[zygopetalum]

A lot has happened in the past couple of weeks since I posted in the neuropathy forum re: my evil pulmonologist and feeling that copd meds were contributing to neuropathy symptoms. My insurance is involved, new pcp or someone must have contacted them and they sent a Dr to my house (eek, had to dust) to do a minor evaluation. He seemed to think it was drug related as well but have not received my copy of report yet.

I may have been blaming the wrong med, someone in a COPD forum posted a link to info concerning steroid induced myopathy and it was all there including neuropathy symptoms. Pulmo had told me earlierI could stop the steroid or take a lower dose (didn't admit it had done anything but his behavior implied he suspected). I felt great for awhile but ended up not being able to breathe and had to resume low dose. Most of my symptoms disappeared (along with my ability to breathe ,lol) but they are back at a lower level. My questions is does anyone know if the drug is causing pain is it doing actual nerve damage? I sort of think it did, toes, etc. still hurt a little without it but info said recovery could be long or partial so don't know. I don't know what was really happening but it felt like nerves were less irritated or not being irritated as far up.

I think there may be something else I can take but have not gotten that far yet. I'm so angry at pulmo and former pcp, apparently the drug also tends to attack the small muscles in the neck, I've been Dxed with pain and weakness due to cervical radicuopathy, most of that went away too but neck is sore again with a low dose.

These drugs are blockbusters for Pharma, I get angry every time I see the happy ads on tv. They list side effects to avoid law suits but the wording seems to minimize what can really happen. Also discovered my pulmo has been a paid speaker for them.
Thanks, Zygo

[mrsD]

Was the steroid oral or inhaled?

Did you take other drugs while using it? Like antibiotics for bronchitis etc? Cipro, Levaquin, Avelox? These cause neuropathies.

Steroids taken in high dose orally can induce muscle weakness.
This may resolve when they are stopped. Steroids also reduce immune function so that viruses that are latent, sleeping in your body, may activate. Herpes Zoster--shingles is one that may occur and it causes alot of pain in the dorsal roots along the spine. If you had chicken pox as a child... you could have Zoster in your neck. Some blood work would reveal high titres of antibodies if active.

I had an reactivation of my old shingles down my arm this vacation in fact, due to the stress of going to the boonies with 2 cats etc. (I have a thread on PN about this). The pain was considerable. And I believe can be confused with other spinal pain ailments.

The steroids used to treat severe inflammation, typically are all generic now. Prednisone does not make any big bucks for Big Pharma anymore, unless you are using brand name Deltasone (Pfizer). The steroid inhalers are all brand name and very expensive and would be heavily detailed to pulminologists.

[zygopetalum]

Traveling with cats is stressful? lol I had a cat for 17 years who enjoyed traveling because she learned she was likely going to my parents farm where she could catch mice. I live in an arid part of the state and unfortunately she was not able to learn that there were still 80 miles left to travel after we entered the forest. As soon as she smelled or saw the pine trees she made it well known it was time to be there as far as she was concerned.

Its a fluorinated steroid inhaler, I've recently read that fluorinated types are more likely to be associated with myopathies. Its used in combination in Advair for COPD and alone as Flovent for asthma treatment, I couldn't tolerate Advair so have taken it separately for nearly 7 years. I've heard some suggestions it is less likely to cause problems in combination but I really don't know. The dose I was on wasn't particularly high but my body apparently didn't know that.

I don't remember what they were but I did take two of the quinolone antibiotics before I had surgery, I'm not sure what they gave me in the hospital. I got the tendon thing from one but the only neurological effect I noticed was that they made me twitch as I was falling asleep. If I had any neuropathy symptoms they were so mild I didn't notice them, it was at least two years after taking them that I began to have problems.

The only mention of neuropathy in the drug info for this is that it can occasionally cause a cortisol deficit and Churgg Strauss vasculitis. I've had a few episodes recently of fairly severe pain down the back of my legs that feels like it could be vascular but I don't know if it really was. I have found a few instances of neuropathy in some of the sites that report patient complaints. I have to laugh (in a grim sort of way), the literature states post marketing reports have seen' muscle pain, stiffness/rigidity/tightness.' I noticed my neck hurt less on a lower dose and then found several people in asthma sites who had discontinued it for that reason. I've been fighting that issue for 4 years and had no idea the med was be involved.

I don't think I have shingles, its pretty black and white..more med=more pain and less med=less pain. I'm currently taking 1/2 the dose that is prescribed for asthmatic children, I thought I was going to be able to get by on that but today has not been a good day and it may be accumulating again in my system or something. You once mentioned in a post that your pn made your carpel tunnel hurt sometimes. I've had mild carpel tunnel for 20 years that has not particularly bothered me until the past 2 and that seems drug related as well. I'm not sure which one is affecting it or both, it feels like the nerve gets irritated and swells, I get pain in my wrist and shooting pains down my fingers. I notice that in the ulnar nerve too, my 4th and 5th fingers get numb and tingle and there are shooting pains. Its better now but still there. Have had pain in the sural nerve that runs down the back of your leg and curves around the ankle bone for years, I don't have that anymore on a lower dose. My feet don't burn nearly as much as they did but I still have some that extends up my leg in a sock. I had none when I stopped the drug.

I have some weakness in my legs but its most noticeable in my arms, early this summer on a higher dose my hands felt like gloves full of sand tacked onto boards and it was hard to raise my arms. That's better but I still have a little weakness.

I'm being treated for ulcers but at its worst the pain sure felt like a neuropathy type, same type of burning as my feet with little 'knife slices' more than an acidic pain, I have no idea if that's a typical ulcer pain. I had some gastroparesis but that's better with the Zantac.

Sorry this is long, wish I still had my cat, sleep well Fuzzy.
Zygo

[mrsD]

Thanks for the additional information.

Pulmicort is one-- without fluorine.
http://www.rxlist.com/pulmicort-turbuhaler-drug.htm

Which brings up the point of proper use...if you are inadvertently spraying the back of the throat --which is common, then much of your drug will get deposited in the mouth, and be absorbed systemically.
http://www.brynmawrhealth.org/thcn/f...ique012008.pdf

So you could try another type of steroid inhaler and see if there is a change in your side effect profile. You can try a spacer for your Flovent. An empty toilet paper tube can be a quick substitute too.
http://www.webmd.com/asthma/guide/as...0%20%20%20%202

simple spacer:
http://www.medical-supplies.net/Stor...FUPBKgodXhYGDA

Also the more complicated Optihaler type for about $20. This is used mostly for the elderly, infirm, or children.

Neuropathy is a devil to diagnose and find the culprit. Your issues may be additive. Long term use of steroids do cause blood sugar derangements and that can be the trigger for neuropathy. Oral inhalers used proper do this less, but it is still possible. Combined with toxicity from fluoroquinolones as you already had, might be a factor too. We have had many people come to our PN forum over the past decade with PN from fluoroquinolone use. I have a post in our subforum there on drugs, that explains it.

We presently have 2 cats making this trip of 300 miles to our summer home. I have pictures in my profile album. Our new kittie is only 10mons old and rather high strung and she just can't stand this confinement. Our older one only meows a bit and goes to sleep. This year Weezie the young one, wouldn't let me play music with singing in it (" there are peeples in the car ---turn it off). She is very shy around strangers. The other cat who is 13 now, hates thunder so any bass lines in music she starts getting agitated (there are "boom booms" coming!) I only had one relatively quiet music choice in the car and I got tired of it playing more than twice. So it was a music free trip this year! Weezie esp howled whenever I put music on. Sigh! I need a little jive in my driving task to keep me focused... so this year the trip was very tiring for ME.

[zygopetalum]

You may be onto something with the spacer, I have one from years ago and will try it next time. I have some recent increased ocular pressure that is supposed to come from spraying yourself in the eye so maybe it will help that as well.

I know I may have some underlying neuropathy, its just the difference between having my quality of life absolutely destroyed and having something I can live with.
Thanks, Zygo

[mrsD]

Increased ocular pressures are known side effects from nasal and oral inhalation use of steroids.

A spacer may help also with this problem, as you want the steroid to be inhaled and not deposited on the mouth membranes.

Do remember to rinse and gargle after you use the inhaler and spit out the residue. That will help too.

[zygopetalum]

Thanks again, I've known steroids cause increased ocular pressure and there is no glaucoma in my family so assume the steroid is the cause. The suggestion to use a spacer is something I wish I'd have thought of years ago, should help with my chronic, annoying thrush problem as well. I've always tried to rinse well to no avail.
Zygo

[modmom]

I have been taking Advair 500/50 for a few years. My asthma flared up when I moved to the midwest, and developed severe allergies. I also take Flonase. I was relatively healthy and young (early 40s) and in great shape in spite of the asthma and allergies. Last year, I herniated a disc in my neck and tore a tendon in my arm. I had surgery for the disc 9 months ago, but the tendon in my arm has not healed. I've been diagnosed with "peripheral neuropathy". And I still have tendon damage in my shoulder despite more than a year of rest and LOTS of PT. Has anybody had similar experiences? I suspect that using Advair at such a high dose for a long period of time is to blame, but have no idea how to back that up.

[mrsD]

Welcome to NeuroTalk:

There are warnings in the literature about tendon ruptures possibly occuring with injected steroids into tendon areas.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1237870/

But there is a family of drugs called the fluoroquinolones, which CAUSE tendon ruptures, and the link to the drug and the event can be as much as a year after using one of these. They are antibiotics for infection.
Cipro (very common) Levaquin (also very common), Avelox, and others.

Many people receive one of these drugs for bronchitis, sinus infections, pneumonia, cellulitis, prostate inflammation, or urinary tract infections. It took many years to figure this out, because of the delay factor. And I have looked on the net for a long time for remedies for this, and because medical experts don't understand how this happens, a solution is still lacking.

These drugs also cause peripheral neuropathy, and it is suspected to be more likely when steroids are used or NSAIDs for inflammation at the same time. Fluoroquinolones are pretty neurotoxic. You can Google them and find websites devoted to their problematic side effects easily.

Think back and see if you were exposed to one of those drugs I listed, in the past before your injury.

It is really difficult to say about the Advair.

[zygopetalum]

Modmom, it sounds like you know that Flonase and Advair both contain fluticasone. I was on that combo for a short period early on and broke out with acne like a 14 year old, so for me at least there was a systemic effect.

The package insert for my Flovent (fluticasone) says it can 'cause soft tissue injuries,' that's ligaments, tendons, etc. It can retard healing, when I used a higher dose I bruised easily and small cuts took a long time to heal, but you should be healed by now. What criteria are they using to determine it has not healed? What does the pain feel like? Can you pinpoint it and describe it easily or is it kind of diffuse and hard to tell exactly what hurts?

What are your neuropathy symptoms?

Did the same Dr prescribe both your meds? I think you are probably right in your feeling that the fluticasone is involved, can you get by on a lower dose of Advair or stop the Flonase? What does your Dr say?
Zygo