Accessing a “Controlled” Medication (Carisoprodol) – a Pain in the Neck
One of the most insidious barriers to proper treatment of Rheumatoid Disease, and other painful diseases, is something that has become a touchy topic and a political hot potato: the controlled status of various medicines to treat disease symptoms. For the past few years, I’ve encouraged patients to recognize and consider options for both disease treatment and symptom treatment to live their best lives possible. Most people with Rheumatoid Disease live with a dozen or more symptoms; and disease treatments provide incomplete relief.
Here on my front porch, I’ve sometimes shared about my own treatments, when it seem like it might help others. Tonight, I find myself where the roads of Helpful-to-share and Touchy-subject intersect. I hope telling my story helps someone understand the patient perspective related to the battle some authorities are fighting against “controlled” medicines. I’m not sure how it could be controversial to treat the suffering of fellow human beings who endure so much through no fault of their own, but I know it needs to be addressed.
Example: Treating symptoms of Rheumatoid Arthritis in the spine
Rheumatoid Arthritis is a pain in the neck. In fact, it’s worse than that – it damages the neck. For years, mine produced unexplained abnormal tests. Since my diagnosis, the neck is one of several places that is almost always actively inflamed. I’ve sought care for my neck for the past few years through a practice that specifically treats spinal issues. Care has included facet and epidural injections, radio frequency ablations, oral medications, and monitoring through periodic imaging. It is not perfect, but it has allowed me to continue to function while my neck is damaged and inflamed, but not yet in need of surgery.
What’s it like? It’s not as bad as it could be, I know.
Most of the time: It’s tender. There are noticeable strange snapping movements in some of the joints – I can feel them and hear them, sometimes when I move or just swallow. If I look up, I have to support my neck with my hand. I often have numbness in either hand.
Sometimes: It’s unbearable and blinding pain. I can’t lift my head or carry on a conversation. The pain is the same icepick as in my shoulder, but in a neck joint. Sharp pain either shoots down my arm or across the base of my skull past my ear.
Finding the right medicine can be a big help
Like most people, I hate side effects. The point of medicine is to make my life more normal – not make me nauseated or make the room spin! Over the past few years, the doctor prescribed various different medicines to manage the flares in the spine. I’ve learned to test out low doses at home in the evening to check my response. And I eventually found what works best for my neck (and my lumbar spine –not the same). When my neck starts to go from “most-of-the-time annoying” to “sometimes-unbearable-and-blinding,” I take a therapeutic dose of NSAID (800 mg of ibuprofen in my case) and 250 mg of carisoprodol, generic for Soma. This combination of anti-inflammatory with a low-dose muscle relaxer, together with a cup of coffee and ice on my neck usually means the difference between painful-but-functioning and lie-in-the-dark-unable-to-sit-up.
(Here’s a fair article on Soma about less side effects of the low dose, with caution for long-term use. Genetic differences appear to play a big part in how it is metabolized. You’ve heard that before.)
When did it become controversial to treat suffering?
When the back doctor moved out of state, my case was transferred to a colleague. After a couple of months of bad neck symptoms, the bottle of Soma I’d used for over a year was almost empty. So I brought it with me to the appointment and asked a nurse if the new doctor could refill it. The nurse said, “There is no way she is filling that for you.” I said, “Really? How come? I finally found something that helps my neck and I have no side effects.” The nurse yelled at me, “There is no way the doctor is going to risk her license to give you this addicting drug.” I felt like I would cry, but I didn’t. I did say something about how I’m just trying to understand why that would be the case. The nurse went around the corner and l heard her tell the doctor, “She’s giving me an argument.” That, and other things we observed there, convinced me to find a different replacement for the doctor who moved away.
I rationed the Soma I had, never taking the medicine at night because I usually sleep very deeply with a high pain tolerance. A few weeks later, there were only a couple of tablets left, when I had a regular checkup with my good GP. I showed him the almost empty bottle and told him it helped my neck. He had just read my latest cervical spine MRI report and nodded that of course he would write the prescription. The nurse created a state-required embossed prescription that restricted it to a particular local pharmacy. I dropped it off at my local CVS and returned in a few days to pick it up. They said, “I’m sorry but your insurance refused to fill this without a prior authorization from the doctor.” I said, “I brought a prescription from the doctor; isn’t that prior proof that he authorized me to buy it?” Yes, I know industry considers “prior authorization” to be a separate thing, but I wanted to point out how unfair it sounds to a patient. Anyway, I told the pharmacy assistant that I knew it wasn’t her fault and drove home thinking, “If my doctor took the trouble to create the prescription that the state of Florida is requiring, then he has already pre – authorized the Soma…”
There’s something wrong with this picture
Just think…
A young bright mind like, say, my daughter Katie Beth, can study hard for 7 years to learn to do pharmaceutical research to create new medicines…
She can dedicate her life to discovering a medicine to help suffering people, likely working a whole decade on a single project. Do you realize that most medicine researchers spend their whole careers not seeing an experimental effort actually become a medicine that can be sold and used?
Meanwhile, across town, some child’s dear parent or some parent’s dear child gets sick.
And you guessed it – one of those days, the young eager scientist creates just the right medicine the sick person can use.
And eventually, the medicine is approved as safe to market.
Will the patient be able to get the medicine when her doctor prescribes it? Or will authorities make doctors too afraid to prescribe it? Or will a 3rd party payer – insurance or government – it doesn’t matter which – be able to decide the patient doesn’t need it? Can adult patients be trusted with needed medicines created specifically to help them?
A battle over “controlled medication”
I’m a cheerful girl and I’ll be fine – I’m always sure of that – so don’t worry about me…
I checked with the pharmacy each day last week, and the doctor’s office and insurance company a couple times. Someone at the insurance company said the problem was I “asked for so much medication.” I felt angry and told her she had no idea what my diagnoses were or why I needed it.
Why did it seem like they thought I had a drug problem?
Finally, my neck did what we feared – it flared again. I could’ve taken a stronger medication to make it bearable, but I needed to be alert to attend my son’s play, so I decided to pay almost $13 dollars cash for 3 tablets out of my prescription. The pharmacist said the insurance woman was mistaken: if I’d been prescribed the larger 350 mg dose, it would’ve been easily approved with no pre-authorization for $10 for the whole prescription. The lower dose is newer… and more expensive.
I kept calling and the low-dose Soma was finally approved for $45 for the prescription minus the 3 tablets I’d already paid for. I paid $58 altogether – six times as much as for a higher dose. And, I had to drive across town the next day to get the medicine because they don’t have any in stock since “it was on hold and it’s a controlled medication so we can’t get it sent here for you.”
To some authority somewhere, “controlled” must mean “prevents crime,” but to doctors, patients, and pharmacists, “controlled” means more expense, more time, more pain, and more hassle. There must be a way to crack down on whoever improperly sells pharmaceuticals without making innocent people suffer.
This post describes my experience and reaction to it, not medical advice. Please read the Disclaimer.
Recommended reading
- Rheumatoid Arthritis Symptoms Not Alleviated by Disease Treatment
- How Rheumatoid Arthritis Pain Affects Women’s Lives
- Rheumatoid Arthritis Requires Disease Treatment and Symptom Treatment
- Five Things I’ve Learned about Rheumatoid Arthritis in the Neck
- Laura’s CVS Commercial with Kelly’s CVS and the “a” Word
- The 10 Fundamentals of Rheumatology Care for Rheumatoid Patients
Kelly, I just wanted to thank you for talking about your neck pain. My first rheumatologist swore that my neck pain had nothing to do with my RA. That was 6 or 7 years ago. Recently another doc laughed when I told her this. She said the neck is one of the first places that sustains damage. Argh! I am scheduled for an epidural steroid injection on Thursday. I use zanaflex with good results for night time relief. Gabapentin helps somewhat without overwhelming sedation. I have used Soma in the past but docs act like you are a drug seeker if you ask for it. God bless you for all you do. Hugs.
Wow, Lee Ann, thanks for helping me feel validated today. And thanks for sharing your experience too – I know it helps others who read with questions and don’t post..
It was a surprise, like you said, how some doctors don’t realize the neck is usually affected, and that people act strange that we need some kind of relief from the symptoms. Nothing we planned to have in our lives, for sure!
My current rheum doctor confirms that the neck is the first to see damage as well, my rheum should have been dx when I had my first c spine surgery back in 2009. She specifically questioned why my “previous” rheum dr did not search for the RA dx then? All I could do was roll my eyes… As I know the reason was, he was “not informed”. Kim
Unfortunately, a lot of what you described is a result of the new laws recently enacted in the State of Florida. It is getting harder and harder to get prescription pain meds and I fear it is going to get worse before it gets better. The way I have been able to tolerate it is to stay with the same dr and the same pharmacy. I actually use a family pharmacy (where everyone knows your name, to quote the CHEERS song). I also consult with the pharmacist and have her do a “medical management” where we go over each one of my meds and discuss its uses, side effects, and if there are any counter indications between meds. The pharmacist and I consult every few months or so. I have found it to be very helpful. I am not sure if this is making it a little easier to get the medications I need? But, I am trying to do everything I can to not get “caught” in a bad pain situation. Kim
I agree that using the same pharmacy has several benefits and I do likewise, as I mentioned. The CVS pharmacist told me yesterday that the new law requiring my ID for this med yesterday is actually an international law – and this med is on the list. And the new laws in Florida is another important aspect, true. I believe that may be what caused the doctor and nurse to feel the way they do about prescribing it – which is particularly sad since it’s a pain mgmt practice.
Sadly, insurance companies now seem to being doing to same thing with any drug that seems “out of the ordinary.” I had to fight a similar battle to get my Arava Rx filled, and ultimately applied for patient assistance because my insurance refused to pay for it. I’m glad you finally got your meds, Kelly. Would it be possible/worth it to get the higher dose and cut the pills up?
Great point, Megan. I did talk about this with the pharmacist and we may have the pharmacy actually cut them for me next time – pill splitting is messy, difficult for RA fingers, and you lose some medication that way. But it will be worth it to avoid the hassle and outrageous expense of buying less meds for more money! This time, I would have had to go back to the dr to get another actual prescription to change the order – part of the new laws in our state to cut down on illegal drug sales.
I wonder how much of this actually does cut down on illegal drug sales. seems to me, those who don’t mind operating outside of the law will still find a way to obtain what they want, while those who are respectful and law-abiding are left to suffer.
I agree! That’s what I told the pharmacist yesterday. It only hurts the honest pharmacists, doctors, and citizens – the crooked ones are not following policy anyway..
Megan,
I have found the Costco pharmacy the cheapest by far for my Arava. Of course, I get the generic. I paid less than $60.00 for a 90 day supply with no insurance.
You do not have to be a member to use their pharmacy.
Kim
Kelly,
Thank you so much for sharing your story. I live in central Florida and have had a heck of a time with my pain meds. When I was diagnosed with RA, I took celebrex for my pain and inflammation, and it worked very well. The next January, all insurance companies available to me stopped paying for it. To pay for it myself would be around $500/month. I.E. what I was bringing home every two weeks. Since then, I have been on narcotics. I have gone through, Loritab, Percocet, Morphine, Ultram, and walked away from a pain Dr. who wanted me on Dilauded or Methadone. Really!!! From Celebrex to Methadone!! I currently am on pain meds that mostly work. This means that on a “normal” day I’m able to get out of bed, play on my computer for a short time, and if I feel well enough I may be able to cook and put the dishes into the dishwasher. However, it means that on a bad day, I’m in bed with no pain meds to help. This is all because of insurance companies who refuse to pay for meds and because of the change in Florida narcotic laws. Most of the laws I agree with. But the threat behind them has made everyone in the health care field act as tho I’m out to get them, and the next thing I do could cause them to loose their job, or worse, go to jail.
Every month to refill my meds I call and argue with the receptionist. Then the nurse will call me and I’ll argue with her. Finally, she’ll let the Dr. know it’s time to renew my meds. The Dr. will write the rx and I have to call every two hours until the office has caught up and I can pick it up. Then I get to go to the pharmacy, where, I swear, they do a full FBI background check before agreeing to fill it. Last month, they stated that since I had filled the meds on the 17th, I couldn’t refill them again until the 17th. Which is 32 days for a 30 day med. I got to go through 2 days of withdrawal. When I explained to them that the 17th was not 30 days, they could even count it out on a calendar, they just said it was policy and nothing they could do.
I have talked to Florida State Health Board and they basically told me that I need to consider those who use the drugs illegally. My legal use of the meds was not important. Gotta love it!
Thank you for letting me ramble! You really to do make a difference for us!
Thanks for sharing, Samantha. It gives a good picture of the “hassle” experience of refilling “controlled” medications.
My heart goes out to all of you with this terrible RA pain to bear, and I hate that you have to go through all this extra “pain” and stress of dealing with these medication side issues! I know this is often said, but I wish there were people in power or somehow in the public eye now who had RA (not that I would wish it on anyone!) and that person would come out of the woodwork to help with issues of this sort…..Kelly, you have done SO much already to help so many, and it’s a crime that you have to suffer so much yourself while you are also attempting to help alleviate these unfair issues for others! I hate it!
Wonderful and oh so true post! I work in the pharmacy and I know how it is for some patient’s who truly needs this medication and other type of controlled meds in order to help them through certain pains that they have no control over. I also see the ones that come in with this same prescription (Soma 350mg) and have no legimate reason to be taking this or any other pain med for any reason whatsoever. I find it really sad that patients have to suffer for reasons beyond their control. It’s now against policy to fill any Soma script with any other short acting narcotic such as Oxycodone which makes it harder to actually fill Soma’s when they are really needed. I feel your pain and I sincerely pray that things get better and the FDA realizes and cracks down on the ones that are illeagally using and prescribing this drug and makes it easier for the ones that do!
Thanks, Sharona. I think the people in business and medicine are victims too of laws that are not well enough targeted at catching criminals. Patients also suffer – often because they are just afraid to be humiliated more, as some of the comments already posted tonight – on top of the painful illnesses themselves.
Soon after moving to Florida, I had a virus and ultimately my RA flared. I went to the ER at our local hospital , and the ER physician shamed me for being one of those people who manipulate to get pain medication. He seemed to have little knowledge or compassion for RA, and our painful side effects. I did my best to educate him about my disease and RA drugs. I was on Prednisone, methotrexate, Enbrel injections, etc. He finally gave me a low dose injection of Dilaudid for pain, and insisted I seek out pain management clinics. very upsetting and humiliating! Educate medical staff, please.
I”m sorry that happened Nancy and thank you for being willing to share. It’s hard to talk about what it’s like to get treated like we’re doing something wrong or not believed – and we’ve talked before about how few understand that RA is extremely painful and not always visible.
I am going through the same problem with my pain management Doctor (NP) They said they received a letter from the manufacturer of Soma and they “warned” the 350 mg was addicting, causes panic attacks and rebound headaches. BUT, of course since the name brand Soma has lost money to generic they recommended using THEIR 250 mg Name Brand that is of course 5 times the price. My Pain Management must of just heard “addicting” and the “warnings” and pulled everyone in the practice off of it. It helps me SO much. I have taken it for years, never abused it and now I can’t get a prescription for it from anyone because I signed a contract that I would only get “controlled substances” from them. I am steaming mad! Why are they telling ME what works for MY body! I am on the look look out for a new PM Doctor, but worry they have all hopped on the anti-Soma bandwagon! 🙁
wow, Julie. Thanks for the perspective – this is what a patient walks into the middle of – just looking for treatment for a disease.
This is ridiculous! Last year, I broke a couple of ribs. I needed to work, so anything narcotic was out of the question. The narcotic pain reliever was extremely inexpensive, but the non-narcotic patch was nearly $100 after insurance. Not only are we stuck with a disease with no cure, not always effective treatments, but then we are left to deal with pain on our own. I feel too, that we are often view suspiciously when we report pain.
I spoke with a pain management attending physician at our hospital regarding my theory on the development of chronic pain. My thoughts are that for a long time, RA is often mis-classified as chronic pain. RA causes repeated bouts of acute pain that should be treated effectively as soon as possible. Since RA is a progressive disease, causing joint damage this leads to continual acute pain from a chronic illness. Chronic pain is caused by unrelieved acute pain. Unrelieved acute pain leads to chronic pain by recruiting other nerves whose job was never for pain perception. They had other jobs. Even though there are several non-narcotic pain relievers that are pretty effective in pain management, they are not being prescribed. I’m not sure if the state of Florida has physicians afraid to treat pain or if insurance companies are playing doctor. Either way, once you cross over to chronic pain, your life changes for the worst. Chronic pain is much more difficult to treat than acute pain. Basically, I feel that we are being forced into the life of chronic pain and it’s cruel. The pain management physician that I spoke to was incredibly supportive and agreed that RA pain is continual, horrible, and deserving of relief. The physician felt that every RA patient should be in a pain management program. As a nurse, I have received a lot of education about pain. Regulatory agencies require that we frequently assess pain, accept the patient’s report of pain level as being true and accurate, and it is required that we also evaluate the effectiveness of the pain intervention. Still, if you present to the ER with tendonitis from overusing a joint playing tennis, you are more likely to leave the ER with an effective pain reliever than if you present to the ER with tendonitis related to RA. Do they assume that we just become accustomed to the pain? What does that say about their theory that RA patients have lower pain thresholds? I don’t think it will be terribly long before RA patients relocate in droves, to areas like California and Alaska and other states where medical marijuana has been decriminalized. I would like to see more studies on the effects of medical marijuana for RA pain. Once I am no longer able to work, that’s the direction I am heading. Legally or otherwise.
Thank you Belinda. The whole response was informed and accurate.Pain management is the most important focus of how I treat my RA, not ‘stiffness’ or swelling. Especially important is the last few statements. (I live in Alaska, so my attitudes may be different) My daily several hour get-up-and moving routine includes a very small amount of inhaled cannabis; the most effective, immediate medication I can take to relieve enough pain to get on with my day and out the door.
I have experienced similar situations for close to 10 years now. I go to a pain specialist, who will prescribe my pain meds, but finding a pharmacy that will fill them is maddenling. No chain store pharmacy will carry the ones I have been on – oxycontin, percocet, dialaudid, etc. I finally found a small compounding pharmacy who services all the area assisted living homes. They carry all my prescriptions, and I’ve never had trouble with the Soma, either. This is also where I get my syringes and needles and Methotrexate. Never a problem.
But at the pain clinic – that’s another story. I get urine-tested every month, cannot reschedule ANY appointments, and if I miss one, I amd dismissed as a patient. It is almost the same at my neurologist’s office. So many hoops to jump through that I’ve decided not to see him any more, and have thus fired HIM.
When I am asked about my pain level at my rheumatologist’s office, I make a point of asking why they are asking. I report my pain level but add that I don’t know why they ask, since there are no options for pain control. My rheumatologist believes that pain control lies in controlling the disease. I agree, however, we have never managed to control the disease. Every day, I have a different group on joints flaring, and then end with pain somewhere else due to compensating for the previous flare. I feel the amount of time in my rheumy’s office is a terrible waste of time. My physician seems to get really uncomfortable when we discuss pain. I told him “You know that this is a horribly painful disease. You are so afraid to do your job that you get uncomfortable and defensive when I mention pain. You have sold your soul and lost sight of why you became a physician.” If I did not need my RA meds, I would not waste my time with the rheumy. I don’t have good control over my disease. I suffer in pain every day. I know that my condition would be exponentially worse without my RA meds, and my pain would be unbearable. The fact that I continue to go to a rheumatologist knowing that I will not get pain meds, negates any theories of drug seeking. Drug seekers would not bother sticking with long term care from physicians, they would be actively looking for another angle. Manipulation is part of the dysfunction. I hope in the future to see effective pain relief or more successful litigation related to physicians not treating pain. I am also wondering why they are not employing diagnostics such as thermography to prove or disprove pain. How can physicians, pharmacies, or insurance companies have the right to negate our claim of pain without some type of proof that we have no pain? Even when there objective assessment findings to substantiate our pain, they negate the pain. How can this be?
Belinda, it is nuts – many have separated themselves mentally so they can follow such policies – it is truly inhumane the way people with RA are expected to accept suffering that we as a society would not allow in animals in this day and age. I’m sure we’ve discussed it on the blog before, but this report http://www.medscape.com/viewarticle/762094 from earlier this year explains how they’ve decided that TYLENOL is the drug of choice for RA symptoms.
There is good evidence that acetaminophen / paracetamol is ineffective in most people because the majority of the drug ends up in the liver quickly and then leaves the liver slowly. So it’s also not an ideal drug for those on methotrexate who are told (in the US anyway) to not ever drink a glass of wine. The acetaminophen dangers have brought stricter rules and reduction of it’s dose in prescription meds and meanwhile rheumatologists decide that even though it is not anti-inflammatory and it’s ineffective in most people for pain relief, that it should be the first choice to treat Rheumatoid disease sx. My typing and grammar are suffering with the hour after a whole day of working at the computer, I need to sign off. But, yes, you’re right – it’s wrong.
Always good to hear from you.
K
I think the problem really lies with the DEA now and what they really need to do, which is crack down on these pain clinic doctors who are miss prescribing pain meds to drug abusers and to stop makin it hard for pharmacists and pharmacies. These doctors are accepting CASH ONLY and will write scripts for Soma’s Oxycodone’s Xanax’s Baclofen’s, etc. for patients who dont need them for any reason. And all of my patients suffering from RA, cancer, and other things beyond their control are suffering and its more than sad, its despicable and it upsets me everytime I see one of them knowing they dont need these meds for any reason at all. But I spent a lot of time last week helping a RA patient trying to get a coupon company to pay for her methotrexate when she’s been without it for over a month and really needing it with her Humira. They wanted her to prove that she is taking and has received her Humira in order for them to pay for her Methotrexate which is desparately needed. Working in pharmacy is a lose lose sometimes because you want to help the ones that really needs help but often have to turn them away for reasons beyond your control! This pain med situation has really gotten out of control and I really wish that they would fix this problem so that legitimate patients can get what they need!!!
<< What she said! btw, I have advocated for that but I had never heard that we could actually get the mtx covered that way. There is trouble getting mtx covered by regular some insurance if it's injected since the insurance companies have no idea that RA is a disease and insist that we don't need to have home injections for "arthritis," even when we already have our Humira covered by the same company... https://www.rawarrior.com/lauras-cvs-commercial-with-kellys-cvs-and-the-a-word/
Wow, I can so relate! 7 yrs ago I lived in AZ for 2 yrs, and had a difficult time getting pain meds. My reumy sent me to a pain clinic when I needed more than 5 Tylenol-3, acting like I was a drug seeker and trying to get her fired.
The pain clinic gave me effective pain management, but I got hassled like a criminal every time I went to the pharmacy to fill the scripts. I remember once the pharmacist, who I saw all the time, boiled over and started asking why I needed this much pain medication, was I in a car accident, etc, saying various guesses. I was so stunned I just said “no”, and took my meds and left. I learned later they are not allowed to ask, it is private what medications are FOR.
I have since moved back to the Seattle area and my rheumy here prescribes what I need without hassle and the pharmacy is always kind and sympathetic when they see what I’m getting. They see me in there shopping with my kids (it’s a grocery store pharmacy), and I get all my meds there, so they know me.
I think the different rules in different states can be really detrimental to patients. I’ve experienced it myself and am sorry you’re dealing with it now Kelly.
Greater awareness of the rheumatoid disease itself would make a difference in how we are treated – I imagine that if a person takes methotrexate, it should not be odd that she/he needs pain meds, for example. It makes sense to us because we *know* and they just don’t know.
I doubt the people in the state capitol or whoever made this new international drug law realized how much they would make our lives harder. They had no idea and there was no rheum patient advocating our position to them, etc.
I’m glad you have a good rheum doc now who will take care of this for you. I’m hearing conflicting messages from the medical community about whether or not they should take care of RA pain treatment or not, as we’ve discussed before on the blog.
I normally just read/lurk but this topic came up for me on several occasions, the last time just this last week. I am having severe headaches caused by problems with my neck. My Rheum Dr. told me it wasn’t the RA…just degenerative….WHAT!!! I have gotten to where I ignore her when she makes statements that I KNOW to be untrue for me. I KNOW where and when I hurt and I know that it feels different than “fibromyalgia” that the Dr. says I have. I told her I questioned that due to the areas that hurt and require recurring steriod shots. As far as Soma goes, I have used it for 13 years with no problem until I tried a different back dr. She didn’t want me on it and refused to give it to me…I fired her. I don’t abuse medications….I USE them to help me have some quality of life with my family and friends and I do NOT appreciate coming away feeling that the Dr. puts me in the drug seeking colomn. This post really struck a cord with me!!! We are definitely second class citizens when it comes to the medications we need………Enough of a rant today…Thanks for letting me talk ;-0 Sharlane
Sharlane, thank you so much – I could have written those words myself. The headache that comes from the rheum activity in the neck would be considered migraine class in many ways except for its cause I guess. I know what you mean that headache is severe and I was SO grateful to have found something that works to prevent it from getting out of control and stunned about how people acted about that. And as for doctors who say things we “KNOW” aren’t right, I’m also grateful – that we have all found each other so we know we are not the only ones… and such a good point, we don’t abuse medication to treat severe pain, we use it.
So grateful for this site….tiered of Drs acting like you are a drug addict when you need some relief. This site has been a blessing! Thank you so much for all the info and help. I mainly have just suffered in silence, because I don’t want my Dr to think I know more than he does. He also said I can’t have RA in my neck…..
I totally sympathize with those who are simply trying to manage their pain so they can function and end up being treating like dishonest criminals. People think that narcotic addicts end up that way by abusing their medications but that’s not always the case. There is a strong genetic component to becoming an addict and using narcotics, even exactly as prescribed, can lead to dependence. Doctors and pharmacists have a responsibility to minimize the risks of addiction for their patients, however, they need to do so with RESPECT and COMPASSION. Pharma companies also need to find a way to make powerful pain relievers without addictive properties. No one should have to live with the pain of RA and addiction.
thanks, Aimee. Respect and compassion will always help!
And I agree with you & when I read more on the low-dose soma, I feel even more strongly about posting this blog on my experience. Studies show that the new lower dose is as effective but creates 30% less of the chemical (meprobamate) can lead to dependency in people whose livers handle it that way – meaning this medicine is much less likely to cause dependency, also demonstrated by the low side effect levels for its class of medication. What we need is a test that can show whether it’s safe and effective for a particular patient – and I think we will one day – but meanwhile patients should still have the right to choose to take what they and their dr decide is best for them.
I have had three neck surgeries. Two through the back and one through the front. Let me tell you, do your homework. I was fortunate enough to find a great neurosurgeon, but a lot of people have trouble for years. They will usually try to get you by on a discectomy and laminectomy with the first operstion. That is trimminhg the bulge, basically. However, do not confuse that with the fusion. The last one I had was fusion of c5c6, and they took the bone out of my hip. No problems at all in the hip, but I had to pick my head up by the hair for months to drink. My elbow literally looked like a softball when I came out of surgery. I didnt know what hurt worse. I took hydromorphone for several months, and there was no going back to hydrocodone. That severe pain far outlasted my dilaudid, and my rheummy would only give two percocet a day. Call me whatever you like, but it just wasnt cutting it. I talked to a lot of people, and one day I met a lady in therheumy’s office that had particularly articulated fingers. During the course of our conversatiion, I asked her about pain. She told me about a new drug she was on. It includes no acetamenophen, doesnt wire you out, lasts all day and works like a charm. She gave me a card to her pain doctor. That was three years ago. Ive been on the medicine ever since, and it changed my life. It actually put RA on the backburner for quite a while. The name of the med is subutex and its main and only ingredient is buprenorphine. They use this stuff in Europe and nations that are more developed than the US. Medically, for sure. They use suboxone here, which is the same thing with an addiction med in it to get people oiff of oxycodone. They use it like methadone, but it is not methadone. My insurance paid for it for about two years, until the big drug companies pushed it out. It is a far superior medicine, and I actually feel healthy now. It does a better job on the pain. I have to pay $211.00 monthly for it, but it is worth it. It enables me to run my computer shop and make the money. The doctor writes “for pain” on each script, and I never run out or feel as if I dont have enough. No more ups and downs. The pain pill race, coupled with the humiliation dished out by docs and pharmacies was more than I could handle. Subutex was my answer, and I have no doubt that I am healthier for it. One day, I hope the insurance picks it back up. But they dont really care about people. I promise you that.
We ran into this issue with my daughters ADHD medication and its not a controlled substance. Her doctor prescribed 1.5 milligrams of Intuniv. It doesn’t come in that dosage so she prescribed us 1 mg tablets with instructions to give her one and a half. The insurance company wouldn’t approve it. We finally had to get 3 mg tablets and cut them in half, that the insurance company approved.
nuts.
I live in a state that has huge problems with narcotic addiction, both heroin and prescription pills. The death rate from overdoses is terrible, and drug addiction is the foremeost cause of property crimes. It’s a horrible situation with no good answers. Pharmacies have been held up at gunpoint and doctors have lost their licenses for overprescribing. It’s no wonder both doctors and pharmacists are on the defensive.
Since RA is an “invisible illness”- at least until the joint damage progresses to where none of us want to go- I wonder if it is one of the fictitious diagnoses, along with lower back pain, that drug seekers claim to have. This could help explain the shoddy treatment true RA patients get in emergency rooms. Problem is, it’s hard to tell who is truly in pain when dealing with strangers.
When it’s your own doctor and pharmacy, who have all your records, it shouldn’t have to be so hard. Can’t the pharmacy SEE that you have been buying methotrexate for the last six years? As earlier posters said, using a smaller pharmacy where they know you helps. As for pain management doctors, most of them sound like total jerks. How did they end up in that field?
Finally, I wish they could come up with a strong, effective, non-narcotic pain reliever. Narcotics nauseate me terribly, and I hate the fuzzy feeling. (I can’t imagine why anyone would WANT to abuse them!) Aspirin is the only NSAID I can take. Can’t someone come up with a better solution? Doctors, pharmacists, and patients would all benefit.
Soon as I saw the word soma, I paid extra attention. I have had RA for 15 years and w/my first rheumy (now retired, dammit!), a pretty good pain mgmt program was worked out. Prednisone (7.5mg), relafen, now nambutome, (1500 mg), both daily, 15 mg of methotrexate tabs weekly and orencia infusion treatment monthly, but there’s a catch to that. If I’ve had any antibiotics in the previous month, no orencia. And it works great-it’s my juicy juice! I was in a study for 5 years for orencia. My first rheumy had a research division.
But I digress. Soma. Six -7 years ago, I was having truly terrible lower back pain. I’d had back pain for many years but not like this. Went to a back guy. He said some of my discs were compressed and he wanted to try cortisone injections in my spine to help q/the pain and he gave me soma to help me relax and sleep. I loved it and I only took one at nite. It meant I didnt have to sleep on my back on a heating pad! I also had several cortisone injections, but it was so dufficult to schedule them because this doctor was always doing surgery. So I went to a pain mgmt dic recommended by a frien who also has RA. He refused to prescribe soma but did prescribe hydrocodone and gabapentin. I had to do a urine test every time I came and sign a document swearing I wouldn’t buy my drugs from anyone else. I understand that but the not prescribing soma. I asked why and his pa said ‘he doesn’t like it’. I said I do and he doesn’t have to take it! He also gave me spinal cortisone shots. But the relief lasted only two weeks max.
So back I went rheumy 1. He had recommended another back doc the year before w/ lousy people skills but a great reputation. I went to see him, he looked at the pix of my spine and said they had just hired a specialist in the kind of surgery I would need and I did need it. So he brought in doogie howser and they both agreed I should get this done asap. My discs weren’t compressed, they weren’t there! They had deteriorated so badly from the RA that they were gone and it was just bone on bone! From L1-L5 in my lower back, no discs. He had a radical new procedure where he went in from the side and had a vascular surgeon (who looked like Tom cruise!) go in from the front. The first operation dr. Doogie said they jacked me up and put spacers in between my lumbar bones, then went back in two days and put a titanium rod up my spine! Surgeons and others came from all over rhe country to watch. Who knows, I might be on the discovery channel.
Sorry I got so carried away. I’m so grateful for this blog, Kelly. Dint know how you find the time. I do know, you just do it! I retired 2 years ago 5 days shy of my 71st birthday. I had been a college counselor and I loved it. I bought a home near my grandkids and I have a pool. It entices them sometimes and gets me about the only excercise I can do. My pain is pretty well managed but the fatigue is always there. I need 10-12 hours sleep, including naps! Plus I have a lot of difficulty walking up and down steps and have fallen a number of times. I’m very proud of you younger ones who are advocating for better medical care and more understanding about RA from family and friends. Back when I first got it, my mother and son both said not to take prednisone, that it was very toxic. I replied that I would take cyanide if it would help the excruciating pain and keep a tomato from growing on my hand! At first, when my knuckles would swell and that are would get so hot and red, that I called the flare a tomato.thank you and bless you all.
This was very helpful to me. I just got over a bout of headaches, neck pain and exhaustion that sent me to bed for three days. The entire time I thought, “I have a headache because…” and then would come up with a list of reasons from seasonal allergies to sulfites in the wine I drank. Even though I could turn my head and hear my neck bones grind, crack and pop, I just didn’t want to believe it was my RA. In retrospect I think I was having a “flare”. It is so hard for me to determine if my problems are common and age-related or from RA. I know I am in denial to some degree since I feel pretty damn good all-in-all and think my problems simply CAN’T be RA. I feel soo much better than I did when I was first diagnosed. At that time I could barely get out of bed and forget about walking up the stairs, it was impossible!! Now I can do just about anything I want to, but have to be carful and not over do it.
Anyway, after reading this, I know I need to take my flares more seriously and perhaps tend to my aches and pains before I end up bed-ridden. I also realize I need to talk to my Doc about my spinal/neck pain, which I always forget to mention because it isn’t bothering me when I see her. I have to admit another reason I downplay my flares is because I know she wants to start me on Enbrel if I keep having problems on my current regimen. I just hate the idea of getting on it.
Reading these makes me completely LIVID because I go through the exact same thing. My GP gives me a prescription for pain meds and refills every month because I never ask for or need a refill before 30 days are up. Sometimes I can even make it to 45 days before asking for a refill. I really do try to stretch them out. My Rheumy won’t even consider prescribing them. He will, however, prescribe Soma, but I stopped taking it over a year ago because I didn’t feel it was helping. I don’t want to have to take them, but when I know my family is going to have a busy, active day, it’s nice to know I have one on hand just in case. I wouldn’t even be able to keep up and recharge without getting those few pain free hours. It’s infuriating. I agree, no one should abuse them, but I also agree that if people are willing to go outside the law to get them, they’ll find a way whether you regulate or not!
Hey Kelly,
I’m glad you’ve posted about this. I’ve been taking this drug for a couple years now… When I was 1’st given a script for my 1’st MR, I was given “Skelaxin”, and it worked wonders. And little to no side effects! But of course once the samples ran out, the ins wouldn’t cover it b/c of how expensive it is, and there’s no generic, or not then. (Yet another obstacle to treatment is the IP or patents for these drugs, which I get to a degree).
Since I couldn’t get that, I was given another kind of MR. I can’t remember the names, but there were like 3 I tried before I was given SOMA. It helps greatly too, but there are the side effects with it. Drowsiness, addictive nature of it. But it was covered and the doc had no problem writing it, and I’ve had no trouble getting the refills for it (knock on wood, so far at least).
So I know how much this helps (I take 350 as I’m a big guy), so I’m sorry you’ve had so much trouble. I’m in PA btw….
It’s a shame that there are so many obstacles to these drugs that help so many… You’re right, when they write the script, isn’t that as much proof they need that the doc wants you to have it? At least the nurses at my doc office are helpful and do all the prior auth’s for me with no hassle. I actually thought I would have trouble with refills or even getting it.
Good luck, and don’t EVER feel like you’re some drug seeker or feel bad that they’re giving you a hard time. This is something that improves our quality of life 10 fold (at least does mine), so fight for your treatment and don’t let them get you down!
All my best
THANK YOU, Michael!
Just read an article in the local paper about the heroin trade. Seems the opiate abusers in this area have given up on oxycodone and other prescription meds because heroin is cheaper and easier to get. So the end result of the crackdown on prescription opiates has been that legitimate pain patients suffer more, and abusers have turned to heroin. Doesn’t sound like a terribly successful policy to me.
There must be a more sane way to handle this.
I am in the process of waiting for the methotrexate to kick in so my rheumy prescribed Tramadol and upped the dose for me once I told him I wouldn’t take the prednisone. I was on Plaquinil which worked wonders for me…I was actually pain free for three months. Eventually the gas, indigestion and bloating got to me though and the doc put me on mtx. Tramadol doesn’t take away all the pain, but it does allow me to get up and get to work every morning (mostly!) It helps that Tramadol is not considered a narcotic (although it is listed as a synthetic opiate…which confuses me), so I do not get hassled as I did before when I was taking vicodin. I was only prescribed 30/month of vics, but am prescribed 120/month of Tramadol. I take 2 at a time, usually 3x a day, sometimes more/less depending on if it’s a good day or bad. It is a shame that the pain pill addiction in this country has reached such epidemic proportions. There should be a better solution, than to make people who really need the meds, feel like they are doing something wrong…when all they really want to do is end their suffering. Thanks Kelly!
What ever happened to doctors being the ones working WITH their patients to determine the best course of treatment? And being the ones held responsible for abusing their privileges to prescribe drugs with risks? When did it become okay for ANY third party to tell someone what they can or can’t take without being involved in the decision making process in the first place? Yay, corporate conspiracy. Harder to get (supply/demand, regulation, difficulty in producing…) drives up prices and ultimately punishes the patient for actually seeking medical attention when they need it. It’s no wonder so many people hate getting any sort of illness checked out. It’s appalling how the patient always seems to be the one demonized for trying to get as close to functioning normally as they can by whatever means work for them. No one should have to jump through that many hoops, and in no situation should a higher dose of any medication with any risk of addiction be easier to get than a lower dose. I’ve been lucky so far… My MTX injections have been the only thing so far that my insurance company requires a per-auth for, and it just happens to be cheap. One vial without insurance was doable. I’m not holding my breath for the same luck when the biologics start. There’s no excuse for a system continuing as-is when people who have to take medication and still fight on just to function have to fight a separate battle just to get the very medication that makes it possible to continue the fight for a normal life. We’re already being punished for something we’re not responsible for just because we have RA. Punishing us for trying to live normal lives is cruel and inhumane. Last I heard, cruel and inhumane punishment was illegal.
Several good points. and I agree, ANY entity who can foil the decisions that patients and doctors make, is something we should beware of.
Or drive the patient to a not-needed higher dose of a medication…
You just listed some of the reasons I haven’t taken controlled meds yet. I should have already, but who want to deal with all of that? And then you also got to be very careful who you tell because people are just too judgey.
Kelly,
I would like to share, but not on an unencrypted channel, considering the sensitivity of the subject.
Perhaps you could publish a PGP/GPG key so people could communicate with you privately.
Thanks.
I know exactly what you mean!!!! I just had a 4 disk fusion in my neck 3 weeks ago. They tried to give me percocets by mouth a few hours after surgery. Not even as high a dose as I have been on at home. Finally after 3 hours of excruciating pain which caused dry heaves, they started me on IV dilaudid which is appropriate post surgical pain care. Now, I’m taking 1 Percocet per day. I was a 3-4/ day before surgery. I see a pain specialist. My other doctor, who used to treat my pain, wouldn’t give me anything stronger after my pain started increasing. that’s when I went to the pain specialist who put me on the percocets. It makes me so angry that people are no longer being treated adequately for pain and the fight it is to get treatment for yourself. So sorry you had to go through all that. Something needs to be done!
it took me actual tears to convince my doc to prescribe me pain meds to have on hand for bad night bouts with pain. even with all of the meds i am on, i get killer pain flares and sleep is out of the question as well as extreme suffering. i have used my med (tramadol) on 3 occasions only. one time it did a little good so i was able to get much needed sleep. one time it took some of the edge off, the third time – nothing. heating pad and immobility was my only option. the problem is that i often have a appointments with the doc when i am feeling good so he or she doesn’t see the severity of the events. they are too removed…..
Thank you for the article and I’m so sorry that our RA specialists seem uninformed about the very disease they treat. I have learned that individuals with late-onset juvenile RA are more likely to have hip, spine, and SI joint damage as a result of the disease rather than smaller joint or knee damage. Ironically, the best treatment I’ve received has been from a pain clinic and a neurologist. My pain clinic confirmed SI joint involvement with injections and my specialist laughed when I told her my Rheumy didn’t see any evidence there on x-ray. Because the damage would have to be extensive before it showed up on x-ray. What I learned while the anesthetic was still working- I’m so used to pain I’ve forgotten what it feels like not to have any. It was a blissful few hours:)
My neurologist gave me several medications to treat my nerve pain and found that a disc in my neck has almost ruptured. He also gave me what I call my miracle pills- the pain at the base of my skull has been basilar migraines and lo and behold, there is medication to STOP IT. Oh how I wish the other pills worked that well for my cervical spine!
I hate taking pain pills. I only use them when the pain gets so bad that I can’t function. I don’t drink, don’t smoke, never touched any recreational drugs of any kind. I’m fortunate to be in a small town where everyone knows that I’m not a user. My last bottle of Lortab lasted over a year. Why legislators lump people like us in with drug abusers is beyond me.
I loved this article. I, too, live in Florida and getting my drugs filled for RA is a nightmare each month. Yes, the state of FL says I can only have a one month supply of my meds at a time – which, of course, means I pay much more each month than a 90 day supply would cost. Florida also changed the law and my rheumy can no longer write my prescriptions for pain meds. So now I have to go to a Pain Management clinic each month which costs me a $65 co-pay per month. I realize Florida had a lot of those shopping center pain clinics where the not-so-nice people of our society got their “fix”. But changing the law makes it incredibly difficult and expensive for those of us who NEED these meds to function, to actually be able to get them. I can so relate to the part about being made to feel like the lowest of low drug addicts – it happens to me routinely. And because I don’t look sick, no one understands that RA is ravishing my body. I had to have surgery back in October (an emergency with no planning) and the docs weren’t able to intubate me – why? Because RA has taken ahold in my jaws, neck, etc – does that show to the average person on the street? Oh heck no – I look fine. Great article and at least I am not the only person in Florida to be made to feel as if I was just looking for my next fix.
Kelly. That just breaks my heart what you went thru to get ur meds! I don’t understand why it’s so hard to get them? Must be different laws for the states. With my rheumy I have no problem getting them and I take stronger meds than u do. I pray that it will get easier for you to get ur meds! Judi in Missouri
Yes, I think that’s right Judi. read some of the other comments about how hard it is to get pain medication in some states. 🙁
I realize this post is from last year, but I was appalled at what some go through to get much needed relief.
I live in IL,and had a 3 level cervical fusion 2 years before my ra diagnosis. I’ve been on Soma 350 for many years along with other pain meds, and have never run into these problems. My Soma is even filled as a 90 day supply.
I’m not sure what type of pain clinics you have, but mine is run by my Neurologist. I’m subject to random drops, but they aren’t very often.
My Rheumatologist is fully aware of all my meds, and I get no hassles from dr, insurance, or pharmacy.
Good luck to all, it saddens me to know that any ra patient needs to suffer more pain then the disease itself already causes us.
amen Carol.
Thanks for commenting – I haven’t met many patients who use Soma. I don’t know what I would’ve done if the back doc hadn’t prescribed it so I could try & find something that will work on my neck. I have to have a combination of anti-inflammatory & the soma when my neck gets bad – or I’m incapacitated. And yes, needless extra suffering is sad & I hear a lot of it & it makes me angry too.
I am having the exact same problem in NYS. I have been using Soma for over 25 years. It was prescribed to me after many other trial pain medications and muscle relaxants. I too have had MRI’s of my neck, Xrays and many other tests and they all report the same findings – severe arthritis of the cervical spine from an injury. I do not abuse the medication. I am a graphic designer and my husband and I own a newspaper, therefore four days a week, I sit for many hours at the computer. That is when I must take the Soma. Even after 25 years, I still only take half a tablet as that seems to work. This is where I went wrong. I was honest and told the Physicians Assistant what and how I had taken the medication for years. I immediately was rushed off to another room for a blood test to make sure that I had the drug in my system and was not selling it on the street. I am 70 years old and I was very humiliated. Next I had to have an Xray to prove that I did indeed have a problem. That was over a year ago. Every month since I have had to go to the doctor in order to get a new prescription. Each time they gave me half the amount of the time before. This last prescription was for 30 pills to be taken 2 x day and one at bedtime and was to last a month. There math obviously does not calculate – but I do use Soma sparingly and with prudence, so that was fine. When I went back to get a new prescription this month, I was told by a nurse that my Primary Care Physician refused to write a prescription for me based on the Physicians Assistant decision to wean me off the drug. Again, I was in the lobby of the medical office when the nurse told me this. I am not sure if he was aware that there were many patients in the lobby that heard our conversation. Again, I was humiliated and amazed that no one had discussed this with me. I am not having any withdrawal symptoms, despite the fact I have had not medication for over a week now, but I do have the persistent pain and burning in my neck and can’t move my shoulders. I am using Aleve and spending twice the time trying to get my work on computer done as I need to get up every hour and move around as my hands get numb. I am in the process of changing doctors. I sympathize with anyone who is experiencing the same problem. I am sure we are not the only ones who are taking this medication and having this same problem. Like yourself, if I had used the stronger prescription and had the prescription filled every 30 days with 120 pills I would have been okay. This does not make sense. Even worse than having to deal with the neck pain, is the fact that our medical systems seems to be quite broken and that too, needs to be fixed. Thank you for sharing your story. I know now I am not the only one,
Wow! I’m so glad/validated by this. I just recently went through the insurance~pharmacy~prescription refill prior authorization hoops mess. I was without painrelief for RA for 2+ weeks while insurance decided what medication on the formulary they would substitute my rx with. What I was taking worked great, but insurance wants me to try 2 formulary drugs before I may have “that” drug. Well it’s not working it’s extremely sedating – back to squareone. To top it off when listing meds to my other Drs there is a stigma and a many questions about the necessity of such a drug. I have taken the same dose for a year- 1 pill at night so I can sleep because of spine pain, hardly the profile for an addict.
Thank you Kelly xx