IV steroids

[Kataylor]

Hey everyone. I am having a relapse currently, first one since treatment. My symptoms when I got diagnosed are usually half my body goes numb. This relapse my whole left side is numb, tingling, itchy feeling. It is definitely uncomfortable at times but very tolerable! I went to see my doctor and they suggested to try IV steroids. I have read up on them and the side effects sound terrible! I feel like because my relapse isn’t causing any debilitating side effects I shouldn’t do th steroids. Anyone have any advice if this is the right thing to do?

[SNOOPY]

Hi Kataylor,

I am rather surprised your Neurologist would prescribe IV steroids for sensory symptoms. Many Neurologist do not prescribe steroids for these types of symptoms.

Steroids do not change the course of the disease but might shorten an exacerbation (relapse, attack, flare-up), exacerbations have the ability to improve without steroids. Sometimes steroids are much needed.

The decision to use or not use steroids is between you and your Dr., but in the end it's your choice.

Information on parasthesias (numbness, tingling, pins and needles):
https://www.nationalmssociety.org/Sy...ptoms/Numbness

Pruritis (Itching):
https://www.nationalmssociety.org/Sy...mptoms/Itching

[Kataylor]

Yeah I was very surprised too! Looking up the risks and benefits I feel I would be better off not taking them at this time but then I worry about the progression of the disease if I don't treat it. It's a hard decision! Have you ever had steroids before?

[pennstater]

The steroids won't affect the progression. It may shorten the duration of the symptoms you are experiencing, but not the extent to which the symptoms resolve.

I have had IV steroids. For me personally, I wouldn't take for just sensory. I would ask your neuro if he has any concerns if you don't take the IV steroids. Are you on a DMT? If so, is it something you can continue to take during a relapse?

[Temagami]

I have had steroids 4 times. Now have osteoporosis. Would I have gotten osteoporosis anyway? I´ll never know, but if I could go back in time, I would not have taken the steroids as they affect your bones.

[SNOOPY]

Hi Kataylor,

Have you ever had steroids before?

I used oral prednisone for my first two exacerbations and the other 4 exacerbations I chose not to use steroids. Years ago when I was diagnosed (in the dark ages ) IV steroids (IVSM) were not used, only oral steroids (Prednisone), so I have never used IVSM.

It's a hard decision!

I know, I'm sorry

but then I worry about the progression of the disease if I don't treat it.

As pennstater has pointed out; steroids won't effect the progression. It's also important to know: the more steroids are used the less effective they become.

Take care

[smalltowngirl]

I have been on IV Solu-medrol twice now. The first time wasn't as bad as this last time (just last week). After three days of steroids, I felt like I had been hit by a bus. My skin hurt. My shoulders and neck hurt to touch-- even my bra straps hurt. If you would've asked me at that time, I would've said it may not be worth it. However, I can't say how much it actually shortened this exacerbation, so it's hard for me to argue against IVSM. I think I'd be too scared to go without it if my neuro said that's what he'd recommend.

[SNOOPY]

I think I'd be too scared to go without it if my neuro said that's what he'd recommend.

More than likely your Neurologist will offer steroids when having an exacerbation because other than that and symptom management medications there is nothing they can do for us.

The majority of exacerbations will resolve on their own with or without steroids. Even if steroids are used there is no guarantee it will help an exacerbation, sometimes the exacerbation simply needs to take it's own course.

The symptoms you experienced from steroids are common temporary side effects. There are long term permanent side effects that are possible and they are:

- Steroid induced Diabetes
- Steroid induced Cushing's Disease
- Steroid induced Cataracts
- Steroid induced Glaucoma
- Steroid induced Osteoporosis

Please take the use of steroids very seriously. They will not change how your disease may or may not progress nor is steroids a "cure all" for symptoms. Steroids can stop working the more they are used.

Take care

[pennstater]

Snoopy brings up a good point about the reduced effectiveness over time. I probably had IV steroids about 6 times in the first 6 years until Tysabri settled relapses down for me. I agreed to them because I was working and wanted to get back ASAP.

Fast forward. I developed bronchial asthma whenever I get a respiratory virus or infection. The last two, normal dosages of steroids didn't call it down. I have had to do extended higher dosages, and even then, not as effective.

Not trying to scare anyone off. If you need the IVSM, you need it. If borderline, just make sure to weigh the pros and cons.

[REG53]

Kataylor, I'm sorry you are having a relapse, I know how uncomfortable numbness can be. The first time it happen to me was years ago and steroid was not suggested and it took about a month before the feeling started coming back. The 2nd time it happen I couldn't walk so I had 5 days of steroids and it took about 2 wks before the feeling started to came back and after pt, it was about a month before I felt comfortable to leave the house.

I am just speaking for myself now. If my sx's are tolerable I would not take Iv steroids but again that is just me.

I hope you feel better soon.