I would really like to do a poll on the progression of RA from the posters here.
I am moving on to a wheelchair and have not heard from many that cannot walk.
I also need an aide or I would be in a home.
I have had the disease around four years.
Who I would love to hear from are those of you that have been in my place and their situation improved
I think for those in my situation - they must wonder also. It seems rds pretty much look at the numbers and other symptoms are confounding to them. My numbers came down with Humira and nothing else is being done to change my meds. I feel so sorry for all of you that are sero negative. It must be hell because it is so hard for the doctors to not let the "numbers" be what guides their treatment. My rapid deterioration then gets thrown in the pot of fibromyalgia and previous damage so the only add to the mix is a wheelchair and Lyrica.
I may not be the most popular person on this board but there has to be others with the same feelings, concerns and questions. Can anyone chime in and help us get a bearing where we fit in????
Mary, Thank you for the great start. I think the pain was the worse for me in the beginning but my mobility has decreased until the only thing I can do is swim. Since I cannot drive, I swim only rarely. I am trying to convert a room with my aide (slowly but surely). It is full of boxes still. We want to make it into a yoga/meditation room. I have a gentle yoga tape that you can do it all on the floor. I have all wood floors so we want to find a cheap futon to just leave on the floor once we get the room together.
My rd does use xrays. She says my swelling can also be attribute to fibro and my ESR and anemia levels are fine.
Thank you again Mary. I am so interested in your story. Your story will have a happy ending. That gives me a big Roxy, I have had RA 17 years, am 0 neg on blood..have had 4 joint replacements, ankle fusions, and have only been in a wheelchair, post op, for the ankle fusions..
I can stand, walk, wear orthotics, or a brace on leg if need be, drive, cook, do steps, as knee replacements are wonderful///
If i didnt take the meds, i would be in a wheelchair..
perhaps the Humira, isn't doing its job, and it may be time to move on to something else, Remicade?
I also take Mtx, Nsaids, Humira,and prednisone short bursts if needed...but not that often..And just got off Lyrica..
I remain positive, and no way no how, am i getting a aide, or a home, which is upwards of 00 month, hopefully, if i live to be 80, or more, and need a home then, wil have the money for it..
Since you have had RA for 4 years, it will get better, finding the right meds, but it takes time finding the right drug combo..
The fibro does get better over the years, my therapist, said in his profesional opinion, fibro hits hard at the beginning years, certainy was true for me...
I just go forward, and live life, and thank God i don't have cancer, then i would really have something to worry about..
You may come to the point in getting knee replacements, but as i said they are wonderful..There are JRA patients, in their 20's that have had them done..
Keep your chin up, and even walking around the house, will help keep you mobile, and some gentle stetches..I would really try to get the RA under control, the right meds combo, and try to stay out of a wheelchair..Best of Luck Roxy, I have also been doing "Tai chi" for arthritis in the family room. It is a DVD specifically for folks with arthritis. I am afraid if I got on the floor, I couldn't get up again
I need help off the floor Mary but I have no balance. I fall often so no Tai Chi for me.
Linda, the chair will get me out of the house which will really help my mental attitude. I do get around the house with a cane. I do damage when I do my very gimpy hobble. It just is not good for any body to hobble the way I do - it is like a Pee Wee Herman dance or something.
I agree about the meds but I like this rd for now. She sure has the credentials.
It is not the cost of a "home". I just won't go there.
Why did you get off the Lyrica? I am still working my way up. I am at 150 mg. trying to eventually get to 600 mg. I am off of pred. Hoooooooooooray.
Thanks for the great advice. I have problems with falls. That is what limits me the most.
I was using a cane. Especially if I knew I would be on my feet alot. I used to not be able to stand longer than a few minutes. Mine started in my hands, so doing anything with them are a problem. I started enbrel a couple weeks ago and can already feel some good results. This is over two years after being dx and trying many, many, drugs, several of which I was allergic to. So I am hopeful again, but have been (as stated in another post) up and down, up and down with this disease. I have also found that the weather is a big issue with me. Can't stand any type of precipatation. So I hope after all this snow/ice/freezing rain going on here in IL I will feel better again. I think that's alot of this disease, it's so weird, and unpredictable. You never know (at I don't) how you will feel one day to the next how you will feel.
I wish you better days ahead, Roxy, they will be there, just wait for them and savor it when it comes.
take care
Roxy, i have also degenerative disc disease, and after PT, epidurals, i have made progress in my periphael nueropathy on the bottom of feet..Roxy--
I have had RA for 17 years now, was diagnosed at the age of 25. At first the disease was bad until I knew it was RA, I could hardly walk, I would cry at night from the pain. I started out on gold shots, became allergic then went to Imuran which my second RD took me off of because he said the side effects were too severe and then I started methotrexate. I have also been on Plaquenil. Right now I take Arava and Plaquenil and 4mg of medrol which I am slowly weaning off of because of the side effects. I am doing fairly well now just have some back problems which are bad somedays and somedays I feel great. I just have to learn to pace myself cause on the days I feel good I tend to overdo
My disease has had its ups and downs, a lot of it has to do with the fact that I am overweight. I have recently lost 32lbs and I feel sooo much better. Just yesterday I looked at my legs and they werent swollen and I thought geez how do these skinny legs hold me up?
I wish you could find your combo of drugs Roxy so you wouldnt need an aid or wheelchair. What does your RD say? I am not sure, what combo of meds are you on now?
I do so hope that things get better for you Roxy you need a break!
Hugs!
Roxy most people with RA are not in a wheelchair.
Why are you in the chair and what are you doing to change the situation. Have you changed doctors to get better more effective treatment? have you gone regularly to physical therapy to work on the balance issue? have you had joint surgery to replace or repair the damaged joints.
A chair will not help you avoid a nursing home. In fact it is likely to hasten your trip there as muscles wither away and threats of blood clots and pressure sores go up.
So if you want the use of the chair to be temporary what is your plan to get past the need for it...
Roxy, I think that it is time to change meds..It doesn seem like the Humira i helping any. And maybe you do need a small dose of pred. Roxy, the tai chi does not take a lot of balance (yet, I am still at the beginning stages) and some can be done from a chair. It is really good for stretching!Roxy - hang in there, nobody wants to be in a wheelchair, but if that is the course that your personal disease process has taken you, well, acceptance is a great mental relief.
Perhaps your doctor can put you into PT and see if you can get some strength back - best of luck and keep us posted - Cathy
Roxy, I would try and bug the dr to find out ANYTHING you can do to not get yourself into a wheelchair, at least all the time. See if you can get into PT like others have suggested and try ti-chi from the sitting position and work your way up. Even though it may soudn like a good idea to be in a wheelchair, it could also do more harm then good in the way of your muscles and bones. Talk to the dr and see about getting put on Remicade or one of those.
Roxy
It sounds like you're having a horrible time, but don't give in! I agree with everyone else, you need to get moving, girl! PT would really help you out and definitely speak to your RD about being more aggressive with treatment. Or have you thought of AP therapy? The people on it seem to be doing really well. Maybe it's time for a different approach. There are so many options available to you. Focus on what you can do to regain your mobility. Many gentle hugs to you! I hope you have a superfantastic and extra comfortable day.
maybe you are falling because you are taking too many pain pills?
kel
I definitely agree with the PT. I have done it for a year and I am in anRoxy, I too have the combo diagnosis of RA and fibro. The one thing you definitely need to find a way to do is keep moving. The worst thing for fibro is to give in to it and sit down. I know it is hard but sometimes the best things are not always the easiest. I'm with Buckeye, you need a plan to get past the wheelchair, it needs to be a temporary fix on the way to a permanent solution. It is possible that some of your meds or a combination of them that is causing you to fall so often. 600 mg of Lyrica seems like a lot, my dr. says 300 mg is the maximum dose. May just be a difference in dr's. I know you are in a rough stretch right now but the important thing to remember is to just keep on keeping on and never, ever stop. take care.
CG
Like I said for me everyday was different. There are a number of things that make you fall down. And i understand that sometimes you just have to wait it out. Maybe this lyrica will help you out. I believe your post was that you wanted to know has anyone been here and gotten better. Sometimes you have to adjust to your meds. I would say the answer is yes. Fibro and RA is tricky. It dose sound as if you are swelling or flaring. WHat is your total med combo? How long have you been on these meds? Can you describe what is making you fall down? Maybe we can put are heads together and help you out with a bit of more info. When my knees go out from under me i get prednisone and those pull up knee braces at the drug store as well as crutches or a cane for stability. Have you had an MRI of your spine top to bottom? A neurologist pain specialist is a good place to start. They can check you for nerve conduction and vascular spinal and they treat fibromyalgia, really help you along with the RD. They even do an MRI of the brain to rule out MS and your ears even show up on that so to rule out things that can make you dizzy besides medicine. Anyway be careful and do not fall down that will not help. Just find the cause of the falling and go after it. Good luck!!Hi Roxy,
One thing you said in your post that bothered me is that you are trying to get up to 600 mg of Lyrica. Did the doctor tell you that is where they would like you to be? It seems like a lot to me.
I too take Lyrica and am at 75 mg 2x a day. My RD said that I could increase the dosage as needed (with his assistance) but did not give me a specific dosage to head toward.
Less is always better and if you can get some relief and keep at a lower dose please try to. I love my Lyrica but also know that it is the cause of some sleepiness and even maybe a little unsteadiness, so am willing to get maybe 75% relief instead of 100% relief, so I can keep the side effects at a minimum.
Hope you are better.
Karen
roxy, do u think your unsteady could be from your meds? or is there something going on in your middle ear? what is lyrica?
kel
I have been reading this board for awhile and never posted, but this post really made me think. I have had RA and fibro since '92, maybe undiagnosed since '84.
This post made me realize some things I didn't know I really was thankful for.
1) I'm thankful I can not afford an aide or household cleaning help. I have had to do these things myself and even if I am not the best at it, I guess it has kept me moving. It may take me ten times longer to do things and it hurts but I have to do it.
2) I'm thankful I have a good husband, that will not do too much for me. I get mad at him for not helping me more, but I think he really knows I need to keep moving and trying. We both share a good laugh over my klutziness sometimes and it has helped keep my sense of humor.
3)I'm thankful for my children, They may be older now, but they still expect me to be a good mom!! I have 2 doggies that are my babies now and they still expect me to feed them and take them out to poop and pee!! It keeps me moving.
4) I'm thankful to this board because the responses to this post have made me realize that no matter how uncomfortable it may be I need to change my medication, the current ones are not doing the best for me. I think I needed a good kick in the butt on this one!!
I have a lot of damage and have had some surgeries over the years and have been really in a bad spell for the last year and feeling a little bad for myself, so THANK YOU ALL!!!! for making me appreciate things. I really don't want to move , but I have to even if I crawl, I hurt whether I move or not so I think I will keep moving!!!!
Hi Roxy - I have had RA &fibro for 10 years and had severe pain for quite a few years. It was a really tough healthy diet that got me mobile again and while I still flare and have bad days it has changed from how it was for the first few years. I still get fatigue and then dont eat properly and flare but for me it worked as it has for other people. The strongest medication I have taken is codeine and what I have seen friends experience from the heavy drugs I would be seriously considering AP treatment first and will do so if I need to in the future rather than take the strong RA medication. I was told I would be in a wheelchair but for me that will be the absolute last resort.