I'm sorry to hear about all of your pain. Besides, prednisone and the tramadol, what else are you taking?

It sounds like you either have a med failure or you are under-medicated.

I was like that before my Rheumatologist added the biologic. I still have occasional pain, but all I take is Aleve.

Hope you find answers.

I was diagnosed in July 2017, and started out with MTX - 20mg per week, plus I was given Naproxen.

In October, we added Plaquenil and sulfasalazine because I was rated with "high disease activity" during that visit.

Since then, things have gone from bad to worse as I have had the foot, ankle and knee involvement which were not as evident as before. Things has really progressed fast.

I suspect I will be moved to a biologic (with or without MTX) at this appointment. And if I do stay on the MTX, I may move to injectible instead of oral-route.

I suspect it will take time for the biologic to work, just like it has with the MTX and triple therapy. What do I do in the meantime? Prednisone is not a good long-term solution for me...

My guess is that they will switch you to injectable MTX because it absorbs better. I have been told max dose of MTX for most people is 25, so they may increase it and leave everything else the same for a bit. Too many changes makes it difficult to tell what is working. They may not want you on the prednisone because they will want you to feel any differences which means you may have to deal with the pain a bit longer. After they max out on MTX, my guess is they try biologics. Your insurance likely dictates what meds and doses have to be tried and for how long before your doctor can move on. Biologics are expensive, so they will want to try other stuff first, most likely, but it sounds like you are right on the border.

It took me years to find the right combination for me. I know it feels like a long time, especially when you are in pain, but 6 months really isn't that long. Biologics are more widely accepted as standard of care and approved faster now.

Of course, I'm not a doctor and can't pick your meds for you. If something like this doesn't happen and you don't think you got a reasonable explanation for it, you might want to consider a new Rheumatologist.

Better meds for sure. I have so much damage and pain that I take Nucynta, which is a sustained release Tramadol since a med failure in 2015. I take it with food and don’t have stomach issues.

Demand a biologic sooner, rather than later. No idea why you got experimented on with the triplicate DMARD thing. I hope you get the pain under control soon.

I'm not leaving the Mayo Clinic with an Rx for a biologic. And whatever they need to give me for pain until that biologic kicks in.

And I realize that 6 months doesn't compare to years, but I can tell you that 6 months is longer than anyone should have to live in constant pain. So Kimhurts I appreciate your perspective, but it is a little hard to see from where I am sitting right now, especially knowing the biologic will take time to start working as well.

I get ya, Frazzled. I just wanted to prepare you in case your insurance company is driving this bus, not the doctor. I hope that is not the case and you get faster results.

Good luck and please keep us posted. You will be in my thoughts and prayers.

Yeah, I just need a prior authorization that my doc will do, and then there are limits on how much I can get per month. Insurance has been great working through all of this.

Now to find a way to minimize the pain in the meantime. I mean I can't even stand up for 15 minutes without my feet hurting for the entire next day (or longer). I never realized RA can do so much damage so fast.

Your best help is going to be a biologic combined with [possibly] MTX.

Sometimes you have to jump through hoops to satisfy insurance companies.

Taking pain killers and Pred will mask the real issues......catch 22.

And BTW - I totally agree that six months is plenty long enough to go without a biologic. You didn't hear it from me, but sometimes you have to exaggerate the pain to make them understand you REALLY need the higher tiered drugs.

Hi Lynn,

I am confident we're on the path to a biologic. I've passed notes to him through the patient portal and he agrees this is likely where we are going. I have all my insurance ready so I can help him understand what needs to be done to satisfy the insurance company. These moved to no Step Therapy required with the latest Formulary list, so now there is just a Prior Authorization required and quantity limits.

And I get the catch-22 that is there. I really do. But living as if in a flare most of the time, with even larger flares happening in between those "normal" times is too much to ask. I know this is a disease about waiting to find the right combo of meds, etc. But I can't work when I am in constant pain. And I don't have a choice about working.

I’m starting to agree with you Lynn on the fact that you have to exaggerate your pain! I usually go into my doctors looking the best that I can in a positive mood always smiling. It’s beginning to dawn on me that they don’t take me seriously when I tell them how much pain I am in. One of my best friends is a long time nurse and she told me the next time when I go in for my spinal stenosis appointment, to not wear make up, let my hair messy, wear sweatpants and don’t smile. Extremely tough but maybe it’s worth a try! Maybe they will believe me then when I truly look as bad as I feel!

I believe that I am also under medicated for my RA. I’m finally seeing a new rheumatologist soon. This will be my third one but we have to keep looking until we find a good fit. Plus this time it’s a lady so maybe she will finally listen to me.

Good luck frazzled...I’m starting tramadol today.
Darcie

Best of luck on the Tramadol. I have found that unless I take it on a regular basis it doesn't help much. It's like anything with pain - you have to stay ahead of it for the pain meds to work. I do know that it impacts my sleep because it has some action on serotonin, etc. But my sleep is always messed up so it is hard to tell.

I plan to be very clear on my pain. I can't walk without significant discomfort, and that lays me up for the rest of the night. Yesterday I had to do a very small amount of walking at work, then had to blow the driveway from the overnight snow, and then I was basically soaking my feet and/or sitting for the rest of the evening.

Remember: the goal is to lead as happy and productive and painfree life as you can. And if that means going to a doctor's appointment with hair a mess and without makeup, and walking much more slowly than you normally do.....JUST DO IT.

I never wear makeup and I shave my head. Does that count for anything?

I know these things might not work when the pain is really bad but have you tried really hot baths? I sometimes have to do them up to 3 times a day with epsom salts. They help me if I start before its really bad. Also have you tried a tens unit? My heating pad is also my best friend. I try alternatives first, I hate the forgiveness from pain killers.