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Questions - Oral Steriods - What I am feeling


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Old 10-23-2010, 06:18 PM   #1
sophiekaris08
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Questions - Oral Steriods - What I am feeling

Hi everyone,

So the neuro gave me oral steroids which I have to taper down over 14 days.
I really havent had that many side effects from them - they have somewhat helped with the numbness, have upset my stomach a little and have stopped me from sleeping.

Today I have woken up and I feel like I am on a rocky boat. I feel like I am swaying - like I am sitting on a trampoline when I am sitting down. What could have bought this on? I have NEVER felt this woozy before. Could this be from the tablets? Or from my MS? This is my third day on the oral steriods.

This is all very new to me. I feel that it's something to do with my balance.

Can I do anything at home to help me with this?

I have also had a ringing ear for the last couple of days too but I have found that my vision has cleared up and I dont have the morning eye blurriness anymore.

I am seeing the neuro again on Thursday and he is going to put me on Copaxone? He said I am not liable for the other given my history of anxiety and depression.

 
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Old 10-23-2010, 07:54 PM   #2
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Re: Questions - Oral Steriods - What I am feeling

To be honest with you, oral steroids are such an incredibly low amount of steroids, Id be thinking this is more anxiety than anything else. When you take IV steroids, they give you 1000 mgs at once. Youre probably taking something like 30 mgs? 25 mgs? its really not much...

If it is helping you with your symtoms, than that is wonderful! As for your doc putting you on Copaxone, thats a good place to start. Sometimes they do warn you about depression on the interferons (avonex, rebif and betaseron) but Copaxone has less chance of that happening. Unfortunately, youll be doing a shot every single day, instead of once or three times a week...but thats something youll get used to fast enough.

As for the vision, they do not prescribe oral steroids for vision loss if it is Optical Neuritis, so im hoping all you had was some blurred vision? If your vision isnt 100%, I really hope youll consider seeing a specialist for your eyes, a Neuro-Opthamologist is the best way to go, but a regular Opthamologist, who has an MD, can at least check your optical nerve and let you know if there is any inflammation. Dont mess with your eyes!

Youl be fine. Even if this is anxiety, its normal; and every one of us has been there....continue to do what your doctor says, know that this is the worst of it, and it too, will pass. Youre going to be okay. THe copaxone will take up to 6 months to really start to level off in your blood stream, during that time you will have good days and bad ones, but alot of this is controllable by what you are thinking. So think positive, and know you are doing what you can to control this disease- and be strong! We will be here for you!!

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Old 10-23-2010, 08:07 PM   #3
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Re: Questions - Oral Steriods - What I am feeling

Hello sophiekaris08,

Glad to hear steroids are helping.

It will be difficult to know if what you are experiencing is due to the steroids or if it's the MS until the steroids are out of your system.

I have used oral steroids twice and have had some strange side effects/experience from them, I have never used IVSM. I prefer not to used steroids due to past reactions with oral steroids.
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Last edited by Snoopy61; 10-23-2010 at 08:10 PM.

 
Old 10-23-2010, 08:22 PM   #4
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Re: Questions - Oral Steriods - What I am feeling

You might speak to your Doctor. It is hard to know what steroids will do to a person. MS alone can leave you feeling like you are right now. Feeling woozy and unbalanced is quite common.

It might help you to keep a journal and review it with your neuro on Thursday. Your anxiety and depression will certainly play a part in your treatment and will need to be monitored carefully.

When I feel woozy, I might spend the day resting or even stay in bed. I hope you feel better.
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Old 10-24-2010, 12:49 AM   #5
sophiekaris08
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Re: Questions - Oral Steriods - What I am feeling

hello and thank you to both of you for the replies its nice to know you have support at a click of your fingers and here will be some answers or advice

MSJayhawk - good idea with the journal. My partner suggested it too even before I had read this and so I have started an online diary of what I am feeling and I can print it off and take it with me to the Neuro.

Niki - Oh wow I didnt realise they give the steriods in that amount when they are infused! Boy oh boy ! I am on 50mg for 4 days then tapering down.


I just feel quite stiff in my arms today, very tired as for the past few nights I have only gotten 3-4 hours sleep and HUGE amounts of stress with all the doctor appointments, family coming to visit me. I am also dizzy and off balance like I feel like my brain isnt connected to my body and my ear has been rinnnngggging all day. I also have a pain in my ear too and face pain which also shoots around in my mouth making it hard to chew etc.

I also have a huge burden of work hanging over my head and I dont know what to tell my work? I really do not want to tell them at this stage because I dont know how they will react. I have told the CEO and he said just for me to get better and we will work out the stuff I have missed when I do get back. I am due to go back to work in two days and I feel weird going back I just want to walk in with no questions and get cracking. My dad and doctor said to me that work is good therapy and if I am able to go then GO! I think with all this additional stress it isnt helping at the moment.

Have people had good results with the Copaxone? I have been reading around and there seems to be soreness in injection points and sometimes welts etc.

I spose you COULD laugh at this but my partner is a type one diabetes so he has to inject 4 times a day also but he has given me hints with injecting so thats both of us injecting now

Thanks everyone for all the support time to look forward an think positive about my new life

 
Old 10-24-2010, 02:27 AM   #6
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Re: Questions - Oral Steriods - What I am feeling

Hello Sophie, I can't tell if I've read your entire post(s) so not sure if I am working with all of your info. Off balance and ringing in ear was something I had during my "episode". It has since gone away and I feel it only intermittently--I feel stress can bring it on for me but certainly not bad like it was for about 7 weeks straight. I thought I would be like that forever--vertigo, dizzy, off balance, couldn't even wear high heel shoes. For me one of my three lesions was in the area of the brain causing this feeling. My dr. said it should improve and it did. I had three days of IV steroids and am on copoxane. I've been on 5-6 months now and the welts etc seem to be improving. I don't even think about it anymore. I do it in the am when making my coffee. Think of it like taking a vitamin. I also feel it gives me a boost of energy but that could be the coffee too!

 
Old 10-24-2010, 07:48 AM   #7
sophiekaris08
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Re: Questions - Oral Steriods - What I am feeling

Quote:
Originally Posted by JodiH View Post
Hello Sophie, I can't tell if I've read your entire post(s) so not sure if I am working with all of your info. Off balance and ringing in ear was something I had during my "episode". It has since gone away and I feel it only intermittently--I feel stress can bring it on for me but certainly not bad like it was for about 7 weeks straight. I thought I would be like that forever--vertigo, dizzy, off balance, couldn't even wear high heel shoes. For me one of my three lesions was in the area of the brain causing this feeling. My dr. said it should improve and it did. I had three days of IV steroids and am on copoxane. I've been on 5-6 months now and the welts etc seem to be improving. I don't even think about it anymore. I do it in the am when making my coffee. Think of it like taking a vitamin. I also feel it gives me a boost of energy but that could be the coffee too!
Hi Jodi,

I have problems with numbness too. I really haven't had that much vertigo, but now that the numbness is easing up I have felt more off balance if that makes sense?
What can you tell me about the welts an copaxone? What kind of welts? Do you use the auto injector? Sorry for all the questions

 
Old 10-24-2010, 11:51 AM   #8
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Re: Questions - Oral Steriods - What I am feeling

First off, the shots are not a big deal at all. I was so nervous but it was really easy. I thought I would want the auto injector because I was so scared of needles but in the end I wanted the control of doing it manually so I could control the speed w/which I inject and push in the medicine. The welts do not last. As you inject, it may burn if not immediate a few minutes after. The burning feeling also is itchy too. Almost like misquito/sting combined. The welts usually come right away and maybe are one quarter size the most. The most important thing is that none of this lasts. At first, I would get all this and it would last a day or so, then after a few months it was fine immediately but would kick in one day later. Now I really don't notice it even though it may be there. I just avoid touching those areas sometimes. I rotate religiously and apply ice before and after. They say after 6 months all of this can really subside significantly plus no flu symptoms or liver issues...it's all good stuff you are pumping in your system so even if I never have another attack, I am not harming myself. Does that help?

 
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Old 10-24-2010, 11:53 AM   #9
JodiH
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Re: Questions - Oral Steriods - What I am feeling

Oh, one other thing, you may get a knot under your skin too but that too goes away and they say you can massage it after 24 hours. I really don't do that because for me those knots are tender so they go away on their own. I just am sure to not reinject into the same spot each week. I would suggest you look through some of our old posts because I asked alot of questions too on copoxane and got great feedback. I don't know if it's the right drug for me as daily shots will get old fast but as long as you are one that is what is important.

 
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