Rheumatoid Arthritis Support Group

Well, I must admit, I had a few good days last week.

Its been one week and all my symptoms of pain and swelling are back. My infusion is supposed to last 8 weeks...not sure what the next seven wks. will be like.

Its times like this that I try to search within myself for more strength...I must learn how to cope with this rollercoaster disease...just when I thought maybe the infusion is actually working....pain and swelling...rears its ugly head..and bam!..I am back to square one....As I look back at my RA journey, I back track...thinking...okay, I started out with plaquenil, celebrex,prednisone, methotrexate. Received many cortizone shots in my knuckles, wrists, feet,(would not let them give me those in my shoulders)...I have had fluid sucked out of my joints from a large needle like instrument... Doc was going to put me on Arava and some other combo meds...he decided not to when he saw me during an office visit and looked at my swollen knuckles, and wrists, he said we have to treat this more aggressively and suggested starting the remicade infusions, but first I had to have a spinal tap( of course it did not go smoothly and I ended up with complications)started the remicade after that and actually my dosage was increased for my last 2 infusions..my doc..is thinking about changing to Rituxan....not sure I want to go down that road, I read the side affects and they seem to be worse then the others...also, I don't relish the idea of sitting with an IV for 5 or 6 hours and thinking I hope I don't experience any of the bad side affects..

I have to take a break, my fingers and wrists are hurting badly, knees and shoulders and feet are just rendering me useless....oh well, maybe I have to try the unknown again....I am a little apprehensive....to be honest, it doesnt seem like anything is working, or at least working like it should.

I guess, I sound like I am complaining...sorry if it sounds like that but, I am just looking for a way out of this and the few days I felt almost normal gave me hope, but then the hope was diminished time after time...So now I will continue to fight, but, it does get harder each time you get a glimpse of a little normalcy only to be slapped back down with pain and suffering...Okay, I really have to rest now, wrist and hands are throbbing....

If anyone is having success with their meds..please let me know...I would love to hear about some good experiences....

cella

I am so sorry to hear things are not good. You are right...it feels awful to be knocked down...yet once again.

But hold on dear. There are other RA meds that you can try.

It is scary to know what most of the meds can do to us. But think about it...is it worth it? Will it improve quality of life?

Do you have pain meds to take? What about your prednisone?

I guess I am rambling because I wish I could help you.

Know that we are here for you dear.

You are in my prayers as always.

Gentle hugs

Cella, you are not complaining and this is why we are here, to vent when things upset us. I'm sorry you are in pain again and feel the infusion is not working. Maybe call doc and see what can be done in the meantime. Lord, this is a nasty disease.

Why do you refuse the shots in your shoulders. Elbows and shoulders are where I have gotten them and refused the hands and feet. Just seems like hands and feet shots would really, really hurt. When doc first offered to start doing them, i wondered if he had enough needles. lol. and when all joints hurt how to pick and choose where to get them. I know it should be what hurts and limits the most but fear of those shots make my decisions.

Hope your not as bad today

Hugs, Donna

Cella, Im sorry you're feeling so lousy..physically and emotionally. It's a horrible disease. Vickie and Donna are right, there are many drugs out there now ( 2 just introduced for RA in the last few weeks).. ask to try some of them. Also, have you been keeping a food diary? I notice that certain foods make me swell and hurt more (ie: fried foods, tomato sauces ..booo I love Italian food). If I stick to more fruits and veggies I do much better. Some people say that dairy products make their RA symptoms worse. Just a suggestion. May be something to think about anyway.

In the meantime, I hope that you'll be able to start feeling a little better. You know you're in our thoughts. {{{{{HUGS}}}}}

karen

Cella: Listen to Tishylu.....I am going to try that route...the

minocin or doxycycline......I haven't taken antibiotics in YEARS, so

the results might be good. MTX was a waste of my time....if it is

making you nuts or hurting.....ask for another direction....that is

why I am here.....

Hi everyone

I want to thank all of you for getting back to me...

I do take hydrocodone for pain..I always hope that I wont need it and can endure...as far as the methotrexate..it actually did work for me, but, not completely, so that is why the biologic was prescribed.

Now that the remicade is not working I will have to report it to the doctor....I am going to ask why the antibiotic you suggested, Cyrusray, was never mentioned to me?....As far as refusing the cortizone shots to the shoulder, its just that everytime I would get a shot it would make my hands blow up immediately after injection from an initial allergic reaction, doc had to put ice pack on my hands right away and then I had to wait a few days and ice my hands to get the swelling down..just my luck, to have an allergic reaction to the cortizone... I am not sure, but, I think that you are not supposed to have too many cortizone shots in a specified time period...prednisone is another med I don't want to stay on, and my doc agrees, that I should only take it when I absolutely need it for a week or so...

Karen, I will keep a food diary and see if certain foods create more of a flare up...thanks for the tip..

I guess some of you on here probably have gone from one drug to the next...trying to get a handle on this disease...

Cata, if you are out there, GOD BLESS YOU....you have endured for such a long time...and are still fighting the fight...

I just want to thank everyone that has responded...

I will take your thoughts and ideas into consideration...I will be calling my doctor this week and see what if anything he can suggest.

My dear cella

I want you to know I care very much for you. You are always in my prayers dear friend.

Hugs

Cella> When I first began MTX....I requested minocin and celebrex

because I had read that is what they put Kathleen Turner on..I was

toooo embarrassed to tell doc that is why I wanted it....NOW when

I go in tuesday, I am going to tell him of Tishylu's results...read

her posts.......Years ago when I had this start up in my back (24)

I went to a doc that gave me cortisone shots on occasion. NO ONE

ever thought about drawing blood at that time.....I have learned

since then that cortisone will cause osteoporosis....and Cata says

she has it........I am learning more from all of you than most docs

are up to date on......and I am sure that if you ask your doc for

a treatment suggested on this site....he will think you are nuts.

Gee.....my wrists hurt from typing.....

Cella, I'm so sorry you are feeling so lousy but don't worry about complaining. That's why we are all here for each other. I am in the midst of finding the right meds too, we have tried several combo's but the doctor insists he's not giving up on me until I feel alot better. Right now I've decided against infusions but I can't say I won't be changing my mind. I have had many cort. injections and from what two different doctors told me, there is no limit if the injections are in different joints however no more than 3 in a 12 month period in the same joing. I wish I could be of more help but I will keep you in my thoughts and prayers and hope that you can begin to get some relief.

Connie

Cella, I started Rituxin in January and finally began to see results in April. A big difference, but I still have swelling and pain. at least I can walk unassisted and do some house duties.