Rheumatoid arthritis.

@sunshine67 Thank you for the information. Good luck to you also.

My experience is that everyone is so specialized now, you have to let your docs stay "in their own lane". Your PCP, as well as everyone else should know all of your diseases, the complete list of all your meds, both Rx's and OTC stuff, but your PCP is the one to handle routine virus illness and such. These days, at age 69, I have a PCP, whom I've been with for 25 years, but I'm also hooked up with seven different specialists, plus an acupuncturist! Fortunately, I only have to visit the rheumatologist every 3 months. Everyone else is once a year or every six months. Acupuncture is twice a week and it really helps with foot and ankle issues. Tough getting old, haha

@krisingle1 Im not trying to be sarcastic but I coordinate my own care. I keep extensive documentation and call each provider as needed. From an Insurance point of view I ask every provider to send their notes to my PCP and they maintain the electronic file. I follow up with my PCP to make sure they get the notes as needed.

Hope this helps!

@andid
You really do have to advocate for yourself and make sure that all your docs knows what is going on with your care. It may take a few extra minutes, but takes notes with you to your visits if needed and hopefully, your PCP actually reads all the notes he or she gets from the other specialists!

I think everything depends on your insurance carrier and where you live. I live in NC. Often takes months sometimes 6 or more to schedule appointments. I did not appreciate the sarcasm.

@andid

Thanks so much for the response and advice. It does not seem sarcastic. I know I need to be my own advocate but wanted to be certain I wasn't stepping on anyone's toes.... You've merely confirmed what I had guessed!

Thanks again

@charliesophiedaisyro

I didn't mind the sarcasm. I'm a former NYCer and now in an NJ Burb. My geneticist appointment (I haven't had it) will be nearly a year-long wait, so I hear ya. Best of luck to you.

@marieirene
I have skin tested allergic to wheat , but never really followed a no wheat diet .But after failing other RA meds for one reason or another, I was left with taking sulfasalzine and a small dose of prednisone which really isn't keeping me pain free.
I suspect it is the lower doses of prednisone that is causing your symptoms to increase. Last year I weaned off of 10 mg daily over a period of 3-4 months. Perhaps that was too fast, but at any rate, I could not remain prednisone free. I'm managing, barely, on 5 mg now.
Simponi Aria was one of the meds I failed. My RA symptoms actually got better after my first infusion, and I was so hopeful I could continue it. But about a week after that infusion I began to have cardiac issues , so could not.

After all that, I decided to take my wheat allergy seriously and stop eating wheat. It is really hard to do, but it makes a big difference for me and on rare occasions when I cheat, the aching and severe fatigue starts all over again. There is literature that suggest that a lot of people with RA do better when they give up wheat.

Another thing is perhaps taking fish oil might help. I started taking it 6 months after I was diagnosed 25 years ago. There have been good studies that show that taking it for RA eliminates the need for pain meds in some RA patients. There is good information online about how to take it and the dosages used in studies that were done.
I have never been overweight, but I know that for people who are, it is harder to manage their disease.
My daughter has sero-negative RA and she is quite overweight and is having a harder time than I've ever had.

@krisingle1
I know just what you mean! I find that each specialty will not discuss me as a person, just as symptoms; so I keep appointments 3 or 4 times a year with my PcP. My rheumatologist is primary. However I was feeling short of breath, like when I have pneumonia and realized not one provider had listened to my heart and lungs in ages! When I asked him to, he disappeared for awhile trying to find a stethoscope! After ages without a good internist, I know what you mean because she looks at tests, diagnostic and preventative, orders labs. I have all the others forward results to her. It might work for some people to do this for themselves. But I'm 67 and have been living with chronic disabling illness since I was 31. It is complicated! And I have energy limitations. I was an RN. I used to advocate for people in their homes. Believe me, not everyone is able to manage their own case! Good luck to you. I hope you reply if you can find a way to get that help.

Yea - MTX is big no-no for liver if you are already showing elevated enzyme levels. But depending on the anti-TNF you are on, you may have risk of forming antibodies to it when you stop MTX. I did so with Humira when they stopped mtx for me. So I had to change anti-tnf drug.

First..inform your primary you intend to fire that Rheumy and get a new one - it would be great if he would participate.. i moved a lot in my career so had to frequently hire new ones. And I fired two.

The second one I fired tried to pass mine off as Osteo because I was sero-negative since diagnosis in NY. But as luck would have it, this time i came back sero positive. So I found another, he put me on remicaid and life has been great since. I occasionally flare and take low dose prednisone for as brief a time as possible. I have supplemented with Hydroxychloroquine but I don’t like it so don’t take that route.

You may have to try two or three to find your magic potion.