What is controlled?

[jetttsd]

II was diagnosed in October with zero-negative RA. I am on mix of methotrexate, planquenil, folic acid and Celebrex. I went to rheumatologist Monday and he said he is happy to tell me that my bloods are all in the normal range so I am controlled or have inactive ra. Good news accept I still have pain, stiffness and fatigue. It is better than it was, but I am still having. Does controlled mean I shouldn't be having symptoms or just that I shouldn't be having joint damage?

[Dekeboo]

Hi, this sounds identical to me only I don't take as many meds. I have my follow up appointment with the rheumy today and will ask the question as it's something I'd also like to know.

[EasternBunny in reply to Dekeboo]

Ditto would you post the result later (hopefully it's not 42), please?

[Dekeboo in reply to EasternBunny]

Will do

[jetttsd in reply to Dekeboo]

Thank you. I should have asked, but was so surprised my mind went blank.

[helixhelix]

Hhhmmm, sounds like you have a rheumy who goes by the book! I'm lucky enough to have a rheumy who looks at the blood results, my physical symptoms and how I feel. Pretty early in my RA journey my blood results started to improve hugely, but I still had tender puffy joints, stiffness and fatigue. So the rheumy kept adjusting the drugs and doses until It all improved. (I'm now on MTX, Sulpha and Hydroxy plus NSAIDS).

Do you know what your DAS score is? This combines blood results with the number of tender and swollen joints, and a measure of how you feel so should give a better picture than just blood results. But even if you don't know, in my opinion you're not controlled if you don't feel controlled! So make sure you tell your rheumy.

I'm 5 years in now, and well controlled. Which for me means that most of the time I don't have pain or fatigue. I'm still stiff first thing in the morning for a short while, and I do get fatigued easily and joints will hurt if I do too much - but that's not an everyday experience.

[jetttsd in reply to helixhelix]

Thank you for your reply. Sometimes I don't think rheummy even looks at me, just my bloods. I don't know my score, not sure he has done test you mentioned.

Thank you for your take on controlled. I am much better, yet still have pain in wrists daily (not a 9 or 10, down to 2 or 3). Most of swelling is gone. I guess I thought controlled or remission meant no symptoms. He said he thinks I also have tendinitis in elbow, OA in knees and planters fist. In foot causing problems. l think I'm 90 underneath and 50 on the outside.

[helixhelix in reply to jetttsd]

He probably has, as it's a calculation they do not an extra test, but just hasn't told you. DAS stands for Disease Activity Score and there's information about it on the NRAS website, so have a read and next time ask him as it's useful to keep track for yourself.

But if there's some tenderness in joints then I think you could probably improve more so keep pushing your rheumy - often they assume all's fine unless you tell them that you don't think it's good enough. Carry on aiming for no symptoms! I did, and generally I don't have any most days.

[jetttsd in reply to helixhelix]

I will read it. Thanks for the advice, I will speak to him. I guess I just have to get over sitting around and trying not to complain.

[helixhelix in reply to jetttsd]

I think of this as a self service disease...so nobody hands you anything on a plate you have to keep asking. So next time, when rheumy asks how you are don't say "not too bad", or "better than I was" but "I still have continual stiffness, joint pain and fatigue"

[jetttsd in reply to helixhelix]

Wow, are you sure you weren't at my appointments. These statements are almost word for word what I say. I will have to change.

[Dekeboo]

I've just finished my appointment and am waiting for bloods to be done but I asked all the questions and the answers are to follow. Now will I be able to remember the answers by the time I get home? Lol

[jetttsd]

Looking forward to answers, thanks for asking.

[Dekeboo]

OK, so...I have all the symptoms that you have still and I asked the question, do you consider my condition to be under control now? Is this the new normal? She told me that she didn't consider it to be under control or controlled as I was still suffering the symptoms, of joint stiffness, fatigue etc. even though they were not as extreme as they were when I had the flare initially. She said that once I was able to go there and say yes, i feel great for six months then they would consider reducing my meds gradually till i reached that point whereby at a certain level my condition worsened and I think then they would know the correct dosage in terms of that, but she said it wasn't under control if i was still having the symptoms. I took that to mean that once I had the right dosage of the right meds to eliminate the symptoms (I am going to assume that the morning stiffness will be there whatever) then it would be under control.

I hope this makes sense and that it was the question you wanted asking as I wanted to know too!

[jetttsd in reply to Dekeboo]

Yes, thank you very much. Based on that, I am not under control. My rheumatologist didn't suggest anything about reducing my meds. or anything. I am going to have another talk with him as I like you am still having symtoms.

[Dekeboo in reply to jetttsd]

I think the best thing is to talk over your concerns with him, I took a notebook into my appointment and worked through my questions! When you are in that room it can be very easy to become overwhelmed and have your mind go blank.

[jetttsd in reply to Dekeboo]

Great idea. This is exactly what happened to me, I just didn't know what to say as I was so surprised my bloods were "Normal". I questioned myself thinking maybe I was imagining things.

[allanah]

I've really enjoyed the discussion above and it's been very helpful. I am just hoping my Rituximab works and how you know it's doing well!! My Rheumy has always treated me on blood and my pain scale do I find he's great to discuss how you feel about the pain too . X

[jetttsd in reply to allanah]

I am glad the discussion is helping you. I will talk to my rheumatologist again. If I feel like I'm just the numbers on the paper, I may have to find another one that will listen to me.

Good luck to you on Rituximab.

[allanah in reply to jetttsd]

Thanks, get dizzy spells if I stand up too quickly but the family think I am less " stiff!" Good newsi think! Tho I had to come of the mtx it was not suiting me at all...again!

[jetttsd in reply to allanah]

I was having trouble with the mtx pills, doing better with injections

[Hidden]

My rheumy left me to get on with it for ages and still does because he has too many patients and too little clinic time when he comes to visit my remote area. I've had to be really proactive - as Helix says this is a self-service disease for many of us!

He says it's important to treat the patient not their blood when I mention that my inflammatory markers are still high and I'm still not feeling well, fatigued and still in pain. But so far he's really only been interested in visibly swollen joints and ignores my bloods - which reflect pretty accurately how I feel. So I think that this mantra is just talk because if I didn't have a high ESR he would just tell me it was all in my head now - he treats neither the blood nor the patient in my case . But I am an awkward case because I've been very allergic to drugs so I will cut him a bit of slack on this front at least.

I've been off DMARDs for nearly a year now with a brief spell on a fourth one that gave me pancreatitis recently. He says that my RA is seronegative and non-erosive so we don't have to worry too much - but I've been very ill this year and it seems to be attacking my organs as much as my joints and blood vessels. I don't want to wait to sustain damage to my joints, nerves or organs while he drags his heels. So have just started steroids after two week long hospital stays.

I do keep pushing and never play things down with anyone anymore because I've learned the hard way that if they can ignore/ neglect me then they most certainly will! It is truly horrible having to learn to chair my own consultations, research options and almost exaggerate or learn to speak out in order to get help. I only hope I can get well enough for this to be useful to me one day soon as a new employment skill!

[jetttsd in reply to Hidden]

I am sorry to hear you are having so much trouble. I am thankful that I can take the MTX injections (although I do get a lot of fatigue and headaches. It seems I am not alone in feeling invisible sometimes. This last appointment I felt like I was disappointing the Dr. as he seemed to think from my bloods that I s/b in no discomfort.

I need to learn from those of you with more experience to take charge of my care. My grandmother and aunt both were sero-negative and ended up with severe joint damage and heart problems.

Good luck and I hope things improve for you.

[jetttsd]

It's been a couple of months, but I wanted to update anyone following this post. I saw a new Rheumatologist today. Just like several comments made here, he said that my RA was not controlled or in remission because I still had pain and other symptoms. He said we would know if I went into remission when I went for a period of time symptom free. He has added Enbrel to my Methotrexate, so I hope to have good luck with that.