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Allergic to So Many Pain Meds I am Running Out Of Options
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wrkinprogrss posted:
I have an assortment of conditions that range from Extremely Painful (Degenerative Disc Disease in my lower back and Classic Migraine that occurs in a cluster format) to Moderately Painful (Fibromyalgia and Diabetic Peripheral Neuropathy), to Mildly Painful (Osteo-Arthritis in my fingers and a bone spur under on my heel UNDER my Achilles tendon making it essentially inoperable (for me as it would require detaching the Achilles tendon and the odds of infection are so high and the lack of antibiotics I am not allergic to makes the odds of losing my foot 50-50).

I am taking Lyrica, Cymbalta, and Topomax which keeps the symptoms of all of the above from being totally disabling.

I recently went to a Pain Management Specialist. I gave him my list of allergies. We confirmed these are TRUE allergies, not sensitivities. My allergist has already told me he cannot desensitize me to any pain medicines.That is a possibility with a few antibiotics, but not with Pain meds. Of the pain medicines my existing Doctors and I are aware of, the only one we knew were safe for me are Stadol NS, and Fentanyl. Obviously, this is not a great situation to be in. I hammered at him to tell me what could I take if I got just a "normal" bad headache, like everybody else in the world gets. EVENTUALLY he saw the light! I have NO options and he began to think. I cannot take a sniff of Stadol for every average headache. I would be dependent in no time. Even worse, I would likely develop an allergy to that too! I must make that teeny, tiny bottle of Stadol last 6 months or I will not get any more! So I use it only in extremis.

Eventually he hit upon Methadone as a medicine I have never taken and therefore I am probably not allergic to it (yet). I am going to take my first dose in my allergists office next week just to play it safe. What are people's experience with it? I was born with a super HIGH tolerance to medicines that make most people sleepy, high, etc. I can take 4 Benedryl and be wide awake. Even the very first time I had anasthesia, after, the oral surgeon who removed my wisdom teeth asked my Dad if I was I drug addict because it took 3 times as much IV medication to keep me under as it ought to have. Other people report all these wonderful sounding effects and I get nothing. Not even pain relief until they run the dosage up nearly to the max. Fortunately the doctors who have been with me for a long time are familiar with this effect and don't try to treat a migraine with a fly-swatter.

(Oddly, things that jazz you up, like epi for an allergic reaction or caffeine, or even Sudafed drive me UP A WALL!!! I cannot stand that feeling! )

Does anyone know anything about this patch I saw mentioned called Butran? Is this related to Stadol (which I have been taking for about 20 years and am STILL NOT allergic to)? The generic name for Stadol is similar to the Generic name for this stuff. I need to ask my Pain Management Doc if this medicine is a possibility!!!
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cweinbl responded:
Butran has many side effects.


Have you tried Fentanyl? It's 80 times more potent than morphine and is available in patches that last two to three days. Many people find that it helps them live a fairly normal life, with few major side effects. Many chronic pain patients are, like you, extremely tolerant to opioids. Fentanyl may be appropriate for this condition because it is so powerful, yet available in dosages ranging from 15 micrograms to 100 micrograms. For breakthrough pain, it's available IV, IM, as a liquid, tablet and Trans-buccosal. Good luck.
cweinbl
csw2@bex.net
 
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annette030 responded:
I take methadone for chronic pain, it is wonderful for me. It is very cheap. Less than $30 a month for me, I have been on opioid meds daily for more than fifteen years.

Take care, Annette
 
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wrkinprogrss replied to cweinbl's response:
Well, darnit! I have taken Fentanyl in patch form (I mention I am not allergic to it in my 3rd paragraph - I realize I wrote a book there so it is no surprise you missed it!). I specifically asked the Pain doc if Fentanyl came in another form than patch because I obviously could NOT slap on a 3 day patch for every ache and pain. His response "No, Fentanyl is for Cancer patients". I have used it after surgery very successfully. I am going to go back at him with this. Thanks for the info!
 
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wrkinprogrss replied to annette030's response:
Annette,

Thank you for helping to allay my fears. Cost is thankfully not an issue as I have good insurance, but do you find you have to take more and more to have the same effect?

Peace,
Anne
 
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77grace responded:
Hi wrkinprogrss ,
Sounds like you have a lot going on !I am sorry for you but we all here can relate at some leveal!!!I also suffer chronic pain ,neck and back !I have been taking methadone about 15 years !It works pretty good !!!I have areally high tolerance so I don't think anything will kill all the pain !!!! But it helps enough that I can get out some days and do some things I need to do !!
As far as Butran !I know it as in a patch form and I think it's made with strong vicdan !Something like that !
Good luck stay in touch 77grace
 
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wrkinprogrss replied to 77grace's response:
My second visit to the Pain specialist was very productive. It was for a procedure, not an office visit. Based upon our discussion, my history and physical, he thought I would benefit from shots that went essentially in the dimples of my butt. These shots were guided by radiograph and he was excellent with the topical numbing medicine. The shots were Kenalog(I thought that was medicine I had given to my dog?). Just as he warned my blood sugars have been high since then so I have been adjusting with short acting insulin to knock it down. He said the Kenalog would take 2-10 days to kick in. That was Friday and today is Sunday and it has kicked in substantially already. I can already move more easily this morning. I like the way this guy works!

I go back in 3 weeks and we will discuss a different kind of shot into my L4-L5. That is where I have been getting them previously but the last 3 shots I tried did nothing. He says he has a different approach. I am willing to listen.

Folks, I appreciate the support more than I can say. I have a dream to be a writer. Is that crazy? I need a clear mind and must be able to focus razor to accomplish that goal. So I like that this Pain Management Doctor is helping me with knocking out the sources of the worst, constant, sleep-robbing, pain first. He really does seem to know what he is doing.
 
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annette030 replied to wrkinprogrss's response:
No, actually, I have been able to reduce it, albeit very slowly. Most recently, I have cut two of the three doses I take daily in half.

Take care, Annette
 
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wrkinprogrss replied to annette030's response:
Annette,

That is fabulous news! This might be an answer for me! At least until I develop an allergy to it as well. I appreciate your responsiveness as well as everyone else's! This is a nice group of folks!

Peace,
Anne
 
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annette030 replied to wrkinprogrss's response:
Please get allergy testing to find out what you are truly allergic to, and then see a pain management specialist to see what your options are as far as drugs are concerned.

Take care, Annette
 
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wrkinprogrss replied to annette030's response:
I fell in my home (I do that fairly often as I am newly blind) and have injured my neck. Now I have a new pain shooting down my arm! I go for an MRI on Tuesday. The Pain Doc was wonderful. He EVEN saw me in the hospital, which few doctors do nowadays. He has given me a prescription for fentanyl patches (which I have locked in my safe) which have made life livable. They are really pretty weak, but in combination with Baclofen muscle relaxer (which he has me using instead of the Soma) I am getting good relief. I actually like the Baclofen better than the Soma.
 
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cweinbl replied to wrkinprogrss's response:
Interesting... your doctor is full of BS. Because if you read all of the material available for Fentanyl Transdermal, it says, "Not for acute or post-surgical pain. Only for the chronic pain patient who has become opioid tolerant." Look it up for yourself.


Nor is Fentanyl Transdermal "only for cancer patients." If a doctor said that to me, I would run away as fast as possible and then report the doctor to the state board of health. Millions of chronic non-cancer patients use Fentanyl Transdermal and the other Fentanyl delivery options mentioned below.


Fentanyl comes in patch form, is also available IV, IM and Trans-buccosal (infused through your gums). At one time or another in the past, I used each delivery format. That's four ways to take Fentanyl. Many people use the patches for chronic pain and then use the buccosal tablets for breakthrough pain. And when I say, "many," I mean millions of people. Look it up and then calmly take the proof to your doctor.


Finally, Fentanyl is for chronic moderate to severe pain. You are correct that it's not for every little ache or pain. If you do not have chronic pain, then a less potent medication that does not result in allergy would seem more appropriate.


Usually a chronic pain patient in a comprehensive pain management program with DDD and who is allergic to most pain drugs can try the spinal cord stimulator and/or the intrathecal infusion pump. The two devices were designed for the patient who is unable to benefit from most pain medications. Perhaps you are a candidate for one or the other. The downside is that surgery is required to implant and to remove the devices.
cweinbl
csw2@bex.net
 
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annette030 replied to wrkinprogrss's response:
I am glad you are getting decent relief. So many people swear by Soma, I also like Baclofen.

Take care, Annette
 
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19lindy responded:
To Wrkinprogrss: I am sorry for your suffering and allergies, it is bad enough to have one without both. I can emphasize as I can not use aspirin or related products yet I need them. Fentanyl works for me for chronic pain and recently I was told to use muscle relaxers for my back pain as I also have disks out of place. To my surprise the relaxers work and helped stop some of the worst pain I have at least for a short time. I do not know what you can do about allergic reaction, but you might try to go to the Mayo Clinic or some place with the same reputation to see if there is help for your allergies. If you are financially able you might research pain centers located in other countries? Sometimes they are working in areas that have not yet been looked at In America or due to restrictions American centers are not willing to get involved in.
I pray that you will find relief soon.


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