When everyone was diagnosed with RA, what was your career and did you eventually have to give it up? If you had insurance at the time, I'm sure you were OK, but if you didn't have it did you have a hard time getting it?
What is your experience with RA regarding the progression of the disease? Was it fast or slow for you and what was the time frame?
I appreciate ya'lls comments it helps me to get a feel for what I might be up against. I go back to the RD next thursday. I've been keeping a log and the depomedrol shot hasn't really helped. Monday I thought I was feeling a bit better then tuesday it rained and I felt like I got hit with a ton of bricks. There's so much going on and it happens so quickly I just can't keep up sometimes. I'm still going to school to get my BSN and I'm under a good bit of stress. I work full time on the weekends in ICU as an RN. Well, I hope everyone's doing OK. As a newcomer, you really get a feel for ya'lls personalities!! It's a trip! Ya'll are great!
I think this is going to very greatly with everyone. I first started having symptoms last summer and was dx this past January. I've never really had all the swelling under control and my x-rays already show bone erosions in my fingers, toes, knees and thinning in my ankles and hips.
I work an office job and its not real stressful but since its just me, I can't call in on bad days. I wouldn't be able to stand for 8 hours or do anything physically demanding.
My insurance is through my hubby as well. The premiums keep going up but its with a big group so I know it doesn't have to do with me personally but I'm not sure how much longer we can afford the 2.00 monthly premium.
I was already on disability from a seveere heart condition, when my RA became full blown.
I was a substitute teacher. There is no way I could do that. I can't stand more than 4 minutes, I can't hold anything in my hands more than 3 or 4 minutes, I can't sit comfortably more than a few minutes, I have a dropping foot and trip all the time, I can't write any more, I can't read because I can't hold the book AND with RA/MTX fog I can't concentrate on the book.
I HATE this. My heart is getting better, but I'm sstill not able to work at all.
I'm sorry to hear that Kathy_in_wlsv. I can tell you were hit hard. I am glad to hear your heart is better though. Hang in there!I was an elementary teacher and had to quit. I worked in anI was very busy. I had my own cleaning business. I cleaned 8 houses weekly and bi weekly. I worked as a secretary at church on Thursdays and I sold Home & Garden party items. I also taught Sunday school. I was diagnosed Sept 05. I had a major flare when my family was going thru Hurricaine Katrina. It started in my right hand and my feet. Now it is everywhere. I no longer clean but I still work when I can at the other jobs. I also no longer teach Sunday school. I am insured with my husband's plan and we pay about 0.00 monthly. We also have lots of co pays. I started Humira injections a couple of weeks ago. Took my 2nd one this morning. I am still waiting for some relief. I have had several good days but mostly feel like sh** especially if it is cold and rainy.
Everyone is different. So it depends upon the person.
ttfn
cindee
Lots of good questions. It does vary greatly. Some people get a good response from the medications and can go on with their lives for the most part. But it takes getting the treatments, taking care of yourself, letting the doctor know immediately when something isn't right. The more you can exercise and eat properly, the better.
But there are some, that no matter how hard we try, we just progress. I feel like my doctor's have really failed me in setting expectations. It's the looks on their faces that have told me more than any words. We they look serious, when they order more tests, then I get worried.
I was working when it hit like a freight train. I had insurance and a good job. But things got serious quick and I couldn't even get myself to doctor's appointments. I freaked. I was single mom with two teenagers, well a little bit older. My doctor took me off work.
My parents offered to take me in while I applied for disability. I should have never listened to them. I moved to NM. In doing that, I lost my insurance. Then, I found out in NM, you couldn't get any medical help unless you were a mother with minor children.
Holding onto insurance is really important if you can do it. RA is considered a pre-existing condition and you won't be able to buy private insurance.
This year, when I finally had to quit working again, I couldn't pay the COBRA payments and lost my insurance again. Now, I am at the mercy of the state health care system in AZ. It's a good thing as long as you meet their very strict requirements as they pay for practically everything. But you have to fall below 00 in total resources, can't make any income and have to meet the same qualifications as for SS. You also cannot get help from any family or friends as that might affect your income. You go over their income level, which is poverty level and you lose your medical.
Do whatever you can to stay on medical up to a point. If the job gets too much, then it is still better to quit working. You cannot destroy your body.
Progression for some is minor joint pain that moves on to larger joints. When your knees, hips, shoulders get affected; then life gets really hard. The best protection against these is mild exercise and physical therapy. If a joint is bothering you, then get it checked out right away. Make the doctor do xrays. Mine just ignored it and now my whole left arm is useless some days. I believe that destruction could have been avoided.
Also, RA can affect all systems in your body. Again, a watchful eye is the most important thing. Chest pains, get it checked out. Breathing problems, get it checked out. Get your eyes checked out every 6 months by an Opthamologist especially if you are taking Prednisone or Plaquenil. Infections need to be addressed as soon as you suspect that you have one.
You best chance for being in control is being assertive, knowing the facts of the illness and making it known when things don't work like they should. You have to advocate for yourself constantly. You have to train family and friends about limitations and warning signs.
Many people do so well with the medications. They really do. People like me, I think, are more the exception where the progression keeps continuing. But hey, I'm not done yet. We are going to try all the doctors and treatments necessary to keep me going. I get down. But I always say to my kids, "You don't fail at something as long as you are willing to get up again." I always see an old cowboy movie in my mind at this point. The guy has been beat up and beat up and you think, he's done for. But he gets up that one last time and lands the best punch you've seen and knocks the bad guy on his butt.
That's RA.
I came down with chronic RA my Jr year in college, age 21. I've worked as a programmer/data analyst 30+ years. I could use knee and elbow replacement surgery but am stubbornly holding off.
The RA was much worse in the early years. I had a 3-4 year remission (late 89 thru 93) and a slow down hill slide ever since.
Don't lose your health ins... keep your treatment up... and you will do much better than I. Don't lose hope on the bad days, months, and even years because it can and may very well change for the better. It is a chronic illness but it is not always devastating.
My best wishes to you! Keep nursing.
I am currently working part time as an administrative assistant, and have the luxury of doing much of my work at home, which is ideal. It is the perfect job.I was a paramedic when I was diagnosed. I eventually gave that up because of my knee. Then I went in to tech support. We had insurance when I got diagnosed. My progression has varied. When we moved to AZ it really slowed down. Now that we are back in the midwest it has come back with a vengance. Along with asthma that disappeared when we lived in AZ.
I am currently a domestic engineer.
Fortunately we have somewhat decent insurance through my husband. When everyone was diagnosed with RA, what was
What is your experience with RA regarding the progression of the
I appreciate ya'lls comments it helps me to get a feel for what I might
Lorster, you need to have the discussion with your doctor about when to go on disability. It is a terrribly hard decision and doctors don't like to agree to it. When I was making the decision, I was on here constantly asking for advice. Here's the conclusion for me. I finally got to the point that I was losing so much function that I was becoming afraid that I wouldn't even be able to take care of myself. I was also at pain levels of 10 every day I worked even with Vicodin and a TENs unit. You have to be in a condition that SS considers you unable to work any job no matter how menial. For instance, if you can sit and be a security guard, they consider you able to work. Age is also a factor, 50 being the magic age. Medical records that show disability and your treatment are really critical. Best thing is to post a separate question and get feedback from everyone. Always always always - can't say it enough take the nsaid with food or milk. I do know that people suffer GI bleeds from nsaids - one of the most common medical emergencies caused by drugs. On the other hand I have taken various nsaids for 30 years. I have only had some tummy problems in the last year or so. They have provided me a much more comfortable life - made the difference between being miserable and getting by. Most of the time an nsaid is all the medication I have taken for RA. The plaquinil is the mildest dmard - it takes months to work. One of those things you don't think helped at all until you quit it. I hate pred but for me it is the magic bullet - maybe more aggressive treatment would ease the 'agony of da feet'. Can you find a nursing job like school nurse ( or remicaid infusion nurse!) that is not so physically demanding? Everyone here is has great respect for the toxic drugs (and fear too). But regular blood testing is the key to reducing your risk but catching trouble early. RA is a wicked thief who will steal your livelyhood, and the quality of your life. Please take your meds and fight back. We need our nurses! Lorster, That is a good question. Make a new post with that question, I'm sure you will get replies. I don't know the answer, but I know there are some smart cookies in this forum and they will know. Repost it. Hang in there! Talk with your RA md about the biologics. I started on them 6 months after I started going to a Ra md. My Ra was not dianosed until it was well under way and it was really out of control. The doctor's have to submit for approval to your insurance company to allow you to have the biologics. They must provide proof that they tried other meds and they are not sufficient to get your condition under control. Even the co-pays are high for them. Actually my Humira co-pay just went down!!! The was every 3 months, now it is . As for lifestyle, etc. I was doing so much worse with untreated RA that when I started meds for the RA, it improved my life so much. I work in a stress-filled law firm at a desk job. I have good days and bad days. I am finally able to walk on my lunch hour and have dropped some of extra weight I had put on before I was diagnosed. I have some permanent hand damage and foot damage and ankle problems, but I am doing much, much better. Everyone is different. I think if you are a fighter and strong willed, you can live with it. I can see where it could beat anyone down easly. Be strong! I work part time as a paralegal. I have worked at the same firm for 6 years. My health insurance is provided under my husband. Before my diagnosis and treatment I was having a very difficult time doing my job. I had a very difficult time just walking around the office. Now, For the most part I have no problem working but if I end up lugging too many heavy files or typing for the whole day, I do have problems. However, I am back to exercising (except for running). I can lift light weights. So all in all, I have been very lucky so far. I was diagnosed less than a year ago and have been on MTX for about 4 months. (I lose track of time so bear with me.) The results have been wonderful. I would say at this point I am about 90% back to normal. Of course I have good days and bad days. The RD is still working on adjusting the dose. Right now I am at 10mg. As a matter of fact I see him today and he will probably increase the does to 12 mg. So far my results have been positive...however, after reading other's postings, I am ever mindful of what the long term results could be.
your career and did you eventually have to give it up? If you had
insurance at the time, I'm sure you were OK, but if you didn't have it did
you have a hard time getting it?
disease? Was it fast or slow for you and what was the time frame?
be up against. I go back to the RD next thursday. I've been keeping a log
and the depomedrol shot hasn't really helped. Monday I thought I was
feeling a bit better then tuesday it rained and I felt like I got hit with a ton
of bricks. There's so much going on and it happens so quickly I just can't
keep up sometimes. I'm still going to school to get my BSN and I'm under
a good bit of stress. I work full time on the weekends in ICU as an RN.
Well, I hope everyone's doing OK. As a newcomer, you really get a feel for
ya'lls personalities!! It's a trip! Ya'll are great!
QUOTE]
I came on this site looking for the same kind of information. I am also an
RN working a med surg unit. I was diagnosed with RA a year ago while
being worked up for a hysterectomy. My CRP was 28 and RF 74. It
started with ankle pain and I contributed it to being on my feet so much,
then I blamed my shoes and tried every type of shoe on the market, went
to insoles, no relief and then mentioned to my internist that I had
swollen, sore ankles all the time. At first the pain was just when walking,
never any aching. I was prescribed plaquinil in april but did not start it
until 5 weeks ago. Since starting it, the pain has moved into my left
thumb and wrists. i don't know if it is a side effect of the med or a
progression of the arthritis. I was full time on med surg when all this
started and i just could not do it so i went part time. Then, in the spring i
went to perdiem and work when i want. the bad part of this is i lost my
disability coverage. I'm not sure at what point people can apply for SS
benefits and was hoping i could get some help from people on this site.
Anyway, that is my story. I don't think this disease takes the same course
for anyone, it just does what it wants, when it wants...it is really hard to
know what the future holds, especially for someone who is on their feet
all day long. i hope this helps.
stop the inflammation. He also prescribed Relafen. Do I need to take
these meds together in order to work? The plaquinil has made NO
difference by itself but I didn't really want to be on all this medication. I
see so many patients with GI bleed that are on NSAIDS and I just hate to
get started on those. Any input?
DMARDs before I can get drugs like remicade or humira? Does anyone have
experience with this? Maybe I'm just getting impatient because this is taking
so long to work and I feel that I'm wasting precious time when something
else may work better and faster.
I never know what I will be feeling like next week, next month, etc. I live
in a rural area so not alot of jobs where i'm from. I'll leep my eyes open
and hopefully something will work out for me.
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