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Prednisone - how long do you have effect?

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Old 05-31-2018, 09:36 AM   #1
Olle
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Heart Prednisone - how long do you have effect?

Hello everyone! So happy to be able to write to you all with this question!

I have MG, was diagnosed 2 years ago. My first year I did a lot of Prednisone, immunosuppressants, together with mestinon. After a year, my body weakness was basically gone but my eyes never became fine.

I have the classic symptoms of mg in my eyes, droopy eyelids, double vision and hard to focus. The eyes have always been the worst for me, it is like torture to use them some periods.

The last year ive been on a low dose of Prednisone and Mestinon. I did a month of higher dose Prednisone about 4-5 months ago. This made the eyes a lot better, as it has done before, until a few weeks ago when it started to bother me again.

My quesion to you is:
If you have been on Prednisone, gotten good effect, and tapered off to a lower dose, how long do you have effect that good effect? How long does it take until you have to increase the dose again for a period of time?

Im having a hard time with Prednisone and Id rather stay on these lower doses. This is why im doing research of how other people handle this.

I am forever grateful for any reply regarding this issue.

Kind regards from Europe <3
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AnnieB3 (06-02-2018)
Old 06-02-2018, 12:37 AM   #2
AnnieB3
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Hi, Olle. Welcome to the across the pond forum!

Would you mind saying how you were diagnosed?

The ocular muscles fatigue faster than other ones. I don't have time right now to do the research for you (sorry). Throwing more steroids at the problem might not help in the long run. And you need to be careful about abrupt adjustments in steroids. Your adrenal glands are no longer working, due to steroids doing that job for them! Adrenal fatigue from drops in steroids that are too large can cause an adrenal crisis, which can lead to an MG crisis.

What drugs are you still taking? If you are better, Mestinon can cause too much acetylcholine to be present, making muscles weaker. Some patients do overdose on Mestinon.

Steroids helped my ocular muscles first, then the rest. Could you possibly have an additional issue going on?

I think you should have a good conversation with a neurologist. I can't really say what is going on with your ocular muscles. Doctors have far more knowledge about how the muscles work, etc.

I hope you can figure out something to help with your ocular MG. Sometimes placing a cool washcloth on the eyelids or blowing a small fan at the face can help.

Annie
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Old 06-09-2018, 04:30 AM   #3
Olle
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Quote:
Originally Posted by AnnieB3 View Post
Hi, Olle. Welcome to the across the pond forum!

Would you mind saying how you were diagnosed?

The ocular muscles fatigue faster than other ones. I don't have time right now to do the research for you (sorry). Throwing more steroids at the problem might not help in the long run. And you need to be careful about abrupt adjustments in steroids. Your adrenal glands are no longer working, due to steroids doing that job for them! Adrenal fatigue from drops in steroids that are too large can cause an adrenal crisis, which can lead to an MG crisis.

What drugs are you still taking? If you are better, Mestinon can cause too much acetylcholine to be present, making muscles weaker. Some patients do overdose on Mestinon.

Steroids helped my ocular muscles first, then the rest. Could you possibly have an additional issue going on?

I think you should have a good conversation with a neurologist. I can't really say what is going on with your ocular muscles. Doctors have far more knowledge about how the muscles work, etc.

I hope you can figure out something to help with your ocular MG. Sometimes placing a cool washcloth on the eyelids or blowing a small fan at the face can help.

Annie


Thanks for your reply, Annie!

I was diagnosed through antibody blood test (0,58nmol/liter) which was considered intermediate by my first neurologist, negative by my second, and positive by my current one (who is the top specialist in our country). That together with a positive RNS finding in orbitalis oculis set the diagnosis. Note that I was negative and/or intermediate in EMG and SFEMG!! So, it was a hard time getting a diagnose and I needed to change doctor. I had a remarkable effect from the medicines and I've really gotten my life back

Now I am on prednisone 7,5 mg daily and mestinon 60*4.

You write that steroids helped your ocular muscles. For how long did it help? Are you still good in the eyes? What are your doeses, if i may ask?

Thank you a million times.
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AnnieB3 (06-09-2018)
Old 06-09-2018, 08:35 PM   #4
AnnieB3
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I only had IV and oral steroids in the hospital during my MG crisis (2005). I am on inhaled steroids due to asthma (from Mestinon). The inhaled steroids help, but my eyelids are always drooping off and on. I have double vision on a regular basis. I guess I'm just used to it.

Steroids don't necessarily help with droopy eyelids. I hope others will give you their experiences, those who have been on other medications. I'm only on Mestinon.

I'm glad you have a solid diagnosis. That's great. You might need to discuss treatment options with your neuro (is s/he an MG expert?).

I think that's the best thing to do; have a conversation about options.

Annie
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Old 06-10-2018, 09:38 AM   #5
Olle
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Thats interesting, thanks for the info!

Yes, shes an MG expert, i will talk to her more about this
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