worse than I thought
 

Some of you may recall I've felt my COPD meds were causing/contributing to my neuropathy. I was doing ok with less pain on lower doses but my breathing deteriorated over time so I had to increase things a bit and % of pain returned.

Spiriva has been causing some airway rigidity or something so pulmo let me stop it and try the new low dose Advair. That didnt work out too well, I had facial swelling, chills/fever. etc. but was able to stay off Spiriva for a little over 2 weeks.

It took several days because the 1/2 life of the med is about 4-5 days but during that time my neuropathy magically resolved into arthritis, sore feet and muscle pain. I've always questioned the idiopathic neuropathy DX, I don't know if I even have it at all now.

I looked at the med, it works on the muscaric receptors in the lung, M1, M2, and M3. I found that those same receptors in the CNS MODULATE PAIN. I think thats what has happened to me, I thought it felt like something was causing pain from things that shouldn't even be painful. I cant even describe how it feels, it makes me numb and in pain at the same time. I don't know why the steroid in the Flovent seems to affect it, I have gotten blasts of pain when I used the latter. When I was off the Spiriva I only felt a very slight bit of warmth in my foot on one occasion when I used it...strange.

I'm not sure if any doctor has actually believed my assertion that the meds were at fault, the 'best' comment I've had was that it doesn't matter, Neurontin would be treatment either way. I've really been reluctant to take it, I don't know if it will mask progression of problems from the med and Spiriva already makes me a little flakey and sleepy. It is well known that anticholinergics cause memory problems in seniors and I think I'm getting some of that...it isn't supposed to pass the blood/brain barrier but it must be getting in there somehow. I got a lot 'brighter' off it. I'm really afraid to take Neurontin with that.

I don't know what to do, my pulmo is now telling me I don't need any
COPD drugs anyway to keep me alive (I'm at the severe stage), they are for comfort only. I think he either just is trying to make me stop complaining or he knows exactly what is going on and doesn't want to tell me. My oxygen levels stay higher when Im medicated, I don't believe that doesn't make some contribution to keeping poeple alive. I don't know if he is so disinclined to try other meds because he knows it wont work or if he just doesn't want to mess with it and risk liability because he would not be following prescribling protocol.

I feel like Im having to choose death by drugs or death from COPD. I know no one here will really know the answer but any opinion concerning the neuro aspects would be appreciated. I have no idea at this point if I have the same type of nerve hyperexcitation as neuropathy or if its more of an inflammatory process. I kind of feel like my nerves are sunburned,

Sorry this is long, I'm depressed and spending all my time running up and down the street because exercise does improve my breathing and then I get pain.

judi

I just started the inhalers, etc. for COPD and I've never had such pain in my life! It's only been 10days and I can barely walk!

I talked to my pharmacist first, and then called my doctor and told him that these inhalers cause MUSCLE AND BONE PAIN according to the pharmacist and then I looked it up online and it's also listed that way on the FDA WEBSITE!!!! My doctor said "Well, I've never heard of THAT" and I have to go in on Monday to "talk too him about it." What? What is there to talk about? I can barely WALK. I'm a chronic pain patient to begin with, as I have a crummy spine that has been operated on 3 times --- and now 3 heads of neurosurgery and different hospitals have deemed me inoperable! So my only course of treatment is pain medication, as I've had every single thing that a pain management doctor can do. :eek:

And he wants to "talk about it?" If he thinks I'm going to continue on these things he's crazy. I've lived in horrible pain for 26 years already until he finally found a combo of drugs that keep me comfortable. I'd rather just die than use these inhalers!

Why don't these doctors keep informed of things? I realize there's thousands of drugs, but the ones he gave me were SAMPLES. Shouldn't he have looked at the inserts BEFORE he handed them to me? Sure seems like it to me, because even the inserts say "causes muscle & bone pain."

Good grief.

Hugs, Lee

Spooky!!!!! I heard one worse. I KNOW it to be true. A neighbor, not young, was given a script by her pain doc to take water therapy on an outpatient basis at the local phys. rehab hospital. This guy is the chief of staff. She called me on the phone and asked me if it was ok to take water therapy for an hour three times a week wearing her Fentanyl patch. I have used that pool many times and it fluctuates between 95-100 degrees. She said the doctor was unaware of any problems wearing them in the pool for the full hour. She thought she remembered reading in the insert that this was dangerous.

You're in my thoughts and prayers. Enough is enough and you've had too much. Gentle hugz.:hug:

thanks
 

Thanks for responding Leesa, I feel really alone with this mess much of the time, I'm sorry it seems to be happening to you however. I've thought I'd rather die than take these meds too but not being able to breathe can be kind of uncomfortable too:eek:.

I don't know if you'd want to consider trying any of this, this is just what i've learned. If he gave you Advair that was probably the culprit, it bothers some people who have no pain issues. There is a lower dose 45/21 or you could see if he'll give you Flovent and Albuterol. Just make sure he doesn't give you any higher dose of Flovent than you need. I developed some issues with Flovent but I think the dose was too high for me and Spiriva may have been a large part of some of it. A lot of people take Spiriva with no problems and some doctors are starting to titrate it by having people take it 3 times a week or so. The half life of the stuff is around 5 days and thats where the problem is I think, it accumulates and the dose ends up too high in some people. Just be careful.
.
I got bronchitis after I posted. I have a new neighbor who is a heavy smoker and shes killing me (looking for another apt). My doctor let me try Combivent which is partly a shorter acting drug similar to Spiriva. I don't know how its going to work, I'm having some neuropathy symptoms. I took it for 2 years a long time ago and had no problem. I may have developed a true allergy to that kind of med, it does make me itch.

I even know old ladies shouldn't go swimming with a Fentanyl patch...scarey.

judi