A long thread but it may well dramatically help you ache less

[fsgregs1]

OK, I want to post this is case it has a chance to dramatically help someone. It is long so please read it patiently.

I am a 77 yr old man with quite severe arthritis. For at least five years, the arthritis pain has been bad and has gotten worse and worse, in most areas of my body. My back hurts, my arthritic knees hurt, my hips hurt, my shoulders hurt ... even my arthritic thumbs hurt. I have called myself semi-disabled now for years, even on this forum. I have tried Opiates up to 60 mg, at least 12 different NSAIDS, Steroids, Heat, Cold, PT (9 times), Massage,TENS, Acupuncture, Icing, hot tubs, braces, 6 surgeries, 9 steroid injections, swimming and water-walking, electric bikes, walkers, canes, you name it. I was shocked the Oxycodone didn't work, but it doesn't. The only thing that helps me is sitting in a recliner and raising my legs. As a result, I sit 95% of the day. Although I occasionally bike a few miles, its fun but doesn't help ease the pain. As a result, I've lost most of my muscle tone and have gained 20 extra pounds. I have no Gluts left and my pants try to fall off for lack of a butt. Even worse, I walk bent over everywhere. My back muscles hurt and all I can do is walk like a 90 yr old. I've been doing that for over a year now. Pretty sad sack!

Because of my condition, over the last year, I have adopted the behavior of a disabled guy. After all, all I can do is sit. Soon, I'd need a wheelchair. I also joined this forum over two years ago, after a doctor told me I suffered from Fibromyalgia. As a disabled guy, I adopted the actions of the disabled. Specifically, I found myself moaning and making quiet "Aoh" sounds almost with every breath. I truly sounded like the old man I assumed I'd become. My wife, who is still very active, scolded me for making them and says I sound like an old fart. She is right! Why I do it is something I've pondered for months. Today, I think I figured it out and want to share with you:

When I quietly moan while sitting in a chair, I've come to realize I do it to excuse myself ... from chores and exercise, and advertise my disability to myself, and others. It is painful for me to exercise ... be it walking or biking or lifting weights or swimming, or ... Further, I find I cannot exercise long, so it doesn't really do me any good. I don't burn many calories or build up much muscle, so why bother. Likewise, I try to keep up with chores around the house, but when I do them, I find myself expecting myself and my wife to praise me for it. After all, I am disabled but I still do them. Aren't I great? If she doesn't praise me, I literally feel disappointed. AHA!

If you too have come to behave as an invalid, it is probably for the same reason ... a defensive mechanism to protect you/us from hurting. I really dislike it, but I cannot help it. As a defense behavior, it really does work and mentally, keeps me sane.

Now to the main reason for this post. I have found something that helps me. Yes ... it's true. I want to share it with you all.

I read online that one particular NSAID called "Celebrex" (Celecoxib generic) works on arthritis pain a bit differently that other NSAIDS. "Yeah ... that's what they all say". I once tried it for a few days yrs ago and it did nothing for me. However, since I had nothing to lose, I talked my MD into rxing it for me again. I began talking it (one 200 mg pill/day), and like before, it did nothing ... for a week. Fortunately, my daughter urged me not to give up, so I reluctantly kept taking 200 mg/day.

VOILA! After 10 days, I was shocked to discover that I stood up from bed one morning, and I was standing upright ... not bent over. I came down the stairs standing up instead of bent over, something I had not done in 2 yrs. My wife was amazed. Sadly, because I had no muscle tone at all, I was not able to keep it up, but for 20 minutes I was a normal guy again.

Over the next week of taking Celecoxib 200 mg every day, I found my overall arthritis pain decline at least 50%. I had no damn muscles to do much of anything, but it was something. So, one morning last month, I took my walker out for a stroll. To my surprise, I was able to walk 1/4 mile. Over the next week, I walked every day with the walker. Today, I just finished 3/4 mile and tomorrow, I am trying for a 1 mile walk + 3 mile bike ride.

If this continues, I trust that although my pain will not be gone, I will restore a bit of muscle tone and maybe, will burn enough extra calories to begin losing weight. I don't want to be an invalid, so I intend to keep taking Celebrex indefinitely (200 mg/day). I am so encouraged that I am striving hard to stop moaning, stand up straighter, and walk every day. I have also become motivated to edit my diet to eat less bread and snacks. Maybe I'll drop a few pounds. I'll keep you all informed!

If you have never tried Celebrex, I strongly suggest you do so, for at least two weeks. Take 200 mg/day as prescribed. If it seems to help, try to reduce your mindset as a disabled clod and begin living again. You will feel better and your loved ones will begin to treat you differently.

FYI

 

[sunkacola]

@fsgregs1 , thank you for telling us of your experience, and I am ever so happy that this is working for you! I love to hear about people finding something that makes their life better.

Of course, as with everything else, Celebrex works well for some people and doesn't for others, but it is always good to hear of a success story. I tried it, and it did not work for me. But pretty much anything is worth a try if you have not yet tried it and if you can safely take it, so it's good for others to hear of your experience.

I also like how it helped you to see an attitudinal change that you could make and which has helped. I do think that our mental attitude is very important whether or not we have a chronic condition, and being as positive as possible, while still being realistic, is one key to having a decent life, even with fibro.
Good for you!

 

[JamieMarc]

Hey @fsgregs1 Thanks so much for sharing your story with us!

I, too, suffer from arthritis and fibromyalgia, but have not ever tried Celebrex. As a rule, for the past 20 years, I do not take NSAIDs as I take HIV meds that can affect kidney function and we all know how bad long-term use of NSAIDs are on kidney function. My kidneys ARE good for the most part and I am taking a different drug now than I was 20 years ago for my HIV, safer on my kidneys and bones (I also developed osteoarthritis thanks to early HIV drugs at the young age of 55).

So perhaps it's time to have a talk with my rheumatologist or GP about celocoxib. I am due to see my rheumatologist soon. Other than acetaminophen, I haven't yet been prescribed any med for my arthritis, but we are still in the exploratory stages of finding out how extensive my osteoarthritis is and the likelihood of rheumatoid arthritis as well. I'll be doing my own drug interaction research in the meantime.

Your story sounds like a miracle and I am so happy for you. Again, thank you for sharing and I shall definitely speak to my doctor(s) about this.

Stay well! Hugs!

 

[SBee]

@JamieMarc are prescribed drugs not always checked for infractions with existing meds in your neck of the woods? They generally are in UK by the pharmacist dispensing them ( a full list of prescribed meds being online for professional medical use only).
Or is it more the case of you needing to research meds\supplements are possible interactions prior to seeing a dr to discuss?
Am obviously a person who needs my own info\research to learn as much as I can about my health, but am curious as to other countries medical services.

 

[JamieMarc]

@SBee well that's not an easy question to answer. I do believe that there are some pharmacists who check for drug interactions but most who do not. Here, it should be the job of the physician to check for interactions before prescribing anything. But again that is not always the case.

At every visit with all of my various doctors, going over any changes in medications I am taking is always done by the nurse or a physician's assistant. That way they always have a current list of my medications. The reason being, I should hope, is so that the doctor will not prescribe anything that would interact adversely with another medication I am taking.

The bottom line is that because of the uncertainty and lack of confidence as I describe above, it is the patient's responsibility to check for interactions. Or I should say that is my opinion and that is my policy. It is not unheard of here in the United States for individuals to be prescribed different medications that have major interactions from two or more different doctors. It could be that the doctor didn't check or it could also be that the patient did not provide the doctor with their full list of medications.

Also, some people may use more than one pharmacy and therefore one pharmacy may not have access to all of your medications to check for interactions.

Because of all the stories I read over the years of deaths or severe consequences of people mixing medications that should never be taken together, I have for decades always kept a running list of my current medications and always check for interactions whenever I am prescribed a new medication or discussing a new medication with my doctor.

I don't really feel that I can point the finger at anyone group because some doctors and pharmacists take extra care and others simply don't. And I firmly believe that a patient should always be proactive in their own health care. Actively involved, aware of exactly what medications they're taking, of any potential side effects to watch out for that could be dangerous, and of course any dangerous or potentially dangerous interactions.

It is, I think, an overlooked gap in our healthcare system that should be regulated or monitored or something. Because most people I know cannot even name their medications if I ask them. Sometimes they don't even know what they're taking them for, and certainly don't think about interactions. They place their entire trust and their whole health in the doctor's hands without taking any personal responsibility. In fact, for my closest friends, I am the one who frequently asks them to let me know what new medication they were prescribed so I can check for interactions for them.

With regards to what I mentioned about my earlier HIV medication affecting my kidneys and bones, that was not a drug interaction, it was a single drug or tablet. It was not a case of drug interaction. Also, these were in the very early days of HIV research and they were not many drug options available, and none that were as safe as those today. Even those today, as all drugs, carry their own risk of side effects. I have been part of a class action lawsuit about this for several years now. Last week I received a notice from the law firm who brought the class action suit with an update. It didn't really tell me much. I don't really expect much because these class action lawsuits involved hundreds of thousands of individuals or at least tens of thousands. The lawyers usually bring these to enrich themselves and give a very small payout to the members of the class action suit should they win. Often, the payout is so insignificant you might be able to buy a loaf of bread with it. LOL.

 

[SBee]

Well thats pretty grim reading @JamieMarc. Maybe in some ways the UK system is a little easier. In NHS we tend to have a designated GP surgery. Whilst there may be many GPs within, we do not always see the same one, we can ask, if its a continuing condition, but sometimes we take pot luck. In my surgery there are also nurses and a phlebotomist. And all have a full access to our medical notes. I remember many years ago agreeing that my full notes should be available to any genuine medical profession within the NHS. So for instance in an emergency a hospital would know my medications and orevioius health history.
Yes a GP should at first check for med interactions, but also the prescribing pharmacy ( and indeed any nhs pharmacies ) issuing meds would also have the health and meds history to double check, or as is the case on occasions, offer a replacement med if one is not available.

But I also agree in a patient ( if they are capable) to take a level of responsibility to our own health and prescribed medications ( or chosen supplements) that includes for someone like me (and you!) also ensuring meds do not interact, and to be aware of side effects.whilst in simple terms, your USA systems seems to offer more dedicated professionals, it lacks maybe a 'central medical history info ' to aid better prescribing and knowledge of an individual health? ( know this is a legal minefield with accessing private details btw)

I confess I try not read the full info on some meds, lest I get say a slight headache and immediately convince myself its a drug side effect. I am the type who may dwell on side effects rather than concentrate on the benefits of the medication. Of course if its an ongoing or serious possible effect I will check up.

I carry a written list of my meds, as if asked,I may miss some even if I do not need to take tem on a regular basis. I think thats an essential thing to do.
But I totally get your need to be extra vigilant in checking each drug prescribed and possible interaction, given the past history and effects you have been left with after the original HIV drug. You were damaged and of course cannot afford to use anything that may worsen your hones and kidneys,though I know you have regular bloods to check your levels. Hmm. I doubt any previous patient will get much if any of the payout from this lawsuit,generally the cynic in me assumes the only winners are the lawyers. And a loaf of bread wont be much good seeing as you watch your carb intake... But the big thing has to be a moral victory, to hope that these pharmaceutical companies ensure their meds are as safe as can be for any future patient. Hit them hard, hurt them financially as they have hurt others physically and additionally. Thats the big win I guess.
As always, take care my friend.

 

[JamieMarc]

@SBee As I've said before, I think both systems have advantages and disadvantages, and I think that if the best aspects of the UK system and the USA system were to be combined, and the disadvantageous parts removed, it would be the ideal healthcare system, or close to it. But I don't expect to see either system improve much in my lifetime.

I am extremely grateful for my Medicare. For me personally, there is no downside to Original Medicare (I don't do what we call Advantage Plans, but I won't get into all that). It meets all my medical needs beautifully and with very little problems. Occasionally, there is something that pops up that Medicare should pay for that I have to deal with, but it's always a relatively simple matter of contacting my doctor, having them recode the medical claim correctly and resubmit. That's about the only problem I have with Medicare, and it happens infrequently.

Under President Biden, some great changes were made to Medicare by eliminating the donut hole (a period where the patient pays 100% of their meds), and capping insulin at $35 for diabetics. Other changes, too, but those two stand out. Under the current administration, many, including myself, fear cuts to Medicare, thus reducing what they will pay for and what they won't; potentially increasing out of pocket costs for "poor" people like me. But, I'm not borrowing trouble. Wait and see.

 

[SBee]

Think you are onto something with the combining the best of UK and American healthcare systems @JamieMarc. I think the worse of the NHS is the intolerable waiting times, particularly for referrals to hospitals\specialists etc. Thats the toughest one to bear. However, I do find my own GP surgery actually very good and supportive. a few irritating admin errors, but for me nothing too drastic. Again, when you finally see a specialist the care, on the whole, is good and I remain very grateful for the NHS.

Individual prescriptions here are approx £10 per item, each time you need the item renewed as well, though there are schemes to pay less over a period of time, helpful for people with chronic conditions, and some people are eligible to not pay for any prescriptions.

* I add here for any UK forum members, that having certain medical conditions means you are eligible for free prescriptions, which covers any and all of the conditions you may have. This is not widely publicised so do check if you may be eligible*

But like yourselves, seeing a good change in healthcare from Biden may feel under threat. In the UK, we also witnessed a new government, and am sure many people who rely on a good health system are on edge as to what may change in upcoming policies. I know I am. Many sections of the population will always find times hard going,and I really cant see any good regarding healthcare or benefits coming along. I wont go fully into the wider politics of either of our nation but it all looks very shaky to me.