I’ve not yet been officially diagnosed because I can’t afford the tests, but I have a lot of the symptoms. (I’m 25, female)
I’m not looking for advice, but your personal experiences with RA, treatments and your reactions… etc.
Not much to offer, but my 72-year-old mother was diagnosed with it back in the mid-70s. She had one or two knuckles replaced about 6 years ago, but she manages. Despite the fact that her hands are gnarled and twisted, she doesn’t let it stop her. She’s been one tough gal.
I am not a doctor/rheumatologist/etc.
My sister has another form of arthritis, known as ankylosing spondylitis. Since you say that there is no official diagnosis of RA, perhaps you should have your doctor consider AS as well, simply because it is more likely to develop in younger people than RA (although many children and adults can get RA as well).
What joints are causing you problems? The thing to consider (though I know you said you can’ t afford the tests) is that the two diseases have different treatment plans - as I understand them, at least. In joints affected with RA, it seems that more motion/use of them tends to degrade them more, while with AS, you are better off using your joints to prevent them from fusing (the ankylosing part of it). Also, medical treatment is different, at least to some extent. If you can manage on OTC NSAIDs to relieve your pain, then that’ s good, but it they aren’t doing the trick, you will need a prescription for other drugs.
The thing with pretty much every form of arthritis is that there is no cure, only pain management and reduction of inflammation. NSAIDs (like tylenol and ibuprofen), COX-2 inhibitors (Vioxx, Celebrex, etc) are the most common drug types used AFAIK, but if those fail, you might have to go to more aggressive treatment plans. My sister’s AS is very bad, it is affecting her entire body. It began in her legs, and has progressed over the past 6 years to her back, shoulders, arms, hands and neck. To give you an example, at the moment she has put off taking her driving test (shes 20, btw) because she cannot turn her head enough to check blind spots. I’m not saying you have the potential to get that bad, but the sooner you can manage to get treatment, the better, IMHO. (They are starting a new treatment plan this week, with the possibility of getting her into a clinical trial via the USA for Enbrel sometime this summer).
I really suggest you make every effort you can to get a diagnosis and a treatment plan started for you. Arthritis doesn’t go away, but you can live a very healthy and active life with it.
I know this is a bit of a jumbled post - sorry for that. If you have any questions, feel free to ask me. I can share my POV of my sister’s experience, and get more information if you want me to.
A good starting point is www.arthritis.org . I got (and get!) a lot of information from there when learning about my sister’s disease.
I have polyarteris nodosa in my left ankle, along with what my rhumetologist calls “a touch of rhumatoid arthritis.” For lack of anything better, they are treating it as RA, which seems to be working. I take 7.5mg of Methotrexate (a chemotherapy drug) one day a week, as well as an anti inflammatory (diclofanac) twice a day. I am able to hike, dance, snowboard and basically function as usual, where before I could barely walk.
The downside to the treatment is that Methotrexate can damage your liver, so I have to have frequent blood tests to keep an eye on things. It also made me quite nauseated in the beginning, I threw up quite a lot. It doesn’t bother me quite so much now, and I have a prescription for anti nausea meds if it does bother me.
Good luck to you, I hope you figure out a way to get the treatment you need!
This gives me hope, and makes me cry. My mom has RA. It’s so bad. I hate to see her suffer. She has to work to have health insurance, but has a hard time at work. Her work is very physical. Sometimes she cries on her way to work as her body hurts so bad.
Last year she got in on a trial drug, but it didn’t do anything for her but damage her liver more than it was. Right now she is doing some kind of injection every other week. The copay for 2 shots is $635. Yep I said TWO shots.
I see how much pain she is in, and it sucks. I hope that a better medicine is out there.
Film Geek I do hope that you have a chance to get into the doctor and have the tests done. The earlier you find out, the sooner you can seek treatment.
I agree with everything mnemosyne said in her post. My sister also has a very aggressive form of RA. She has tried various different treatments but the only thing which has worked for her is Enbrel which she has been on now for many years. It is the only drug which has stopped the deformity. She is at the moment having surgery to correct her feet which were horribly deformed.
You say you can’t afford medical treatment but I think the sooner you get a definite dx and treatment plan the better. RA deformity can be crippling and cannot be reversed.
Getting into the empotional side of it…Sis has been having a flareup lately.
My sister is in a bad way too, as I mentioned, not even being able to drive because she can’t check her blind spots. She has trouble gripping the steering wheel sometimes, too. She is a university student, and still lives at home, but more and more she is discovering that she can’t even take a normal workload -her body just cannot handle the stress. Her teachers are very supportive (she goes to a very small university, so they are more flexible than most) and have either let her not complete certain assignments, or have extended her deadlines until after final exams. She has medical arrangements to have her final exams spaced 4 days apart, because the physical difficulties in doing ANYTHING are overwhelming and tiring for her. Due to the inflammation she is anemic, but dietary corrections can’t help. She is simply exhausted. She will not be working this summer, and will spend the time taking care of herself and recovering. She’ll never again take a full courseload of classes, she just can’t. I can only guess what she’ll be able to do for a living - maybe teach. She likes that, and would be a hilarious but good teacher.
Her joints are hurting her more than ever, it seems. Only in the past few months has it begun to affect her shoulders, neck and hands, and so there is a new adjustment and correction period to take it into account. Some days, she can’t get out of bed, or off the couch (our couches are deep) without someone to help hold her up. Some days, she can’t write her notes - my mom bought her a tape recorder for her classes. She tells my mom - “I wish I could have ONE day…just ONE, without pain…I don’t know what it’s like not to hurt”. It’s absolutely heart breaking. I live 800km away, and I feel there is really nothing I can do, but talk to her occasionally.
For treatment, she has physiotherapy three times a week. She sees a counsellor at school twice a week, to help her manage her time (something she’s never been good at, but is more important now). For the past several years she has been on a combination of Vioxx and Tylenol for her pain, but both are losing their effectiveness. She has added Methotrexate to her regimen (thats a LOT of pills!) along with folate tablets, and while her bi-weekly bloodwork shows that levels are being affected as they should by that drug, there is no pain relief. She has just started the bi-weekly IV injections (I don’t know if she still takes Methotrexate with it), and they will see over the next couple of months what that will do. The next step is Enbrel, which is not covered by provincial health insurance, and will cost my father’s private insurance something in the range of $25 000 a year - at least until it becomes available in Canada. I hope it works, and I hope the TPD approves it soon! By all accounts, it’s amazing in the patients that it works for.
Despite this depressing and sobering post, and the moments of depression and sadness and frustration felt by all of us, particularly my sister, let me tell you more about her other than her disease.
She is a second year university student, double majoring in the bizarre combination of Biology and Drama. Her average is in the range of 90%, and lately, she is frustrated because she knows she can do better. She is incredibly smart, though somewhat naïve in the real world (part of her summer plans are to become well-rounded and to actually learn things other than classroom stuff!) She is funny, cracking out sarcastic comments here and there, or creating voice characters to imitate people, or simply because its funnier to talk about her school work in a frog voice, for example. She gets very happy and excited over anything, which is good, because it keeps her balanced!
She is actively involved in theatre, mainly as part of her major - one play a session is more than enough for ANYBODY! I wouldn’t be surprised if she takes on a role in community theatre this summer. She loves stage directing as well as acting, particularly because it IS a challenge for her. She’s been in theatre since early high school, and while it isn’t something she’ll do for a living, I can’t imagine it NOT being a part of her life forever.
She is an animal lover. We have 2 cats, a dog and a fish at home, and if it were up to her, she’d have more! That dog is her backbone - he gets her up in the mornings (well, as long as he’s not sleeping under the blankets beside her!) and gets her out for walks and generally can always make her happy.
She has been dating the same wonderful man (boy? -they are only 20!) for the past 5 years, and this past December they got engaged. He would do ANYTHING for her, and does! Example: in a bio lab covering blood, she was unable to use her own blood because she has trouble with needles (yes, despite all her health care!). So she calls him in, as he happened to be nearby, and HE gave blood for HER lab! Anyways, they are very happy together, and I wish them all the best.
As a family, I suppose we are all very strong and supportive, and we all do what we can to help her. Looking at my sister, I have never been more glad for universal health insurance (except, perhaps, for when my best friend had leukemia) because I know how expensive this treatment is. My parents support her 100% financially, and we are lucky that they can. Her fiancé, I’m sure, will have a good job. He’s good at what he does, and has connections that I’m sure will be helpful!
I don’t know that this was that encouraging a post. The various forms of arthritis can be devastating, but even when things are difficult, there are ways to get by, and happy moments show up every day. My mom calls them “les petit bonheurs!”, the little joys. A good family and friend base helps a lot.But so does medical treatment…again, I hope you can find out for sure what your condition is, and I hope you can afford to take care of it! I suppose we are lucky, since these diseases are ones that ARE studied, and, like cancer, a cure can arrive any day now!
another rambling post by me, but this is a lot of stuf that’s been on my mind the past few days anyways, and it’s good to write it out… I’m going to post it anyways, now that it’s writen.
From your descriptions, I may not have RA… I should go get tested. Anyone got $250 I can have? 
You should go get thoroughly tested, it could be some form of arthritis, or even fibromyalgia, which from my limited understanding can mimic rheumatoid arthritis. (sp?) Here’s a website with reliable (AFAIK) information on arthritis. Arthritis Foundation Here is the main page for that site default. Good luck, I’ve got JRA myself. (Juvenile Rheumatoid Arthritis)