For the MSers...How do you decide when to take Solu-Medrol?

[Sarahsmom46]

I see a lot of people going on solu-medrol lately, some multiple courses within a short period of time.  This really concerns me, especially in regards to the potential serious side effects - some which I have experienced personally.

My neurologist is very conservative about prescribing solu-medrol   He's explained to me that he doesn't give steroids for sensory symptoms like tingling or feeling numb unless it is a new symptom.  He orders an MRI to see if there is any change. If there's no change, then he is also hesitant to give steroids.  He told me that steroids can do more harm than good and believe me, I know this is the case as I've had some memorable side effects from it.

So, how do we make this decision with our doctors? I am definitely still a newbie MSer and my thinking might change in a year or more so I am really looking to those of you who have done the solu-medrol route to see if what your experiences have been like and if you truly believe that taking the steroids made the difference in the course of your relapse.

What is your experience with this and honest opinion about when it is appropriate to use steroid therapy?  

Thanks so much for your feedback. I know we have discussed steroid use before, but wanted to get a fresh opinion.

Julie

[Sarahsmom46]

Thanks to you and the others who have commented on when we should take IV-SM.  

I recall being told in the past that we can build up a resistance to the IV steroids over time.  I think this is something that can happen with any drug, antibiotics in particular.  I certainly agree with you guys to save using them when we most need them.

I am now pre-diabetic as well largely caused by not only the IV-SM, but steriod use for my asthma. It is a cummulative effect and partly genetics.    

So the question I need to ask myself when a relapse is occuriing is whether to take steroids or just ride it out.  I know the benefits of steroids, but I also know the down side of resorting to them.  

Thanks you guys. I feel better informed.  

Julie



  

[shermay]

Hi Julie,

I too have had really bad s/e to taking solumedrol.

From what my Neuro has explained to me, is that the more you take it, the less effective it is likely to be - after a period of time.

On My first dose, I had a rebound, and from there on in after taking so many courses of steroids, I am now pre-diabetic:/

Solumedrol only - under normal circumstances - speeds up the recovery of a relapse, so that no futher damage can be done.   hmm

IMO, take them when you really need them.   They are the back-up.

Hope this helps,

Debs x

[GrannyJo6]

Just a quick P.S. to my earlier post: Evidently, solumedrol interferes with the contrast dye used in the MRI. My neuro didn't do an MRI first; he waited until about 6 weeks after the solumedrol to let it pass out of my system. I think I stated that it stays 6 to 8 weeks, but it is really 4 to 6 weeks. The MRI showed nothing! But I definitely had severe symptoms. He was more concerned with symptoms than what the MRI showed.

It truly is a personal decision between you and your doctor, as so many others have stated. I think neuros prefer to wait to use it for the more severe symptoms, like Zacksmomi said. But YOU have to be at peace about it!

[Zacksmomi]

I have to admit I am one who has had waaayyyy too much solumedrol.  I am about to start my 4th treatment in 13 months.  This is my second year with MS and I have gone downhill tremendously over the 18 months that I have had obvious MS problems.

My first attack my right arm went competely numb and spastic and pretty much paralyzed for about 6 weeks.  It got better and I have little residual issues like constant tingling in my hand, insane itching periodically on my finger tip.  But my point is, I had an attack and improved without steroids (did not know it was MS at the time)

The times that I have chosen to accept the solumedrol is when the attack is effecting my ability to walk, my vision and my balance. Right now I am passing out from total fatigue 2-3 times a day and have barely made it through dinner before going to sleep for the evening.   I do wait until I get to this point where I can't take it anymore before I request a visit to the neuro.  I am always torn because what if the attack stops where it is and I am taking the drugs for no reason.

My neuro and I discussed it, and his thought was more along the lines of, Where will I end up if we let it continue.  Sometimes the solumedrol makes me feel better within days (except the side effects) and other times it takes a week or two.

I do have adverse reactions to the steroids that I don't like at all, and it is obviously a huge weighing the odds decision...which is worse for me??? Comes up a lot with this disease.

I have also had MRI's both before, and during solumedrol treatment on seperate occasions and the MRI's have shown no sign of enhancement which to me is confusing. I have actually asked a bit about this in one of my posts recently and am waiting to hear what people have to say on that subject.

As Quix often repeats, the MRI is not the reliable source of this disease, our sx's are what the Dr's need to treat and listen to.  

I hope some of what I wrote here helped.  It is all a personal decision between you and your Dr's.  Every person is different, their reactions to the treatment are different, and the way our bodies process the poisons are different.  

I am going to UCSF in 2 weeks and I am going to ask them about that very thing so I will let you know what they tell me.

Best wishes to you
D

[MSChrise]

Sarahsmom,
I agree about waiting too long to start from when symptms start.   I started a relapse about 3 weeks or so ago and waited, then did 3 days IV Solumedrol,  Today was bad and dont feel improvement in my symptoms, if anything they are worse.  But I also  got sick with diverticulitis right after finishing the IV.

And this time on the steroids for me was much worse mentally.

Today my left side of face is numb,  balance is completely shot, and feel like i have snakes crawling in my calfs as well as spasms in upper inner leg.

Yuk!
My neuro is not quick to do steroids, but she was a bit upset with me that I waited so long to do somthng about this flare.

[Sarahsmom46]

I absolutely agree that steroids are a miracle drug, no doubt about it.  But it is not a cure all.  I think I am early in my diagnosis to truly understand the cost vs benefit of IV-SM, but based on my past treatments, I am realizing how serious the side effects can be especially if the treatments are done so closely together.  

I think the question I was trying to convey is how do we know when it is a good situation to take steroids with MS relapses. I recall reading somewhere, that if you wait too long after the symptoms occur that the steroids won't be of much help.  

Also, how many of you guys are sent for an MRI when you are having a relapse and before the doctor decides whether or not to give steroids?  

I just want to be a better informed patient.  

Julie

[GrannyJo6]

I have only had one experience with the solumedrol and it was like a miracle! I had sudden double vision and trouble walking. I saw the neuro the next day (Friday) and he got me on solumedrol the following Monday. I was on for 5 days in a row. By the end of the third day the double vision was gone and by the end of the fourth day I could read again! I still, two months later, have a little residual nystagmus in my right eye and I need the cane when out and about, but not around the house. Fatigue is keeping me off work right now.

My neuro gave me lorazepam for the anxiety it would probably cause and Ambien for the insomnia it would probably cause. He did this based on the fact that I did get shaky and lose sleep when on only 40 mg for 5 days for asthma. It helped SO much!

I know long term prednisone is very bad, and 1,000 mg a day for five days is a LOT, but it only lasts about 6 - 8 weeks in your system and then is gone.

It was very much worth it to me! I trust my neuro completely and if he said I needed the solumedrol, then I'm there!

Hope that helped!
Jo

[addicted2harleys]

Hi, Julie-

I have only done the Solu-medrol route two times in 5 years.  I, too, worry about the serious side effects.  When I moved here to live with my mom, she was on very high dosages of Prednesone daily for a medical condition she has that I cannot pronounce.  lol  

Anyway, it concerned me that no one seems to be concerned with the side effects she could have down the road due to this.  I screamed and yelled, screamed and yelled some more, and finally got her off it completely.  I am so glad I won that battle with her health and also shared with her what could happen if she stayed on it.

As for me, I am undiagnosed as of yet.  The first time I decided to go with the Solu-Medrol, it was at my primary docs insistence.  He truly felt it was needed for me at the time.  I was in a pretty bad exacerbation.  I am glad I went ahead and took it that time.

I am exacerbating right now and again took the Solu-Medrol 2 days ago and am on taper pills now.  I am glad I took it again.  The symptoms I am having this time are both new and old, though the old ones got much worse.  

For me, the steroids definitely made a difference in my flares.  This time I waited about 3 weeks before caving and taking the Solu-Medrol.  It helped me from being pretty much severely debilitating to being able to function better. I don't regret taking them.

From what I understand about steroids, they are okay as long as you only take them for short periods of time.  

Anyone else have any info on this?

Addi