I also live in NC. I am also having pain come back while waiting for my next Cimzia shot. This is only my second month and I think it is working but slowly. I took a few weeks of prednisone to stop really bad flare-that helped but can't take anymore. Going to take some ibuprofen to try to keep pain down-mostly in shoulders,neck. Don't take too much I'm afraid it will make bp go up. Probably does less damage than Cimzia does.

What do you take for pain? I always take very detailed list to my Rheumy. I know exactly what I want answers to because he can get off track. And it helps me not forget what I want to ask. And you know
you only get 15 minutes.

I met a 74 Lady yesterday who saw head of Rheumatology at Baptist Hospital. He had her on plaquenil and patches that she put on her back for pain and voltaren gel,that' all. She had taken enbrel,remicaid and orencia and they had not lasted long.

I don't really know what plaquenil does but I thought that seemed like out-dated methods.

Hi, NCGranny,

What pain medication do you take? Seems like I remember you being diabetic, so prednisione isn't an option. Maybe a short course would not be out of the question? I take Tramadol for pain. I used to take Ibuprofen, but it lost its effectiveness. Do you take Celebrex or another anti-inflammatory med? I'm so sorry you are suffering like this. I don't know what is up w/docs these days. I do know the medical profession is in limbo re: Obama care, etc. Sometimes docs seem really distracted. My RD is a woman. She is very direct, and vern no nonsense. She does answer my questions, though. I am a bit intimidated, even tho I shouldn't be, so I forget ot ask what I want to know most of the time, even if I have it written down! LOL

Best Wishes,
V

I write down a list of my questions and take it with me. He says, "Uh-oh, the dreaded list."

I have tramadol and hydrocodone for pain. At the present time, he is allowing me to take 1 Naproxen per day until it starts back in on my liver and kidneys. I have only been allowed prednisone twice in the last 1 1/2 years because of my diabetes (I was in extreme pain and swelling). I also have a prescription for Voltaren Gel which I have not filled yet. I have already spent my month's allowance for drug co-pays so it will have to wait a few more weeks. There are no generics for my insulins and at $70 co-pay, the money adds up. I am allergic to Celebrex and sulfa and sulfates.

I have also broken out with what looks like petechiae this morning on my legs, ankles, arms, and abdomen.

I'm such a mess today that only the Lord could love me (and He does.) Lol.

Thats whats happening to me too, after Remicade wears off....to the next one in 6 weeks....But i had to get off Mtx ( fatty liver)

i don't enjoy taking prednisone, hard on my bladder....but i think my old rheummy would have told me to take the prednisone . I got off of it about a week after my last infusion..it was 10/26

I saw my new rheummy the day before the Remicade, she increased it again..She gave me 10 reasons not to take the prednisone ( unlike the old rheummy)...and i said..i can't sleep in pain, can't hardly use right hand in the bathroom

i had to take predn..to function..Norco helped somewhat, but the predn..helped more..She did see my hands were swollen...so forget the numbers on the labs

This is my 8th rheummy in 16 yrs....Yes, maybe some are so busy or what, all biz-like, just looking at the numbers

I luv Remicade....Rituxan i had for a year, didn't work the 2nd round

NC..i guess we typed at the same time...sorry u can't take predn..i asked for a sample of Voltaren gel...pretty good size sample tube they have
i heard it's expensive..no generic

Can any of this be seasonal? I always have a bad time between seasons. Of course barometric changes can cause pain any day, but there does seem to be something about the seasonal changes that irritate my RA. I also do infustion. C

Your rheumy needs a good talking to! I can't understand why these people don't want to hear peopl's' questions. Well I do, but don't like it.

Couple of things... when I realized that my RD wasn't going to help me manage pain, I went to my PCP. I let my RD know what was going on, and it worked well. That's another thing I don't understand about many rheumatologists. How can they ignore pain as a substantial reason why someone is NOT in remission, nevermind good labs and lack of tangible inflammation?

Are you on a 2 month schedule for Remicade? How long have you been on it? Have you ever discussed more frequent ifusions or dosing increases? Those were 2 options my RD discussed before I ever started, but I never got that far, anyway. More "uh-oh" list items, perhaps?

The last poster mentioned seasonal changes irritating her RA. Pretty common, but I think the goal is to NOT have to suffer through an entire season in only partial relief.

Maybe you can take a male friend with you to you next appointment. I've heard many good reports that doctors become a lot more willing to listen when a man is there. It's terrible to have to resort to that, but whatever works. Doctors aren't any different than the rest of us, except we depend on them. After the first visit or two, I call all my doctors by their first name, to make things a little more casual. I'm older than all my docs except my PCP, anyway.

Good luck.

Have you seen either a dermatologist or a cardiologist? RA does have an effect on your cardiovascular system sooner or later, so you should have that checked out. sometimes it can pop up with vasculitis on your skin. If its not vaculitis, see a dermatologist.

If you are taking medications that suppress your immune system and you have skin problems the last thing you need is to have an infection start. That could be very bad for your overall health. If your insurance requires a referral get into your PCP on Monday and get one, otherwise see one or both specialists ASAP.

Madi15, I have already seen a dermatologist. When it first started, I was afraid it was cellulitis since I am diabetic. Thank God it was not cellulitis. I intend to call my rheumy this week to see what he wants me to do since petechiae goes with RA. I have so much swelling with RA and this goes hand in hand with the swelling.

Buddhacat4, I am on 6 weeks intervals with the Remicade and I take MTX. Because my labs were so good last time, we decided to hold at the present dose and frequency a bit longer. However, it appears that is not working so next visit, he may go ahead and increase my dose. I have felt better (less fatigue) since I started Remicade 5 months ago, but the swelling has only lessened on the 2 Prednisone bursts I have had in the past 1 1/2 years.

Yeah, I have thought about begging my 6' 3" 210 son to go with me just once. Lol. I really think that my rheumy is very knowledgeable in his field. It's just that for some reason, he and I do not communicate well. I don't have this problem with my other physicians.

My PCP is the physician who prescribes my pain meds...and I have a Pain Management Physician that I see for my back problems (OA and bone spurs and herniated disks).

ncgranny62, I would find a new rheumy. I had one that sounds like your current dr. I stayed with him longer than I should have bc like you said, he is very knowledgeable. But guess what? So is my new rheumy and he shows a little compassion. I switched and feel so much better about going to appointments. I used to take Remicade and I would feel the same way as you at times. My rheumy would dismiss my complaints saying that the numbers were good just as yours has. I know that Remicade can have side effects that are similar to RA. Crazy huh? I was swollen and achey but I did notice it was a little different than what I experienced with a flare. For me it didn't last long just a couple of days. Overall Remicade worked great for me. Had to say goodbye when my wonderful new insurance wouldn't cover it. I hope you find some relief and find a new dr.

Hi NCGranny,
I'm on Remicade as well (every 8 weeks) and haven't noticed too much difference in my pain. However, my relief comes from the 100mg Tramadol every morning. If I dont' take it, I'll end up writhing in pain by 11am. Although my blood tests always come back normal (no evidence of inflammation), I go on low dose Prednisone every once in a while to calm the pain. My pain is in my left hip & shoulder, lower back, neck, and knees.

The pain got really bad recently which caused me to have a "melt-down" in my Rheumy's office. Because there's really nothing he can do except offer the meds, he referred me to a Pain Clinic which has really helped me deal with the emotional and physiological side of this condition. The communication is better with those I've talked at the clinic, but I can certainly sympathize with your experiences at the doctor appointments.

hi NC Granny,
I know Buddhacat mentioned this already, but it sounds like it might be time to try upping your dose and/or increasing the frequency of doses. I was on Remicade for about a year and was on the maximum dose and doing infusions every four weeks before I finally gave up on it and switched to Orencia. I have a wonderful rheumy who always answers my questions. In fact, she seems delighted when I have questions that show I've really been thinking about how to manage my illness. I switched to this rheumy after seeing another who was clinically very knowledgable (and head of Rheumatology for a large, well-respected hospital), but she was cold, and didn't take me seriously. Any board-certified doc should be able to manage RA, but not being able to communicate is a serious failing. Good luck and I hope this flare passes quickly!

Caren28, how did Orencia work out for you? I've been on Rem for 11 months now and am thinking about trying something new...

As to rheumies, out here in the sticks, we're lucky that we have a rheumatologist at all. And he is good...just doesn't communicate well. He and I have already discussed increasing the Remicade. Since my numbers were good, he and I decided to hold for a couple of more infusions at the present dose and frequency. If I am still having the swelling and pain, we may increase or we may decide Remicade is not the answer for me. The Remicade has really lessened the fatigue but so far it has not helped the swelling and pain.

I spent the day with my PCP and his physician's assistant working on diagnosis for my petechiae. Had an ultrasound of the leg and ruled out blood clots. Put me on Prednisone burst to knock it out. Says if it is not vastly improved at the end of the prednisone dose, we will see my dermatologist for more definitive diagnosis and treatment. Just last month, had a whole battery of tests dealing with my heart. It's healthy. My PCP is extremely thorough.

Did I mention that my PCP is hero-worshipped by a four county population? He is a superb diagnostician and does so much good for the community. We are truly blessed to have him here.

Anyhow, I should be feeling better soon. Prednisone relieves everything...and causes more problems down the road. Though at age 67, I'll risk the occasional use of prednisone.