They call prednisone the devil’s miracle drug and I think I am beginning to see why. Taking it has completely removed all of the symptoms of sarcoidosis, but has replaced it with a totally different set of symptoms. It is like trading the pain and can’t breathe disease for the acid indigestion, ever hungry, mood swinging, heart pounding can’t sleep disease! I think that there are actually more side affects with the prednisone then the sarcoidosis. Hay but at least I can breathe and walk!
Last night was one of the worst. I just sat there staring into open space trying to sleep but couldn’t. I might as well be trying to sleep while going for a walk for as much good as it was doing me. So now the problem is that I just got home and could fall asleep right now, but if I do I will wake up at 11:00 PM and won’t be able to sleep. So for now I get to hold out and hope to be tired tonight.
The other side effect that really has been troublesome is strange endless hunger that if you don’t feed turn into storming acid indigestion. I must have eaten six Rolaids but they aren’t being very effective at stopping the problem. I’ll have to try Tums. When I have my next doctor’s appointment I will ask him about other medicine. Don’t want any strange interactions.
I have a dentist appointment tomorrow to check on a troublesome tooth. My dad had sarcoidosis for 10 years! During this time he had a tooth that was drilled and patched wrong so that it kept a bit of infection festering at a low level under the tooth. In the end it swelled up and the tooth came out, once it was gone his sarcoidosis went away. Although there is no real studies or anything conclusive that would link the two there is a general thought that the tooth problem kept irritating his already hyped up immune system and keep this sarcoidosis going. My sarcoidosis flared up for the first time right after I had an abscess tooth. They may not be related but I don’t want to make a 10 year mistake, especially when it is so simple to check out. So for now I am going to aggressively treat this. I’ll let you know what we find.
One thing is for sure. I have got to get into a better eating and sleeping rhythm.
Michael
7 comments:
Hey Mike: I am sorry that you are having a hard time on the prednisone. I find that I can't take it anymore. Yes, it did help me with the sarcoidosis. I hope your illness gets better. I will pray for you.
Wow! It’s amazing thing to me that someone would be willing to pray for me from just reading about my story online. Thank you! This actually means a great deal to me. =)
You said that you can’t take the prednisone anymore even though it helped you. If you don’t mind me asking, why can’t you continue to take it? Are there effective alternatives that are helping you?
Mike, for the acid indigestion ask your doctor about omeprazole (marketed under names like Losec and Omepral). This has had an almost magical effect for me in getting rid of this particular side-effect of prednisone.
The other day I was wondering if my Dad's chronic cough and breathing issues are because he might have sarcoidosis that has not been diagnosed. They keep coming up with things like chronic cough and water in his lungs like they did with me in the beginning. I guess I had better doctors.
Wow, it really appears that Sarcoidosis is misdiagnosed all the time! The one thing that worked out well for me was not accepting my doctor’s opinion and seeking second opinions until I was confident in the diagnosis. It had to make sense to me, I just wasn’t willing to accept their opinion.
I hope all goes well for your dad.
Yeah your post made me think about it. Thanks
Hi, Mike,
I ditto the comment on omeprazole. It magically took away the reflux with the prednisone. So worth it. You can get a prescription for it and maybe save some money if your insurance pays, but you can also buy it OTC (Prilosec 20mg).
Thanks for sharing your comments about trading the sarcoid symptoms for the prednisone side effects. I've only been on the pred two weeks and my breathing is so much better. No more heavy chest. And my cough is diminishing too.
But I too have all the prednisone symptoms you describe. I'm up at 3am ready to do something. But there isn't much to do at 3am. Then I'm ready for bed at 8pm, so I'm missing family time. I'm wondering about changing the time of the pred to see if I can function during regular hours. I'm now taking it at 8am.
Thanks for the blog.
Johannah in San Carlos, CA
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