I am 50 yrs old I enjoyed very good health until age 49 then the stiffness swelling started in my hands, the fingers started twisting, numbness, pins and needles hands and feet, muscle cramps in legs, mild headaches, lose of balance and so on. I went to the primary care doctor as required by my HMO he said it was stress take these pills. I knew better and had checked my symptoms on WEB MD I told him I thought I had MS or RA but he said no it's stress. Im a CSI guy for 29years I have been under stress investigating homicides, suicides, rapes and child abuse cases, Ive seen it all so stress and pills for stress no way in the trash they went. It took three more visits to the doctor and two more pills in the trash until he sent me for blood work well RA popped it's ugly head 194 on the Latext Turbid test and 184 on the CCP IgG Antibodies test. I started with a RA doctor and the noral prescribed meds Predisone, Methotrexate, Hydroxychloroquine, Folic Acid. Some improvement then it started to get worse more discomfort more swelling now it's Remicade so far I have only had one dose no improvement. My question is what causes RA is it stress, my exposure to chemicals at work, infections fearing those associated with the homicides I investigate the RA doctor has never explained it and seems to avoid the question. So Im looking for some answers I need to keep working at least five more years to get the kids through college any help anyone can offer as to means to improve the effects or slow the damage I would like to know ASAP. MANY THANKS:)]
That's the million dollar question.
I don't think they really know what causes it. For me, it started after a bout of pneumonia. Some have said they felt it was stress related. Others have said it started after pregnancy.
I'm one of the lucky ones in that I don't have any damage yet. I had a really good response when I was first put on hydroxychloroquine. I have read that some people have had a difficult time finding that right combination of drugs that work for them. Hopefully, you'll find it soon. Don't give up!
Hello and so sorry to hear what you've been going through. From what I've read, RA is thought to be a combination of genetics and environmental factors. But I don't think anyone really knows any specifics. Their are people on this board who know a lot more about it than I do though, so be sure to check back to see what they have to say. Sorry you had to wind up here, but since you have RA, I'm glad you did.
Linda
Welcome Bearbeall, I'm sorry that you've been through such an ordeal. Most of us can relate to your story in some way. You do have a very stressful job and that alone can add to your symptoms. Not sure that it's the cause but I know that it can be the catalyst for RA.
I for one prescribe to the overactive immune system theory and infection. Others feel that RA is caused by an infection only, others believe in only the overative immune system theory. You'll get numerous answers to your question about cause. Maybe the doctor is avoiding the questions because he's not sure of the right answer.
I developed symptoms of RA once I had recovered from a terrible onslaught of flu and pneumonia. Earlier in life I had been diagnosed with 2 other immune diseases and was taking meds for them. It's been a long, hard journey the last 10 years. I was under a tremendous amount of stress when RA hit. I was just starting a new career, traveling, and divorced the year before. Life was wonderful but very stressful. Once RA hit I was misdiagnosed by Stanford arthritis clinic and my primary doctor. It took several doctors and 5 years for a doctor to make a diagnosis. But by that time I was in pretty bad shape. I went to my gynecologist for a yearly exam and she said that she was sure that I had RA and ran all the tests again. They came back positive. My RA factor alone was over 900. Considerable damage was done in that 5 year period.
I'm on Remicade 500mg , MXT 17.5mg, Folic A, Prednisone (tapering to 7.5mg) and have finally found the right combo of meds. I've been better in the last 4-5 months than I've been in the last 10 years. My numbers are still elevated some but are showing improvement. I'm flaring now because I've been off MXT for 2 weeks due to knee surgery tomorrow.
I had 5 infusions of Remicade and several increases in MXT before I noticed improvement. Like I said it's been a difficult journey. How much Remicade and MXT are you taking? They may have to adjust the meds.
Please keep us posted on how you're doing, don't think we have another CSI type on the forum and it will be interesting to hear how you respond to the meds. Take care. Lindy
I'm sorry to hear that you have been in pain! I have been recently
I thought the lime quote was a nice little change.
Some people take supplements, some don't. I take Vitamin D, fish oil, Vitamin B's, B12 and a special formulized vitamin supplement that was prescribed for me when I went through a nutrition program, all with the blessings of my RD. I don't subscribe to the diet theories but some do. I eat a low carb/low fat diet and have lost 25 lbs. I was on 30 mg. of Pred for 3 years and gained a significant amount of weight and developed a moon face. My face has lost the moon effect and I still have about 35 lbs. to lose.
You're on a low dose of Pred. so I wouldn't think you'd get the moon face or many of the other side effects associated with steroids.
You'll get a multitude of different answers to your questions and the bottom line is you're going to have to experiement and do and take what's best for your symptoms and lifestyle. As time passes you'll learn what's right for you. What I do may be entirely wrong for you. That's the problem with this disease. It's not a cookie cutter disease. Each of us have a different set of symptoms, our reactions are different, and there are so many different combinations of meds.
The only true advice I can give you is to eat a healthy diet and try and learn stress reducting techniques, especially since you have no way of controlling the stress that's related to your job. The other job related stress is your exposure to possible infections. Have you talked with your doctor regarding this?
Sounds like your doctor started you off on the big guns of RA meds. Hopefully within the next couple of months you'll see a change. Lindy
Welcome Bear, Glad to have you with us. So sorry you have RA. It is very difficult to determine what causes it. The cause is not entirely understood by anyone.
I've had it for many years, but was only diagnosed 1-1/2 years ago. Five years before, I had tested negative 2 years in a row. Four years went by, and I felt so bad and still had so many symptoms of RA that I asked my PCP if he would test me again for RA. RF was 658, CCP was 250>. Inflammation factors were very high also.
My PCP had been convinced for over 10 years that I had an autoimmune disease, but without confirmation from rheumatologist, my official diagnosis was non-specific autoimmune disease. No way to treat something unless they decide what it is.
I've been on opiod pain meds for at least 8 years. However, all my pain is not just from RA. I also have OA, DDD, Scoliosis (which is causing me a lot of pain right now), Stenosis. All discs in my spine have some degree of dessication. And other various and assorted spine and joint disorders.
On x-rays and MRI's I show a lot of damage from OA, bone spurs, cartilidge loss, etc., but strangely, the damage they see is not the erosion normally seen with RA!
I would suggest that, if your doc hasn't yet done X-rays of your hands and feet, you should ask for that as soon as possible. What you need to know is how much erosion has already occurred. If your rheumy has started you on meds, it is a matter of finding the right ones for you, to slow the progress of the disease. The main thing you want to do is stop the erosion of your joints.
I'm not sure if the loss of balance is associated with RA or not. I have that, too, but my neurologist said mine is associated with my neuropathy. I have fallen many times and use a walker.
I hope you don't get discouraged by these posts. If your doctor has caught it before too much damage has been done, there are many newer meds that can slow it down, and perhaps you will start to feel better and at least slow it down. Do some research on RA so you get a feel for what the disease actually is. No two people are alike in symptoms or treatment. What works for one, doesn't for another and vice-versa.
Please keep us posted. There are a lot of wonderful people here and we all try to help each other whenever we can. If someone doesn't know the answer to your questions, someone else will be along soon to help.
Take care and feel better,
Nini
Nini and Lindy the best thing about this seems to be people like you that take the time to answer the questions of those like me that know very little about this illness. I have checked some web sites some are good some are a waste of time always trying to sell you the costly cure snake oil fix. I have not had any x-rays or MRI work ups just the meds and blood work also the blood work after the first two confirmed RA factors stopped no one was checking my liver or kidney function I read this is very important. I wounder why the RA doctor did not explain how important it was to make sure the blood is checked Question how often are you all having your blood checked as to you kidney and liver function. I have a father that's having kidney problems from High Blood Pressure Medications. I know there are no snake oil cures, no sure fire diets and no exact combination of meds to cure RA whats reall alarming is how many health care providers seem to miss the signs symptoms of RA. Im just starting the search out what other people have tried what worked and what failed to work. AGAIN THANK YOU ALL SO MUCH FOR YOUR HELPWell, I'm totally into the 'infection' camp altho because of posts from people on AI I'm considering the possibility that there might be a genetic component in this mess. LOL
I was diagnosed with Palindromic RA in March of last year after being in the ER 3 times (6 months apart) after dental work with an abscessed tooth. At that time I didn't realize the huge connection between dental work and the onset of AI diseases. The doc that did the CAT scan did - told me to come back if I had 'any other auto-immune responses'. Hmmmmm.
Because I was sure I could trace this back to an 'inciting incident' of a bacterial infection I focused on cutting edge research looking at infection research and eventually found www.Roadback.org. I feel that they saved my life.
The thing is, while something recent could have set this off, most people test positive for mycoplasma (the microbes causing havoc) they were exposed to in childhood. For me it was strep. I tested negative for c. pneumonia (another big bad) but knew I had it because of multiple episodes of walking pneumonia in my past. Sure enough the buggers reactivated recently - you'd think they'd play nice and swim obediently into a test tube. LOL
Anyway - I was diagnosed in March '06 and was on a walker at night in July. By August I was forced to use a wheelchair 3 X - something I pray I never have to do again. I started AP (antibiotic protocol) 8/25 of last year and in 2 1/2 weeks I could open milk jugs again. I went ice skating in December with my little girl and on the 4th of July was able to boogie board! I'm doing things I haven't done in years!
So check it out. I had to quit my job in June of last year and am now looking for another! I'd pretty much say you'll make 5 years until retirement on it!
Happy Healing,
Pip
Get copies of all your medical paperwork from now on. Put it in a 3 ring binder. Look at your labwork yourself. I'm surprised how many times the docs ignored things I considered a 'clue' in what was happening to me. I had low albumin which is a signal that the liver is not processing correctly. Not one mentioned that coupled with 3 elevated liver function tests I was most probably headed towards liver failure.
Most AI people are really low in essential mineral like magnesium, calcium and potassium. There are things you can do diet-wise to help your body heal. Taking vitamins for a couple months is NOT it. Building glutathione (bodies master detoxifier) is.
Pip the long winded
Im not a computer type guy and here I am again but this is great I thanked only two of you in my last reply I do truly thank each and everyone of you and those yet to respond. As for the infection, detal work and other ideas as to the factors causing this RA I have had them I was stabbed and got an infection, involved in four accidents (not my falt) on the job flow to shock trauma and got a nasty infection from the medical treatment which kept coming back for years until six weeks of Cipro got rid of it and had a real nasty dental experence eight years ago that still remains sore. And I am in contact with a lot of chemicals, my added fear is I come in contact with AIDS, Hepatitis and even have been in contact with TB on some crime scenes, having no protection (immune system wise) It's a new risk with my job that's adding to the stress, almost every day I am around death can not avoid it and have no way to move from the CSI position I hold. Im not to the point I want to leave on some type of disability but how do you start the process in case the RA gets worse I understand it can take a long time and it's not always a done deal.Hi Bear and welcome!
Everyone has given great advice. Only thing I really want to add is give the remicade some time to work. Some people one infusion and they feel awesome. Some people it takes 2-4 infusions. It has to build up in your system.
I wouldn't worry too much about what you come in contact with out in the field. Protect yourself with a mask and gloves etc. there are many people on the board in the medical field that have no problems.
Research is showing that RA can start after an infection. Immune system goes wonky and the infection settles in the bones and viola you have RA. I believe there can be a genetic connection because just about everyone on my maternal side of my family has or had RA. I have a 12 year old daughter with JRA and my 22 year old daughter developed it last year.
The only supplement I take is a multi vitamin. There are other people here that can help out with that.
Ok I gotta know....is it anything like the CSI show?? LOL. Sorry I was a paramedic for a long time and I am always yelling at medical shows that show things wrong LOL.
Good luck with the remicade. I really hope it works for you.
Sorry it took so long for me to say hi. I am flaring so typing right now is not my forte lol.
I only have RA in my left hip. I've got a rare case. My blood test came back positive for RA and my treatment began right away. It took a year for the diagnosis because my pain was thought to have come from my lower back.
My Rheumy told me that there is no known Cause of RA. He said that it could be from infection, injury, or genetics. At this point it is not known.
Thank god that it can be controlled. Ive still got 25 years to work.
Hi, Welcome to the Forum.
I know it sounds weird, but waiting for the meds to take 'hold' seems to be our hardest thing. I just started Remicade 3 months ago, take a huge dose and am still 'waiting' for relief!! As well as mtx and now back on Prednisone. I'm not a patient person. I want it to work, now. Prednisone is a drug you may want to read about, it works but has all sorts of side effects and you can't be on it for long...etc. Wikipedia has good info about all of these drugs.
You are under a lot of stress and we all believe that does contribute to our aches and pains. Who really knows. I have just read about the pneumonia being a factor and that's what started me down this slippery slope. I had pneumonia in Nov, open heart surgery in Dec, and just now feeling better. I still want my hands and feet working without stiffness. I'm on a real roller coaster right now trying to figure out what to do. If the Remicade isn't working I need to move on, or wait it out? This isn't easy. I have RA in my family. Lynda
Welcome Bear! I was wondering, does anyone else in your family have a history of Autoimmune disease? My mother was diagnosed two years before I was. Hey at least I have someone to commiserate with! I believe that it was always lurking in my system and that stress ultimately brought it out in me. My meds are pretty much the "big guns" too but my dr. started me on a lower dose of one of them to see if I could find relief from it and then we oculd raise it if necessary. I hate taking meds! I have good periods and bad periods. I do definitely think tht eating right is KEY. I can't stress enough that if anything, our meds really cause our immune ssystems to be lowered so we need healthy foods in our bodies. I definitely think that your job is something you should discuss w/your rheumatologist. You have very valid concerns about protecting yourself w/your compromised system. Take care, rest when possible and come back here often.