Rheumatoid Arthritis Support Group
Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...
My rheumatologist has me on Celebrex and Tramadol-as-needed. We chose Celebrex only because I'd taken it in pre-RA days and found it somewhat helpful and had no side effects. The Tramadol is for bad days. I don't take it often. I have not felt that the inflammation was under control, but there was an improvement, at least.
I also do MTX and Humira. They're working. But I haven't been completely happy with the control of pain and inflammation from the Celebrex and Tramadol.
I saw my family doctor today for an annual physical. He told me that he, personally, has recently switched from Celebrex to Zorvolex, and it has been so effective at reducing inflammation that he no longer takes any pain meds (not RA, but chronic pain and inflammation, so he's pretty understanding of my situation right now.) He told me that he has been prescribing it for many of his patients and 29 out of 30 reported significant improvement. Five more hadn't yet gotten back to him with their results.
He said if I look it up it will say it's an NSAID for mild to moderate pain and that won't sound like it would put a dent in my inflammation, but he's found it to be extremely effective.
Now, this next part is so over the top that if it were written into a script a director would take it out because it's overkill. While I was still in the exam room, his nurse popped her head in and said "Mr X just called and he wants to switch to the Zorvolex". While in the hallway checking out, someone came in to the other window and said "You gave me a trial of Zorvolex last week, and the difference is amazing, I'd like to get a scrip for it." And the receptionist, who also has RA, said it's been a game changer for her. I mean, it was starting to seem like I'd been thrown into the worst-produced commercial ever. I was execting to hear a theme song at any minute.
So I got the scrip filled. (And of course will discontinue the Celebrex while I try it out.) I am interested to see how this plays out. I checked my most reliable measurement of inflammation - touching my thumb and pinkie on my left hand. Through this whole ordeal, that's been my best indicator if my inflammation level. So hopefully I have something objective to use as a comparison, because good heavens, that was a lot of not-so-subliminal grooming going on before I filled the prescription!
Anyone have any experience with this med?
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I've been on high dose prednisone for pneumonia, and now I am slowly weaning. But lots of symptoms I don't like having, plus overeating has put at least 10 lbs on me. The food is "loud" as the GLP-1 users refer to it.Also pressured speech. Which comes out in my posts. Sorry I posted so much. I just need an outlet for my agitated and irritable brain. Just scroll on by my posts, if they are too...
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I haven't been around in a long time. I am admin in a private group, and I would like to upgrade someone else to that position. I thought I knew how to do that, but the prompt has gone missing. Or is it not allowed to upgrade someone else to admin? I just find "ban and demote" under "Edit." I don't get notifications to DS anymore, but I wil come back in a few days to find out the answer. There...
Apparently Zorvolex has been around for a bit, but was made by a small company which was recently purchased by a larger one, and when that happened, it got a bigger profile. My doctor said he'd been unaware of it until relatively recently, despite a stream of med reps pounding on his door all the time, and his own personal quest for a better pain and inflammation management protocol. It really underscores what a racket the whole big-pharma thing is - here's something that apparently can be very effective, but it wasn't in the 'system' so it wasn't well known. But that's one of the prices we pay when medical care is considered a 'business' and profit is the ulterior motive.
I also wonder if it has been approved in Canada yet, and what the name of it is here? I am having a lot of chronic pain, and I would like something new in my medicine kit. I took 10 mg of prednisone for an asthma attack, brought on by forest fire smoke, and I felt so much less pain it was incredible. I don't want to stay on prednisone, of course, so I would like to know more about this, talk to my rheumatologist about it at the end of the month.
My doctor had said that I'd know in 48 hours if it helped or not, and he wasn't kidding. Holy crap. Night and day. It worked (for me) so well that I overdid things yesterday and I'm tired today - but I'm tired in the 'normal' way I used to get tired if I worked hard, not the RA kind of tired. I got up to pee during the night and was halfway back to bed before I realized that whoa, my feet don't hurt. I can sleep on my bad-hip side again.
My 'sausage fingers' look more normal. The joints in which I have had the most RA damage still hurt, but it's more localized now, it's not that widespread tenderness that I associate with inflammation. This seems to have sorted out the RA damage from the secondary damage and pain from the inflammation, exactly as my doctor thought it might. This isn't doing a thing for the RA itself, nor was it supposed to do so. But man, what a difference in the inflammation. And there's difference I can't quite put into words. Whenever I've been in a highly-inflamed state, I feel.........crawly. I feel like there's a sort of burning, almost-itching...........wrongness. I just can't find a better word. This has absolutely made a difference in that.
Obviously this is a very short term experiment. Perhaps it will not be effective long term. But I'm discontinuing both Celebrex and Tramadol-when-needed in favor of the Zorvolex as of now.
I'm sorry I don't know the answers to some of the questions that have been raised here. I know that's it's classified as an NSAID and recommended for mild to moderate inflammation. I know that my doctor, who also takes it, said that both he and I fall outside of that mild-to-moderate range, but his own personal experience indicated that it might work for me as well as it did for him.
So why would you mask the symptoms with Diclofenac?
Sounds like it's putting the cart before the horse.
I'm only a year into this new reality. I'm sure my DMARDS will continue to be tweaked. I haven't yet had an appointment where some adjustment hasn't been made. I don't understand why I should remain in pain while that's happening.
The question is: why focus on adjunct therapy when the focus should likely be on the DMARD.?
When the biologic and MTX are truly working, there should be little complaint about pain.
Now, if you are at the end of treatment options, this might be good information for someone who has burned through the every med, and masking is a viable option. But, stopping deformities by attacking the disease always has to be the primary goal.
I wish the internet had been more advanced when I got sick, or someone would hav told me this. My cousin who has RA from age 1 1/2 was very helpful and supportive of me, in my early years, but she didn't know this. In fact, when she got an RA nodule in her throat and it closed off her trachea and she died in the ER, fortunately revived, it was me who told her to start mthx. She said her rheumatologist said, "I never though of that!" How odd that stopping the disease would not be the focus of treatment no matter how long or short you have had RA!
I am surely not the only person here who is continuing to treat inflammation and pain while going through adjusting the dosages of the meds that fight RA. We read posts sometimes from someone who has found the perfect solution early on in the process, but more often, it takes a few adjustments.
I also have pain and inflammation that are unrelated to RA, and I think I should be able to treat that too.
Lynn, Marlene, there is no 'focus' on anything to the exclusion of something else. You can look at two things at once, and that's what's happening here. You have reached a conclusion that is not supported by my posts. I am taking biologics. I said so in my original post. The dosages are still being tweaked, which is normal at this point in the process. And it is perfectly okay to treat inflammation and pain when it occurs. I would think very little of a doctor who only prescribed meds that fought the RA and didn't treat the patient's pain during that process.
Still: You said the DMARDS are working. How do you know this if you still have pain and inflammation?
'brain fog' has changed for the better (again, something I can't prove to you.)
I know the combination and dosage I'm taking right now is not perfect, because there were some other symptoms that aren't back to 'normal' - but I also understand that 'normal' is kind of a moving target, since there's other issues at play for me too, including the ones that are the primary cause of inflammation for me. That's related to a hip problem that is not part of the RA situation for me.
My upcoming appointment with my rheumatologist will only be my fifth one. There has been a tweak every time, and I expect that there may be so this time as well. I am new at this, and I do not post anything that indicates otherwise.
I really dislike feeling that I have to justify the decisions I've made with my rheumatologist or defend her professionalism. She and I are doing the best we can here. Surely you realize that insurance companies often dictate the pace at which tweaks can be made to one's protocol. If I haven't 'proven' her competence to you by this point in this thread, I'm not really sure what else I can add. This discussion has gone in a direction that's making me uncomfortable, frankly. I'm really happy with my doctor, and while the progress can be slower than I would like at times, I realize that this is unfortunately the way it goes for RA.
But having said that......let's remind ourselves that tone translates into written words on groups like these horribly. I'm perfectly willing to accept that I may have misunderstood the intent. I don't wish to have an argument with anyone. Let's just move on and be supportive. I might be wrong but I think that's what most of us come here for.
Hugs.
Kim