Disappointed : Y’all know that I had my iv... - My MSAA Community

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Disappointed

Doubled51 profile image
33 Replies

Y’all know that I had my iv steroids last weekend but im disappointed that I havent had any improvement. If anything my fatigue walking and dizziness are worse.

The only thing dr changed was raised my Cymbalta from 30 to 60. I’m just wondering if anybody has gotten goofy from Cymbalta. That’s the only thing that makes sense. All day Wednesday I wanted to do was sleep and was just wiped out all day. So I waited til late afternoon Thursday and today to take it but I still have a lot of trouble walking. I was so looking forward to getting better if even a few days.

Thank you all and God bless

Donnie

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Doubled51
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33 Replies
Midgey_Midge06 profile image
Midgey_Midge06

I am so sorry it didnt work for u. I have never used Cymbalta so i am not sure about that. For reals u so shuda got a few good days from the iv steroids. I am shocked

kris1973 profile image
kris1973

Sorry you’re not feeling better yet. My (oral) steroids took 7-10 days b4 I noticed any difference - thinking it was bc it took 6+ weeks b4 I realized I needed them. You have waited a lot longer than that. It will get better:) -Kris

bxrmom profile image
bxrmom

I think it may be because your neuro waited so long to have you do the steroids. Sometimes the steroids will knock you out and make your really tired though. Give it a few days to see if it helps. Did your doctor prescribe an oral taper after the steroid infusion?

As for the Cymbalta, I currently take 30mg of it and I do okay on it. I have heard of people reacting weirdly from Cybalta before. I would check with the pharmacist and your doctor to see if what you are experiencing is normal or if it could be from the combination of the dosage being increased combined with the steroids infusion.

Keep us updated when you can,

Jessie

Doubled51 profile image
Doubled51 in reply to bxrmom

I’ve been taking 30 mg for a month or so and it’s made a world of difference on my shoulder pain so I’m hoping it just takes a little time.

I’ve only had steroids 1 time so maybe I was expecting immediate results. But he didn’t give any taper.

I think I feel better on somethings but my walking sucks.😁😁

Donnie

Iona60 profile image
Iona60 in reply to Doubled51

Donnie, I always do better with an oral taper. And, they make my blood sugar go up and make me tired, even though I am not a diabetic.

kdali profile image
kdali

I've never had either, but I am sorry things did not get better for you ☹️

Texandyroe profile image
Texandyroe

Oh, Donnie, I am so sorry you have not received the relief you had hoped for. My experience with IV steroids has been that there was an immediate improvement....but, as we well know, we are all different and we all react differently. Let's give it another couple of days and then give your neuro a call if there's no improvement yet. As far as Cymbalta...I've never had that, so have no words of wisdom for you on that. Hang in there, and keep the faith. Sandy

I agree with kris1973 , I think you just need to give it more time. I take Cybalta 60mg. The steroids really affect your system so after you are done taking them you will sleep a bit. Just have to be patient. These are all powerful drugs and it will take a while for your body to get used to them. When I was first diagnosed it took me a few years before I started feeling "better". Everyone is different in how their body will react to changes and at the same time your bodies immune system is playing overtime. Be at peace "you're not in Kansas anymore" just follow the yellow brik road and know we all understand.

ssdw1958 profile image
ssdw1958

I am sorry that didn’t work for you maybe it will take a couple more days until it will kick in you never know. 😃😃🤞

greaterexp profile image
greaterexp

🙏🙏🙏

jimeka profile image
jimeka

Sorry Donnie, its disappointing when you have your hopes built up, then it doesn't meet our expectations. I have never had steroids, I have a packet of oral ones in the cupboard in case the eyes play up, but never tried them. Patience Donnie, the Lord may have something better for you, blessings Jimeka 🦋 🙏

Kenu profile image
Kenu

Sorry to hear about the steroids not helping 🤷🏼‍♂️ Maybe it was to far into exacerbation before the doctor got you started 🤷🏼‍♂️. I always had mine within the first two to three days. I also had oral for six days afterward. As far as Cymbalta I have been taking 60 for twenty three years and no problems. Went to 90 a couple years ago and no change, so I went back to 60👍😁 Hope you get feeling better 🙏🐾🐩. Ken

Doubled51 profile image
Doubled51 in reply to Kenu

Thanks Ken.

Donnie

ylimem profile image
ylimem

Me too. I've had three rounds of iv steroids, one of oral, and even five days of self injected acthar gel in the last six months. No change. Sooo frustrating

Doubled51 profile image
Doubled51 in reply to ylimem

It sure is frustrating. I feel like I’ve gottwb worse instead of better.

Donnie

janetb1968 profile image
janetb1968

Oh bless u hun I'm gutted for u xxx

pihokken profile image
pihokken

I hope the steroids kick in soon. My neurologist always tapered me off with oral after. That really helps. I took cymbalta for years and didn’t have any side effects. Best of luck!

Morllyn profile image
Morllyn

Don’t give up Donnie! 😲 Have you checked the side effects of your medications? 🤔 Talk with your doctor, again.🤭

Sorry, I know it is disappointing and frustrating. 😣😫

Thinking of you and hoping that you are feeling better soon.😘🤞

Doubled51 profile image
Doubled51 in reply to Morllyn

It’s crazy. The only thing he changed was my Cymbalta. That’s what’s so frustrating.

Donnie

Morllyn profile image
Morllyn in reply to Doubled51

Just do not give up.

Doubled51 profile image
Doubled51 in reply to Morllyn

I’ll never give up.😁😁

Donnie

Morllyn profile image
Morllyn in reply to Doubled51

🤗👍

Doubled51 profile image
Doubled51

Yeah it’s been close to 2 months for me. Maybe that’s the reason. But I agree that I feel worse now than before. That is def disappointing.

Donnie

WAshingtongirl profile image
WAshingtongirl

I’m sorry for the disappointment, Doubled51 . I always had immediate results from the IV solumedrol. When I no longer did, my neuro said that, along with my age and length of time I’ve had MS, made her suspect I am now SPMS. Who knows-we’re all so different and this disease affects us all differently too. I’m praying you get some relief and answers soon. 💕

rlh1974 profile image
rlh1974

That stinks! 🤬I was praying you would get relief. However, those do sound like side effects of the Cymbalta. Especially double the dose! I do know drugs of that nature can have opioid like side effects when doses are changed. I am surprised your dr did not step you up slower. So I will pray this dissipates very quickly! I will continue to pray my friend. If there is anything specific or private, feel free to message me privately! I just wish I could fix this for you. Heck! For all of us!

Love to all,

Rob

Doubled51 profile image
Doubled51 in reply to rlh1974

Thanks for the prayers Rob. I took Cymbalta years ago but I remember what doseage I was taking. But that was years ago. A lot has changed since then. I didn’t even know what MS was then.

There has been a couple of people saying they were knocked down for a few days after iv steroids then came back strong. This is my hope.

I know you would fix this mess for us all if you could.

Just keep the prayers coming. I’ll appreciate them all.

God bless my friend

Donnie

Tracy79 profile image
Tracy79

I’m sorry the iv steroids haven’t started working...yet. I hope they show some improvement soon. Get better soon 🤗

4fishylady profile image
4fishylady

Donnie my one and only time of taking the IV Solumedrol was 10 days before this past Christmas, and it totally wiped me out through New Years Day. After that I saw some steady improvement, and more and more of that. My head squeeze finally went totally away, along with the slow walking, and dizziness. For most of mid-January through now, I am feeling my old self again. I have been outside today doing some gardening, after walking .6 of a mile! Praise the Lord!

Re: Cymbalta, I do not like that drug at all. I did not like having all feelings removed. I could not laugh or cry. Last year about this time, I slowly took myself off of that drug. I was taking 30 mg, then breaking that in half, and taking the little particles in applesauce, for several months, then I quit. I did not know, at the time, that even all that effort was not enough to come off Cymbalta. It is very strong, and has serious withdrawal symptoms when you come off of it. I should have been under a doctor's care and knowledge, while doing that. When I did tell them, I asked for and was given Lexapro, and for a while had to use additional Xanax to get the depression under control. Now, I am taking 1/2 of the Lexapro and doing fine. I can feel my own emotions again, and laugh out loud, or get a tear in my eye when my heart is touched. I prefer to be in control of my medications, not my meds in control of me.

So much for the opinion of a tough old lady of 75! Have a great week-end!

Doubled51 profile image
Doubled51 in reply to 4fishylady

4fishylady . Thanks for the info. It’s encouraging to hear somebody with this mess giving me hope that they might still work. I’ve only had them one time and it was during a 5 day in hospital stay. My dizziness fatigue and walking are my big problems so you gave me hope.

Cymbalta i was taking many years ago and I remember that it took months for my dr to wean me off cause your absolutely right about the withdrawals. But I’ve been hurting so bad I was ready to do anything to stop the pain and it’s really helping. So I’m taking it for pain but lately I could stand a little lift in my outlook on life in general so it’s just a plus I hope.😇😇

But thanks for giving me hope that they might work still.

God bless

Donnie

Gods_Girl profile image
Gods_Girl

Doubled51 When I had my steroid infusions, I was in the hospital. I told my nurse that it was the best I've felt in many years. I actually stood up ALL night. I walked around the hospital with my rollator, and outside there is a beautiful large water fountain. There is always someone awake at the hospital in the middle of the night. I talked and fellowshipped all night, made new friends, and I just felt sooo good. That feeling lasted 3 days and I was grateful for them.

I suppose it just affects everyone different. I pray that you wake up one morning feeling AWESOME and that it's long lasting. I also take Cymbalta 60 mgs. When I first started it, it gave me energy and helped with my pain. Again, the opposite for you, I see. Then the effects tapered off. Scared to go off of it though in case the pain would worsen. Anyway, hopefully everything will kick in for you, friend. I'll pray about it! Blessings, Deb.

Doubled51 profile image
Doubled51 in reply to Gods_Girl

My only other infusion was in the hospital also for 5 days. They didn’t make me get up and walk around in fact I was on strict orders to have help going to bathroom. But when I went in I could barely use my left arm and could barely walk. After steroids I had my arm back and walked into my house unassisted.

The Cymbalta is really helping with my shoulder pain. I’m already taking 2400 mg of gabapentin so the Cymbalta is just added on.

Thank you for your prayers and God bless

Donnie

RoseySawyer profile image
RoseySawyer

My Neurologist prescribed me Cymbalta for my nerve pain from MS (when I got out the hospital from being paralyzed) and my for my depression, it worked great on me. It's a short acting pill so please make sure you take it as recommended because being a short acting med it can cause irritability.

Doubled51 profile image
Doubled51

It certainly is helping my nerve pain. I did fine with 30 mg but when he raised it to 60 it started making me sleepy and fatigue got worse so I’m waiting to take it late afternoon.

Donnie

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