Advise Needed - Steriod Question

[Csativa]

This is probably a question for my neuro, however, I'm interested in what peoples experiences are.  I tried looking at the archives but could not find a specific enough answer.  

As with many medical conditions, there is typically a window of opportunity as to when tx should begin - when it would be more effective; but not always the case.

When treating MS symptoms with steroids, is there a point at which it becomes useless to administer them.

I assume that flares are either due to development of new lesions or from inflammation?  Or am I mistaken in this regard?

The reason why I ask is that I have multiple symptoms, some of which fluctuate in intensity.  Does an increase in intensity always mean there is inflammation, or is it just due to nerve damage.  It seems that if it were nerve damage, the symptoms would be consistent.  So sometimes I wonder if I should ask for treatment or not.

This darn disease make me feel like I'm raking leaves in the wind.

[Grewy]

Recently having my worse relapse since giving birth to my daughter 9 yrs ago.  Now on steroids to help my walking very wobbly.  Neuro now telling me I an moving into SPMS....arhhhh.  Anyone have knowledge to stop my brain panic.

[tonyad]

   Hello,  Just thought I would throw in my two cents.....

    My Neuro is very cautious about Steroids and rightfully so!  Steroids are nothing to play around with!  The long term efects are not worth it (in my opinion).
He said (my neuro) that if one has been on Roids more than 2 times in a single years time then you are putting yourself at a HIGH risk for long term effects.

   Now of course we are talking about taking them just for your basic, everyone has it, MS symptoms. He does NOT believe in throwing someone steroids just for a symtom treatment....I hope that makes sense!  

   SO, with that being said...I RUN from steroids for as long as I can!
I agree with Alex's statement:  What is causing more symptoms inflammation or nerve damage is the million dollar question.   Plus, if you take the Roids and the sx come back a week or two later...what have you accomplished??....must not have been inflammation  Huh?

   The medical community seems to have a particular blind spot about these drugs, refusing to believe that steroids can cause the terrible carnage that the manufacturers have long admitted to. For over 30 years we've known that steroids can routinely cause over-activity of adrenal hormones, which produces Cushing's disease. They can also cause muscle wasting, hyperglycemia, water retention, bruising, insomnia, serious mood changes, menstrual problems, impotence, loss of libido, or even allergic shock and diabetes. (Source: Physicians Desk Reference).

Ok, I'll stop rambling.....Like I said, just my two cents!

Peace,
~Tonya

[HVAC]

The weird part of PPMS is steroids are never offered. I live with vertigo most days. I ride horses, climb ladders, ride bicycles. It is amazing what you get used to when you have a symptom for decades.

I know people with RRMS who have such bad attacks they are in the hospital for months in those cases steroids are a no brainer. No one should suffer such set backs.

I guess in all cases it has to be a decision between you and your doctor.

Alex

[lovemy6monkeys]

My neuro is probably a bit freer (that word looks weird LOL) with the steroids than others. He feels if the symptoms are having an impact on your daily life then steroids are worth it.

I was given steroids for vertigo (my first suspected attack) and then a month later for burning/stinging/buzzing feeling that went from just my feet (I've had that since November) to traveling up my right leg to my knee.

From here on out I'm going to think long and hard about doing steroids. Vertigo, yes, I'll use them again if that comes back. I cannot care for the kids if I can't even walk straight. But the buzzing/zapping/burning/etc feeling I will probably just ride out the symptoms.

~Jess

[Lulu54]

Hi Frank,
For those of us who coexisted with this MiSerable disease for a long time until our later years  without knowing it, it seems to be so much harder to determine when to call our doctors.  We know better than to blame everything on our MS and that muddies the thinking process.  Or at least that is true for me.

Everyone has already pointed out that steroids do not solve our problems and are just used to reduce the symptoms.  Chosing to take this course of meds requires serious consideration because there are so many side effects.  

As for letting go and not worrying so much, I promise you that time does come - but it takes a while for your brain to adjust to the idea that we are living with a lifelong disease which presently has no cure.

I realize I am rambling - hopefully something in here makes sense.

be well,
Lulu

[Csativa]

Sorry, I called you Sarah before.  Thanks again, Julie.  You too Sarah, and Alex.  Oh what the heck.  Names kill me.

Frank

[Sarahsmom46]

It makes perfect sense to me.  I've been there too, done that and all the worrying along the way just made it that much harder to deal with.  

When I finally let go of what was happening to me inside my body, I was better able to focus on what was going on outside my body.  Now, does that make sense?  I mean, I couldn't control what was happening with these relapses.  The only thing I could control was making sure I was eating properly, exercising to the best extent that I could, and even keeping dates with friends after work. All that helped me keep my mind off this MSerable disease.

Hang in there as best you can and please don't waste your precious energy on worrying.  Life is just too short for that.

Julie

[Sparkysarah]

I was also interested in your post and still fell very much like I am on a learning curve. My tendency is not to make a fuss, and I guess I have got so used to some sx over time without realising it was MS that now new sx don't always feel like a big thing.

However I now know that if sx last longer than 2-3 days then it is worth making that call and it is not making a fuss...but taking care of myself.

Thanks for an interesting post.

Sarah

[Csativa]

Thanks Sarah!  This is exactly what I was looking for.  

I'm feeling left "in the air" so-to-speak.  I have been living with so many symptoms for so long w/o a dx that I now that I have a dx, I find it difficult to discern what is exactly going on with me (hope that makes some sense).  I guess it will come with time.  I probably need to let go a bit and stop worring about it so much.

[Sarahsmom46]

This is a very good question and one I asked a few months ago when I was in a new relapse.  

Steroids are serious business and the decision to take a course of treatment should be weighed very carefully.  There is a point that if we wait too long before taking them that they aren't as effective for the symptoms.  Alex was right that they don't stop any damage to the nerves that is occuring, and are primarily to help reduce the length of the symptoms, but again, they have to be given within a reasonable amount of time.

My MS neuro told me back in April, when I had my last relapse that if the symptoms are going on for more than a wee, that the steroids will cause more problems that it helps.  He tends to be very conservative about giving steroids though and your neuro might be coming from a different school of thought.  Now I know to call him if sx last more than 2-3 days instead of 2 weeks for example.

During that relapse I was given steroids too late and they did cause more problems than they helped.  

This is a good question to bring up with your neuro.  You need to know his/her protocol for treating with steroids so you know how quickly you need to get on the phone if you feel you are going into a relapse.

Hope this was helpful.  

Julie

[HVAC]

From what I have heard two MS Specialist say in talks. Steroids do nothing to help the stop the disease process of MS they are for symptoms. They both said in many cases you could go with out steroids.It may mean the symptoms are with you longer.

What is causing more symptoms inflammation or nerve damage is the million dollar question. If it is inflammation theoretically it should respond to steroids.

Alex