3 weeks after steroid treatment

[mm247]

And symptoms are creeping back. Ataxic walking, difficulty rising from chair, pain down legs and overall weakness. Is this the norm?
How often do you get steroid treatments? Do I really have to live like this for three months before another MRI. I feel so incapacitated as the day goes on by 6pm I am in bed.

[SNOOPY]

Hi mm247,

Steroids are used to treat acute exacerbations (relapse, attack, flare-up). Not all exacerbations require steroids and sometimes steroids are a short term solution to a long term problem.

In the case of MS, steroids do not fix anything, they can shorten an exacerbation. The more steroids are used the less effective they become.

If you have MS, having residual symptoms, symptoms that come and go and permanent symptoms is normal. Living with MS usually means learning to live with symptoms and possible limitations.

Physical Therapy (PT) can be beneficial, for some. PT and exercise can help with pain, mobility issues, fatigue, and weakness.

Please contact your Neurologist for the best advice and test results.

[mm247]

Things got worse today

On the way to work my double vision kicked in. I was so surprised because it usually only happens when it is late at night or I am really tired. It went away after about 20 minutes.
A few hours later I really had the sensation to go to the bathroom but could't go, a symptom I had before my steroid tx. I ended up having to self-cath
My neuro is able to see me tomorrow afternoon. I feel so scared, and probably every emotion everyone else has felt here. I just don't know what is going to happen next

[ejonesbowlie]

Same here

I had my first steroid treatment about 6 weeks ago. As you have experienced, at about 3 weeks I noticed some of my symptoms coming back. Now at 6 weeks, I can say with confidence that most are back to stay. My main symptom has been spasticity and this is the one that the steroids helped with the most.

I guess the sad reality that I have to accept is that I am probably going to have to find other ways to deal with my situation as this looks to be where I am going to stay with my MS for now. I have started Physio and PT which I hope will help.

In my case, my neuro is going to try "pulse steroids" (high dose, once a month) but only doing this in an attempt to give me some relief and slow down my progression. Even this may or may not work and likely will not be able to do it long term due to the long term affects of steroid use.....also I have heard that steroids start to lose their effectiveness over the long term

So really just wanted to let you know that I sympathize with your situation. It is hard when you do get some relief and the symptoms and then you are back to square one.

Hang in there...I guess not much else we can do

Beth

[mm247]

me too!

Neuro wrote scripts for 3 things
1. visual evoked potentials
2. audio evoked potentials
3. PT for balance and ataxic gait.
As for the double vision I am to pirate patch it up for awhile and cath as needed.
Has anyone had 1&2 done?

Watch out for those steroids, the side effects suck! hungry and emotions all over the board.

[sherm]

I may be in similar straits. I had a 5 day infusion finish almost 20 days ago and then had 10 days of a decadron taper. My legs are still a bit iffy and I can't really tell if they're just staying the same or getting better or worse.

Also, I had no issues while on the steroids for the majority of the time, but with 2 days to go on the taper, I started getting ridiculously itchy. The next day I broke out into a rash covering half my body and I still have it now. It's awful. Anyone else get this? I assumed it was withdrawal and my body trying to get back to normal. I'm seeing my neuro tomorrow so I've held off on doing anything about it past calamine and the occasional benadryl, which appears to have no effect at all.

[Kimba22]

The next day I broke out into a rash covering half my body and I still have it now. It's awful. Anyone else get this? I assumed it was withdrawal and my body trying to get back to normal. I'm seeing my neuro tomorrow so I've held off on doing anything about it past calamine and the occasional benadryl, which appears to have no effect at all.

Hi Sherm,

Sorry to hear this is happening.

Does your neuro know about the rash? That sounds like an allergic reaction to Decadron, not that your body is adjusting to withdrawal. You can develop an allergic reaction to a drug at any time, even if you never had one to it before.

http://www.nlm.nih.gov/medlineplus/d...s/a682792.html
http://www.aaaai.org/conditions-and-...reactions.aspx

I'm glad you are seeing the neuro tomorrow, but if it were me, I wouldn't take any more of the oral steroid. Tapers aren't usually routinely prescribed anymore after high dose steroids. So you should be fine.

Please let us know what your neurologist says.

Good luck ,