Steroids for a relapse

[Sandydemop]

Hi Group, I would like to ask you if you would share your experience with steroids. I know we are all different and will react differently but what i want to know is did it work? If your doc put you on steroids did it stop the relapse? My experience is mixed: 1st time, oral steroids worked great. 2nd time less and 3rd time not so much. Now my doc is putting me on IV steroids for 3 days then a 10 day oral taper. I'm hoping it helps with the double vision. Neuro-ophthalmology appt. March 30. Hoping for the best. thanks very much

[rjoneslaw]

My very 1st relapse I had the iv for a day before I started my 1st MS med

Then the 2nd time I did the pills for 3 days

The 3rd time I was in the hospital and received it for 7 day for 24hrs by iv

Each time I received it it did work

[Sandydemop in reply to rjoneslaw]

so glad to hear that. Thanks for the good news!

[CynthiaS]

Steroids helped me iv the first time and recently I took tablets 2 a day for five days for asthma. I had to wear an eye patch for a week per eye and normal vision returned. Blessings

[Sandydemop in reply to CynthiaS]

thanks Cynthia

[CynthiaS in reply to Sandydemop]

🧡🧡🧡

[CalfeeChick CommunityAmbassador]

Thank you all for sharing your experiences with steroids. When I first went numb and docs weren't sure what was going on, I was on Oral steroids for a few weeks. I know now, I was fortunate to get a definite diagnosis within the first 6 months. Best to you.

[Sandydemop in reply to CalfeeChick]

thanks

[Sezlatham]

It will help, but becareful after as it lowers your immune system and fatigue hits a whole new level

[Sandydemop in reply to Sezlatham]

thanks for the warning. I may have to adjust my schedule.

[jkdavid99]

I have had steroid infusions 3 times. Each time it worked. At one point i was having trouble walking. It worked. One time i had double vision. It worked. Other time i had 30 more active lesions and in hospital. It worked. I am a fan of iv steroids. Ivenever done oral steroids. Good luck to you

[Sandydemop in reply to jkdavid99]

thanks jkdavid99

[jimeka]

Hi Sandy, I have never had steroids so I can’t help, but I hope and pray that it helps your vision and all goes ok, blessings Jimeka 🤗

[Sandydemop in reply to jimeka]

thanks for your support jimeka

[kdali]

I will feel amazing on any steroid and always wish I could live this way. I’ve had IV once but it was preventative after childbirth, so I was “high” and running around the unit 8hrs after surgery 🤣 I’m on my 4th time with oral now. Did it stop the relapse? I still had a lesion that was glowing with contrast after one of them, but we did not advance to IV since I was improving...and I had to do another round of oral steroids after a dental procedure 2 weeks later anyway. My next MRIs for this one will be done soon. I hope this helps!

[Sandydemop in reply to kdali]

yes for both of us

[ahrogers]

I had 3 days of IV steroids when first diagnosed. My doctor did warn me it might not help since my main symptoms were sensory and not motor (unless my body temp went up). I had no change in symptoms and felt bad for those 3 days. However, I had the spinal tap a couple days before the first steroid so that potentially could have contributed to how I feel. I wasn't given an oral taper but also felt ok starting the day after I finished the IVs. I don't have any issues with the steroid before my Ocrevus though 😁My muscle weakness has been gradual so I haven't had any more steroids. MRIs have been stable for years too.

[Sandydemop in reply to ahrogers]

ahrogers good to hear

[leking1]

Hi Sandy...now that I am in SPMS I don't take steroids, but my years living/working in the Florida heat had me living with my own IV pole for 3 day IV's 2 -4 times a year. Lots of new lesions, but the steroid iv's worked every time. Home health nurses would come to my house to give the IV's, and by the second day, I would be cleaning the ceilings or something like that! Gave me lots of energy and fixed those crazy legs right up!

[Sandydemop in reply to leking1]

yes! If i get the energy you had i hope to accomplish a lot. thanks for the input leking1 @

[bxrmom]

When I have had relapses, my neuro ordered 3 days of iv steroids than a taper. It worked for me. Good luck to you. Keep us updated on how it goes for you.

[Sandydemop in reply to bxrmom]

thanks bxrmom Will do. thanks for your support. You know we never talk about these things, right? i'm so grateful everybody is sharing their experience!

[Sweetheartonvdayl]

Hi Sandy😊Yes, I had complete dbl vision for 3& 1/2 wks. The ONLY thing that worked for me was IV steroids.( with tapering prednisone afterwards.)

I received a 5 day course of IV.

💘 Lisa🙏💕

[Sandydemop in reply to Sweetheartonvdayl]

Hey Lisa, glad it worked for you. It's interesting how different docs use different combinations of oral and iv. I'm a little mad at myself that I didn't tell the doc right away when it started.

[nes78]

they've fine in the very beginning but i think they stop working. dg. at 23 and i'm 42 now and have osteo which i think was advanced by genetics and liberal use of steroids. oh and i'm pretty small and weight 110 so that probably doesn't help.

[Sandydemop in reply to nes78]

that's a good thing to know. Steroids have short and long term side effects. thanks.

[kycmary]

Years ago I was put on liquid steroids for relapses First few times it worked then my body built up a tolerance to them ! good luck

[Sandydemop in reply to kycmary]

thanks kycmary food for thought.

[MaMere2]

Hi Sandy! Years ago when I had my first exacerbation I took oral steroids. It worked a little. My second dose did not work at all or the third. I was put on Iv steroids after that. In the mid 90s I was given IV steroids as my DMT. This caused osteopenia. If you can, try to take a calcium supplement. I stopped using it monthly after a couple of years. Since then I have used IV steroids after or during an exacerbation. Sometimes for 3 days sometimes for 5 days sometimes with a taper and sometimes not. It has worked for me every time over the last thirty years. I have never had any vision problems, so I cannot speak to that.

[Sandydemop in reply to MaMere2]

Thanks for sharing your experience.

[Jesuslover69]

MS came into my life when I was 20 years old, about 37 years ago. At that time, if you had a lot of seemingly unrelated health problems and they couldn't figure out what was going on, they'd call it "MS". These days, they can do an MRI and usually will immediately know that you have MS. When I first was diagnosed, they prescribed oral steroids, which did NOTHING for me. Then, my next Exacerbation was about 18 years later. I was put on IV Steroids for 10 days. It didn't cure anything, but it put me into REMISSION! That was about the time when Betaseron, the first Disease-Modifying Therapy was passed. I've been on Betaseron for 29 years now and haven't had any relapses! As you said, everybody is different. What works for one person may not work for another. Find a doctor who will work with you to find what works for you! GOD BLESS YOU!

[Sandydemop in reply to Jesuslover69]

Thanks very much. Same for you

[mrsmike9]

I had them for a relapse once. It worked but I was left with an awful metal taste in my mouth for a very long time. Yuck!

[mrsmike9 in reply to mrsmike9]

I neglected to say what kind and for how long! IV steriods for 5 days.

[Sandydemop in reply to mrsmike9]

When I tasted it the nurse said "Good. Now we know the iv is working! 🤐

[Sandydemop in reply to mrsmike9]

thanks. Somebody here warned me about that so i was not too upset/surprised when it happened.

[mrsmike9 in reply to Sandydemop]

I was forever sucking on peppermint candies. I was so glad when it finally went away!

[JTZES]

The IV steroids is a more effective way to go. Yes it is different for everyone. I have very few side effects from it other than hunger.It definitely lessons my primary issues over the course of the week.

What you need to remember that it won't cure the damage that has already been caused by the exacerbation but slows it done preventing further damage.

[Sandydemop in reply to JTZES]

ugh. I was hoping i would get stronger and the double vision has to go away. I want to get my legs back under me.

[Sezlatham]

You will

[Sandydemop in reply to Sezlatham]

thanks for the optimism. It comes and goes for me. I feel a little stronger today. Started on the oral taper. Willing to exercise now that it is easier to lift my legs up.

[Sezlatham in reply to Sandydemop]

You will get there, it’s hard . Breathe and push. Take your time

[Sandydemop in reply to Sezlatham]

thanks very much. Your positive attitude is welcome.