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Post infusion of IV Solu-Medrol -
Feeling cr@ppy and symptoms are not significantly better 5 days after a 3 day treatment of IV Solu-Medrol. In fact some symptoms are worse , i.e. rib and right leg bone pain; falling in bathroom; complete and sudden urinary incontinence which is now back to urinary hesitancy and urine retention. I don't recall how long it takes to see significant results and I searched some on here before posting.
My plan was to call MS neuro tomorrow and see what he says but I wanted to get some opinions/experiences from others on how long their symptoms lasted post infusion.
Help...somebody????
Ren
My plan was to call MS neuro tomorrow and see what he says but I wanted to get some opinions/experiences from others on how long their symptoms lasted post infusion.
Help...somebody????
Ren
Sharon,
Thank you for your post and positive thoughts sent my way. You pointed out something that I had never really verbalized but as soon as you put it into words I knew that this is that "thing" that bothers me so much about the steroids.
It wasn't necessarily the physical component that bothered me but the unconscious thought process that said, yes, this IS real. You really are sick.
I appreciate you writing and sharing this with me as this was the "ah ha" moment that made everything else make sense to me, at least in terms of disease acceptance.
Warmly,
Ren
Thank you for your post and positive thoughts sent my way. You pointed out something that I had never really verbalized but as soon as you put it into words I knew that this is that "thing" that bothers me so much about the steroids.
It wasn't necessarily the physical component that bothered me but the unconscious thought process that said, yes, this IS real. You really are sick.
I appreciate you writing and sharing this with me as this was the "ah ha" moment that made everything else make sense to me, at least in terms of disease acceptance.
Warmly,
Ren
Ren I feel your pain....
I feel like some kind of digging equipment ran over me shortly after steriods, almost everytime. Gosh my bones ached!!!!! On a plus not my house was never so clean and food never tasted so good! lol.
I think one of the worst parts apart from the physical side effects of having IV steriods for a replase is the realisation as to why your having them. Your reminded that your MS is active and you question the amount of damage this relapse is going to cause, longterm and that whirls around in your mind.
Stay strong, emabrace the positive effects this little push will have on your recovery.... which will hopefully be FULL and SOON.
All the best
Sharon.
I feel like some kind of digging equipment ran over me shortly after steriods, almost everytime. Gosh my bones ached!!!!! On a plus not my house was never so clean and food never tasted so good! lol.
I think one of the worst parts apart from the physical side effects of having IV steriods for a replase is the realisation as to why your having them. Your reminded that your MS is active and you question the amount of damage this relapse is going to cause, longterm and that whirls around in your mind.
Stay strong, emabrace the positive effects this little push will have on your recovery.... which will hopefully be FULL and SOON.
All the best
Sharon.
Michele and Erin,
Thanks for the well wishes! I'll post after Monday.
Have a great weekend!
Ren
Thanks for the well wishes! I'll post after Monday.
Have a great weekend!
Ren
I am late tuning in to your update (as usual, sorry) :)
By the time I got to the bottom I was doing a big aaahh I'm so glad that he called you and apologized and is seeing you. He is a keeper after all thank goodness!!!!
My last round of IV steroids was awsome for around a week. I was so happy but they didn't last and slowly everything is coming back. I go to Cleveland Clinic in a couple weeks so I am just going to suck it up until then.
Get some rest this weekend - spoil yourself and let us know how the appt goes on Monday.
Hugs,
Erin :)
By the time I got to the bottom I was doing a big aaahh I'm so glad that he called you and apologized and is seeing you. He is a keeper after all thank goodness!!!!
My last round of IV steroids was awsome for around a week. I was so happy but they didn't last and slowly everything is coming back. I go to Cleveland Clinic in a couple weeks so I am just going to suck it up until then.
Get some rest this weekend - spoil yourself and let us know how the appt goes on Monday.
Hugs,
Erin :)
I am so glad your neuro called you back. I am glad you are seeing him on Monday. and will say a prayer for you that this weekend finds you feeling better!
Michelle
Michelle
My neuro finally called me back. His first sentence was, "Did anyone tell you I was out all week?" He then apologized profusely. Told you he was a keeper.
Long story short, with all my new symptoms, and an expiratory wheeze with no fever or other signs of illness. He wants to see me in person on Monday before he decides anything.
Stay tuned, same Bat channel, same Bat time next week.
Ren
Long story short, with all my new symptoms, and an expiratory wheeze with no fever or other signs of illness. He wants to see me in person on Monday before he decides anything.
Stay tuned, same Bat channel, same Bat time next week.
Ren
Hi There
my experience after the 3x day steroids were bizarre.. i had sunburn feeling in my neck to chest very sore to touch, didnt have this prior to iv,s..
i felt very very weak like the flu symptoms. The steroids did absolutely nothing for my numb arm or pins needles.. but i thought my cognitive thnking was sharper i could remember words better and sort of organise my mind better not so much confusion..
Been about 2 month now since steroids and i dont feel much better to be honest..
hope this helps jan xxx i do think my sx got slightly worse but dont know why xx
my experience after the 3x day steroids were bizarre.. i had sunburn feeling in my neck to chest very sore to touch, didnt have this prior to iv,s..
i felt very very weak like the flu symptoms. The steroids did absolutely nothing for my numb arm or pins needles.. but i thought my cognitive thnking was sharper i could remember words better and sort of organise my mind better not so much confusion..
Been about 2 month now since steroids and i dont feel much better to be honest..
hope this helps jan xxx i do think my sx got slightly worse but dont know why xx
((((Ren)))),
How are you doing today?? Did the neuro call with any further advice? Let us know. I am thinking of you always...
BIG HUGS TO YOU,
Michelle
How are you doing today?? Did the neuro call with any further advice? Let us know. I am thinking of you always...
BIG HUGS TO YOU,
Michelle
Sorry I cannot be of any help. Only had one treatment of solu-medrol so I am no expert.
Please do call your neurologist and maybe he/she can provide some answers and reassurance. I am so sorry that things are not getting better. Perhaps it just takes you body longer to react to the med?
My thoughts are with you and I hope you feel better soon.
Julie
Please do call your neurologist and maybe he/she can provide some answers and reassurance. I am so sorry that things are not getting better. Perhaps it just takes you body longer to react to the med?
My thoughts are with you and I hope you feel better soon.
Julie
Thanks you so much for your reply! You reinforced what knowledge I had hiding in the cobwebs of my brain. Most of my symptoms are sensory and I did notice a decline in the severity with previous infusions but not with this one.
In fact, they actually got worse, which is something I thought Quix tell someone else previously. but by now I have assumed with only worsening the improvement a plateau isn't going to happen.
I did experience double vision the 3 days of the infusion and a mild version on the 4th day after.
I also had profound weakness. On 2 mornings , I had to have my teenage son lift me up higher on the bed because I could not so it myself. Yesterday, PT told me even though I am stronger, not to do ANY exercises except my bridging until she sees me again next week. MY PT gal is very neuro literate so I am following her lead.
I called my neuro early this morning, his nurse called later in the afternoon and said I'll let you know something this afternoon. Well, my clock on the wall says 9:26 pm...I believe we are past the afternoon tea session. I'm sure he will call bright and early in the morning, probably before I have my wits about me so I will have my cheat sheet of questions to ask him. I will ask about the symptoms getting worse before they get better.
Thanks again for sharing your experiences with me. I appreciate it very much!
Ren
In fact, they actually got worse, which is something I thought Quix tell someone else previously. but by now I have assumed with only worsening the improvement a plateau isn't going to happen.
I did experience double vision the 3 days of the infusion and a mild version on the 4th day after.
I also had profound weakness. On 2 mornings , I had to have my teenage son lift me up higher on the bed because I could not so it myself. Yesterday, PT told me even though I am stronger, not to do ANY exercises except my bridging until she sees me again next week. MY PT gal is very neuro literate so I am following her lead.
I called my neuro early this morning, his nurse called later in the afternoon and said I'll let you know something this afternoon. Well, my clock on the wall says 9:26 pm...I believe we are past the afternoon tea session. I'm sure he will call bright and early in the morning, probably before I have my wits about me so I will have my cheat sheet of questions to ask him. I will ask about the symptoms getting worse before they get better.
Thanks again for sharing your experiences with me. I appreciate it very much!
Ren
Hi! I'm a big lurker here but I wanted to reply because I have a lot of experience with steroids. A lot! I had several rounds of steroids last year, and then more doses administered as "bridging", that was my doctor's term, where I had 1 dose every few weeks to keep my immune system in check. Anyways, I am familar with the good and bad effects of steroids.
From my experience, the short answer is...it depends on the symptom whether it responds to steroids. Let's see...for me, the more sensory symptoms responded instantaneously to steroids. Feeling like I had sunburn, or that awful itching (that didn't respond to scratching) dissipated within the first dose of steroids, blissfully. BUT, I had a whole host of symptoms that didn't respond that quickly. Double vision responded to steroids, but it was a very slow recovery, meaning it took a couple of months. Spasicity responded pretty well, but the varying numb patches on my body didn't.
While we all would love to have an instant fix with steroids, I think sometimes the effects can be way more subtle. For example, one of my symptoms was numbness that was slowly spreading on the left side of my torso. Every few days there would be a bigger patch. After the round of steroids, while the numbness didn't go away, it didn't spread, either. So, I think sometimes the effect of the steroids can be that the particular symptom doesn't get worse.
Only speaking for myself, steroids for the most part do not instantly make a symptom go away (except for the itching and sunburn). I think what it does for me is stop the worsening of the symptom. I did notice with my double vision, that after the first dose of steroids, the next day my double vision was worse, but the day after it was better, and over the next couple of months continued to get better. I'm not sure why steroids can actually make symptoms worse, that would be a good question for your doctor.
So, I would still be hopeful that steroids will work for you, but it would be a good idea to talk to your doctor about the worsening symptoms. Hope you feel better soon!
From my experience, the short answer is...it depends on the symptom whether it responds to steroids. Let's see...for me, the more sensory symptoms responded instantaneously to steroids. Feeling like I had sunburn, or that awful itching (that didn't respond to scratching) dissipated within the first dose of steroids, blissfully. BUT, I had a whole host of symptoms that didn't respond that quickly. Double vision responded to steroids, but it was a very slow recovery, meaning it took a couple of months. Spasicity responded pretty well, but the varying numb patches on my body didn't.
While we all would love to have an instant fix with steroids, I think sometimes the effects can be way more subtle. For example, one of my symptoms was numbness that was slowly spreading on the left side of my torso. Every few days there would be a bigger patch. After the round of steroids, while the numbness didn't go away, it didn't spread, either. So, I think sometimes the effect of the steroids can be that the particular symptom doesn't get worse.
Only speaking for myself, steroids for the most part do not instantly make a symptom go away (except for the itching and sunburn). I think what it does for me is stop the worsening of the symptom. I did notice with my double vision, that after the first dose of steroids, the next day my double vision was worse, but the day after it was better, and over the next couple of months continued to get better. I'm not sure why steroids can actually make symptoms worse, that would be a good question for your doctor.
So, I would still be hopeful that steroids will work for you, but it would be a good idea to talk to your doctor about the worsening symptoms. Hope you feel better soon!
Thank you to all who answered my post. Mary, you are correct about the inflammation theory. Suma, 2 weeks is a long time but perhaps I'm being impatient. I thought the usual time frame was within a week or so but with my weary mind, who knows.
Alex, tell Moon Pie I said thank you!
Ren
Alex, tell Moon Pie I said thank you!
Ren
Oh Ren, you certainly have been having a hard go of things for a while now. Didn't you just go through this? Or had you decided to wait it out a little. I'm getting confused. There are so many members and I don't do well in crowds. My bad.
Anyway, I haven't had the pleasure of roiding so can't give any personal experience. I'm thinking they won't help though unless the flair is occurring because of inflammation and that isn't always happening with MS exacerbations. I'm going to wrack my brain and try to find where I was reading this just recently (or if perhaps I'm only making it up).
In the mean time, I'm going to be sending you my best hopes and wishes to fill your new year (Jewish New Year wishes are what I have in stock tonight) and hope those will kick start those steroids to work their magic.
All respectfully intended and sincere.
Mary
Anyway, I haven't had the pleasure of roiding so can't give any personal experience. I'm thinking they won't help though unless the flair is occurring because of inflammation and that isn't always happening with MS exacerbations. I'm going to wrack my brain and try to find where I was reading this just recently (or if perhaps I'm only making it up).
In the mean time, I'm going to be sending you my best hopes and wishes to fill your new year (Jewish New Year wishes are what I have in stock tonight) and hope those will kick start those steroids to work their magic.
All respectfully intended and sincere.
Mary
My last steroid infusion took nearly two weeks AFTER the last day to make a difference. I must have had a bad flair. I wonder how bad I would have been without it.
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