How often is it allowed to use solumedrol to treat relapses?

[HelenaD]

Hello to everyone! I’m new to this forum and I hope someone can help me to make a decision.
I was diagnosed with MS 3 years ago. At that time I got IV steroids to ease my symptoms and everything was quite fine till last summer (August 2015), when I felt numbness in my feet. My doctor proposed IV steroids again. I also started to take Copaxone in October 2015. Than in February 2016 I had another relapse (issues with my left leg), than just 3 months later (in May 2016) another relapse with the same symptoms. All of these relapsed were treated with IV steroids (solumedrol). And now just 3 months and 9 days after the last course of steroids I’m having another relapse (started last Friday - again problems with left leg, overall weakness and fatigue in my brains). I don’t now what to do. I’m really afraid to visit my doctor because I’m 100% sure she will propose solumedrol again. I had 3 courses of solumedrol 1000mg *5 days for each relapse, so it’s 15 g just in one year. I can’t say I had difficulties with solumedrol, but now I’m really scared to use it so often.
I had lesions in my spinal cord (neck level) that’s why my doctors always want to treat my relapses this way. And Copaxone obviously doesn’t work:((
So the question is how often is it allowed to use solumedrol? And how serious the relapse should be to use it?
Sorry for so many letters and thanks in advance for your advices.

P.S. All these years I tried different diets, supplements, exercises, now I’m following OMS.

[Snoopy]

Hello HelenaD,

I would like to share some basic information about the use of steroids ( solumedrol, prednisone). Steroids do not change the outcome or course of MS they might resolve an exacerbation (relapse, attack, flare-up)sooner. This is not always the case. Not all exacerbations require steroids and many times an exacerbation can resolve on it's own. It doesn't matter where your lesions are all of the above is true.

The more steroids are used the less effective they become.

There are short term as well as long term side effects to using steroids. Long term (possible) effects are: Cushings Disease, Glaucoma, Cataracts, bone loss, diabetes as well as some others. All are steroid induced.

It is your choice if you want to use steroids, your Neurologist can recommend them but you can refuse. Other options to help you through an exacerbation is: wait it out, Physical Therapy/exercise (if possible), rest, symptom management medications (as needed).

[HelenaD]

Thank you very much! I think I'll try and wait this time. If it stays at the same level I hope I can manage it.I know pretty well that it's not a cure, but when you are having relapse you are always afraid of staying with all that damage:( It's difficult to calm down and give yourself more time to wait. And neurologists always ask to come to them in your first days of relapse. Ou, you have lesions in your spinal cord! That's bad. Let's start solumedrol right now! That's what they always tell me. And I had no will power to refuse all the previous times:)

[Youarethecure]

I refuse to take steroids ever again. They will speed up recovery but they don't have much of an affect on long term recovery. You will get to the same point no matter what, it just takes more time without steroids. That is why I do not think it is worth it with all the side effects it can, and will cause.

[HelenaD]

This time I had to use steroids again. I had been waiting for 2 weeks that the symptoms in my leg would pass. At the end of the second week my head stopped thinking clearly and I felt very tired and sleepy. So I came to my neurologist and she proposed 5000mg of solumedrol again. I agreed. Sometimes it's just not possible or appropriate to wait. Each case is individual.

[luckyme]

Good stuff! I'm goin through this right now. I'm not too sure I wanna take the Iv steroids for my flare up. After all, it's been almost 3 months of feeling this way I kinda think it's gonna go away soon. My symptoms aren't too bad and have been getting better but some days they are worse than others. Then I think about givin in to the steroids. I am pre diabetic as well so I don't like that the steroids can cause diabetes. That prob puts me at a higher risk for it. Not sure about that. Anyone know?

[lyndacarol]

I am pre diabetic as well so I don't like that the steroids can cause diabetes. That prob puts me at a higher risk for it. Not sure about that. Anyone know?

luckyme, as I recall, your vitamin D level was 11 ng/mL and you are currently in the middle of supplementing (What is your dosage?) for a couple months and, then, you will be retested. (I am curious to know the results of your next test.) I think it is very important to raise your level from "deficient" to optimal level and MAINTAIN that level… especially in light of your pre-diabetic condition:

Vitamin D and Diabetes
Teresa Martin and R Keith Campbell
http://spectrum.diabetesjournals.org/co ... d-shared=1

"Renewed interest in vitamin D, the so-called “sunshine vitamin,” has occurred recently because it has been linked to everything from cancer and heart disease to diabetes.1 Research studies continue to pour into the literature stating that vitamin D is a superstar when it comes to health. However, most of the research is based on observational, epidemiological studies, which are important for generating hypotheses but do not prove causality."

"There is growing evidence that vitamin D deficiency could be a contributing factor in the development of both type 1 and type 2 diabetes. First, the β-cell in the pancreas that secretes insulin has been shown to contain VDRs as well as the 1 alpha hydroxylase enzyme. (Bland R, Markovic D, Hills CE, Hughes SV: Expression of 25-hydroxyvitamin D3-1 alpha-hydroxylase in pancreatic islets.) Evidence indicates that vitamin D treatment improves glucose tolerance and insulin resistance."


And you are correct: High-dose steroids or long-term use of steroids has been connected to an increased incidence of diabetes.

[luckyme]

Thank you for that info!! You just helped me make an informed decision. I am seeing the neuro today so we shall see what she says. With your info, it's def gonna be vit d, vit d, vit d and then some more vit d till I get it under control.
Ps my dose is 50,000 iu once per week for 8 weeks so I won't do anything til I see where that puts my numbers. Thanks again!!! I think I can deal with these symptoms til they go away on there own. Iv been dealin with it for months already so what's the difference! I was kinda under the impression that I might do more long term damage if I didn't try to calm it down with steroids.