Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Nutty Doc and News Meds

my sister takes neurontin for fibromyalgia, it does make her arms feel weak.

my sister takes neurontin for fibromyalgia, it does make her arms feel weak.

It sure seems to me that if anyone should qualify for a new DMARD it is you.(From what I've read in previous posts) What is your dr. waiting for? It must be quite frusterating for you to not be able to go in the direction you feel will help your disease progression. Maybe you need a new dr? Easier said than done I know but it is your quality of life. Hope she gets you onto something soon.

Deborah

She did try me on the enbrel last year and I was on it for almost 5 months, but it nothing for me except make me tired and feel heavy. It was so hard to drag myself out of bad because of the heavy feeling. Felt like I weighed 500 pounds when I got up and a thousand by the time I went to bed. She didn't want to keep me on it since it wasn't helping any. I think because the enbrel didn't effect the liver is why she was ok with trying it.
Because she was ok with trying it is why I can't understand her hesitation with any of the other newer DMARDs. Thinking either the newer ones can effect the liver or she is thinking it's just a waste of time, because the enbrel and arava didn't work. The way I see it is...some drugs work and some don't and we have to keep trying until we find one that does. The metho worked fantastic for me, but it damaged my liver...maybe she is thinking that the only drug that will work for me are the ones that can do too much damage and she just doesn't want to chance it.
Like I said though..as for me, I am willing to take the chance.
Another thing I was thinking too...about a year ago she lost a long time patient on one of the DMARDs (think it was the enbrel). He ended up with sepsis and by the time they got him on the operating table, it was too late and his stomach just blew up. Maybe this has scared her into not trusting any of the DAMRDs, but she has to remember... every one is different.
As far as the neurontin, it seems to be helping alot and I have been sleeping really well when I take it, but I know it's what's causing the head aches.
Bummer! Seems like that's how it always is whenever I find something that helps. Can never have something positive without adding something negative.
I decided that I am going to keep on using it and hope that maybe my system will get use to it and the head aches will stop. If it continues for more than a week though I will have to stop, because there is nothing worse than waking up in the AM with your head throbbing and I can't keep taking the tylenol the way I am because it's not good for my liver.
I have an appt with my rheumy on Sept 12th and that's when I will pin her down and find out why, when it comes to the DAMRDs, she keeps going back and forth. As far as I know there is the remicade, kineret and humira left to try... Am I forgetting one?
Hugs,
Lisa

Hi Deb,
I don't think I would ever go to another rheumy. I have been seeing her now for almost 7 years and she has always been very good to me, other than this one issue regarding the DMARD. I have heard some horror stories as far as others and their rheumy and I count my blessings I have the one I do.
I have been going over in my mind every reason I could possibly think for her hesitation, but realized I have to stop going over it in my mind and go over it with her, which I am going to do at my next appt.
Every time a new dmard has come out she has gone over it extensively with me. First was the remicade, then the kineret, and just recently the humira. But that's as far as we got because she changed her mind each time.
The remicade we actually got a little further with and I actually thought we were going to start that one. So far I have been on metho which damaged my liver severely, but it worked great, and enbrel and arava, which did nothing for me. She wasn't worried about the enbrel or arava after the liver damage, well, she was a little, but still started it. So, why stop trying now is what I wonder.
I was just thinking that the hesitation started right after she lost a patient on a dmard and just maybe that could have something to do with it. We do have a very good relationship and she is a caring doctor, but maybe she is actually more caring than I thought. Who knows!
Regardless of the reason, we need to get passed it and do something other than what we have been, because like you said...yeah it is frustrating not going in the direction I would like.
Well, I better stop here before I write a book. I sometimes get so carried away
Thanks for your reply!
Hugs,
Lisa

Lisa,
Hope things get better for you !

I don't know anything about nerve pains .. But I do remember OldGeorge found an effective solution for his nerve damage:
https://www.kickas.org/cgi-bin/w3t/showflat.pl?Cat=&Board=support1&Number=98767

Farabloc...I know it sounds very much like it should be thrown in the "alternative" category.. but it has been studied and reviewed by respectable institutions.
http://www.farabloc.com/mstud.html

regards,
z

"So long and thanks for all the fish" - Hitch Hikers Guide To The Galaxy