Frances, I am so sorry you have not had luck yet with Orencia. How many months have you been on it? My Rheumy said sometimes it takes 3-4 months.

If you want to explore other options, I have done well seeing integrative doctor. I am not on an anti-biotic but rather a natural anti-bacterial, vitamins, few supplements.

They have done food allergy tests on me and I have eliminated some foods. It's the total combination that seems to work. Along with the anti-bacterial I take a probiotic.

Frances, I am extremely allergic. I,too, have a hard time taking NSAID and can't take biologics because of side effects.

If you want to explore, look back on some of my old posts that show websites about the anti-bacterial I am taking.

A lot of doctors now believe that autoimmune disease come from having a "leaky gut" (stomach) and once you fix that you fix the disease.

Good Luck to you.

Absolutely NOT taking too many pain meds!
We take what we can to have some kind of quality of life.
I sleep all weekend so that I can work during the week. I could NOT work if I didn't take pain medication. It gives me a bit of relief to get my swollen feet hands knees and hips moving. I saw my rheumy today and my feet were the size of a loaf of bread. He didn't know how I was walking. I cried the whole way home. My point is if biologics nsaids or prednisone isn't working its ok to take pain meds to have somewhat of a life. This disease is just awful and thank goodness we have each other. Sorry to sound like a downer. Think of you taking pain medicine as a diabetic needs insulin or an overactive thyroid needs thyroid medication. This is a CRAPPY ASS disease and do what you can to bring the pain levels down and so be it if that means taking vicodin EVERYDAY as this disease unfortunately isnt going away soon :( Be good to yourself ncgranny!
Xoxo MLC.!

I think your doing fine on pain meds. Doesn't sound like too much to me. Are you allergic to cortisone shots? They are my life saving drug, especially in my feet and knees, and even hand.

Orencia will work, it just takes so long, took 6 months. Lots of hugs to you ! Lots and lots and lots!

Lin

I agree with mustlovecats, we take what we need to have some kind of quality of life. I too can sometimes just barely make it during the week through work. Medication for pain and RA management is an important part of our life for hose who have an auto immune disease. That is just how it is.

Honey, you are not taking too much . . . if anything, not enough.

Like epi said, please do not confuse dependence with addiction .. . .

One of the things with pain is, if we let it get too bad, it is hard to control. Are you able to take a lower dose of pain meds more often? I found that Ultram ER (extended release) controlled my pain better with a lower dose, than the regular release. I would take it at bedtime, so it would be in my system when I woke up. Made things easier to deal with.

I completely understand wanting to have all of your faculties with you, you need to be able to find a balance.

Do you see an endocrinologist for your diabetes? The reason I ask is my mom is a Type I diabetic and over 15 years ago they started her on a low dose statin (I think, I'll check) to help protect her kidneys from arterial plaque build up . . . While she doesn't have any health problems, other than the diabetes and its sequelae, she has done well. She adjusts her supplements as needed to help get her through stuff. Takes fish oil, nattokinase, etc. To help with arterial plaque build up. It is common in diabetics to get arterial plaque build up, especially those on insulin. Her right carotid was 80% blocked, but it had happened so slowly that her body had established alternate pathways to compensate. With her supplements and maintaining a healthy diet (she rarely eats red meat, avoids dairy, etc nothing too extreme) she was able to get it down to 40% blockage and not need a procedure to clear it out . . . .
I hope you can get some relief soon hon!

I'm not wearing my glasses right now, so i don't really know if someone said this already, but it would be benificial to switch vicodin with something that had less tylenol. You liver doesn't need that to irritate it.

I think too, in order for your Rheumy and your pain amagement Doc's to effectively treat you, you need to be sure that any labwork gets passed to both of them.

Other than that : TAKE MORE PAIN MEDS!!!!!!
My rheumy tells me that I deserve som quality of life...You also deserve to have some quality of life. Pain meds aren't going to make your driving anyworse that driving with the intense distraction of pain meds. And you can certainly increase slowly.

Prayers for you...I've been struggling with pain too, and I don't want anyone else to hurt either! Gentle hugs.

Hey all,
I have a primary care physician, a rheumatologist, an endocrinologist, two dermatologists, opthamalogist, pain management physician, an orthopedist, and a dentist...located in 4 different counties. I am helping to support our medical community the best I can. Lol. They are all fine physicians.

As to the question about coordination between doctors, I do what I can to ensure they are sharing lab results, medication changes, etc., but what happens when one gets elderly and not as sharp mentally? Who ensures all that coordination is happening then? We really should be able to count on our physicians ensuring that is routine procedure.

I actually am feeling a little better the last couple of days. I appreciate all of your responses. It's good to have a place to vent and people who actually know what it is all about.

Hugs and prayers for all of you.

Frances,
I know you said you had four doses of Orencia. How long have you been taking Orencia?

Good Luck to you. Here's hoping for less humid weather so we can all feel better and less achy. Bring on the fall.

Wendy, I had my first Orencia infusion on June 27. It takes a while for Orencia to kick in. My rheumy said 3-4 months. I've read it can take as much as 6 months. If it would just take care of some of the stiffness and swelling, I would be happy. Rheumy says we will evaluate at my October appointment. He's already mentioning Actemra (my last chance at a biologic). I'm really tired of the pharmaceutical merry-go-round.

I hope you are continuing to improve. Good luck.

Although a few days have passed since you first posted I suspect you are still having pain. Sympathy. Doesnt it feel when pain hits so "in the moment" - so hard to think it will pass and see beyond?

You sound like it is ongoing too. I am not sure how to answer your question except to say that like some of the other people who answered my medicos say you have to balance possible side effects with quality of life. If you are so riddled with paid you cant go out or do anything you might as well take the risks with the odds offered...

But the core is that your RA is not under proper control. Hopefully, although I suspect this is complicated by the diabetes as well they will eventually get you better relief.

Wanted to look up Wendy 55's anti bacterial but with private profiles you cant see anything!! Sigh. If anyone knows what it is and reads this please post name of it.

Frances, I am trying to eliminate all the food from my diet that my integrative doctor recommended.

I have made a big accomplishment changing my too often sausage patty to a turkey sausage. But I did that. Trying to save the pork for occasional eat out. But you know how we North Carolinians love our pork especially bbq.

Going to beach in a few weeks and I am real concerned about eating out all the time. I have eliminated dairy,almost all wheat,almost all sugar (not all, lol), artificial sweeteners, high fructose corn syrup, red meat and most pork.

I hope you do well on Orencia. I may have to take that in the future but my Rheumy said that was the last thing he could give me. I have too many side effects for the biologics and dmards. That is why I am trying this diet/vitamin/supplement/anti-bacterial plan.

I know once we get into fall with the less humidity we will all feel so much better. Enjoy that Raleigh rain I see the radar is showing.
Fall is coming.

Adequate pain management is essential! I take 2-4 norco (lowest dose) a day, plus neurontin. I am more clear-headed on pain meds than off. Still on 5 mg prednisone. Waiting for the Avara to kick in. The pain takes SO much out of you! When I manage my pain, I don't feel as desperate and depressed. Gentle hugs to you!

I meant, in my post (Reply #21) That driving while taking pain meds can't be any worse than driving while in extreme pain.

Please, try to take a longterm pain med (12 hr), and have some break though pain meds. Suffering sucks!

LOL, I too have numereous doctors that I support, and, now that I think about it, in 4 counties!