FDA Limits Acetaminophen in Prescription Pain Medicine | Rheumatoid Arthritis Warrior

FDA Limits Acetaminophen in Prescription Pain Medicine

Acetaminophen in prescriptions limited to 325 mg

acetaminophenLast week, the United States (US) Food and Drug Administration (FDA) reduced the amount of acetaminophen allowed to be used in prescription pain medicines. Currently, narcotics can be combined with up to 750 mg of acetaminophen. The new limit will be 325 mg.

That means the Lortab that I sometimes rely on won’t be sold in its current form. Other brands will have to make changes too, such as Vicodin and Lorcet. Companies will have three years to complete the changeover so that there will not be shortages of pain medicines, according to the FDA press release (video below).

New limits are based on concerns for liver safety.  Box warnings will also be strengthened. Acetaminophen is a leading cause of liver failure.  A high percentage of acetaminophen is managed directly  by liver, over 90 percent in many people.  Some believe that is why, on its own, acetaminophen is not a very dependable pain reliever. My own kids always joked about “Tylenol, the Placebo.” I’m guessing that our family genes are on the higher end of that continuum.

Fewer prescription pain medicine options

This move by the FDA comes on the heels of withdrawing of propoxyphene, best known as Darvon or Darvoset, in November due to fears that it may be associated with heart arrhythmia. The New York Times reported that 10 million Americans took propoxyphene last year. I assume that many will need to find an alternative pain reliever this year. Many patients have expressed concern about the insufficiency of options available for pain control.

Do you take prescription pain medicines?

Personally, I was surprised recently when I was prescribed a higher dose of pain medication for a pain not associated with RA. During the days I took that higher dose, I had the first almost pain-free moments in five years. Of course, I could not continue at that dose since it made me far too sleepy. However, I’m still sorting through all the feelings I have about that realization and what it means for my treatment.

I’d love to hear what you think about this. Reminder: neither the posts nor the comments on this site are considered medical advice.

Recommended reading:

Kelly O'Neill Young

Kelly O'Neill (formerly Kelly Young) has worked over 10 years as an advocate helping patients to be better informed and have a greater voice in their healthcare. She is the author of the best-selling book Rheumatoid Arthritis Unmasked: 10 Dangers of Rheumatoid Disease. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. She is the president of the Rheumatoid Patient Foundation. Through her writing and speaking, she builds a more accurate awareness of rheumatoid disease (RD) aka rheumatoid arthritis (RA) geared toward the public and medical community; creates ways to empower patients to advocate for improved diagnosis and treatment; and brings recognition and visibility to the RA patient journey. In addition to RA Warrior, she writes periodically for newsletters, magazines, and websites. There are over 60,000 connections of her highly interactive Facebook page. You can also connect with Kelly by on Twitter or YouTube, or LinkedIn. She created the hashtag: #rheum. Kelly is a mother of five, longtime home-schooler, NASA enthusiast, and NFL fan. She has lived over thirteen years with unrelenting RD. See also https:/rawarrior.com/kelly-young-press/

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50 thoughts on “FDA Limits Acetaminophen in Prescription Pain Medicine

  • January 26, 2011 at 6:22 am
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    I am currently on 50mg of Tramadol 3x and 500mg of Naproxen 2x a day for the RA, 20mg of Flexeril and 300mg of Neurontin each night (the whole sleepy thing) for the Fibro. While I am not pain free, while I am still not sleeping a full night (Thank you, Prednisone) I cannot imagine where I would be without this host of pain meds and muscle relaxers. I DO know that I would be sleeping even less, I might not be able to do many of the things I do and that scares the daylights out of me.

    Reply
    • January 26, 2011 at 8:49 am
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      Thanks Jules. Just the start of a very important discussion. We have to become mini-pharmacists 😛 trying to find a combination that will allow us to live the best life we can.

      Reply
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  • January 26, 2011 at 8:29 am
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    I think it’s awful. They don’t think about how pain stops life when you have a disease like Rheumatoid Arthritis.I wish they would concentrate more on controlling the cost of healthcare instead of making my life more painful.If they want to limit the dose they need to create or offer an alternative that works as well. I am very upset over the government thinking they can dictate my life through healthcare. It has to stop. Let every member of the FDA suffer this disease and I guarantee they would not limit or reduce any medication doses.

    Reply
    • January 26, 2011 at 8:47 am
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      Hi Stephanie, I do agree that awareness about RA might motivate somehow for better treatment options. In some states, the regulations are getting very tight for pain medicines, dictating who can prescribe and forcing patients to pain managment centers, etc. And yes, I do hope the FDA is aware that we need safety AND relief.

      Reply
  • January 26, 2011 at 8:36 am
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    Hmmm. I can’t just switch to drugs that are metabolized in the kidneys instead (since I also have polycystic kidney disease), so I hope there’ll be something out there short of general anesthesia that will still work. Crapola!

    Reply
    • January 26, 2011 at 8:44 am
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      Very good point Carol – some dont consider the whole picture. the patient may have other meds and other conditions that complicate options.

      Reply
  • January 26, 2011 at 8:49 am
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    yes, only as a last resort, spot treatment LOL, but am having a hard time getting my RA dr. to refill it (Lortab) I get 60 at a time and it usually last me 6 months, I don’t abuse it.

    Reply
  • January 26, 2011 at 8:50 am
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    Stephanie, I totally agree with you about government intrusion in healthcare. But y’know, you can always take another OTC Tylenol, er, placebo 🙂 to go with the new prescriptions. I would talk to your doctor about it. It is true that there is no free ride with drugs. They often have serious, life threatening side effects. The trouble with RA is that life doesn’t seem much worth living when you are racked with torment 24/7. Can’t win for losing it seems….

    Reply
  • January 26, 2011 at 9:09 am
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    My doctor has been trying to get me way down on my gabapentin dose. Thing is that I am in so much pain now that I am turning more to narcotics instead. While I am all about taking as few drugs as possible, quality of life matters, too. If the narcotic drugs are going to be a problem because of acetaminophen (or doctors not wanting to prescribe them), then we have to have other options. I have a few hours a day that I am good for nothing because I am in too much pain. Even the exercise I used to count on to alleviate some of my pain (higher endorphins) is difficult right now because my knees are not cooperating. I have to ask myself whether I am really concerned with having my liver “good to go” so that I can live a longer life yet I am in so much pain that the life I am living is misery. I don’t think there are easy answers to any of these questions and I don’t envy the job of those having to decide about limiting acetaminophen access. If we (as a country) weren’t so quick to shirk personal responsibility and blame doctors, drug companies and the government when something goes wrong such a liver failure due to an “approved” drug, would we be faced with having our right to decide how we want to treat our conditions taken away from us?

    Reply
  • January 26, 2011 at 9:15 am
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    I think limiting Tylenol in meds is long overdue. When I take narcotic pain relievers, I don’t think the Tylenol does much, except stresses my liver. Many people take multiple meds per day, and it has always bothered me how Tylenol is in so many. For example, I currently have a cold. If I take a multisymptom cold pill, that usually has Tylenol. Add that to the Tylenol in the pain meds I’ll need (cold=flare up), it could add up over a few days and be dangerous.

    The FDA made a big deal about taking out Tylenol in kids cold medicines so kids didn’t accidentally take too much. It is about time the Tylenol was taken out of things like Vicodin, Percocet, etc. It’s not like Tylenol does much for that level of pain.

    Reply
    • January 26, 2011 at 9:41 am
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      Yes, hopefully there will be fewer accidental poisonings. I’ve always heard the party-line “well the acetaminophen helps when it’s combined with other drugs” from pharmacists. However, I have never heard any actual reason why that could be so.
      I’ve personally used single-ingredient meds in my household whenever possible so that we only take what’s absolutely needed. Higher costs that way & we end up w/a list on the counter of who took what when if a cold is going around. LOL.

      Reply
  • January 26, 2011 at 10:03 am
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    I totally agree with you Kelly and Ms. M.
    Tylenol does not work for me, it never has. Placebo is a good name for it, as far as I’m conderned.
    I agree with you Warrior Princess about using single ingredient meds. My liver has to work overtime processing the RA meds. I shudder to think what that dear organ looks like!

    I had to sign a form the last time the Dr. gave me a prescription for my pain medication. It basically states that I can’t use my mail order pharmacy to fill it, must use only as directed, not transfer to others, or have anyone, except myself, pick it up for me at the local pharmacy, etc. Is this only in NC or has anyone else experienced this? Just wondering?

    Reply
    • January 26, 2011 at 10:55 am
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      From what I hear, that is due to the restrictions that various states have enacted to try to reduce abuse or illegal use of the drugs. Florida has the new “Pill Bill” that caused a stir.

      Hugs to you Connie :heart:

      Reply
  • January 26, 2011 at 10:25 am
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    I guess, my first reaction is why? Pain medications like Tylenol have never been very effective for me. My drug of choice was at least Advil. But when I started MTX, I was told no more Advil, it makes the MTX more toxic. So now, the FDA is telling me that they are cutting the amount of acetaminophen I can have almost in half. I wonder how much relief I will get now?

    The other question I have is, I have neer been offered any perscription pain meds. Is that unusual? I can’t take anti-inflammatories due to a previous bleeding ulcer that required surgery to repair. Is this a question I am required to ask myself or will my Dr. not offer that as an option? And now that Tylenol will be not as strong will the dosage of these pain meds have to be higher?
    This is a discussion I will have at my next Rheumy visit…

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    • January 26, 2011 at 11:00 am
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      My doctor never told me not to take nsaids / advil with methotrexate. I take a lot of it. However, I’ve been working over the last few months to reduce it due to risk – that is why I tried adding Lortab and prednisone – still working on getting the right balance – but the point is to try to be functional while balancing out the risks. Big job.

      To your question: No, I don’t think it’s unsual. I was not offered pain meds just as I was not offered any assistive aids. I’ve had to speak up finally and say, “I need more help. I still can’t function…” It seems to be the personality of each doc since some patients are offered meds early on. & others not.

      Reply
  • January 26, 2011 at 11:05 am
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    I guess I’m not terribly concerned about this change. All the hydrocodone/tylenol combinations people mentioned are currently and likely will be available in the 325 mg tylenol form.

    I personally find that 1 500 mg tylenol or 1 vicodin works well for pain control. It took me a while to figure this out, but when I talked to my doc he told me to take it at regular intervals throughout the day. If you understand pharmacokinetics you’ll understand why this works in that you achieve something called a steady state concentraion in your body that keeps the pain signals muted all the time. With regular dosing you can keep the change from the peaks and valleys of the drug concentration smaller and flatten out your pain signals. It doesn’t happen over night and I was somewhat skeptical at first, but after a few days it started to work quite well for my level of pain.

    In the past I’d gut out my pain until it was unbearable then reach for pain meds. This was not a good strategy for me and it was a miserable existence. I was constantly challenging myself to fight the pain only to be continually let down by what I felt was a personal failure or weakness. I no longer have those feelings with this new regiment. As Kelly said, check with your doc first before changing medical treatment.

    Reply
    • January 26, 2011 at 5:37 pm
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      I agree with you RaRAP about taking pain medicine at regular intervals throughout the day for pain control…My doctor (PCP) suggested this to me a few years ago and it works great! I rarely have severe out of control pain this way and stay very comfortable most of the time…
      My PCP also explained to me that when acetimeniphen is added to other pain medicines you can usually get by with smaller doses of each…Ultracet is an example…It has a smaller dose of tramadol and acetimeniphen then taking either med alone…He said studeies have proven that it works well to do this…
      Jewell

      Reply
  • January 26, 2011 at 1:11 pm
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    Hi – I was surprised about the medications being taken off the market. They really didn’t do that great of a job, but they took the edge off. I need something else, but the first alternative is not working for me. I might as well pop an M&M in my mouth. I realize it’s difficult for others to understand the pain levels we are under and the different thresholds as we don’t look sick. That said, arn’t there enough people that a pain reducer that didn’t make one groggy get enough financial support?

    Reply
  • January 26, 2011 at 1:26 pm
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    I’ve been offered pain meds to agment my RA treatments. Probably I should look at switching treatments, but I hate to return to the rollercoaster of trying to find one that works better than the bunch I’m on now. And my insurance certainly limits what my options are. But I turned down the pain meds….hate to start something that I’d need forever.
    We settled on more ibuprophen, and the option to call for help.(tylenol is no help) What I really want is the good parts of prednisone, without all the bad parts!! Could some researchers start working on that please?!

    Reply
  • January 26, 2011 at 2:39 pm
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    I don’t know how many people this applies to, but I am on coumadin for heart problems, and am only allowed one tiny dose of an nsaid daily, so Tylenol is a lifesaver to me when I flare or some other health condition causes pain. It, too, will change the coumadin level, so the coumadin nurses don’t like me to take it and I have to report my dosage level to them, but it’s not the absolute no-no that nsaids are. Several of my specialist docs have offered narcotics, but I will only accept them for post-surgery because I know how sick they make me and unsteady, which I already am from neuropathies. I hung in until I got relief from Neurontin and Cymbalta, and am now wanting to try doing without Cymbalta unless the intractable pain comes back. I’m not a martyr, just an expert on my own body as we all have to be.

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  • January 26, 2011 at 2:53 pm
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    I find what RaRAP says above is what really works for me. We often wait until the pain sets in before taking something for it, when if we had just taken a low dose ahead of time, things might never have gotten bad in the first place, plus you avoid that mental fog that comes with a larger dose.
    I find that Tramadol is consistantly helpful for me compared to Lortab’s that I seem to get a tolerance to very quickly.

    Reply
  • January 26, 2011 at 7:32 pm
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    Hi everyone,

    while I’m not affected by these changes in the US (I’m in Australia), I find it most interesting that so many of you have found tylenol to be ineffective. The equivalent drug here is panadol (I use panadol osteo for 8 hours of relief which contains 665mg of paracetamol per tablet, the recommended dose is 2 every 6 – 8 hours, no more than 6 in a 24 hour period, sounds the same as Tylenol Arthritis – but I haven’t been able to check the actual amount of paracetamol in Tylenol).

    I remember the first year I had a major flare, I wondered how feasible it would be to cut my legs off above the knee and get a wheel chair, I was in so much pain all the time. I don’t know if I’ve become accustomed to the pain or if I’ve just got better at managing the pain, but I don’t have those desperate thoughts these days.

    When I was working my way through the plethora of NSAIDS recommended by my doctors I also thought that paracetamol (Acetaminophen) was too mild to be effective. However, when I decided to get myself off as many prescription meds as possible I spoke to my pharmacist who recommended Panadol Osteo. It worked waaaay better than I expected. I was elated to have found a non prescription, affordable, safer option.

    It needed some anti inflammatory help, which I found in a dietary supplement (I get from an online Canadian health food outline) which doesn’t have any nasty side effects apart from thinning my blood (not a problem for me it actually helps my blood pressure).

    I did a lot of research, my doctors were sceptical, but I’ve been using this simple combination since 2005, and while I do have deformed hands, I have a side-effect free, pain reduced lifestyle. The pain is reduced about the same as it was when I was on the NSAIDs, but no side effects. I still take my blood pressure meds, and if there is ever any need to take another drug for any reason, I always check with both the doctor and the pharmacist to ensure there are no risks with interactions.

    Paracetamol is a great pain reliever, and we need it in high doses spread out over a longer period of time. We also must take responsibility for not overdosing ourselves. Paracetamol is deadly if you take too much!

    I also have regular blood tests to keep an eye on my kidney and liver function. But I’m not handing responsibility back to my doctors, they’re all well meaning, but it’s my body and I’m looking after it as I see fit. I’m also prepared to take responsibility for it, so if I’ve got more deformity because I chose to not take DMARDS, then it’s my decision. My doctors seem fine with that too! The rheumatologist – not so much. Although he would love to see me doing his meditation class!

    Has anyone tried Tylenol arthritis? Any idea how much acetaminophen it contains and will this be affected by this reduction?

    Cheers

    Tracey

    Reply
  • January 26, 2011 at 7:42 pm
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    Hi RaRAP,

    I found the same thing with Panadol Osteo (Australian equivalent to Tylenol Arthritis). The trick is to ensure you don’t take too many in any 24 hour period and keep any eye on your kidney and liver function, to make sure it doesn’t sneak up on you!

    I also avoid anything with codein, having done some comparisons, it doesn’t do anything for me, so I might as well keep it out of my system.

    Good to find some one else who has tried this option.

    Reply
  • January 26, 2011 at 10:50 pm
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    Wow! I think this is the first time one of my posts has prompted numerous replies from lots of different people. Thanks!

    I glad to hear that other people follow a similar strategy and find success and the relief they need.

    Reply
    • January 26, 2011 at 11:39 pm
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      LOL. I haven’t had time to reply today, but “yes.” That is one of the reasons that the meds worked so well for me a week ago as I described. When I followed the orders with the new dose, part of that was a higher strength. But another part was shorter time between doses. Your doc has taught you what they teach post-surgical patients: Just stay ahead of the pain. Don’t get behind – you can’t just “catch up.” Hey, when you’re right, you’re right. 😉

      Reply
      • January 27, 2011 at 1:55 pm
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        Agree. First, there are lots of prescription strength NSAIDs, at least a dozen I think. So keep trying out different NSAIDs until you find one that works well for you. I find the prescription strength ones work better for me usually. Some are 24 hr, so only take one pill per day. That way, you can take Tylenol along with the NSAID – just not at the same time – try to wait 2 to 4 hours after you take the NSAID. Different NSAIDs work well for different people, so keep trying different NSAIDs until you find one that works best for you.

        Second, they are not taking Tylenol off the market yet, so just buy it over the counter and add it to your other meds – check with Doc first, and get blood test monitoring.

        Tylenol Arthritis is 650 mg/per pill with instructions to take two, so 1300 mg per “dose”. I think it works much better than regular or Extra Strength forms of Tylenol which are 325mg and 500mg respectively.

        Also, think about adding one of the older, “milder” DMARDs to your regimine if you’re not taking one of those – ie sulfasalazine or plaquenil. This allowed me to cut back my dose of Tylenol most days, and I’ve gotten my prednisone down to 3 mg so far. Will ride the 3 mg for a while and cut by 1/2 or 1/4 mg (splitting 1mg pills) when winter starts to abate and see how that goes.

        I didn’t think Tylenol would help, but it did, and it got me off the Tramadol, which I didn’t like and thought created more pain for me. And I got back on a 24hr NSAID and finally gave in and added Plaquenil which both helped. I’m still far from perfect, still have some inflammation/synovitis going on, but am a lot better overall, though still with some ups and downs, but better overall yes. Maybe even fatigue-wise too=most days anyway.

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      • January 27, 2011 at 1:59 pm
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        Except, try getting GENERIC tylenol (acetominophen) arthritis, b/c Tylenol brand meds have been being recalled for various OTHER reasons lately.

        Reply
  • January 27, 2011 at 9:34 pm
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    Interesting how rheumatologists seem to differ so much on drug choices. Mine favors ibuprofen in large doses – I was taking 800 mg. 3-4 times a day when the RA was at its most active. Used the 200 mg OTC tabs, 4 at a time – much cheaper than the prescription 800 mg tabs. Worked pretty well, and not much GI trouble, as long as I ate something before taking it. Lower doses didn’t help much. Acetaminophen was useless.

    The only thing I’ve found to give absolute and complete relief from a flare is prednisone, but we all know the pitfalls of that . . .

    My doc wasn’t worried about combining NSAIDS with methotrexate – said that wasn’t an issue for an RA patient without other medical problems, it’s more an issue at the very high doses of MTX they give cancer patients.

    Opiate medications aren’t really an option for me. Work sometimes involves dangerous machinery and hazardous chemicals. While my employer is reasonably supportive of health issues otherwise, I’m quite certain that I’d run into “fitness for duty” issues with them if I were taking anything considered narcotic.

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    • January 27, 2011 at 10:25 pm
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      Thanks, Jeff. I was worried about any narcotic as well. I won’t take anything that has an effect on how I think – the idea just bothers me. My doctor gave me a liquid version so that I could literally take the dose that would be given to a child at first, and then gradually learn how much I could take with still no side effects. But in your case, I guess zero tolerance policy during working hours does sound like it would be firm.

      Reply
  • January 30, 2011 at 11:16 am
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    Oh, JOY! Just what I needed – and just what my poor DH needs for his back pain. The FDA can do whatever they want, but restricting the dose-size of acetaminophen caps and tabs really won’t change the amounts people take. We’ll just take more of them. Increasing the size of the warnings on the box and the bottle might help. But family docs who would run the occasional liver panel on their patients taking acetaminophen would be better.

    The banning of propoxyphene is more problematic to me, although I do not take it. That was going to be my “next” drug. Now I’ll be forced to take hydroxycodone, a true narcotic, and supplement with 4 tabs of 325mg acetaminophen. And so will my DH. I’m terrified of oxycodone – it is aggressively addictive – so if possible, we’ll avoid Percocet and stick to Lortab or Vicodin – and HOPE it will do the job for us.

    Somehow, though, taking acetaminophen in high doses for years, using methotrexate, and having occasional glasses of wine hasn’t affected my liver function test results.

    It seems that some people have “weaker” livers than others, and so the FDA is forcing all of us to adjust to the “lowest common denominator.” Like too many public schools teach to the “lowest common denominator” students.

    I’m so tired of being “protected” by whatever agency thinks I need protection. I’m an adult. Tell me the risks and let me choose. Many of us would rather do that. Make the higher doses of acetaminophen proprietary, if necessary. But let’s be grownups.

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  • February 2, 2011 at 10:24 pm
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    This is an interesting discussion, partly because I have RA, and partly because I am a nurse practitioner that works in gastroenterology, and I know one of the doctors that went before the FDA in regards to the acetominophen concerns. No one wants to have government interferring in his/her life, but it wasn’t long ago that “quacks” sold whatever they wanted to those of us with RA, and with the waxing and waning of the disease, it was hard to determine what was truly effective.
    I can say that it is too easy to get toxic amounts of acetaminophen, and it is very dangerous to over-dose. I have met a patient who needed a liver transplant from it. For every 5 patients who need a liver transplant, only one lives long enough to get one. It’s a nasty death. When I took pharmacology, I learned that there isn’t a single medication that is without side-effects. All have potential problems. Many providers do have an understanding of the frustrations. Much of what we do in GI is immunologically based. The future of this disease will be brighter when we can provide more careful fine-tuning of the system.

    Reply
    • February 2, 2011 at 10:49 pm
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      Hi Roselynn,

      Thanks for your perspective. I’ve always had a healthy fear of acetaminophen so that I buy single ingredient medications for my family and never “cold formulas.” Being on Lortab for RA has been the first time I’ve used acet. long term. It may actually be a relief when they re-formulate.

      I really appreciate your comment about “quacks” selling RA patients “whatever.” Did you see the duck on the bottom of this page and other places on this site? I’ve always said that if any remedies are to be proven to work, it would be by successful treatment of one of the patients like me whose RA does not wax and wane. Take a patient who does not “flare” and make her RA improve and then you have done something significant. :O

      Reply
  • February 3, 2011 at 4:08 am
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    Removing “TYLENOL” from pain meds. Well, in the first place, why did they put THAT in these meds? There MUST be some other way. I hear stories of new found pain substances found in Sea Urchins even one that has a mixture of THC in it; an oil that helps the Immune system. BUT BUT…There ARE other suspensions for Vicodin, for example, ASPIRIN. I looked it up some years ago when the docs didn’t want to give ANY pain meds out of any substance; saying “Oh dear now You know the acetophenamine will damage Your live, hun” I asked for the ASPIRIN solution, He got flustered and shook his head saying my insurance wouldn’t cover that.. =o/

    Fast forward to this week–When I told my current doc now about TYLENOL debacle..He rolled His eys, paced around, said that was just asinine then gave me ANOTHER SCRIPT for Hydrocodone..WHAT? Suddenly the tylenol isn’t ALL THAT BAD NOW; that he will now give me DOUBLE DOSES of the stuff until the day comes when MY INSURANCE STOPS PAYING FOR MEDS WITH TYLENOL IN IT….PERIOD. I swear, I am in TOTAL MISERY from NOT JUST RA..there is a PLETHORA of maladies squeezing the life out of me today! I SO SO LOATHE DOCS WHO ARE TOO AFRAID TO “LISTEN” TO THEIR PATIENT AND TRY THINGS THAT WE ASK FOR instead of humiliating us when we need REAL HELP!!

    Yep, my State gap insurance, maybe MEDICARE TOO? Will NOT PAY for ANY medicine that HAS ACETOPHENIMINE IN IT….NOW WHAT?

    I didn’t want the dang narcotics with TYLENOL IN IT anyway..had to belittle myself to GET the lowest doses of it years ago JUST for my Stenosis…TODAY I have RA, Narcoleptcy, ADD/ADHD (i think)FATIGUED/HEAVY SLEEPINESS ALLLLLLLLLLLLLLLLLL DAY LONG, EVERY SINGLE DAY OF MY LIFE. IT SUX TO BE POOR IN THE USA…My doctor is a CLOWN. Makes jokes, laughs at my suggestions but I’m not laughing. I’m sitting there looking him square in the eyes. Man alive.

    I FINALLY FOUND a specialist/RA and cardio who WILL accept my insurance but he lives 40miles out of town.Good thing my glasses have arrived so I can drive, hopefully without this head nodding, drop off sleepiness…

    I AM SO DESPONDENT and so unable to think clearly anymore. All I can do when the stressors crop up is to SOB til my toes curl, or I become white hot angry..I’ve been in PAIN enough for disability payments (the pawltry stipends egads) with no movement on me towards a ►back surgery◄. for YEARS!!!..everything has worsened and MORE stuff is added to my chat all the dang time. I live in CHRONIC CONSTANT PAIN FROM HEAD TO TOE. I cannot believe how AWEFUL these AutoImmune disordes are. It just boggles my mind..

    So I guess they NEED to come up with some BETTER DRUGS and PDQ. RELEASE SOME OLD FASHIONED TYPES FROM THE 50’s…then MIX AND MATCH some of these things so that we are MORE PAIN FREE AND ACTIVE than we are RIGHT THIS MOMENT.
    The medical/Disease professionals are a DISGRACE but then they are under the CONTROL of the DEA too….

    ►END THE RIDICULOUS COSTLY WAR ON DRUGS◄….and RELEASE DOCTORS HANDS from the dang DEA SO THEY CAN PRESCRIBE THE BEST THAT PHARMACOLOGY HAS TO OFFER. Each individual patient can learn from/look at suppliments and natural remedies too….

    but DON’T LET MY LIFE FALL INTO RUIN, AS THEY HAVE BEEN ALLOWED/ENCOURAGED TO DO with patients..Can look at alternative remedies too…but START TREATING PATIENTS WITH DIGNITY. STOP ARGUING WITH US!…tick Tock, I’m 62 now and in HELL with pain and other medical issues. I started hurting IN EARNEST in my late 40s. Nuff speeching from me…lol.

    I APPRECIATE RA WARRIOR more than I can say, TY for it…
    Be well, Kristine

    Reply
  • March 1, 2011 at 10:40 am
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    I don’t understand why some are so upset about them lowering the amount of Tylenol! Ths amount of the actual opiate will remain the same–if you are “lucky” enough to get relief from Tylenol or have to take it due to allergies to aspirin or stomach problems, just buy a bottle at the store and do the math, then add a pill to your Vicodin. The whole adding tylenol thing was SUPPOSEDLY meant to discourage people from abusing narcotics–it backfired BIGTIME–people were still abusing narcotics and dying left and right–then people who were NOT abusing it were dying! I won’t even go into my horror that Tylenol has been marketed all these years as safer than aspirin! That was just another example of Patients and Doctors being taken for a ride all these years by big pharma and the new law is at least a step in the right direction for people like me who don’t want ANY Tylenol in their pain pills. Personally, I take Vicoprophen, which has a small dose of ibuprophen in
    place of the tylenol and it works great–had to discover it on my own, though since Docs rarely prescribe it!

    acetominiphen and it works great…I had to discover it myself, though, as Docs rarely prescribe it…

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    • March 1, 2011 at 2:01 pm
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      I agree that we can find the combination that works best… & ibuprofen works if it’s dosed high enough. One of my docs admitted to me that it tends to work the best but it’s just not very safe to take the therapeutic dose for the long term (the way I’ve done- so I’m not pointing fingers at anyone else…) And by the way that’s why aspirin was prescibed & worked well for long time: it’s similar to ibu. & high doses of it do help. It’s just not very safe either… As others have pointed out, there are lots of risks and benefits to consider with each one AND with our whole picture of combination of treatments… I agree I’d also prefer there were no Tylenol in mine since I always have dosed all meds in my household as single ingredient so we’d use as little of each thing as possible.

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      • March 1, 2011 at 5:14 pm
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        Vicoprophen has hydrocodone in it too, though, that’s what I mean, Kelly. It’s a small dose of ibuprophen added , rather than acetominiphen,(tylenol) I am deathly afraid of acetominophen because I know a couple of people who did die (but they were abusing Vicodin). I don’t know what happened at the end of my first comment! I’m on an iPad, and I don’t have the greatest control of my fingers today! Thanks so much for this blog and the Facebook page! I sent all my non-R.A. loved ones here, and now they’re starting to understand! You ROCK, Kelly! 🙂

        Reply
        • March 1, 2011 at 5:43 pm
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          I’m so glad they are Patty! Yes, I know there is hydrocodone. Here is a funny story: the 1st time I bought the lortab, I asked the pharmacist whether there was “anything else in it.” She said “no.” Well after I asked 2 more times, she said, “well, Tylenol.” I said wait – Tylenol. Well I’m glad you told me I need to keep track of those things… she said, “why don’t worry about it. your advil is processed by the kidneys…” I said, BUT I take methotrexate… which I buy here… 😛

          Reply
  • August 1, 2011 at 12:29 pm
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    What is too much? I take Fioricet (narcotic with Acetominophen) at regular intervals all day. My pain is now moderate and under control. This means I take a total of 2,275mg of Acetominophen daily. I have taken this dose for quite some time. Everyone said this medication wouldn’t work but it does. The thought of having to take something stronger is scary and I hope to put that off for as long as possible. At this time I am having a difficult time walking due to knee pain and back pain. I refuse to increase or change my meds so this leaves me no other alternative. The thought of my insurance no longer covering any meds with Acetominophen is too scary to consider.

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  • August 4, 2011 at 3:44 pm
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    I was given heavier pain meds when first diagnosd; the rheumitologist said at the time, “make these last because you will probably never get them again.” It was Tylenol 4. He was right; for the pst 15 years my only relief has been from Tylenol arthritis, two as needed, and I have been very careful not to exceed the 24 hour limit. Now, I fear even this will be taken away. My current rheumatologist just prescribed Nsaproxin and since I am also on Lyrica, I hope it will be effective this time. When I tried it two years ago it did nothing for the pain.

    Reply
  • December 27, 2011 at 2:23 pm
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    Response to “prescription pain medicine”. All I can say is that I am underwhelmed by my rheumatologist’s response to the pain I am experiencing with my newly diagnosed RA. She has been prescribing me a tylenol with codeine medicine for fibromyalgia for as long as I have been treated by her. However, now that we have added RA to my list of diagnoses, she has resisted any attempt to help control this new level of pain. She has neither increased nor changed the med. She just keeps saying “the pain will decrease when we get the disease under control”. Well … what about in the meantime? And, since I’ve begun reading this site, I now believe that it is quite possible that the RA will never just “go into remission”. I am not sure how to handle this problem with my physician. I like her and sure don’t feel like going “doctor hunting”. However, I do feel that I need help in controlling the pain enough so that I can function, at least a little. Any suggestions?

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    • December 27, 2011 at 7:24 pm
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      Unfortunately Beverly, that is something we hear all the time. I am shaking my head now, sure that this woman must not have ever experienced any severe pain herself so she has no idea what you are bearing with. Remission is possible, but rare – and it should have nothing to do with whether your symptoms are treated. Many patients – most? seek pain treatment outside of the rheumatology office for the same reason as you – they don’t want to have to find a new rheumatologist. Either your general physician or a pain specialist may be willing to help. I do think you’ll find this very interesting on this same topic: http://www.rawarrior.com/iom-pain-report-relieving-pain-in-america-gets-mixed-reviews/

      Reply
  • March 14, 2012 at 11:37 am
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    I just realized how much I love this site. My whole body relaxed as soon as I saw this in my inbox. I think it is because my body and spirit realized I had found family connection again. I am understood and I understand. Thank you for being a fresh spring in a dry desert.

    Reply
  • August 11, 2012 at 9:31 am
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    I am so glad I read this. I was diagnosed this year with RA and in addition fibromyalgia (my rheumy said it is not uncommon to have RA stimulate fibromyalgia). Before my methotrexate and Lyrica really started to help I was using evening doses of 1-3 Vicodin tabs so that I could continue to function at home after work for the next shift (you know–dinner prep, walking the dog, housework). Before she prescribed that I was dropping to the couch when I walked in and didn;t want to stand long enough for me to empty the dishwasher because of the knee and foot pain. It helped—a lot. I have better symptom control now with MTX, the Lyrica, and daily Celebrex, which means I have some days I don’t feel the need to take any at all. However, we all know some days are better than others. And some nights, for reasons I can’t tell, I have pain that is “breakthrough” and taking a dose of 1 or 2 tabs helps a great deal and takes away that low level constant misery that living with these problems bring. I would like to know how others manage. I feel guilty for wanting the relief, but just fighting off the pain for the whole day is itself exhausting, and sort of get a “second wind” with pain reilef.

    Reply
    • August 11, 2012 at 9:52 am
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      please don’t “feel guilty for wanting relief” – this is a severely painful disease. Some pain relief however long it lasts, allows you to think clearly or do “normal” things for a little while.

      Reply
  • August 13, 2012 at 10:04 am
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    I told my Dr. I was concerned about the tylenol in my narcotics because of the liver damage. He prescribed oxy without the tylenol. THe next month he said there was a new rule that I would have to pay him 140.00 dollars because the fda? wanted a lot of paperwork and reasons for the use with out the tylenol. And a plan. Like as if I’m going to eventualy wean off at some point. RIght! RA isn’t going away. I found it bizzare that the Dr. asked for me to pay him 140.00 for this change in med. It doesn’t sound ethical. Has anyone had a similar experience? OR is this guy trying to make a buck. I live in NJ btw.

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    • August 13, 2012 at 10:42 am
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      I havent heard of it but that doesnt mean its not legal – I just don’t know. I will say that several states have newer laws controlling presription pain meds. I don’t know if his fee is for a registry or for insurance or what. Can you ask him to give you something in writing to show you what it’s for? Same goes with the “plan” to wean off – this is of course dumb for rheumatoid disease unless there is a remission, but there is very very little awareness of the disease so the authorities would not just “understand” that the diagnosis justifies the presription being long-term.

      Reply
  • October 26, 2012 at 8:05 am
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    Sounds like the doctor wants to be paid for an extended office visit, or something similar, for the time involved in the paperwork for these prescriptions.
    Unfortunately there are a lot of new regulations about pain medications over the last year, and judging from discussions here and elsewhere, states are increasingly strict about how these medications are dispensed. The doctors themselves often feel trapped, with their medical licenses at risk. And then there’s insurance policies, which add an entirely different set of rules and restrictions.
    I’d definitely want to know what the extra money is paying for, but it may be reasonable.

    Reply
  • November 26, 2012 at 8:13 pm
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    Upon reading your comment about being almost pain-free with your higher dose of pain meds, I thought, wow, why would you stop? Then I read your comment about being too sleepy. Again, wow. Every other drug we are given has an info tab that says, mild side effects can be overcome with patience and time. Well, I made that up but, I have seen similar statements. If the higher dose drug made you too sleepy, why not plan a week or two allowing the side effect to subside? I take oxycodone 325/10. Most people are knocked out by one tablet. However, I have developed a tolerance. No, I am NOT addicted, however I am dependent. My Pain Mgmt doctor, Rheumatologist, and my back surgeon have told me that as long as I don’t (abuse) take more than prescribed, I need not worry about addiction. What a nice affirmation. “I do not have to live with intolerable pain. I am entitled to have my pain managed”.

    Reply
  • June 21, 2013 at 3:51 am
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    I know this is a bit of an oder post, but it’s a topic on my mind lately a lot, as I am about to move almost cross country, and aside from the stress and pain (lol) of trying to pack up an apartment by myself (my boyfriend is already there, tho with any luck his job will give him time off to come back and help me get everything there), I worry a lot about how the move with impact my pain management.

    I am very fortunate that my GP will prescribe narcotics, as tylenol, acetaminophen, etc. do not do anything for me. For years I was a cash pay patient and, ironically, the least expensive narcotics had the highest dosage of acetaminophen. Like others who have commented, I was very concerned about the long term effects – and, at the same time, pissed at the regulations that limited me to four Lortabs (10/650) a day, as after several years on that dosage – which was initially prescribed for sciatica and other issues, many of which finally culminated in the diagnosis of RA. I did agree with my doc that it was wise to stick to as low a dosage as possible for as long as possible, understanding after a point that this was a long term situation.

    After the diagnosis of RA, my doctor cautioned me that many rheumatologists would not prescribe narcotics. Reading these posts and other blogs, I see that is true – and how fortunate I am.

    Things changed, and finally as of February of this year, I have insurance – spent a few months on some federal plan, the one I referred to as my “medicaid not medicaid” plan, the one that took six months to get approved for and barely covered anything, I guess they didn’t deem RA serious enough! – at that time had finally gotten in at a sliding scale clinic and had begun treatment with MTX through one of their GPs (couldn’t afford the blood work, etc. through my regular doc, though I continued to pay out of pocket to see him while doing to the clinic – initially because of the pain management issue and then because various incidents made me highly distrust the clinic doc, as in when he refused to refill my prednisone prescription when I was unable to make an appointment as my ankle had gone out the night before… I never miss visits… and the implications of sudden prednisone withdrawal are really bad). Anyway, I got “real” health care in February, tho still waiting out the pre-existing condition clause so until January 2014, all I get is prescription coverage – but hey, I’ll take it 🙂

    Right around that time a lot of changes were going on regarding federal regulations, so while I finally broached the subject of needing more pain relief with my doc (actually, I asked about a small, short term prescription of something stronger for an upcoming event that I knew was going to be extremely physically demanding – he looked at me and said “what you’re taking really isn’t working anymore, is it?” Bless my doc… because of all the drama surrounding narcotics, I have always been terrified to address the issue, though I have never abused them – but I have pink hair and piercings and tattoos, and even tho I’ve run my own business for 20 years, etc., well, you can imagine the looks I get at pharmacies trying to fill a script for narcotics – even on the days that I am practically crawling in the door, using a cane, wearing multiple doses and pain has got to be written all over my face!).
    So we went through a brief period of trying a combo of extended release MS Contin and Dilaudid for breakthrough pain… didn’t work, just made me sleepy. Then the prescription coverage kicked in and he switched me to Opana ER, still with the Dilaudid for breakthrough pain. Apparently morphine does nothing for me. Switched the breakthrough med to Roxycodone, and finally achieved a somewhat acceptable level of pain.

    And then the fun began. “Failed” the MTX five and a half months in. Thanks to the pre-existing condition clause, no rheumatologist, etc. for me – so no more treatment for the RA until January (I’d stopped seeing the clinic doc, as at first the insurance company said I had full coverage… then, not surprisingly, they changed their mind… still fighting them, maybe I’ll get lucky, but not holding my breath… so thought I had doctor visits just long enough to have some tests run and find out all sorts of other things I can’t do a damned thing about now) – knew things were about to get rough when my doc increased my pain meds without me asking.

    And then they got increased again – but not for the RA (well, sort of… refer to Kelly’s article about RA involvement in the cervical spine!), got back results of cervical MRI and voila, there’s the explanation for the peripheral neuropathy in all my limbs and, according to my doc, a large percentage of my pain. So ironically, it seems that it’s easier to get prescribed narcotics for anything but RA… and the cervical MRI may be my savior in with this move.
    As I don’t know how the laws are in the state I’m moving to, or if they will fill a script written by my doc here (I’m moving from Louisiana to Arizona… so if anyone has info regarding AZ, even just the general attitude towards narcotics, how hard it is to get scripts filled – at times I’ve had to go to ~10 pharmacies to get my script filled, tho that was back when I was on Lortabs… I guess they are a more popular street drug?). As while I certainly can’t have my doc send me scripts ; I am tentatively scheduled to move about a week before what would be my monthly visit with my doc, so if I can get one script filled in AZ that was written here I can move as planned – or do I pay another month’s rent to stay one more week so I can move with the meds in hand and a month to find a new doctor in AZ?

    And I’m terrified that I won’t find a doctor like mine here – not just because of the prescriptions, he’s also just a great doc – actually listens to me, knows I do my research and that at this point I probably know a lot more about RA than he does, so we very much make decisions together (and we’ve actually been friends for close to twenty years, he’s only been my doc since 2007). But given the RA (and now my doc is also suspecting fibro and connective tissue disease) and the cervical spine issues (surgery is basically only option now, and my doc is the last one to suggest surgery) and if I had a newer lumbar MRI, I suspect I’d get the same answer there as well (last one was in 2009, I know it is in far worse shape now)… well, tho I’d hoped by now the MTX would be working, etc., and I’d be lowering my pain meds, not upping them, the reality is, without them I simply can not function. And even at the levels I’m at, still have a rather ridiculous amount of pain – tho I suspect at the moment that may have a lot to do with packing, as I’m so terrified of a flare disrupting plans (the further into hurricane season we get, the chances of a bad flare increase – last year I got to the point that I locked up completely, boyfriend had to carry me around, etc…) that I’m pushing myself as hard as I can right now (and hopefully not straight into a flare, lol).

    Sorry, a lot of this was a bit OT (and I’m always long-winded when I write… RA hasn’t managed to slow that down, lol!) – my main point was supposed to be pointing out the irony that the FDA is so concerned about levels of acetaminophen – yet without insurance, the cheapest narcotics are those that contain the most?

    And if anyone does have any info, tips, etc. about AZ (Tucson, to be specific), I’d be very appreciative! I need to find a sliding scale clinic or someone cheap that will prescribe narcotics (of course I will be bringing plenty of documentation!) as while my prescriptions are covered, I have to pay cash to see a doc until January… which can’t come soon enough!

    Reply
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