I wish my doctors would acknowledge this and tell me what to do.

I recently stopped both my Flovent and Spiriva meds for COPD and my neuro symptoms diminished about like watching the river dry up, unfortunately I don't know what the long term results would be as I couldn't breathe very well so restarted them. I'm better at my current lower dose but symptoms are still there.

I've called everything neuropathy in a (wrong ) descriptive sense but I've more recently found that a lot of it seems to be entrapment syndromes, something swells and I get carpel tunnel, ulnar, and radial/medial (I keep forgetting which is which) entrapments. I think my leg pain is related as well, I have symptoms consistant with tarsel tunnel and there is one involving the sural nerve that also sounds like pain that I have had.

I've been Dxed with cervical radiculopathy (not causing much of the arm stuff) and have muscle stiffness in my neck which is known to be associated with the meds, I think I also have some swelling and entrapment there, its better on less drugs too.

I also still have some burning in my feet and it seems to be starting in my arms as well.

I've been offered neurontin for this, is that appropriate if much of the pain is entrapment? It won't do anything for the swelling?

When I first got all this I thought it was the Spiriva, it makes me numb and causes parathesia. Its too long to explain here but I am beginning to think both it and the Flovent play a role. Flovent can cause a neuropathy at times by increasing eosinophils which cause microvasculitis in the nerves (finally found that). Spiriva is supposed to be limited to the muscaric receptors but it isn't, I've always gotten some numbness and parathesias from it. I've been wondering if it could cause neuropathy type symptoms by inhibiting acetycholine (sp) the nerves need to fire when I exercise, etc

This may be too scarey for comments...there is some controversy about Spiriva, a liquid form not approved in the US has been shown to cause heart attacks..the heart is a muscle. There have been some heart attacks with the type I use but pharma is scrambling to minimize it and its generally blamed on COPD effects. I cut my dose down a few months ago because my heart was feeling a little strange, it does cause increased heart rate and I was starting to feel a little something that felt like arrythemia, and I don't know if Neurontin would just cover something like that up.

I can find every single thing I have had on Drugcite, my pulmo told me that if a SE does not meet 5% statistical significance its not related (weasel), when I told him last year I thought I was going to have to go on Neurontin he winced, frowned, looked out the window and did not comment. My PCP seems to feel I have autonomic neuropathy related to COPD but hasn't said anything either.

Any ideas? Im trying to exercise which really improves breathing (not so much the neck and other pains ) and Im about ready to see if I can improve enough to chuck both meds and try herbs or something.

Sorry this is long, mostly I was wondering about Neurontin and the entrapment. I feel like they are just tryng to throw the most common drug at me without bothering to understand what is going on. Does it matter?

judi

Judi,

It's possible, and very probable, that they don't know what to do or what to tell you, and are afraid to tell you (to do) something that may cause (further) harm.

As is often noted by MrsD here, doctors learn what they know about medications from drug company reps, who are given a sales pitch. Granted, it's a highly technical sales pitch, but a sales pitch nonetheless. Doctors aren't chemists, biochemists, or pharmacologists, and even the drug companies themselves don't always know how or why a drug works (which is why we sometimes get accidental discoveries like Viagra).
http://thelistcafe.com/10-important-...ed-by-accident

I'm sorry that I don't know what to tell you either. I'd like to be able to tell you something philosophical like "listen to your body!" but you've got some complex stuff going on there, and I wouldn't want to tell you the wrong thing either...

I sincerely hope you can find a doctor to help you through this; it seems like, in some ways, you're getting close to some relief.

Best Wishes,

Doc

Thanks for the kind words Dr Smith, I was kind of attacked by pain when I restarted the meds and as the steroid also causes some depression I was crabby and feeling pretty sorry for myself. Things seem to have leveled out to former levels now and I'm doing better except the shingles have reerupted... I ran across a couple of sites that called shingles a SE of Spiriva ?!..the gift that keeps on giving...but I do have mild symptoms.

I know they feel that the benefits of the meds outweigh the risks and SE for me, its just pretty hard to swallow when the pain levels have such an impact on my life. Pulmo was angry with me a couple of appointments ago and said, "These meds aren't keeping you alive, they are just for your comfort and you can stop them all if you want to" ..huh? We don't have a very good relationship.

I know Drs are busy and get a lot of info from drug reps, there was one at the office when I went in last week. My pulmo has also been a paid contributor at pharma conferences. As someone who grew up in the 60's I try to separate my residual anti establishment additudes from clinical observations but its hard. More .

I am learning things and getting closer, when I first got neuropathy symptoms I could barely walk sometimes. The neurological insights here have really helped. Mrs D mentioned 'rebound constriction' in another thread, that is really severe with Spiriva and I think I will try very slowly weaning off it to see what happens. I do listen to my body and its saying "Bad juju" on that one. Its hard to titrate.

I ran across something that said researchers in Cuba (Cuba has research?) have isolated a bronchdialating compund from banana peels, I wonder if it really works or if they were just trying to market all those banana peels.

I know a really funny joke about the generic name for Viagra but I don't want to get banned.

thanks again for the thoughts,
judi

Separate? My "question autho... everything" attitude (also being a child of the '60s) is the reason for my clinical (and cynical) observations. What I have trouble reconciling are those and my residual idealism.

Doc

Idealism with a healthy side order of cynicism. That is pretty common for our generation. I am glad I was able to enjoy the 60s, just before the autoimmune problems started. Peace.

When I become queen I shall ban all blockbuster drugs and decree that Pharma must be motivated by altruism and work for the good of mankind.

What's that up in the sky?


Doc