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IV steriods - my doctor wont give them to me


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Old 10-28-2010, 07:43 PM   #1
sophiekaris08
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IV steriods - my doctor wont give them to me

So yesterday I had my neuro appointment and I got my official diagnosis.

I think I am dealing with it okay - I am more concerned with the time I have had off work. I dont know how to deal with work and tell them what I am going through. The MS Society here in Australia can help also and educate my employer with what is happening.

ANYWAY - so at the moment I am dizzy beyond belief I had to hold onto things to keep myself up in the morning. I still have a bit of numbness in my legs ( subsided due to the oral steroids). If it wasnt for this IMENSE dizziness and feeling like I am on a rocky boat, I could go back to work. My significant other says I am acting erratic today and forgetting my words in the middle of sentances and things like that. He said to me I need to "slow down". Just to add I have 0 pain but I do have tingles and zaps throughout my body every now and then.

Anyway my neuro said to me he doesnt think I need IV steriods he said that I am not bad enough for IV steriods and thinks that I have to just ride out the symptoms I am going through at the moment? He thinks that IV steriods arent the best solution and with the Copaxone and reduced inflammation that my symptoms will get better.

At the moment I feel like I am going crazy.

Sophie

Last edited by sophiekaris08; 10-28-2010 at 07:44 PM.

 
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Old 10-28-2010, 10:01 PM   #2
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Re: IV steriods - my doctor wont give them to me

Listen to your neuro and your significant other. I often lose track of my thoughts and words, you just need to be patient and let your problems pass. They will pass.

Take some time off and indulge in some self-pampering. You will get better. If you keep pushing yourself, your body has no choice but to shut down. Stress is your enemy. Stress can come in many forms- simple family gatherings, emotions (good or bad), temperatures.... You need to take time to discover your limitations and triggers.
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Old 10-29-2010, 05:37 AM   #3
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Re: IV steriods - my doctor wont give them to me

Steroids are used for acute exacerbations (relapse, attack, flare-up), not all exacerbations require steroids. There are medications that can help with some symptoms (symptom management meds), steroids should not be used for symptom management.

Steroids have long term and short term serious side effects and the more steroids are used the less effective they can become.

There are different medications that can help in the treatment of Vertigo, speak with your Neurologist.

I agree with your Neurologist
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Old 10-29-2010, 07:46 AM   #4
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Re: IV steriods - my doctor wont give them to me

Quote:
Originally Posted by sophiekaris08 View Post
My significant other says I am acting erratic today and forgetting my words in the middle of sentances and things like that.

At the moment I feel like I am going crazy.
The feelings you are having could be the result of the steroids.

Steroids cause mood swings/emotional instability and what is referred to as "roid rage."
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Old 10-29-2010, 06:01 PM   #5
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Re: IV steriods - my doctor wont give them to me

I agree with Snoopy and your Neuro for another reason. The more you use steroids, not only the bigger the risk for you to have side effects, but the less effective steroids become. You want to save the IV steroid use for really serious excaberations.

Does sound like you are sufering from some anxiety at this time, which is normal, but have you spoken to your neuro about getting some help with that? He might be able to prescribe you something like Xanax to take the edge off and help you to stop obssesing with the little things...

Your significant other is going to be a great source of support, but can also make you hyper aware of what you are doing, thus making you uncomfortable and also overly sensitive. MS doesnt change you- and knowing what your body is doing is only positive if you treat it with the respect it deserves. know when to slow down, know when to ignore it...this comes with years of practice... youll get there. For now, just try to ride this out. It will get better.
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Old 10-29-2010, 07:21 PM   #6
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Re: IV steriods - my doctor wont give them to me

I'm on the other side of this "debate". I get a monthly IV treatment. My neuro does DEXA scans to monitor my bone density to make sure the steroids aren't causing any long term problems. I find that around 7-10 days before my treatment, the pain in my spine and arm get significantly worse, the "zap" feeling down my spine gets more frequent, my head feels worse, everything starts to get worse. After I have my treatment I feel instantly better. Who knows, maybe its my body becoming used to the treatment, I don't know. The 3 weeks of feeling a better version of horrible along with monitoring how the steroids are affecting me long term make it a good option FOR ME. Maybe that isn't the case for everyone else, but its enough for me and most months, what keeps me going is knowing that feeling better is right around the corner.

If your neuro isn't recommending it, there is likely a good reason for it. Sometimes the specialists' choices of words aren't the best and saying you aren't "bad enough" might be rubbing you the wrong way. Have you asked him how you can better manage the problems you are dealing with that make you want to have the steroids?

 
Old 10-29-2010, 09:20 PM   #7
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Re: IV steriods - my doctor wont give them to me

Quote:
Originally Posted by Wilc516 View Post
I get a monthly IV treatment. My neuro does DEXA scans to monitor my bone density to make sure the steroids aren't causing any long term problems.
Hello Wilc516,

There are those that do "Pulse" steroids with good results, I'm not sure if that is what you are getting.

Unfortunately, there are other long term serious side effects. Steroids can cause Cataracts, Necrosis and Cushings Disease just to name a few.

MS is a life long disease and I, personally, would hate to have a severe exacerbation and not have steroids help.
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Old 10-30-2010, 08:38 AM   #8
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Re: IV steriods - my doctor wont give them to me

Wilc,
The results from pulse steroids, the way you are doing them, have been proven to help many....and its NOT the same as using 5 days of IVSM to control symptoms. You are obviously being watched closely for side effects...

The other poster, who is having what most would deem "normal" MS symtoms, isnt in the same boat, and probably shouldnt be on IV Steroids for any length of time, especially after just coming off oral.

Saving IV steroids for extreme excaberations, is what the norm is....and what most of us count on, when we get to the point where we realize this isnt just a normal MS flare, but in fact an excaberation....I dont disagree with the type of treatment you are on, but still agree that for the other poster, IV steroids wouldnt be the road.

Nikki
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Old 10-31-2010, 02:38 AM   #9
sophiekaris08
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Re: IV steriods - my doctor wont give them to me

Hi everyone,
Thank you for all your replies
At the moment I am tapering down off my Oral Prednisolone
  • 50mg for 4 days
  • 25mg for 4 days
  • 15mg for 4 days and then stop.

I feel horrible at the moment. So weak my feet are frozen and I am dizzy. In the morning I had to hold onto the walls so I could walk to the kitchen.

I know the I should listen to my neuro but is it possible that these steriods are having no effect? They are such a low dosage I have been told and I shouldnt be having that many side effects from them.

Should I call my neurologist tomorow? My legs are still the same numbness and same with my hips and lady parts and my forehead. Or should I just be patient and wait it out?

I know rest also plays a huge part with this I have also started to change my diet completely and cut out all sugar and saturated fats along with vitamins.

 
Old 10-31-2010, 05:52 AM   #10
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Re: IV steriods - my doctor wont give them to me

Yes you should be calling your Neuro, just for peace of mind. Is it possible that the steroids themselves are causing you to have side effects? Im not suggesting that you are allergic or shouldnt be taking them, but I am thinking that the steroids you are on, are causing you massive amounts of stress and agitation, which is possibly a side effect- its worth questioning.

This is another reason why you dont want to be on HIGH doses of IV steroids...if low doses make you feel this way, high doses arent going to make you feel better. You appear to be susceptible to the negative issues which accompany steroids.

As far as what you said about your symtoms, Im back to hearing anxiety. You said your feet are frozen and you had to hold onto the wall to walk into the kitchen. Your feet arent frozen if you could walk. And, when the day comes that your legs WONT propel you forward, youll know what frozen is. Then, youll be needing steroids to reduce the inflammation. I think what you are feeling is both scared and anxious, which is perfectly normal; however you are also under the horrible side effects of Prendisone, which can make you feel so much worse than you are. MS isnt a disease which is going to overnight change you or put you in a wheelchair. You have to put this in perspective and realize that if you can walk, and see- in the big picture- youre fine! And yes, you are having a relapse, thus making you feel lousy and off balance and probably like everything isnt working. (Been there!) but it will pass! and the best thing for you right now is to try to take your mind off it and sleep- and do things which will occupy your brain in a positive manner; a movie? Stupid TV? a good trashy novel? A long chat with an old friend? Anything that makes you forget even for an hour, is a good idea.

Call your doctor, ask if there is something he can give you to take the edge off so you can relax and rest. And ask if its possible the steroids are making you feel like you are describing. Its not MS which is causing some of what you describe; but its also not UNUSUAL to feel the way you are....

Nikki
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Old 10-31-2010, 07:32 AM   #11
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Re: IV steriods - my doctor wont give them to me

Hello sophiekaris08,

Whenever in doubt or concerned always talk to your neuro, he is the best one to answer your questions...we are not medical professionals.

Compared to IVSM the Prednisone you are on is a low dose, however, the reason you need to taper is because of side effects and how much worse you could feel if you were to just stop.

Steroids, oral or IVSM, can make you feel worse befor feeling better. Sometimes steroids do not help. The relapse and recovery can take weeks to months to resolve, with or without steroids.

Numbness is a sensory symptom. Steroids can sometimes help but many neuro's will not prescribe steroids for sensory symptoms. Sensory symptoms do not usually respond to steroids.

I have had 5 exacerbations, 3 of them have been quite severe. I used oral steroids for only 2 of the exacerbations and have waited out the other 3 exacerbations.

With or without steroids my exacerbations lasted about 6 weeks with the severe ones taking longer to get back to baseline...I need to regain my mobilty and it was frustrating, tiring and very difficult.

I will use symptom management meds when needed but I stay away from steroids. Steroids do not slow progression, they only shorten the duration of a relapse...sometimes. Steroids don't even stop damage from happening and for many symptoms can be just a temporary solution to a permanent symptom or one that will come and go.

There is nothing easy about this disease and steroids, oral or IVSM is not a miracle.
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Old 10-31-2010, 11:35 AM   #12
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Re: IV steriods - my doctor wont give them to me

Quote:
Originally Posted by Snoopy61 View Post
Steroids can cause Cataracts, Necrosis and Cushings Disease.

I would like clarify -- Necrosis is Avascular Necrosis also known as Osteonecrosis.
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