Hello everyone, I have been 'lurking' around for some time now. I was wondering how most of you would proceed in my situation. I have sero-negative RA. Am currently taking Remicade and recently added Plaquinel. The Remicade only seems to last about 3 weeks but does help. But I am in bad shape lately. Have had a hip replacement 2 years ago and my RA affects my feet, knees and hands. Knees have been bad for the last 10 years. Had 2 arthroscopic surgeries and numberous cortisone injections on a regular basis. Now the cortisone shots stopped working and the doctor basicly said that there is nothing else to help me. He said I was a canadate for knee replacement but in his words "I would like you to wait as long as you can because knee surgery is very hard recovery and even more difficult for people with RA". He then gave me a prescription for such a high dose of Prednisone I would be in the hospital if I actually took it. (60 mg a day) I do have some 5mg Prednisone I am desperate enough to start taking for a week or so.
My question is, do any of you get the 'your too young' 'you should wait' answer to surgery? My life has deteriated so much. Now, because of my pain levels, my muscles are starting to attrify from lack of exercise.
Sorry this is long, feel very frustrated and don't know where to go from here. I am going to try to make it thru the summer and then tell my doctor that I have to start having surgery to get some of life back.
boy, it's a tough call! i do have two friends that have had knee replacements done. one gal actually had the same knee done twice because of continuing pain problems. both recovered really well. back bowling too. 65ish age. the worse time seems to be the first 2 weeks. a lot of pt is needed. however, and this is a biggy, neither had ra. you will need to be able to use those muscles and joints to regain your knee function. are you near an arthritis water pool? you may be able to get some workouts to try to get those joints working.
I do go to water aerobics at the hospital and try to walk when I can and do stretching exercises but I cannot lie, I go in great streaks of being able to exercise for a couple months and then wham, I cannot move without horrible pain and I have to stop for a while. It's not like I am very active or do too much either ! I wish I could say it was. But for now I am going to try the exercise route regularly - and deal with the pain. I have never had very good muscle tone and that is an ongoing problem for me.
Water exercise brought back my muscle tone in only a couple weeks. Good luck with the exercise. Ouchy, you sound like you have really had a tough time of it. How old are you? I am sorry you have gone through so much and are still struggling with the ra monster. Welcome to AI. My heart goes out to you.
I have a friend who had jra and had both hips and knees replaced. He is doing great considering how severe his ra is. Good luck.
PS ahhhhhhhhhh - I'd love to hear "You're too young, just one more time
I had the 'your too young for hip replacement' speal couple years ago, but I have learned from that experience to not wait so long, the longer you wait the more your life deteriates. And although I have pain in that hip from an inflammed tendon, my hip is so much better now.
You guys are great thanks for the support.
Ouchy,
In the same boat with the knees, but I'm not in as bad as shape. They gave me the "too young" routine at 43. So, I'm waiting.
I spent 6 months in water physical therapy. That helped immensely. I wear knee braces, which keeps the knees stable. These are regular athelice braces. At the time I needed them, my insurance wouldn't cover them, so this is what the doctor's office came up with. They work really well at keeping me stable.
Did walk with a cane for awhile. There is one thing that I did that I think really helped. Physical therapist tend to baby you too much. I joined a fitness club, with the help of my RD, they worked with me on building up my leg muscles and joints. With their help, I can even do stairs (carefully).
I've read the same things that you have. Building muscle tone and being the best health possible is best. But there is a point where quality of life exceeds the waiting. The other thing that can happen, especially with RA, is that if you wait too long, the bone can detoriate too much and they can't even do the surgery.
The main reason for waiting in regards to age is that knee replacements only have like a 20 year guarantee and new replacements don't go as well. But look how much happens in 20 years in the medical field.
Right now, my knees are stable. Oh, they also used the synvisc shots which helped me considerably especially as I was in Physical Therapy at the same time. So, I wouldn't consider surgery for myself at this time. But I cannot go and do a lot of things. The knees swell and my hip gets to hurting. Standing in long lines is a thing of the past.
I would definitely consult more than one surgeon, finding the best one with the most experience to do it in a hospital that is set up with the best facility. Then, talk with your RA about preparing for it.
It sounds like your life is very constrained by this. At that point, maybe it is time. But maybe you can make it a definitive goal with the help of your doctors. For instance, you will exercise consistently for three months prior, be at certain levels of medication, etc.
60 mg of prednisone is very high. But 5 is low. Maybe going up a little or just temporarily would help. If they can get the inflammation down, then you would be able to exercise. But it is almost impossible to exercise when you are so badly inflamed. Try exercising every other day.
Highly recommend asking for physical therapy to get you over this and make it easier to get around for the present. I asked them what was the point if they were going to replace the darn things anyway. Their answer was that it was good preparation for the surgery and for the recovery afterwards.
Thank you Deanna, you have great points. I also have knee braces and a cane that I use when needed. The nurse at my RD said to take 10 mg. of Prednisone (5mg twice a day) until I see her next week and then they will taper me off. See if that helps with the constant inflammation and tide me over until my Remicade infusion the following week.
Do any of you have experience trying those Nordic walking poles? I was thinking they might be a help on my walks.
That sounds like a good approach with minimal risk. The prednisone can make a big difference and each infusion can really help.
Are the Nordic walking poles the ones that slip over your forearms? If so, I had a friend with polio that used them consistently to get around work and she was severely disabled in her joints. They gave her a lot of support.
But I don't know anything else about them.
I agree that you should try some PT/water therapy, but if you are unable to do even that, that what else do you have to lose by having the surgery? Good luck!Ouchy,Thanks Marcy, I am going to make it thru the summer and then tell them I am ready - I actually have liked my surgeon (he is the same one that did my hip replacement and arthroscopic on one knee) but I think he really wanted to stress how the knee surgery was even harder than a hip replacement and with RA it is even harder on us. I am not ready to give up on him yet. Sometimes I think that all surgeons are required to give the same speech about waiting.
But I would really like to hear about your experience when you have yours done at the end of the month.
Please let us know.
I'm glad to hear some of your comments, Marcy. My consultation with the surgeon was so negative. He wanted to put me in a walker. He wouldn't try synvisc shots. He also said I was huge surgical risk and he wouldn't touch me.
Well, I guess that just made me mad and more determined than ever to get to where I could walk again. I spent a lot of time building my legs up, physical therapy, water therapy, synvisc shots from my RA and using the braces and a cane. I got to where I didn't need the cane and then my hip started having problems. Returned with the cane for another year. Dumped it again.
Most of the time, I don't have much pain with my knees. I just get tired easily. I have nine surgeries in the past with a promise of more in the future. I think the recovery time scares me more than the surgery.
If it gets worse again, though, I think I will go for it.
I don't think your too young. My thought about it is the older you are longer it takes to recover from replacements like that. I don't think I would put up with so much pain I think I would say I want to have it now. Im not a very good patient. Im very picky and want things my way. When I had sugery any kind of surgery I only took meds when I absolutely had too and I always wanted to leave the next day.It's not just a pain issue for me. Not being able to work would be financially devasting as I get no sick time or short term disability from work. Plus, I have no one to really help me through the recovery. This is something my daughter is not capable of and my son already does as much as he can. When I do it, I'm going to probably have to arrange for nursing.
There's just too much unsettled in my life for this challenge. Now, if they wanted to operate on my shoulder, I'd jump on that. But they swear that won't help.
I wish I was one of those Barbies with interchangeable parts. No surgery, no pain. And, truth be told, I am not a good surgical risk.
But I agree that one shouldn't wait if you can swing getting the surgery.
This knee pain is terrible. Every time I see my RD ( every month) he drains it. I also get the cortisone shots. In fact, I just had it drained last Wed. RD told me that I will be looking at knee replacement soon. My knee is so swollen tonight that I can't bend it.
Trisha
Has he done tests on the fluid that he takes out? Does packing it in ice help at all with the swelling? Is it RA or OA? Does he have you brace it or rest it?
I couldn't deal with that. If it was that bad for me, I'd have to do the surgery.
I feel bad for you.
No, RD hasn't given me a brace yet. Yes, he sends the fluid out every time he removes it. He showed us the cartlidge in the fluid that I'm losing. Yes I use ice packs. I use heat on my hands & ice on my knees. He has never said if it was OA or OA. I will ask him when I see him. In fact, he will be calling me with my blood results & let me know if I can increase the MTX. I will ask him then. I think that whenever he says it is time for the replacement I will do it.
Trisha
I was just wondering if it could be an infection in the joint. Sometimes that happens, especially since you are sweating so much as well. Have you mentioned this?
But I guess that's why he is doing blood work. Ask him about your CBC and Sed rate too.
It seems he is a little slow on reacting to this if he is just now giving you vidicone, hasn't tried any other therapy except cortisone shots. Maybe you should ask for a referral to a good orthopaedic surgeon. You certainly should have had an xray and MRI at this point. He doesn't seem to be aggressive enough for all the discomfort you are in.
I had OA (and RA) in my knees. I woke up one day with a knee the size of a football
Sorry to go on so much, but, in my book "too young" is not good enough reason, quality of life is important, and since you're almost 10 years older than I was when I had mine done
OK I'm finished preaching
Ouchy I've read a lot about the positive and negative reason for waiting. But keep in mind, that there are a lot of young people that have sports injuries that result in joint replacements. Waiting until your 70 is plain crazy. My doc wanted me to only wait until I was 50. But one of the problems of waiting is that if joint detoriation continues too long, there may not be enough bone left to work with. I know how limiting bad knees are. If I was 23, I think I would consider getting it done. It's not so bad for me being slowed down. I can adjust my life. But I hate it. I cannot imagine being slowed down this much at 23 when you're life is just beginning. Of course, they are afraid that you will overdo and ruin the joint replacement. And you never do have full motion. And if you have to have a revision, it's more difficult because they have less bone to work with, sometimes leaving you with a shorter leg. But look at all the advancements in the last 20 years. I kind of wish I had done mine earlier. I may get my chance soon as they are going out on me again. But they might just do Synvisc shots again and more physical therapy. The complications of infection worry me a lot especially with what I've read here. If I have to have the surgeries, then I am going to be asking a lot of questions about that. Thus far I have only been diagnosed with OA and degenerative disk, but I strongly suspect sero-negative RA. I've kind of taken a wait and see attitude and just deal with what is now. I would be very interested in hearing about your hip surgery and recovery. Did you have to go to a rehab facility? Hillhoney, I had my hip surgery 2 years ago this month. I had to go off of all my RA meds 2 weeks in advance. (I was weaning off of prednisone at that time anyway; I also was on Enbrel then). The class they provide at the hospital for joint replacements is very informative and I suggest you see if your hospital has one of those to go to also. I was in the hospital for 4 days. I will not lie it was hard. A lot of pain but I also have problems with migraines from anesthesia and pain meds in the hospital so I usually am more sick from that the first couple of days. It was difficult to turn over at first, the nurses would come in and help with that. I did some minamal therapy at the hospital, (walking the halls, trying to walk up a stair). I did not go to physical therapy after I went home, the doctor said that he knew I would do my excersises at home so he didn't insist that I go somewhere. I did have to go into the blood clinic a couple times a week for the first month because you have to take blood thinners daily at first after surgery. I would strongly suggest you borrow or invest in a lift chair for after your surgery. It was a lifesaver for me. You can only bend slightly afer surgery for some time so as not to pop the joint out while it heals. You will also need a walker and a cane. I also found one of those reacher sticks very handy since you cannot bend over, my husband put velcro on the side of my walker and also on the stick so I could just slap that thing alongside my walker and away I went ! The sock 'helper' also was helpful. (looks funny but really does help !) Took me 3 months and I was ready to go back to work. The best thing I ever did. It is so nice to have all that pain gone - now if I could only get relief from the rest of my joints I would be singing !! Any more questions feel free to ask. My knees are shot. They broke down on me a couple of weeks ago. They can't find my previous MRIs because my records are so thick. We are up to the 4th mega chart. I have the MRI next week but he's looking for a torn menicus on the right knee. I don't see the point in doing a repair for that if the knee already needs replaced. The other knee is just as bad. But they want to wait on doing a MRI on that. I'm grounded, at home, off work. (But I'm really working, which is stupid because I'm not up to it.)
MarcyI have pain in both my knees. Only the right one pops which is really annoying! (I'm like a rice krispy all over.) I have OA in my knees and my doc says they need to be replaced, but I'm too young. I should wait until I'm in my 70's. I'm 23!!! What am I supposed to do until then??!!!! I am using a knee brace at work and it helps, but for kthe next 50 something years? She does not want to do steroid injections because they are not good over a long time period. Am I to just suck it up for the next 50 some years. I already don't like to go for walks 'cause it hurts. I will be amazed if I can walk by the time I'm 30, with my knees, hips, ankles and feet.
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