Dear Steve,
I wanted to pass along something you may want to publish on your page, or anywhere else. Here’s the story: When cdc guidelines first came out, I had an idea – I have insight and much experience with US Rx ethical pharma, FDA, drug labeling and drug safety (and lots of other regulatory other stuff). The only thing I could think to do would be advise patients being forceable tapered or abruptly discontinued from medication to report this to FDA under the Medwatch program, which as you know is an FDA voluntary adverse drug reaction reporting mechanism (by phone or online or through physician)… so I kept posting notices on the many groups I’m in mostly in response to horror stories. My thinking was I know how on top of drug safety and data trends FDA is, and that if they saw an uptick in withdrawal symptoms reported, it would be hard data that can never be altered or erased, and they’d have to act on it, and also knowing that FDA’s authority was usurped by CDC in the guidelines and FDA is NOT a fan…
Not as easy to implement this strategy on an ad hoc FB group level, but it makes sound reason to me. So here is my little blurb- I thought if you wanted, you could share it on your FB group in a pinned post, or however, and share with any other group administrators you may know. Totally up to you but here it is:
(Well here’s FDA reporting link I have to go find the blurb again)
https://www.accessdata.fda.gov/scripts/medwatch/index.cfm?action=reporting.home
Here’s the blurb I came up with: Withdrawal symptoms, and other adverse reactions, are considered a serious safety problem with medication, especially when this is happening as a result of a doctor abruptly discontinuing or inappropriately tapering your drug treatment in a way directed against in the medicine’s US FDA approved prescribing information. In the US, you are encouraged to voluntarily report this, and any other problems with medicines, to FDA at 1-800-fda-1088, or using the form provided in the link below. This is one of the only ways that we as chronic pain patients have right now to have these instances documented officially by US government. FDA uses the data to detect trends (potential safety problems with medications) and works to mitigate them.
Filed under: General Problems
I tried communicating with the FDA and they pretend to be concerned and then turn on you and make it about your frame of mind. not the actual drug problem or the drugs they have removed from the market that could end the opiate crisis. I saved all my emails with them. I hope there is a class-action lawsuit someday.
I am hesitant to report to the FDA for the simple reason that the doctor has to be able to find out about these complaints. Are they anonymous or can the doctor find out who filed the complaint. I don’t want to be dismissed and lose what little I have left.
How does this information just not ending up being used against the use of opiates. Instead of the government agencies looking at this as a problem with how doctor cut patients of medication to quickly it is used as a excuse not to treat pain with opiates at all.
Not for the addicts, I Agree.
This was meant for those with issues that are quite literally fighting for the life saving meds we need to live a decent life while suffering from Incurable Chronic Diseases, Not for the junkie who got hooked.
We need and are fighting for the chance at life, not to get high. There are facilities for the addicts that have struggle with addiction. We only have 1 choice and 1 chance at this to get it right.
Again,
This was not meant for people who have addiction issues, but for the 10 million fighting for relief of pain.
Its time for a class action law suit. Ive been through hell and back, literally. Yes I had a injury and spinal surgery. By the time I had surgery I was dependent on Vicodin. I was sent from the surgeon to a pain clinic where they immediately put me on cancer/end of life doses of Fentynal, Percocet, Soma, etc..
Why didnt pain Dr’s try to take me off opioids after one year??
I didn’t ask to be a addicted. 18 yrs of the Parisite Pain Dr. abuse on me.
Yes, I singed there the pain clinic agreement, when Dr’s required it, but, I was under the influence of the Pain Dr. Parisite Poison!!!
Now im off opioids. I was on opioids for 2/3rd of my life. I raised my children being a Addict and my drug dealer was my Pain Dr.
Good news, there is a class action suit set to go Jan 15, 2019 with Robert D. Rose you can find him in the pain group Vets & Civilians Fight Back. Please hurry & sign up.
Funny thing is I see people post every day wanting a class action suit, you would think Robert would be turning people away wouldn’t you?
I have filed in the state of Washington pro se a 34 page complaint that other states will be also filing and then startes will all be joined together to form the biggest class action lawsuit in history. Robert Rose jr., has all the information regarding the complaint and the information to join the lawsuits that have been filed as of this past Friday. If anyone would like to join you are encouraged to do so. We need to get the government out of our federally protected medical records their practicing medicine without a license and it’s killing people. I can be reached at daisym1567@gmail.com and can help anyone trying to get filed or join an already existing state lawsuit. There are still states that need volunteers to file which costs a filing fee of $400. For many of us including myself that’s not to bad a price to pay for the quality of life for the tens of millions affected by the phony opioid crisis. We encourage family friends and patients to all get involved this time. Everyone needs to join for humanity sake.
Where did you get such a cocktail of drugs known as the Holy Trinity. Florida was the only place I knew that was giving out those kind of drugs thru the pill mills.
Xanax/Ocyvodone/Soma is only called the “Holy Trinity” by addicts, or. Dr’s/people who learned the lingo from the black.market/abuse community.
It’s a completely feasible treatment for very select patients. The 20 year Old getting 3 month monster supplies… Many times a month, from miuntiple Doctors..
THAT is not a legit Pain Patient, with spasticity, and sever Panic Disorder (Diagnosed by a seperate Psychiatrist, who is in contact with your Pain Management Dr., and ONE Pharmacy.
This man had a Long actingacting opioid, Breakthrough meds, and a muscle relaxer.
It’s a common grouping, and for some patients, closely monitored, docented, and selected, totally viable and safe.
If one feels over sedated, having compulsive use, upping dosage w/o Authorization etc… Then they need to be sent to an addiction specialist, probably tapers off of these meds,anf find something that can help them.
If no longer needed, then they just need to be honest with themselves, and their Doctors, and be slowly tapered, and be happy that their pain has healed!
We can’t lump Pill Milk “Non Medical treatment, with Professional, Pain.Managment Dr’s, that follow standards of practice (not voluntary “guidlines” meant for Primary Care Dr’s) and Document, Document Document.
I think that’s a plausible action consumers can take to let the FDA know just how widespread the ripples are. To someone who has not gone through withdrawals, there is absolutely no way To make an impact on them unless patients describe it in detail. Every agonizing detail from stomach cramps to sweating to repeated monthly withdrawals when the meds run out early due to the increasing pain, loss of wages, friends, etc. should be told. Chronic pain is just as much an epidemic as opiate abuse is. We have to paint a real and honest portrait of our lives every chance we get.
The part of this that concerns me is the fact that if you’re calling the fda complaining about withdrawal symptoms that just seems like it’s giving them more cannon fodder for opioids. It’s not the medications were complaining about , it’s lack off . So what if we all call complaining about this and it starts to in some way affect our plight negatively . We don’t need any More . Other than that . It’s atleast another avenue of getting our voices heard if done properly
I thought the exact same thing .It may give them more ammunition to NOT prescribe them to patients that truly need them.. We must be very careful about how we “repot” side effects of the very medications that many patients are fighting for, not against!
Exactly..I tried it and then suggested an alternative and they turned on my frame of mind, not the fact I was on moriphine and fentanyl but the dose too low and now at the ER getting Ketorolac/Toratol injections all the time andmy primary care giving me one week suply of it. so, they don’t care if I have kidney failure, but no more opiates. I’m in Ecuador now getting better treatment and off the morphine and fentanyl. The butrans patch is awesome and unfortunately I get Ketorolac at the pharmacy with no script but if I need it that what I have to take. My givernemnt want me to die off or shutup and sit in pain all the time. My insides are a mess like I was gut shot, but the biggest mass of scar tissue, neurosis, and area so deeply filled with adhesion it cannot be touched. I tried to have surgery in 2016 to release the adhesion’s and its was no possible the deep walls and all my organs, pancreas, liver totally covered.