at this point, but she wanted to do something because I'm not dx and therefore no DMD.  I am starting to feel like the treatment is worse than the sx.

It's interesting that you mentioned potasium.  I've never heard that before, but after this last dose, I was eating bananas and potatoes like crazy, they just looked so good!  So maybe I'll try that ahead of time if I go ahead with the next dose.

Stephanie

[Rena705]

Hi there...we haven't spoken before but I wanted to comment on your experience.  

I have had IV Solumedrol treatments 4 times now (all three day infusions) and all but one were followed up with weaning Predinsone.  The first three left me feeling pretty crappy but it stopped the pain and the symptoms I had been dealing with were lessened considerably.  However, the last infusion was not followed with Prednisone and it was the worst few weeks I have ever been through as the pain in my head did not abate (which was the main reason for the infusion in the first place) and I started having pain I think was related to Trigeminal Neuralgia in my face and gums.  It was horrible.  I also started to have severe fatigue upon awakening in the morning which is very frustrating.  I called the MS nurse at the neuro's office and was told that the Solumedrol is in your system for about 10 days but my symptoms would be noted and related to t he neuro...never heard back from them of course.  The pain in my head has returned intermittently but usually only lasts a day at a time...the final IV infusion did nothing to rectify the pain...it was just time as usual.  I also suffered from severe numbness in the left side of my face which has never really gone away but doesn't seem to concern any doctor so I just go on with life.

So to wrap it up...yeah, I have a love/hate relationship with Solumedrol but if I undergo another infusion I will know to insist on a Prednisone wean to allieviate the withdrawal symptoms which I am sure is what the problem was the last time.  Something you might want to consider is building up your potassium level prior to the infusion...low level potassium can wreak havoc with Solumedrol as well.  Banana's have the most potassium but there are other foods that contain it such as potatoes.

I hope that I have been a little help to you Steph...I feel for you honey cause it stinks when the cure is worse than the ailment!  hehe

Lots of Hugs,
Rena

[steph74]

I think that's how they're supposed to work, but I feel lousy for a day or two afterward, and my sx actually seem worse.  Then they gradually get better.  I'm trying to figure out whether the 1 day/month is worth it.  Does this happen to anyone else?

[Lulu54]

Stephanie,
That''s an interesting question - I would assume the solumedrol would make you feel better.  Have you asked your doctor about this?

I have no personal experience (yet!) with IV steroids.

be well,
Lulu