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Limbo Landers and Newly Diagnosed This is a place for those who are still in "limbo" and those who have been recently diagnosed with Multiple Sclerosis . A place to share your thoughts and experiences.

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  #1  
Old 05-05-2013, 08:16 PM
ctkbl ctkbl is offline
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How long does it take for the IV steroids to start working on fatigue?

Hi! I am a newbie here and to MS. I was diagnosed with MS a couple of weeks ago, and I had my first IV steroids infusion last week. The symptom that has had the biggest impact on my life is severe fatigue. I've had several other symptoms like numbness, dropping things, weakness, pain, migraines, vertigo, balance issues, etc., but the fatigue has put my entire life on hold for the moment.

I heard numerous times from friends and the infusion nurses how I would have so much energy after the steroids that I would be cleaning out closets and having trouble sleeping. I'm still waiting for that burst of energy, but it hasn't come at all. In fact, my fatigue is as severe as it was prior to treatment, if not worse.

I feel like I've had a very positive outlook about my diagnosis, and I've been trying to be proactive with my overall health and treatment. I'm a very busy mom of three, school-age kids, and I was working a busy job until the last few months when I started getting so sick.

I pushed so hard to finally get a diagnosis and start treatment, thinking that I might get some normalcy back in my life once I got the steroids. I was on cloud nine the first day of steroids, assuming that I would be feeling better soon. Now that it has been a week and I'm still in bed or on the couch most of the time, I'm feeling really down for the first time about MS.

How long does it take for the steroids to 'kick in'? Is this as good as it is going to get for me?

I am really hoping to have at least a few days of feeling good before I have to start taking betaseron next week. If how I feel now is the good part, I'm really dreading the potential of flu-like symptoms headed my way.

I would greatly appreciate it if someone could share their experiences with me that might give me some hope that I might be able to take part in life again. It would help me to hear that I might still have a shot at getting to a better level of functioning that I am at now.

Six months ago, people used to often tell me, "I have no idea how you do everything that you do." Now, I spend my days mustering up enough energy to take a shower.

Is this going to get any better??
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  #2  
Old 05-06-2013, 04:11 AM
MSer102 MSer102 is offline
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Hi. I'm sorry your feeling so bad!

The thing about MS is that you never know when your going to start feeling better. There are things you can do to try to keep MS in control but other than that you really just have to go where it takes you.

If you've already finished with your steroids then they already have kicked in. Steroids don't kick in the way that a lot of people think that means. Steroids suppress inflammation and if someone's symptoms are coming from inflammation they might start to feel better pretty soon as the inflammation goes down. Steroids are active for about a week while they're still circulating around in your body. That's when they kick in. After about a week the steroids are already broken down and aren't active anymore so there's nothing left to kick in anymore. Everything the steroids do has already happened.

The problem is that it seems like by the time most people get started on their IV steroids the myelin and the nerves have already been damaged. Steroids don't heal the nerve damage. Nerves have to heal by themselves and that takes as long as it takes. The idea behind steroids is that they calm the inflammation so the nerves can start to heal faster. But faster still just means as long as it takes. Sometimes its fairly quick and sometimes its pretty slow. Sometimes nerves don't heal at all.

Steroids aren't really a treatment for fatigue. The energy boost the nurses were talking about is a short term side effect of steroids. They usually cause insomnia and make people hyper. Back when I first started having IV steroids parts of my house got pretty clean and sometimes at odd hours in the middle of the night. That happens with a lot of people. But it only lasts for a few days or maybe a week. When the steroids break down and are gone the hyper side effects wear off.

Steroids aren't a treatment that makes fatigue go away. It sounds like for some reason you didn't get the hyper side effect. On the other hand steroids make some people tired. That's more of what happens to me now. My house doesn't get as clean anymore. You might be one of the people who just gets tired from steroids.

MS has its own kind of fatigue. For a lot of people with MS fatigue is an every day fact of life. A lot of people get help from anti-fatigue medicines which are stimulants. It sounds like you haven't had a chance to talk to your neurologist about that yet. So at your next appointment be sure to ask about medicines that might help your fatigue.

Your so new to MS I don't want to overwhelm you with information. For now it might just be the easiest thing to see if one of the medicines helps your fatigue. As time goes on and you get a chance to start learning more about MS you can start learning about eating more healthy and getting some gentle exercise. Both of those can help with fatigue.

Some people's fatigue gets better with some dietary supplements and you can read about them here and in other MS forums. My fatigue got much better when I started taking enough vitamin D to get my blood level up to what's recommended for people with MS which is about 50 to 70 ng/ml.

There's research that shows that people with MS need more vitamin D than people in general do so its important to know what your blood level of vitamin D is. If your vitamin D wasn't checked when you were in the process of getting diagnosed its a good idea to get that done. Your primary doctor can order the test for you so you don't have to wait until your next neuro appointment.

MS is quite a shock that nobody is really prepared for. It can take a long time to get through the process of grief. You might even want to think about talking to a therapist for a while to help guide you through it. Your family and friends can be supportive but they can't take your medicine for you and having a therapist help you through the bad early days is kind of like taking your medicine.

The good news is that a lot of people do feel better after they get diagnosed and get their medications and lifestyle in order. Its just that it can take a while for that to happen. So hang in there! It might take some time but you will start to feel better.
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  #3  
Old 05-06-2013, 05:02 AM
22cyclist 22cyclist is online now
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While I agree that steroids leave the bloodstream in about a week, their effects can stay behind for a number of weeks. This is why it is not normal to get another exacerbation within 4-6 weeks of an IVSM infusion. It takes me about 2 weeks to start feeling better after an infusion. It is an individual thing. I also agree that you should ask about MS fatigue medications. MS has a special kind of fatigue that will just make you sleep no matter what is going on.

A vitamin B6 or B complex is also a great fatigue fighter.

I hope you feel better soon.
Lisa
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  #4  
Old 05-06-2013, 05:08 AM
MSer102 MSer102 is offline
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cyclist I'm glad that you agree with me but it looks like you forgot to publish my post.


**Moderators Note: Boy that was weird! I approved it three times before it went in! It was in before I replied but who knows it went poof! 22cyclist**

Last edited by 22cyclist; 05-06-2013 at 05:39 AM..
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  #5  
Old 05-06-2013, 07:17 AM
ctkbl ctkbl is offline
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Thank you so much for taking the time to provide such detailed repsonses!

I am already taking 60,000 IU/week of Vitamin D and 1,000 mcg/day of Vitamin B12. I am scheduled to recheck those levels next month with my primary care physician.

My neurologist also recommended taking Migrelief (which contains B2 and Mg) and CoQ10 for migraines, and that combination of supplements has worked wonders for my headaches.

My neurologist first started me on 100 mg a day of Amantadine, with the option of 100 mg again before lunch if needed for fatigue. That helped a little, but the second dose interfered with sleeping at night. Now she has me taking 200 mg first thing in the morning, which seems to help the fatigue somewhat without interfering with sleep. However, I'm still doing only a small fraction of my normal activities, so I will keep trying to find the right fatigue treatment for me.

I guess I just confused the burst of energy side effect of steroids with it actually improving my overall fatigue situation. I see my neurologist again in a month to check on the Betaseron, so I'll request another fatigue medication at that point if I'm not better by then.

On the bright side, all of the numbness, weakness, and pain in my legs and left arm/hand have improved since the steroids. They weren't too bothersome yet, but it surely is nice to feel like I have 'my' arms and legs back.

I appreciate the support of this group. I think there is something about writing out my feelings that is therapeutic in itself. I agree that seeing a therapist is a good idea, and I have done that once since this all started. I may try to start seeing him regularly too.

Thanks again!
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  #6  
Old 05-27-2013, 03:25 PM
lynn.flegal lynn.flegal is offline
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Angry Lynn

I can't believe I found this page. I was diagnoised with ms 4/4/13 and on 5/21/13 had a major flare-up. Got the 3 day IVSM. Had no energy burst, just blah. By the third day the fire in my feet and legs was gone, but by day 5 it started coming back. It feels like a campfire under both my feet traveling all the way to my waist. In the past 2 years it has gotten harder to do my job, it just wears me out, and with the pain that slows me down even more.
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