So that we understand: have you seen a rheumatologist yet? How was the diagnosis made [on the basis of specific tests]?

I’m asking because, in the absence of other information, it could be Psoriatic Arthritis [which is treated the same way as RA]. You mentioned sausage shaped digits….very common with PsA.
I understand how confusing it is, especially when you’re contending with menopause. It’s hard to decipher the cause of each ache and pain. My suggestion to you is to disregard menopause for the moment and assume that it’s all immune arthritis. Having gone through it, I promise you, the fatigue is definitely the arthritis, as is the inflammation. When you have RA, menopause [at least MY experience] is NOTHING compared to the RA or PsA. [And by the way: I have both RA and PsA and was diagnosed about 5 years before I went through menopause.]

Waking up in the middle of the night with overall hot sweats….ok….that is menopause. But if you’re waking up because the bed’s hot and you’re not sweating all over, that’s most likely the joint inflammation, which CAN warm up a cold bed.

Having been on forums like this for a long time I’ve noticed that people with autoimmune arthritis have a tendency to NOT complain about their aches and pains when in the rheumatologist’s office. They tend to downplay it. That’s the wrong this to do. You will NOT sound like a hypochondriac in the doctor’s office, because they know that people with RA hurt all over. They need to know just how much and how and for how long, as this info helps them gauge whether the drug is efficient or not. Saying, “Oh, it’s fine” is the wrong thing to do.

You mentioned a marathon and farming. You’re an active person. And for that reason I would push like the dickens to get the disease treated aggressively [which is the current thinking]. By that I mean a combination of MTX or Plaquenil PLUS a biologic like Enbrel or Humira. If something isn’t working after a good try, then get the dose adjusted or try a different drug.

The big question: how will you balance your life? First, start by knowing that the first year is the hardest. But with aggressive treatment to halt the progress of the disease, you may not need to change very much. Most people do find that they become fatigued easily and that’s part of the disease. So it’s up to you to pace yourself. In my case I do high energy [for me] things on one day, then very low energy things the next. Never two days in a row. You’re going to become an excellent time manager [though I sense you already are].

Others will have their own experiences and will chime in. Just remember: it’s not the end of the world and there’s a lot of success with the modern drugs. And let’s kill the notion of vitamins curing the disease. It’s all hogwash.

Lynn

Thanks for your response, Lynn. I have seen a rheumatologist, who ran more extensive bloodwork than my family doctor had done a few weeks earlier. In both cases, my SED rate was low, but the ANA titer pointed towards RA....maybe. The rheumatologist does not want to say definitively yet, and has mentioned that PsA cannot be ruled out. (The wrong knuckles, apparently, are swollen, for this to be a classic presentation of RA.) Thus, I have an appointment with a dermatologist later this week. There is nothing obvious in terms of this affecting my skin, but the thought is that the dermatologist may be more observant.

I appreciate the insights into menopause vs. RA issues. I've never experienced night sweats at all. I have noticed a sense of heat, an overall flushed feeling, when I'm stressed (positive or negative stress). I'm also a musician, and when I'm at rehearsals or performing I'm starting to notice it happening, and it's definitely not a case of nerves, I've been on stages for decades. It's almost like it's connected to the adrenaline rush.

I think my head is in a fairly good place overall. I'm not quick to see a doctor, but because of the specifics of performance (I play French horn), I wasn't going to mess around with anything that was affecting my fingers. My family doctor and the rheumatologist both said that this had been caught extremely early. Other than being a bit overweight, I'm in excellent health. In a weird way, that's actually presented me with one of the biggest challenges of this new journey: at 57, I still hadn't quite begun to think of my body as fallible, and I have to admit I feel a bit betrayed by it. Still coming to terms with that part of it, but I recognize that I'm only two months into the journey and this is a big adjustment for me.

I am assuming that the dermatologist may have some helpful insights, and when I see the rheumatologist in four weeks, either the Plaquenil will have kicked in, or we'll try something else. everything I read indicates that the Plaquenil (and many of the other drugs) take some time to be effective; is that your experience as well?

You need to be extremely pro-active with your RA. I am also a musician (flute) and in the last year I have started to have terrible finger deformities after a major med failure, and not being able to find something that works. Before that, lots of trigger fingers, probably from playing flute like the R4. I have to wear a splint full time on that finger, especially when I am playing.

Plaquenil is very mild, so please move onto mthx if you are not getting a response. Don't let him push you to wait till 6 months, as was done to me. And if you feel sick from mthx, just keep on with it, it can and does get better.

I had menopause start about 4 or 5 years into RA. It was distinctly different, as Lynn says. There was no doubt about the hot flashes being distinct from RA. But instead of stopping have periods, I started having one big continuous one! I became so anemic I almost died. In the end, I identified mthx as the culprit. But my rheumatologist knew nothing about the effect of mthx on menopause, and my gynecologist knew nothing about RA including the drugs.

In the end, I went on Provera for two years and it dried me up for good. Just something to keep in mind (just in case!)

Thank you, Marlene. It helps to hear from another musician. At least with my horn I've only got to keep a few fingers going, and I don't have frequent trills! You've got a real challenge with flute. I've been photographing my hands every week so I have some data, and I'm seeing some changes. So I'm going to ask for a more aggressive approach when I go back to the rheumatologist.

Tell me, how long is a typical flare? Obviously everyone's experience is different, but can a flare be just a few hours, or is it generally days / weeks?

Flares - so different for everyone. But here's the thing: if you're in drug-controlled remission like I am [Methotrexate and Humira] you generally won't have them unless the medication is no longer working as it should [dose adjustment needed] OR you've overdone it with pushing the physical activity [e.g., I moved earlier this year and packed all my personal things, letting the movers handle everything else.....and still that added activity caused me to have a short term flare].

Since you're a musician, which is obviously important to you, I want to give you a short term/quick fix back up plan. You could get an injection of long-lasting cortisone [Kenalong] in the hand. This will do NOTHING to stop the disease. But it will help the inflammation to go down. You really have to gauge what's right for you. But you should know a couple things about these shots: no more than 2 a year, they could rupture tendons, and they absolutely should be given by an orthopedic surgeon who specializes in sports medicine [believe me, it's a painful shot if given by someone without this kind of experience].

Now about the dermatologist. Why? I'm going to take a stab at this.

I SUSPECT that your rheumatologist might think it's PsA and thinks that a dermatologist will be able to tell if it is. Nope. Not in my experience. About 1 in 5 people [like me] who have PsA have never had psoriasis [skin disease]. But take a look at your fingernails. Do you have some ridges that run the length of the nail, in the same direction as the finger itself? This could be an indicator of PsA. [And technically, since the fingernail is skin, Psoriasis.]

I really like your attitude. You're on a fact-finding mission, which is exactly where you should be. You're working with a rheumatologist. You're thinking in terms of how to get around certain changes. It's all good. You're on top of it. You'll do well, is my gut feeling.