I just tested positive for RA. I'm only 25, and my job as a computer hardware technician relies heavily on fine motor skills and use of my hands. I have been very rapidly losing the use of my hands over the last few weeks, and I'm not likely to be able to perform my current job much longer. At my age and level of experience, it will be difficult for me to find new work that I am able to perform. I make very little money as it is, and I don't know how I'm going to go about finding the treatment and support that I need--I do not have disability insurance. Is there anything I can do, or is my working life basically over now?
I've had RA since age 5. Your working life is definitely not over - with proper treatment from a rheumatologist, there's no reason to assume you're headed for disability. You are young and I believe you can more easily change career direction than someone like me, in their 50s. Truly, there's no reason to despair!
Compression gloves will help with pain and swelling, by keeping your hands warm and gently pressing out some of the fluid that's making them feel like sausages. I use IMAK, but there are many brands out there to try. Prednisone, while it shouldn't be relied upon as your mainstay medication, is generic an cheap, and can give you relief for pain and swelling and keep you functional while you search for the right combination of RA meds for you. It's different for each person so it may take some time to hit on the right cocktail. If you aren't taking an anti-inflammatory pain reliever (many new patients are unaccustomed to and reluctant to take pills of any kind), start taking one and take it as directed, don't skip doses. It needs to build up in your system and stay there to be effective.
Many of the first-line prescription meds are generic now, so they aren't as expensive. For the newer drugs, pretty much every manufacturer offers a patient assistance program that may get you what you need at greatly reduced cost, or even free. Also check with your local health department for state assistance programs.
If it comes down to it - and it may not - your state's bureau of vocational rehabilitation may be helpful for you to get retraining in another field. Through them I got some grants that helped me pay for college. A medical social worker can help you with this.
My hands used to be very, very bad but now that I'm on a good cocktail of meds, I have very little pain and type easy on the computer, which is good because I do all my work on it. :) In fact, the RA left my hands a bit undersized so sometimes it's easier for me to perform routine maintenance on my machines innards. :)
Check out the web site for the Arthritis Foundation, also google a site called CreakyJoints. You'll find all kinds of help and encouragement there. CreakyJoints was started by a young man with Ankylosing Spondylitis, a cousin of RA, while he was in college. I think he's about your age now. :)
Hang in there, and let me know if i can answer any questions for you.
Thank you very much for your reply. I do have a few questions regarding treatment options... first off though, is there a good OTC option to keep the pain and swelling under control until I can get treated properly? I've been taking a combination of both acetaminophen and naproxen so far, but even with a maximum dose of each at the same time, it's difficult to say if it's really helping at all.
Secondly, when I'm looking for long-term treatment options, would it be a good idea to go with the more potent options right off the bat, in order to delay long-term damage as long as possible, or should I be starting with only the basic treatment of symptoms?
Finally, do you have any more specific advice for getting help I need to afford said treatment options?
Did you know you can rotate the acetaminophen and naproxen every two hours? Take the aceto, then two hours later take the naproxen, and keep leap-frogging doses. IMO aceto alone doesn't work that well for joint pain - it's better for headaches. However, you might try substituting something like Exedrine Migraine formula, which is a combination of aceto, aspirin and caffeine. Many prescription NSAIDs used for arthritis often contain caffeine.
You might try leapfrogging ibuprofen and enteric-coated aspirin (or the migraine formula). Try different combinations, being careful not to go over the recommended daily dose. (Having said that, my sister in law sometimes doubles up the ibuprofen for a migraine, just don't do it a lot!)
The idea of the leapfrogging is to keep the medication at a steady level in your bloodstream. It's more effective that way. It's easier to control pain when you stay on top of it - once it gets away from you, it's harder to get it back under control.
As for treatment options, remember that YOU are your own best patient advocate. Read, research, inform yourself and if you feel like your rheumatologist isn't being aggressive enough, isn't listening to you, or isn't explaining things so you can understand what's his her her reasoning behind the treatment strategy, go with your gut and find another one. Having said that, it routinely takes many weeks or months to figure out if a certain medication is going to work for you or not, so it can be frustrating.
The benefits of not going for the "big guns" right away are
- the "older" drugs have a longer track record, so their safety, side effects and chances of being effective are well-known
- they're usually generic and cheaper, so if something like chloroquinone and/or methotrexate do the job, all the better.
- I've been on methotrexate for decades and it's been my mainstay. Only recently did I add a "big gun", Enbrel, to the methotexate as an experiment to see if it would stop my occasional flare-ups. It has! So I'm pretty stable right now.
Your rheumatologist will be able to give you better advice on what treatment route to go - aggressive or not - once he or she has run some additional tests, done a full work-up and history, and taken x-rays. If he determines you have a more aggressive form of the disease and your joints are at risk, my guess is he'll pull out the big guns sooner. There's no way to know until you're seen.
Do you have health insurance right now through your job, or are you a contractor? At your age, my guess is if you have it, you haven't used it much. (I have a daughter your age, I know! [smile]) If there's a human resources person at your job, talk with them about what services are available to you. You may qualify for one free physical a year.
If you don't have insurance, pick up the phone and start making calls.
- County Health Department
- area hospitals
Ask them about how to find and meet with a medical social worker who can hook you up with free/reduced cost care. As I said, drug manufacturers have patient assistance programs, some of which you may qualify for even if you have insurance. Enbrel has a co-pay assistance program which I signed up for.
Lastly, I know this doesn't sound like it, but you're lucky - you have a firm diagnosis of RA. A lot of people are what they call "sero-negative", which means they have all the symptoms but nothing shows in the bloodwork. Blood tests are only one tool, but it's easier to get treatment (and not wonder if it's all in your head!) if you have that positive result on paper. Having said that, don't be too shocked if your rheumie repeats the test and it's negative! It happens more often than you'd think. Ignore it and insist to continue treatment for RA.
Speaking of paper, start now asking for copies of all your blood test results, x-rays, mri's, etc. and keep it all organized in a folder. Always keep an up to date list of every medication (Rx and otc), supplement, herbal, what you're allergic to. I wish I'd done this - we've moved so many times and I've had so many doctors, it sure would have made things simpler! :)
Thanks again! I did see a rheumatologist, but additional testing showed my RA diagnosis wasn't as firm as I thought! my R Factor is still a low to mid positive, but all other tests are negative. My doctor recommended I see a neurologist instead to see about carpal tunnel or other nerve damage. I saw an occupational therapist as well, but was wholly unimpressed, as her favorite advice was just to agree with the suggestions I made. I got some diclofenac, but the dosing interval is longer than the effect, so I may go back to the naproxen and tylenol in alternation, which seemed to work well.
I lost my job last Wednesday after I was unable to work the full 11-hour shift as required. I now have a lot of free time to rest my hands, which is definitely helping.
I'm still skeptical that RA isn't at least partially at fault, considering the pain and weakness in my knees and feet, and my continued difficulty sleeping at night, but if CT is the primary issue with my hands, treating that could give my symptoms chance to change for a more solid diagnosis.
I was going over your post, I hope you don't mind. I will be 35 beginning of next year. I was diagnosed with RA after my second child, I was about 25 then. I was seeing a Rhuematologist that could not figure out what was wrong with me, even with RA running in my family for a couple of years. It got to the point that I could almost not get outta bed in the mornings. My RA factor has never been positive till this day. Anyways I am fortunate to work with physicians so they referred me to a new Rhuematologist she did such a work up on me & explained this in such a manner that I could understand. I am doing fine today although most of my problems are in my hands I still manage to deal with my job & life everyday. Using my hands for everything. Sometimes simple things like opening a pill bottle can be a task, but I find ways around it. I do alot of typing in a day & writing which is the hardest thing I do for me.. Today I am on Enbrel & Methotrexate between the two I'm still trucking along. I guess its always good to have a second opionon, just to play it safe, physicians don't always agree, and some are much better than others. Thanks Carrie
hi i just read your reply to someone and i wanted to know if you could advise me i was told i had RA when i had my last child 20 years ago they have tried many drugs im on retuxemab and methetrexate at the moment but what i wanted to know is my rhuematologist has put me on 20mg per week 8 tablets they make me awfully sick and wondered are you on a high dose and if you get side effects i am allso waiting for a shoulder replacement through the RA and im really scared take care pengi07.
I am a lady and my age is 23 years and i am suffering from arthritis. I want to tell you that last year I did some educational course which needed exhaustive writing work . I used to write almost seven to eight hours. I also was required to stand for three to four hours in the college hours.Nut shell I was not able to get appropriate rest.So I am very much scared about it. Can I ever recover from the disease. How can I recover from it. Any diet specific requirement . Please assist me.
Unfortunately there is no cure for autoimmune arthritis, however there are a wide variety of medications available to help manage the disease and maybe even get it into remission. If your current treatment plan isn't adequate, don't be afraid to insist on trying something else. My one word of caution is not to let them just give you prednisone - it can seem like a miracle drug but the long term side effects can be severe. It's all right to use as a tool to get you through until the more effective drugs kick in, but not by itself.
As for diet, there is no official arthritis diet, however it won't hurt to try different things to see if certain foods make you feel worse. There is such a thing called an "anti-inflammatory diet" but I hadn't tried it. Also, I have heard that some patients feel better by eliminating foods that contain wheat gluten.
Pengi, I'm sorry I didn't see your reply until now. I'm also on 20 mg of methotrexate, though I take it by self-administered injection. The pills also made me sick if I took them on an empty stomach. As long as I took it with food, I was fine though I did have some fatigue. Everyone is different, though, so if the pills are making you really sick, ask to switch to the injections, which bypass your digestive system. They are really easy to do yourself and are almost painless. Hope this helps!
thanks carolnivey for your reply. i would like to add that since childhood i have been facing acute pains in joints. although you said there no permanent cure for autoimmune arthritis , but i hoe there might be some ways by which i will be able to reduce the pain i face , as it is affecting my personal and professional life badly. i would also ask is it due to any malnutrition .
Anything that causes stress on the body and/or triggers the immune system - an infection, emotional stress, nutritional issues - can cause the immune system to go haywire and start attacking its own healthy tissues. No one has yet figured out how and why this happens in some people but not in others. At any rate, proper nutrition is extremely important for autoimmune patients, as we are prone to certain deficiencies, in particular the B vitamins and D. If you're taking a medication called methotrexate (aka Rheumatrex) it, by design, causes a folic acid deficiency so supplementation is critical. Thyroid problems and auto-immune disorders also commonly occur together, so if you have a real problem either keeping weight on or keeping it off, it's a good idea to be tested for thyroid antibodies.
Blood tests can help determine where your nutritional challenges lie. Sometimes it just takes a lot of experimentation to figure out what affects you I've found that the small amount of milk I was putting in my coffee in the morning caused a huge energy crash a couple hours later. I've switched to rice milk. I still eat cheese, but not usually in the mornings and I haven't noticed that cheese is an issue. We're all different, so you'll probably find a whole different set of foods cause problems.
There is so much ignorance surrounding RA and its devastating impact on hundreds of thousands of lives. Even many in the medical profession don't seem to "get it". Our disease is largely invisible so we're expected to just suck it up and get on with it. *sigh*
i would like to tell you the medical prescriptions i am following from the last one month . and may i please know are they updated medicines and how effective they are any further medicines , side effects due to these medicines.
It looks to me like the meds you are on are the first-line meds - that is, the older, tried-and-true meds they almost always try first. One month is probably not long enough to determine if they're going to work for you - give it at least 3 months.
All I can say, is that Enbrel has changed my life! I went through Methotrexate, Plaquenil, Gold Injections, Kineret and other various medications. The only one that has worked for years is Enbrel! I now only have to take it when I need it (which is about once a month!) I'm so happy with my results now. I'm a drafter as well, so i'm always using my hands. I have a steady full time job and yes, I do have flare ups, but they come and go quite quickly. Good luck!!!
I take Enbrel with methotrexate - I agree, it has made a huge difference for me. :) I'm glad you only have to take it once a month! I still take it weekly but I notice if I have to skip a week for any reason, I'm still okay.
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