How did your RA start?

Both mine and my Dad's started in our feet when we were 7. Mine was in my toes and eventually spread

to the ankles, knees and hips. Got my upper torso in my 20's. My grandaughter started in her upper torso

when she was 9, now she's popping and crunching at 12. I was about the same age. 

My nephew was 2. He collapsed on us when we were walking. He was diagnosed with JRA, was put on

18 baby aspirin and it was 6 months before he could walk again. He's now early 30's. Another nephew

was 16 and showed signs in his legs. My sons were nearly 20 before they were struck with it. I'm

suprised at how heriditary a disease it is.

              Nana Monster

Thanks for the insight everyone! :) I am going to make an appointment with my PCP soon (finally!) to get into the rheumie doc. I thought I may have OA but the joint pain is becoming more uniform on both sides. Now both my knees have been stiff and sore (right one swelled up on me a couple days ago). I have been tested before by the rheumie and had every test imaginable but they were always negative. I was more or less waiting to see if anything new developed and truthfully I think that if I do have RA that my 6mp (an immune suppressor) is keeping things sort of in check for me. But my knees are a new development. I mean I have had knee pain over the years but I chalked it up to flaring with my UC but now that they are starting to swell (especially the bursae).

Have any of you ever had weakness in the leg muscles? Like you felt you were walking thru mud or heavy sludge?

I suffer with the fluish/fatigue symptoms too momto3. I was putting this down to taking MTX, didnt really think about it being the Arthritis. I have been waiting 8 months now for approval on Humira, but havent bothered pushing for it as I am always fluey. Thanks for mentioning this :)
Jo

Jo...When I first started out on the MTX, I had the fluey feeling, but that was ages ago, and now it is back full force.  It is the most miserable feeling! I thought I was the only one with this craziness I wish I knew how to get rid of it!

Golitho...how long did it take before your rheumy actually said you had RA? I just kept going back to mine, not really understanding what was happening to me, until one day I went for an x ray of my hands to check for "rheumatoid", and that was probably a couple of years into my treatment.  That was when I lost hope of it ever going away, before that I thought if I kept taking the medications the joint pain would go away at some point, how naive I was!!

Golitho..When I was on the MTX, Enbrel and Plaquenil I felt pretty darn good! But then I had to get off of the Plaq, and couldn't really afford the copays for the Enbrel, after that I seemed to be on this downward spiral of fatigue/fever that I cannot get rid of.  Yes, I have accepted that this isn't going to go away. However, I still get depressed by the chronic day to day fatigue of the RA, because it is there every single day with no end in sight.  I know the MTX alone isn't working but I'm not sure what to take since I've taken just about every medication with the exception of Humira (sp) and Remicade. 

I guess what we're all saying Red is that you may have it but have clear blood tests! Its hard trying to find a rheumy that you can really talk to but because it is such a debilitating illness and you can get so depressed from it, try to find some one who really listens to you. There are so many different forms of arthritis but it seems to be mainly semantics, the treatment remains the same.

Momto it sounds as if you are flaring, you have to go back and add another med to the mtx, quaity of life really matters. I find the humira, mtx mix good, I'm still inpain if I overdo it or the weather is bad, but always seem to come back to a manageable level.

It's my endometriosis thats playing up on me right now! Always something! Golitho

*Sigh* I just wished I could see a different rheumy. I have Blue Care Network which is a HMO and unfortunately I only have 2 rheumy's in my network. I went to the first one about 2 years ago when the joint pain really started to act up and he was a major jerk! The other one is his partner and he reports everything to Dr. Jerk. But I may go see this partner because he seemed younger and much more "receptive". It could very well be that I don't have RA but OA - all I know is that I am tired of being in pain! Btw, the only blood test that came out positive was my ANA but because I already have one auto immune condition they said it was from that.

I know I had a post earlier this summer about this but I was waiting until the summer was over before I started to persue the matter. So here come's fall and time for me to start fighting for my health........again! It took preserverance of pestering the docs for nearly 3 YEARS to find the true cause of my neck pain - bulging discs and herniated discs - by that time I was tired of fighting. Now I'm rested up and ready to take them on again! LOL

I came down with RA about 7 years ago. I'm 32 years old and was shocked to hear the news that me; a young athletic vibrant young man has arthritis!!! Mad!! Mad as hell!! I started on Enbrel and was very happy with the results. Not too many side effects other than head aches, and that was about it. Last year I was in the hospital for almost 2 weeks only to find out that I now have Crohn's disease. I started taking Humira and it did the job for the Crohn's but my RA was worse than ever. So with the help of my specialist I started on Remicade. It is working well, but not as well as the Enbrel did for the RA. I have a couple months worth of the Humira in my fridge that expires in Dec and I don't know what to do with it. I know I went for almost a year with RA without being diagnosed because I had no Insurance. If anyone has advice what to do with the Humira please let me know. I'd hate to see such an expensive(but needed) medication go to waste. PS RA and Crohn's SUCK!! If there's anyone else that has both please let me know!

Blkfoot, I know what it's like to have both an IBD and arthritis. It is NOT easy! I get frustrated too when someone wants me to do things and I simply can't. Heck I get frustrated because I CAN'T do some things too! My hubby is very understanding and if I tell him I am having a bad day, he doesn't push me to do things. The same with my kids. My closest friends are great as well. It's the rest of the world that frustrates me! I think the turning point as the "ah-ha" moment for my circle of support was when I was really sick and got down to 107lbs. I looked like a walking skeleton. It was at that time I believe that people realized just how bad I was.

The best thing you can do is educate everyone around you. Get some literature or even have them come on here and read about what everyone on here has to endure. Unfortunately most times these are invisible illnesses and if they can't see it then it doesn't seem bad. They can never truly understand unless they get stricken with an invisible illness too - though I wouldn't wish that on anyone! If you are getting depressed over these matters what if you were to look up a therapist to help you overcome this? Perferably a therapist that deals with chronic illnesses.

Blkfoot and Laura.. I share your frustration!! It seems to start out with something like RA and then the next thing you know you have another ailment.  I also now have gastroparesis, which is stomach paralysis, but no one knows why, maybe the meds.  It is terribly frustrating and depressing!!! Not too mention the low B12, despite my monthly injections, it just never ends As Blkfoot mentioned it is difficult to understand the physical limitations unless you have one of these diseases, and all the medications that go along with them!

It is difficult to keep up with our busy schedules and I have been on the go so much, I forgot to take my MTX over the weekend, so I guess I will see how I get through the week without it.

Hang in there!!

 

 Sarah...It seems like you are trying all of the different medications.  Are you still using the MTX? For the Enbrel, I had to cut my dosage in half and take two shots per week and that seemed to help.  I have never tried Remicade, so I have no experience with that one.  It seems most of spend a great deal of our time trying to find the right combination of medications to keep the pain and symptoms at bay, even if it is only for a short while.  If you get to where you are in a horrid flare, prednisone in small doses works wonders!