I think you've given MTX a fair chance and it's time to get aggressive treatment. By that I mean adding a biologic to your treatment arsenal. This could be a game changer for you. Consider Enbrel or Humira with your rheumatologist.

It is a rheumatologist who is treating you, right? If not, you need to find one immediately. This is not a disease to be treated by any other kind of doctor.

Lab tests are funny. I've had this disease for over 20 years. In all that time I've had bloodwork over 100 times. No kidding. And in all that time, never once has my RF been abnormal [I have sero-negative RA]. My ESR [Sed Rate] has never been abnormal. The ONLY thing that's ever been abnormal is my CRP [which is not exclusive for RA].

The mere fact that you're not feeling better should be ammunition enough to march on to a higher level of drugs. Don't hesitate. And if your rheumatologist doesn't agree, then time to start shopping for a new one.

Thank you so much for the feedback.

Yep I am seeing a rheumatologist, I have recently moved to a new city, so next week will be my second visit to her. I remember in the last consult her mentioning something about biological treatment, so I think its time I bring this up, and maybe start asking different questions about my illness.

My CRP was also abnormal, and also the Anti CCP test result was very high. so the aim apparently is to reduce the inflammation, therefore reducing the pain, and I sure hope resulting in reducing fatigue. The most annoying, frustrating thing of all!!

The honest answer is that you can't tell if the meds are working........if you only look at one day's worth of data. You really have to track this over time.

One of the most frustrating things about this disease is that the disease AND the meds can cause some of the same symptoms. I told my doctor I'm tired. Well, she said, RA makes you tired. And so does the medication you're taking.

Well, isn't that just great.

On another visit, I told the doctor I'm feeling pretty good. Well, she said, RA sometimes just kind of backs off for awhile (clarification: she did NOT mean it just heals itself, just that it can be inconsistent). Or, she added, the meds might be working.

Once again - isn't that great. Because in both cases, it's impossible to tell what the cause of the improvement / worsening actually is.

When I asked my doctor about that, she said "Whenever I'm asked that question, I sort of wish I'd chosen another specialty, because the uncertainty and confusion is the worst thing about this disease." It's also, she told me later, why she chose the specialty, because she likes the challenge. But she's still frustrated when she has to explain all the vagaries of it to a patient.

Track everything in a daily journal. Don't obsess over it - write it down once or perhaps twice a day, and then try to get on with your life as best as you can. Include any other relevant information (if you walked a lot more than usual, or the weather was unusual, or there was some other stressor in your life.) That will help you weed out the outliers. Over time, you'll see a pattern that will help you know - as best as any of us can - that you're on the right track with your meds.

wow, thanks so much for that transparency. That's sometimes what frustrates me most about RA, is how contradictory it can be!

I actually started a journal on Sunday...after a little bit f an emotional outburst as a result of bottling up some feelings about the RA. And this is what has prompted me to make some mental changes about the disease.

I do sometimes get nervous about going to the Rheum because I feel that all they can do is just up meds more and more and I honestly would rather not.....but its either that or suffer - especially in the long run!

I'm hoping the journal will help me to firstly stop bottling up thoughts and feelings, and also to help me notice patterns and triggers for the bad days.

Its just daunting to think that for at least 2 days every week I am going to feel completely horrid (coz of the meds) and that's aside from the other anticipated bad days that are unavoidable. That thought alone gives me anxiety, hence my "episode" on Sunday.

But I think being on here and starting that journal is going to go a long way in helping me understand more about my illness/disease

The reality is that when the correct drug cocktail is found for you, the inflammation will go down and so will the pain. The lethargy in most cases will also subside....maybe not go away entirely.

I take low dose MTX and Humira. I'm geriatric age so who knows if the mild lethargy is from the low dose MTX, age, or the cold I still have?

Which would you rather:
1. Two days of mild lethargy, or
2. Being in a wheelchair

The answer is obvious.

But here's the good thing: mild lethargy can be "overcome." If you pace yourself so that you expend less energy on the "lethargy days" then you'll likely not find any disruption to acitivities of daily living.

Know this: in the 20+ years of RA, even at its worse, I never felt the need to take a day off from work. I have decided not to go to social engagements on occasion.

Just think of this year as a "knowledge base." You're going to learn a lot about what your body can and can't do and you're going to find ways to work around that if you need to.

Positive thinkers seem to get positive results.

The doc told me what works for some people does not work for the others. Usually 2-3 medications combined work. Did you try Enbrel or Humira. I was scared a lot but I think both those medications are great. I believe Humira trained my immune system to back off on attacking my joints. My blood tests show complete remission. Also exercising helps a lot. When I stop working out RA start creeping on me again. Find supplements for joint health. They do work and help.

Your blood work will show remission and you feel great. There are no swelling or pain. It means meds work.

@skybluejet28

What test, specifically, will show remission?

MTX alone helps a little for me, biologic alone helps a little but in combination they are a game changer! Remission........haven't had that pleasure as of yet but pain is not all encompassing as it was previously.

I will speak to my Dr about Humira tomorrow...It seems I need a new cocktail to actually feel something. I think the blood results will also give me a better indication. I am currently only on MTX, Folic Acid, Calciferol and Anti Inflams when needed.

Has anyone tried the Paddison Program? its a plant based diet and apparently removing meat and dairy from the diet does wonders....

Anyone benefits from a balanced diet......generally speaking.

Diets do NOTHING to help RA or arrest the destruction.

Just eat a balanced diet and lose any excess weight.

you can't order up your own biologics - it really is up to the rheumatologist and yourself when you talk, your insurance (some of the insurance companies require a certain trial of a particular duration or trying more than one dmard). You are young - don't listen to us - listen to your rheumatologist. if you listen to our pace you'll run through every dmard and biologic before you hit 30 (that was a joke)

Humira is not always the first one on the suggest block, though it could be. um let's see the rheumatologist can do a joint exam, take MRI's of a joint to get a baseline, or you can track your blood tests over the decades (the marker tests). and you can go by your function. are you working and / or in school? A lot of folks get joy out of their particular diet - (I was vegan for over 6 years and bored everyone on here about it). It made me happy and it gave me rock bottom cholesterol. do whatever makes you happy. the disease sucks. if something else you can put in your control and it makes you feel like you are affecting something, anything, than why not. I love dairy but I swear for me it causes more swelling not less, but I still love it. and no amount of almond milk is probably ever going to change that. i don't care if it is freakin' organic almond milk that I put through my own cheese cloth (laughing). are you feeling any better?

depot

Dr has decided to put me on plasmaquine a long with the mtx. starting it today and will be on for 6 weeks to see for any changes if not then will introduce something new as well. In the mean time just trying to do as much swimming as I can and maintain a decent diet to make myself feel a bit better mentally and physically

good luck with your new med(s) and in the pool - that sounds really n i c e - I am looking out at the frost on the top of the elephant cover on the pool (laughing). do you use the hot water pool after the laps?

depot

Thank you :-) Its been good so far! My muscles aren't used to that sort of work out, so I'm feeling it :-D Its Summer in South Africa, so a cool pool is like a dream at this stage. But otherwise at gym the pool is a bit warmer which is also nice! I haven't taken a jump in the hot water pool after laps. would you suggest it? I was worried the heat my make me feel a little swollen