Hi Racerunner -

listen to your body, and then discuss it with your doc and then LISTEN to them and try to follow his/her plan for you - if you can. I know we all try to figure out how to manage our own disease and to a degree we do, but sometimes we need extra help to settle the RA down some so we can keep going. don't wait too long because you can cause joint damage trying to keep from taking meds that may help you and keep you running races.

i understand your journey. and yes, you may need a cane, I have one too and i use every day. Also make sure you ask your doc or OT person for instructions for how to use it properly so you won't hurt your wrists and elbow or even put more strain on your ankles and knees.

RA is a very serious and life changing disease and you DO need a doctor to help you manage it. We all do on this forum.

Feel better soon.

A cane is an absolute necessity for me to just move around the house some days. And I don't use it like you see some people just stroll along with one - to take each step I need to put my entire weight on the cane.

I also got a walker a few months ago and have resorted to using that just to get to the bathroom some days.

The Prednisoe - if it helps you so much why are you adverse to taking it?

Thanks linzsey- yes I really do try follow the docs advice. I have lost 3 family members to cancer and I guess I wasn't ready for infusions as I had it in my head I didn't want to go that route and feel like getting chemo even though I know it is different but the process is much the same. But I will get over that as I may need to do that in order to rid myself of this pain etc.
Thanks coletrain-Yes there are some days that I feel I need one to ease the weight on my joints...probably just not there yet with the acceptance of this dreadful disease and in ways I will try to resist the cane. The prednisone thing....I am not totally against it. I have been on it before for a good length of time. It helps, but then also makes you gain weight, moon face, weak bones and hard to get off of it at times and it also raises my blood sugar to the point where I would need a med for diabetes. GRR. And I guess also I think the prednisone takes the pain and swelling away that it makes it hard to say if you feel better because of the biologic or the prednisone.
I am just waiting to feel better. Been on so many meds, methotrexate, humira, arava, xeljanz, Enbrel and now orencia. Humira worked pretty well I think but then I was on prednisone, so was it the prednisone or humira. But the other meds were stopped because of horrible nose ulcers.
Thanks for all your input. It is appreciated

Prednisone sucks I agree. I'm weaning off and am depressed over the weight gain, bloating, muscle wasting etc. Now that I'm on just 3 mgs. the pain is increasing and I don't care- I'm about ready to drop it cold turkey and suffer the consequences.
I thought Orencia was an infusion. It's injectable now?

You have to be patient with Orencia. It seems to be the slowpoke of the biologic world. See how you are feeling by late June when you next see your rheumy.

I don't know how it is for anyone else, but I often feel worse in the spring. Maybe things will ease up a bit for you.

ThinksRAstinks: yeah, Orencia is now available as either infusions or do-it-yourself.

So sorry you are having such a hard time with the pain and for it being in so many parts of your body but I know just what you are saying. I use a cane and sometimes I need to use my walker too. I purchased my cane and walker because of knee pain and knee replacement years ago. I have a hard time using them sometimes because of my hands, wrists, elbows and shoulders now.

I don't know how you are working a 40 hours a week. That has to be just too much.

I know what you mean about prednisone.... I have drug induced diabetes from prednisone. It also causes me to have Glaucoma while I use it so now I stay away from it altogether.

I too had to stop Humira because of allergic reaction and it was working so well for me. So waiting to see my Rheumy in two weeks to start another biologic. My Rheumy suggest Orencia or Actemra. I did read that Orencia might take as long as 3 to 5 months for it to help. That can be a very long time when the pain is bad.

Glad you have an appointment to see your Rheumy next month but maybe give them a call and let them know just how bad you are feeling and see if they have any suggestions that can help. Maybe ask for some pain meds to get you a bit of break from the pain until you can get the biologic or an infusion to start working.

Hoping you find the right meds for you and that you feel better real soon.

Gentle Hugs

race

I want to give you a big hug and tell you to hang in there.

my ra intensifies in between orencia infusions. I had done the orencia injections for 2 years and now I have been on the orencia infusion for a year. right now i am due for infusion and can not due to my most recent 2nd bout of lung infection. my choice this week is between breathing and walking. since I don't want a third pneumonia I am choosing breathing and we are delaying my orenica by another 4 weeks. and yes! i can see how downhill i have come at the 4th week between biologic treatment. top this off with walking I was supposed to do last week for a family event and I was nothing but a b u r d e n to everyone I was with while traveling.

i knew I could take high dose prednsione and have presto chango and I chose NOT to take it. for all the same reasons listed here by others. besides I certainly knew where my disease activity was....it prevents me from over use of my joints if anything....

i have a pretty cane, if that counts. I would rather die than have an industrial strength one. so go on amazon and find one that you like be careful to take into account your hand (the handle). both my wrists and thumbs are heavily involved so I needed a handle that would take this into account.

if you can borrow, rent, or use a scooter anywhere you might end up (museum or some such thing), warehouse store, you know, use them.

in closing, yes, I get much sicker in between infusions. orencia was a very slow load. it does do something since I feel so much RA sicker by week 3. i agree with you on the prednisone. can you take nsaids in higher doses than usual and ice? And I love both my canes. I have a really cool hand carved oak one and I have a pretty purple one.

oh! I remember your nose uclers. my rheumie told me that orencia was the most infection gentle followed by rituxan. I can not take remicaide because I would not be able to clear it out of my system in the case of these usual lung infections that i get and the pneumonia could take over she tells me. I wonder about your nose infections

feel better

depot

Thank you depotblue- Yep your singing to the choir here. Thanks I will take your gentle hug. It is so frustrating. I have been in pain for over a year of course some days worse than others, but this past weekend put me over the edge and last night in soooooo much pain I only slept about 4 hours. GRRRR. I like you yes I feel like I could take prednisone which I have, but that will not gain me much other than the band aid that I feel prednisone is sometimes. Don't get me wrong.....prednisone and I have been very good friends and it has saved my sanity at times when I didn't know what to do because of the amount of pain. Yes I do try Mortin prescription strength and it really doesn't touch the pain. I will take prednisone if the pain gets to where I mentally cannot do it anymore. I know it isn't a contest with myself to see how much pain I can withstand but it is more about the prednisone and not wanting to become a diabetic or develop cataracts or glaucoma. So that is why I grin and bear it.
Yes I am really considering a cane although I want to believe that I don't need it, but on the other hand I may. I don't order much on line so if you do how do you know about the handle? I do know that I will get a pretty one, I am not into the plain ones. Ha!
Yes I have not seen any relief from the orencia at all and that's frustrating. I know when I go back she will want to start the remicade and I guess I will follow her lead. My nose ulcers.....awwwww this is the first time that I have been able to take any medication and not get the horrible nose ulcers. Now whether it is the orencia is easier on the immune system or because of the daily antibiotic that I am on. But it is a relief to not have to deal with that along with trying to treat my RA.
Carrottop- I only work 40 hours a week because of the fact that I have been a widow since age 39 and I am not 54. It is just my income so I have to work the 40 hours. Yes some days are worse than others. I work as a nurse manager and am on my feet much of the day, so yes it is tough but I don't really have any other option other than disability and I guess I am not willing to look down that path yet.
Thank you all so much for your input. I so much appreciate it!

For me a wheeled walker (rollator) was the trick. The kind with a seat so I could sit down and rest the lower joints. I found the cane problematic when my wrist was acting up could put enough weight on it. I'm in Canada and found one at Canadian Tire for half the cost of the ones at the medical supply stores.

Unfortunately I'm currently confined to a wheelchair but that's temporary so I expect to need my walker for a long time to come. I'm only 42 so I did feel a bit weird at first in public. It helped me so much I got over it pretty quick.