I have RA. It was a long process to get a definite diagnosis..took several years, it began with irregular, atypical symptoms for me. It began on the 14th day after I got typical vaccine boosters for college. I had very mild symptoms before that, but no doctor ever mentioned it before.and even after it flared hard fast and extreme, it still took a few more years before the diagnosis was concrete.
My original rheumetologist strongly believes the vaccines triggered mine, but my newer rheumetologist thinks it is motly genetic.
For a few years I was completely and totally dependant for all my activities of daily living. I could not comb my own hair, brush my teeth, dress or bathe myself walk or anything. Immediately prior to being stricken with this, I was working as a nurses aide in a skilled care nurseing facility full time plus and also in nurseing school, and also lobbying and advocateing for disabled military veterans AND mentally ill children at all levels- local, county state and federal level.
I had several tendons rupture spontaeously due to the intensity of my symptoms. I almost required a feeding tube when it hit my hyoid cartlige in my neck.
I started on NSAIDS only, and they did nothing positive. My pain was intense irretractable and unbearable. Morphne and demerol did not tuch the pain. My joints were so sensitive, as was my skin, it was similar to gout, but far more widespread. Room air current sent me in agony, and I often screamed involuntarily for hours. I barely remember that time, my mind disassociated due to the intensity and long time of such pain.
Sadly my first rheumy was not aggressive with treatment, and I also lost medical insurance when I became too ill to work. Ironically ibuprofen helped me far more than narcotics.
My old rheumy retired and I wound up haveing to find another, my new one is 2+ hours away.but he is VERY aggressive with treatment.
I am now on methotrexate, prednisone, Humira, ibuprofen, folic acid, Omega 3, calcium and vit D. Yes, I now have Cushings. No, I am not being successfully weaned off pred. Yes, the medications contributed to liver problems and also to Metabolic Syndrome-prediabetes.
Yes, I was aware of the risks and possible side effects of the medications before I began the medications. I agreed to the medications anyway. Without the medications, I lived 3 + years unable to walk, move, use my hands or arms, feet or legs AT ALL.....often could not move my head, my hips were usually also involved..as were my shoulders. Becuz my husband is so ill and 2 of my 3 kids are also special needs, they really did not do much to help me or to keep house or anything......and most of the time I spent in my room, in the dark, quiet, going without food, water or being cleaned etc. They stayed far away from me becuz screams would escape involuntarily from me.
Eventually I did begin to regain function, and I used a mobility scooter for awhile-and then a walker, and numerous braces and splints etc. My husband and kids floundered and sunk lower while I was so very ill. For me, the potential side effects of these medications was still a no brainer. I was not alive before these medications.
I was just at my rheumetologist last week. It simply amazes me how I function now. I treasure every single minute of every single day ---the illness has changed me dramatically. ALl my priorities are vastly different than before my illness struck me down.
I have bone loss in all my toes, and in my shoulders. and in some fingers. My fingers have gnarled and twisted some......BUT my joints and tendons have all been functional since I began the coctail I am on now.
Yes, cardiac issues are common, and RA is a systemic illness and can affect any joint or organ in your body.....it can be very serious, when I was at Ronald McDonald House with my son, there was a teen girl there with very serious juvenile RA........her life was in danger.
My mother had RA, but hers did not manifest as young as mine, nor as severe. My difficult child is now already showing signs of it.
I used to go to an online support group at yahoo.....yahoo groups-----there is one for RA. THe people there who moderate are extremely knowledgeable and the people there were all very kind. I would send you a link, but recently my poor ole WebTV is not working with Yahoo at all, so I cannot get there to grab the url to send it to you.
When I was at my rheumy this week....I comented to him that his waiting room surprises me becuz noone in the waiting room looks like there is anything going on with them.......noone seems to be in pain, noone uses braces or splints etc.....this doctor is very aggressive. and you can see it in the waiting room.
I would love to get off the pred.....BUT.....there is no way I could ever ever go back to living daily in the intense pain I was in before. And I do not understand why my original rheumtologist let me become THAT ill and let it continue for so long.
It devestated us financially.....(I was the sole financial support) and it created a horrible mess of our home, becuz I culd not do anythng and could not even make the kids do anything, so the house became so trashed and it went on so long, I still have not caught up....not even close, tho I work hard at it every single day.
BUT it taught me a lot, too. ANd what I learned was helpful in how I view my difficult child.
I'm not quite sure just what it is you want to know? I hope I did not bore you or make you nervous. I do not think most docs let patients reach the level I was at. There simply is no reason for most people to get THAT bad and have it go on THAT long. Altho, the side effects of the medications ARE bad, really bad......but RA itself is also really nasty. The way I look at things now? I was not living before. ANY day that I have had since then has been a gift. Any day I have had with no pain- and I seldom have pain now----has been an extraordinary treasure. So much so I even enjoy all my chores now. LOL, go figure.
I HAPPILY run up and down the stairs to do laundry every day. I LOVE mowing the lawn.
Even when I could talk my kids into combing my hair back then.....even when I could tolerate the brush on my head? They never did it to my satisfaction, and there was nothing I could do about it. Inever thought a person could be so happy to simply comb their own hair. HA! and.....yeesh, before I got sick, all those thigns were part of my job every day....I did all those things for other people. LOL.