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Old 10-18-2016, 09:23 AM #1
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Default Prednisone hell

Last week I was having difficulty breathing worse than my usual dysautonimia shortness of breath problems. My albuterol pump did nothing. I went to my allergist/immunologist and she did a PFT and said I needed a 5 day course of prednisone and a symbicort inhaler and possibly singulair.
I told her that 2 years ago, I tried prednisone for my herniated discs and by the third day I was a shaking burning mess. I have chronic gastritis. She said she would only give me 20 mg a day and to take with 2 zantacs and food. The first day I was fine and by that evening my breathing had opened up. By the second night I was up the entire night through with severe burning of my stomach, mucus pumping up my throat, burping, shaking, racing.... felt like I was losing my mind! It was terrible. I had to stay in bed all day and could barely eat or deal with anything. She said not to take it anymore but to continue the symbicort and add the singulair. Not only did the steroid shred my gut apart, but I have a continuous crawling sensation on my shin that I haven't experienced before. This really stirred my nerve damage and my stomach is still absolutely terrible. The pressure coming up from my mid abdomen feels like it will blow my head off even with the max dose of zantac. Any hopes of using prednisone for my "autoimmune" disease is over. I think it would kill me. I thought maybe if I protected my stomach there would be a dual benefit of calming the asthma and my nerve problems. Maybe its not autoimmune then?
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Old 10-18-2016, 10:31 AM #2
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Lightbulb

Just a reminder... Singulair is supposed to be taken every day whether you have symptoms or not. It is a preventative, and not for emergencies. It is too slow to work on acute symptoms.

It is for blocking the release of leukotrienes and once the leukotrienes are released, it is too late.

Steroids when they are so poorly tolerated suggest that you have an infection of some type. Steroids flare infections...so your reaction could be that you have some major issue with infective organisms. Steroids quell the immune system and when that happens, a pre-existing infection can flare when steroids are given.
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Old 10-18-2016, 11:14 AM #3
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Lightbulb

I'd like to add... there is an older treatment for gastritis...
it is called Carafate liquid.

I am unsure if it is still used, but it used to be given to patients on steroids. It coats the lining of the stomach, to prevent steroid damage.

Carafate oral : Uses, Side Effects, Interactions, Pictures, Warnings & Dosing - WebMD

The use of this product has dwindled because it can affect absorption of other drugs. But for people who don't use many drugs for other reasons, it can help with acute gastritis.
You can discuss this with your doctor.
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Old 10-18-2016, 09:18 PM #4
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Quote:
Originally Posted by Healthgirl View Post
Maybe its not autoimmune then?

That's a really excellent point. It's one thing to have all the gut stuff and sensitivity issues. It's another to have a steroid flair your autoimmune neuropathy. Has this happened to anyone else on this forum?



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Old 10-18-2016, 09:33 PM #5
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Quote:
Originally Posted by madisongrrl View Post
That's a really excellent point. It's one thing to have all the gut stuff and sensitivity issues. It's another to have a steroid flair your autoimmune neuropathy. Has this happened to anyone else on this forum?



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That's what I'm trying to figure out. Prednisone is even used for autoimmune stomach stuff. Maybe something else is causing these autoimmune markers that isn't autoimmune. Hope I get some answers soon. My stomach is a disaster.


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Old 10-18-2016, 09:35 PM #6
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Originally Posted by mrsD View Post
Just a reminder... Singulair is supposed to be taken every day whether you have symptoms or not. It is a preventative, and not for emergencies. It is too slow to work on acute symptoms.



It is for blocking the release of leukotrienes and once the leukotrienes are released, it is too late.



Steroids when they are so poorly tolerated suggest that you have an infection of some type. Steroids flare infections...so your reaction could be that you have some major issue with infective organisms. Steroids quell the immune system and when that happens, a pre-existing infection can flare when steroids are given.


I think it may be some type of infection, but how could it be this many years? Also I have the ANA and the anti smooth muscle anti bodies and a few other things that correlate with autoimmunity. Maybe it's both. I just wish one of these doctors had more than 20 minutes to figure me out.


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Old 10-21-2016, 04:53 PM #7
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My neuropathy is thought to be immune related.....and prednisone made me worse. I was on 60 mg (seems like a high dose, doesn't it?) On the third day of taking it, my legs felt weaker, almost "jello like". I lost muscle mass quickly in my calves while on it.
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