Who else has rheumatoid arthritis?

Miscellaneous and Personal Stuff I Must Share
1

I was diagnosed with rheumatoid arthritis six months ago. It came out of the blue. I was an otherwise healthy 34-year-old woman and I woke up one day with pain in my feet. Within a month, the pain migrated to my wrists, shoulders and ankles. I went to my doctor and after blood tests, was diagnosed with RA.

I was not able to start on the main treatment for RA, a drug called methotrexate, because I was simultaneously diagnosed with an autoimmune liver disease, and methotrexate is hepatoxic. So I started on a small dose of prednisone. It didn’t help. Later I started on hydroxychlor (Plaquenil) and Enbrel (etanercept), which is a once-weekly injection. Enbrel is insanely expensive: $2,100 a month. I was able to get my first four months for free through the manufacturer’s assistance program, but that is running out, which necessitated me to get a more expensive health insurance plan. I am not sure what effect, if any, the Enbrel had, since I continued to have flares while on it.

Finally, after 6 months with RA, my liver doctor has given me the OK to start on methotrexate. I just filled my first prescription. One bad thing about methotrexate is that it is very dangerous for pregnant women (highly teratogenic), meaning basically that if I got pregnant, I would not remain pregnant for long, or would have a hideously malformed fetus. So I have to take extra special caution not to get pregnant. (In fact, methotrexate is an abortifacient used in the induction of medical abortions [the abortion pill.]) This sucks for me since I do plan on having children within the next 5 years, so according to my doc, when I did plan on becoming pregnant, I would have to stop the methotrexate for at least 3 months before trying.

The past 6 months with RA has been difficult. My biggest flares happen in my right ankle and right wrist. It is very painful. Some days I can barely walk, or walk with a pronounced limp, because of my ankle. When my wrist flares, I cannot do anything with my right hand (and I am right-handed). I cannot brush my hair or teeth; wipe myself; wash my hair; shift my car; unlock or open my front door; pull up my pants; etc. When my wrist flares, it gets very swollen, with a big hard lump.

RA is very hard to understand because the flare-ups come and go with no warning, and have no rhyme or reason to them. Some weeks I feel fine and have no pain; others I am flaring in 4 areas at once. I am hoping that with the methotrexate, I will be able to get some significant relief.

So, Dopers with RA, tell me your story. How old are you, when were you diagnosed, what medications are you taking, and how does it affect your life?

2

I was diagnosed with RA in 1987. It hit me like a freight train; diagnosed around Thanksgiving, could barely move by Christmas.

Ask your doc if you would be a good candidate for Humira. I was one of their guinea pigs for the trials. I’ve been on it for 10 years and it is a bloody miracle drug as far as I am concerned. It’s worked so well that my last three sets of lab work have indicated that I am in total remission.

I hope it works for you and I hope it works as well for you as it did for me.

3

I actually just got tested for RA. Luckily, my RF was well within the normal range.

Background - I have a heel spur on my right foot. I used to take a lot of ibuprofen. My doctor wanted to switch me to a prescription strength NSAID, and start doing some additional blood tests. I’ve found that I only respond to some NSAIDs…and get nothing from others.
The first thing he put me on didn’t do anything for me. Not only was my foot feeling worse, but I was having knee pains (not new…I have bad knees), wrist pains, shoulder pains…

I’ve since switched to Mobic, which seems to be helping some. But we did the tests for RA just to make sure.

Good luck with your journey.
-D/A

4

I just got diagnosed with it 6 months ago, too. It started with a baker cyst in my knee, then it went to my wrists and ankles. I knew there was a problem when the pain in my wrist would wake me up at night. It felt like someone was on the inside of my wrist, pulling all the nerves and tendons in. I just sat there in bed, cradling my hand and wincing.

My RF is negative, though. They say 1 in 3 people with RA are negative, and my CRP was high. They put me on methotrexate and I’m not sure how I feel about it. It sucks that I can’t drink (much) and I’m not sure it’s helping me.

I tried to get into a drug trial for CH-4051, a left-handed version of the successful 1504 by Chelsea Pharmaceuticals. It’s supposed to be an anti-folate that doesn’t metabolize, and thus isn’t hepatotoxic. I couldn’t qualiy because for some reason, my CRP dropped like a rock and I wasn’t sick enough for the trial.

You know what really helps? Exercise. I was achy and swollen even with the MTX and my NSAIDs but for some reason, I had some Army nostalgia and went running on the treadmill. The next day, presto! All my symptoms were gone! An orthopedist told me it was my “on-board steroids at work”. Apparently, the edorphins and other hormones from exercise are perfect for fighting RA. nyctea, I’m serious- you need to start working out. Go five times a week. Lift weights and run. Work whatever extremity it is that hurts. Tap into your body’s own natural pharmacy. It’s the true miracle drug.

5

That’s what I have heard. I’ve had mixed results so far. I’ve done some stints of swimming laps at the gym, which resulted in increased ankle and wrist pain in the days after. On the other hand, I will go walking, whether it be around the mall or on a trail, and while it sucks to be limping along awkwardly, it does seems to ease the pain a bit afterward.

I am sure I could be doing more. It’s been really hard to motivate myself on some days, especially due to my other two co-occurring diseases, the liver disease (which results in chronic fatigue) and depression.

6

Yikes. You’ve had a busy year. Stop doing that!!

7

I was diagnosed in 1995 with RA, and have since been diagnosed with fibromyalgia, Raynaud’s syndrome, and lymphoma. Apparently, people with RA have a much higher risk of developing lymphoma because of their malfunctioning immune systems. If you have RA, be alert.
I take Plaquenil (which is a malaria drug, actually) and 6 Vicodin a day. Ambien and Cymbalta (an anti-depressant) to sleep. Loads of ibuprofen and aspirin. It runs in cycles, but I notice it the most when the weather is changing or I’m under loads of stress.

8

Try adding an omega-3 fatty acid supplement (fish oil, or DHA eggs) in addition to your methotrexate and enbrel. Studies have shown that it helps.

9

I’ve never actually been tested and it’s entirely possible that I’m wrong but I think I have it in both ankles and both hips. At my last doctor visit (for a separate issue) I told him that I had pain and stiffness there most every morning and that it responds well to aspirin. He suggested some stretching/flexibility exercises that have helped and wants to check me out again in a couple of months.

10

I was diagnosed with RA when I was 24, so it’s been 12 years. In that time I’ve gone through a series of drugs, including one that caused retinal scarring, and one that’s off the market now.

I’m on the Enbrel/methotrexate combination right now, and I seem to do well on it. I don’t have pain normally, although there are days when I wake up and all my toes ache. Weirdest feeling.

I exercise more now than I did when I was diagnosed, and weigh 50 pounds less. That probably helps me a lot.

11

I’m waiting for test results. Right now, I’ve got 800 mg of ibuprofen in my system, and I’ve wrapped my wrists and knuckles up for compression and support. My shoulders and hips ache like all get out.

It seems to be connected to my gluten intolerance. Any gluten slips into my diet at all, and the joint pain is bad enough to keep me up at night. Right now, my knuckles and wrists are swollen, and I’ve got lumps beneath my thumb joint. I’ve already lost strength in my grip - opening bags and bottles, using scissors, and picking things up in a pincer grip have become much more difficult. I’ve even noticed it on little things like buttons.

What I wasn’t expecting was the fatigue. I feel like I’m fighting the flu every day. I wake up feeling normal, but by 10 a.m., I’m ready to crawl back into bed. I can’t keep up with work. I’m missing work all the time. Last month, my doc put me on a short course of prednisone for lung inflammation and -boom!- all the joint aches and fatigue resolved. I felt like myself for the first time in years. As soon as the course of prednisone was over, the aches came back, and the fatigue doubled.

And, on the few days I feel good, I try to get a lot done, and the next day, I crash. So, if exercise helps, it must be in smaller quantities than I get by cleaning a classroom. I lost around 45 pounds a year ago and kept it off. I have another 45 pounds to go. I just wish I had some assurance that it would work.

I’m already dealing with chronic depression, ADD, gluten intolerance, and a few other oddball diagnoses. My health insurance doesn’t cover prescription meds, and it only covers doctor visits up to $1000 a year. If the generic DMARCs don’t work, I will probably need to file for disability.

12

phouka I am so sorry for what you are going through! I know exactly what you mean about losing the strength in your hands. When my wrists flare, sometime I cannot button my pants, and can’t open a can of soda or a can of cat food. I can’t lift the jug of iced tea out of the fridge. What really sucks is that I have long hair and usually wear it in a ponytail, and when I am flaring, I can barely brush my hair, much less put it in a ponytail. Driving is also hard, you never realize how much you use your wrist to steer until it isn’t working.

During this journey since I was diagnosed, I have really begun to appreciate the serious lack of affordable and accessible health care here in the US. The new class of RA drugs, known as biologics (such as Enbrel, Remicade, etc.) are INSANELY expensive. Even if you do have prescription coverage, many plans do not cover it. I was able to get 3 months of Enbrel free through their Rx assistance program, but when that runs out, you are SOL. Enbrel’s cash price, WITH insurance coverage, is $2,100/month (4 syringes). If you have no insurance, it is several hundred dollars more than that.

It looks like methotrexate is more reasonable - on drugstore.com it is $31.00 for 30 pills. However, that’s pretty expensive if you are unemployed or under-employed.

phouka, please let us know how it goes, best of luck to you.

13

Diagonosed with it four years ago, at age 62. Got it later than many.

Was on oral meds(plaquenil and azulfadine) for two years. Stopped it cold. Then, came back with a vengence.

On Enbrel for two years. Lucky to have good medical insurance and the Enbrel support program.

The day I got my first shot, it stopped the pain cold in half an hour.

As I said, lucky.

It hits women twice as much as men.

14

I was diagnosed with RA almost 2 years ago at age 23. I was refractory to treatment with sulfasalazine alone and a sulfasalazine and methotrexate combination regimen. After that combination failed, my rheumatologist prescribed Enbrel in combination with methotrexate. Enbrel worked wonders for me. The disease had hit me pretty hard, pretty fast since I was first diagnosed. Before Enbrel, there were times when I walked with a severe limp and various joints would “lock” into place (such as my elbow or fingers.) I learned to guard certain joints and would dread getting out of bed or rising from a seated position. After starting on Enbrel, I noticed a dramatic change in swelling, pain, and mobility. However, at the beginning of 2010, I was no longer eligible to remain on my father’s health insurance plan because I had reached the end of my 24th year. I’m a student in the 3rd year of a doctor of pharmacy program; I also work 2 part-time paid internships (the combination of which does not add to 40 hours) to pay for living expenses. Because I’m not eligible for health insurance benefits from either of my internships, nor can I afford private insurance (that would cover a pre-existing condition and the cost of Enbrel), I was forced to give up Enbrel therapy. Not only can I not afford to pay the retail price of Enbrel, I can’t afford visits to my rheumatologist or monthly blood draws. Since then, I’ve been taking diclofenac daily to help with the inflammation and tramadol to help with the pain. However, the benefit from this has been minimal. For now, I’m waiting for either (1) the national healthcare bill to go into effect, (2) graduation in 18 months, or (3) a marriage proposal from someone with adequate healthcare coverage!

15

That is a truly tragic story. You should really try finding a way to get your Enbrel. RA will only worsen with time and the odds of you maintaining function diminish rapidly as you continue living without adequate treatment. Try calling the manufacturer to see if they have any programs for financial aid. Beyond that, I’m certain there are drug trials with other TNF blockers that you could get into. I wish you all the best.

16

nyctea scandiaca, thanks much for your sympathy. I think what’s most difficult is that it isn’t just me handling this. I moved in with my parents two years ago to help take care of my dad, and now all of a sudden, my own health is on a sudden decline. So not only am I dealing with the frustrations of “what the hell is this” and “people, I have THINGS to get DONE, I don’t have time for this!” Now, my dad is worried about me, and my mom is terrified about the financial implications.

sigh

From the reading I’ve done, methotrexate looks like the first big medication they try. I know it’s been around for a long time, and it’s used for everything from psoriasis to chemotherapy. My mom, however, is very skittish about it. She’s an RN, so she knows stuff, and she mentioned there’s a lifetime limit on how much methotrexate a person can take. I can’t find anything about that. Does anyone know anything about such a thing? I could see it for my dad - he had a really bad skin condition a while back and was on it, but he also really likes his chardonnay. The literature makes it clear that mixing methotrexate and alcohol is a bad idea. But other than that?

And I’m still waiting to hear back from my doc, who has called the lab to ask for the test results to be faxed over . . .

17

When I got diagnosed, my doc wanted me on methotrexate. He asked me if I drank, I said yes. He said “no sense in trying to change you” and put me on oral medication(sulfasalazine and plaquenil) which, thankfully, worked.

18

I might. My elbows and fingers hurt like a bitch most all the time. I don’t do “the doctor thing” so I guess I won’t know for sure.

Ain’t nothin’ a day of skiing and a couple of beers by the fire won’t cure!

19

This is a PERFECT example of what is wrong with our healthcare system. RA is a progressive debilitating disease. By going off your therapy, it is going to cost more down the road, and may disable you and prevent you from being a fully productive citizen. It is disgusting that a young, working student like you is forced to go off your medication for a chronic disabling disease because of the sorry state of our “healthcare system.”

I know that Enbrel and other biologics used to treat RA are more complicated to produce than regular pharmaceuticals, but DAMN, are those four tiny vials of liquid really worth more than $2,100 a month? And yes there is an assistance program but it does not last forever, so the benefit to mariecal would be temporary.

Sigh, this is so depressing and outrageous. Treatment is accessible to the wealthy only and the pharmaceutical companies are getting richer because of their patent control over these biologic medications.

I am extremely fortunate that my parents have the means to be able to pay for my individual health insurance coverage. Without this support, I would be uninsured and left to suffer like mariecal.

20

My father has it – came down with it when he was much older than you. It got to be really bad, then Enbrel cam out and he’s been on Enbrel ever since with no pain and no symptoms. Before Enbrel he could hardly move around.

Prior to Enbrel he was on methotrexate but eventually he was almost incapacitated. Now he’s fine.