When Should Our Doctor's Prescribe Solu-Medrol or IV-SM?

[Sarahsmom46]

I have been entering a relapse for over a week now.  It is not the worst I've gone through, but it is definitely a change in my symptoms, which over the past 2-3 months have been really under control.  

I called my neuro yesterday to let him know what was going on - left a message with the nurse.  The nurse called back today to tell me that he is very conservative about when to give IV-SM.

She said if the symptoms are affecting my ability to stand and walk, then go to the ER.  Otherwise she said he will probably order PT. I asked what good PT would do me if I am in a relapse.  She's a general neurology nurse by the way not MS so not sure how much she truly knows about MS relapses.

I know every neuro can take a different approach to when to order IV-SM.  My neuro apparently wants his patients (according to the nurse) to be at a point where we can't walk.  I honestly don't know what to do.  Wait and see?  Push for it?  I'd prefer not to take steroids if in the end all will turn out fine, but what if this worsens my situation.

OK, here are my questions for anyone who might know from personal experience or what you have been told by your own doctors:

1. Can a relapse start out fairly mild and stay that way or can it start out mild and get worse and worse like an untreated infection for exapmle?

2.  Is there truly any grave harm in not taking steroids at all?

3.  What is your doctor's approach to prescribing steroids?  

I have been dx with MS less than a year and for as much as I have learned I still don't know when I should get IV-SM treatment and when to ride out a relapse.  I sure don't want to end up in a hosptial for treatment like last time and I want to be able to keep working while I get through this.  What to do?  

Need some words of wisdom or any advice would be great.

Julie

[coco31]

Gosh your all so good in your responses!!!!! Well done and thank you.

I hope a day will come when I can actually spot when I am having a relapse myself!!!! I think a lot of it with me comes down to denial..... I dont want to relapse. I dont want MS. But dont have a choice. I have to accept (which will lead me to my next post).

As for IV steriods I pay the same amount of money as I would for oral, but I know health insurance is a completely different system in EU than US. I opt of IV because it is belived to be more effective for severe symptoms and because it all that has been offered. I'm such a newbie to having MS..... maybe, just maybe I'll spot the symptoms of a relapse myself or at least admit they are there to myself.....

For now I'm just going with my neuro (whom I happily have complete faith in) and I believe that is half the battle when choosing medications and ways to go.

Good luck to you all and please see my post which leads me on from here about "denial" .......other stages and finally "acceptance".

warm, healthy wishes,

Sharon.

[Sarahsmom46]

Thanks so much to you all for sharing your experiences.  It takes a bit of time to figure out our bodies well enough to know when a relapse is a true relapse, doesn't it?!!  

I am still hanging in there.  I like Opie's advice about waiting to see if the symptoms of the relapse are worse than the side effects of the IV-SM.  My doctor feels very strongly about doing this as well.

We are ttrying to get my MRI results out of NIH from last Sunday's scan, but my MS nurse said it has been like trying to get something out of Fort Knox.  So, if the symptoms get worse then I need to just go to the ER and get treated and of course that will probably mean another MRI - YUK.  

I'm thinking positively that this will remain stable so it won't come to another hospitalization though.  Please send me good vibes on sticking to this + thinking mind over body exercise.  

Opie, I hope it won't be much longer before you have a bambino in the belly.  That will give you some much deserved respite from the MS, eh.

Udkas, I have said this to you before and I'll say it again...Why don't they just get you dx already.  Your TM has morphed into MS and that is as clear as the glasses that just came out of my dishwasher my dear.  Geesh!!!

Kathy, I am sorry that I don't know anything about billing.  I probably need to look into that now that you mentioned it.  

Sharon, you are so fortunate that you work where you do.  You have many people watching over you now.  Hopefully that gives you a sense of security.  In my workplace they'd probably call the paramedics if I fell or looked ill.  

And Ren, does PT really help you during a relapse?  You already know your relapse symptoms.  That is so inspiring.  I hope I will figure out my symptoms too so I won't bother my doctor unnecessarily.  

Thanks again you guys. Try to stay well.  

Hugs,

Julie

[opie74]

My relapses usually start with symptoms coming and going. After a few days they begin to come in succession and there is no more going. I usually wait to call my Dr until the sum of the symptoms are enough that Iwould rather have the solumedrol side effects than the symptoms.  I have been Dx since Oct 2008.  I had 1G over 5 days Jan of 09.  The first week of june I was given 60mg of oral prednazine with a taper that lasted over another week.  In September, I had 1G over 3 days.  

The oral steroids did not work as well, and I gained more weight. They just were not as effective and the side effects are as bad or worse.  

As for billing.  My regular insurance covers it.  I have had the injections at the hospital, and at a local pharmacy that has a home care option.  I came out much cheeper with the home care.  The trick is to get the Dr.'s nurse to call in and pre-approve it.  They have a good way aof making sure that it is deamed medically necessary.

Best wishes to you.  I am off the Betaseron trying to conceive.  I have got to get 1G over 2 days each men. cycle until we are successful or give up.  I need to call and get that set up soon.

Opie Ann

[Udkas]

Hi Julie,
I am so sorry that you are in another relapse, I do hope that you improve soon and it doesn't get worse, stay in contact with your neuro's office and let them know of any changes.

In relation to attacks mine start out gradually and then increase and worsen as the days go by until they peak, then they gradually get better if that makes sense. Remember though i am not diagnosed.

I can only tell you what my neuro's have offered me in the past. First neuro gave me 3 days of IV steriods in the hospital for my second relapse. I was hospitalised as he was worried that I would soon not be able to walk.   The ophalmologist believed that it helped eliminate some of the damage from the optic neuritis as it reduces the inflammation and the severity of the attack. Some people find steriods are no help what so ever, I found that they were helpful for me and I had no side affects.

My neuro that I see how also offered them to me when I was in what he believed to be a new flare, he said that it would perhaps help me recover and help me with my symptoms, I declined as I don't have a diagnosis as such and thought that it would prob not help.  So obviously my new neuro offers IV steriods in flares.

I hope this has helped, hope you feel better soon
Udkas.

[Fluffysmom]

Julie,

Thank you for asking these questions; they are all things I've been curious about.

From all I've read here, the steroids don't lessen the damage, just the intensity and  duration of the symptoms like Ren said.

I've been trying to figure out if I should pay for an enhanced health insurance policy, which would really pay off if I was hospitalized or had any outpatient surgeries or procedures, etc.  I don't know if IV SM falls under any of the enhanced benefits, but it crossed my mind.

For the most part, my symptoms are mild enough that I wouldn't consider steroids, since the side effects bug me, though with some of this nerve pain that Lyrica and Tegretol barely touches, I would almost reconsider.

So, I'll add that question: How are IV solu-medrol treatments billed?

I hope this relapse passes quickly, Julie, and you feel much better soon.

Hugs,

Kathy

[coco31]

Hi Julie,

I am new here so I can only offer you my experience and what my own neurologist has done:

Diagnosed in June 2009 but 4 relapses in the 7 months since diagnosis. I've had IV-SM 1gr over 3 days for each relapse. Funnily it has never been me who actually noticed I was having or starting a relapse:

Initally my vison blurred but what I thought to be migraine turned out to be optic neuritis. Had IV SM.

5 weeks later vision blurred in the other eye (I and my GP thought ON as a cause would be highly unlikely) but after an opthalmology reveiw it was confirmed. Had IV-SM

November unsteady walk (thought I was tired) and it was noticed by a doctor at work (I work in an A&E dept and was banging into doors and people. 1gr/3 days

Jan 2010 woke up one morning and my sister came for a visit and the left side of my face was drooped and slurred speech. As it turned out after neuro exam deficit was entirerly on left side of body (I never noticed) IV-SM 1gr/3days (just 2 weeks ago)

I was never offered the option of oral steriods  mmmm???? My aunt also has MS but for 10yrs her neurologist always offers her IV-SM during a relapse but she refuses and takes the oral (which I know she finds difficult because I think you have to taper it) Her reasoning is her phobia of needles (needless to say she has also refused any form injectable therapy) Tried rebif and she just couldn't do it.

Sometimes she just "rides out" the relapse. Because as Ren above has said overall I'm not sure they effect the outcome i.e as in damage caused by inflamation but I can say they certainly do help with the symptoms and duration of the symptoms..... But I cant say personally which is better/more effective because I've only ever had IV.

Not sure if this helps but at least it shows you someone elses experience and perspectives...

warm wishes,

sharon

[rendean]

What a spot to be in...sorry you are in another relapse. I can answer your questions as to what my doc does but he doesn't seem to follow the majority of what I see here on the forum.

1. MY relapses usually start at the same level once it is noticeable to me that I'm in a relapse, if that makes sense.  In other words, the first 2 or3 days may be mild be then I get a true sense of what the relapse involves. The one I had last year where I couldn't lift my left leg to get it in the car, wasn't obvious to me until the day it happened.  I was sent to PT for it and it did improve. Although I have a fantastic PT person who understands MS and nerve issues versus orthopedic issues.

2. My understanding of the use of steroids is to lessen the symptoms and shorten their duration. It does not change whatever damage is being done by the current inflammation.

3. My doc only uses steroids after trying to alter my neuropathic meds to decrease pain, etc. With my vertigo, I received steroids by the 2nd or 3rd day each time.

Hope this helps although I'm not sure I gave you any pearls of wisdom. I do send you wishes to feel better.  I hope this happens soon!

Gentle hugs,
Ren