Arthritis Insight-Member Stories-Pat

Pat's Story

3/15/02 Update:

After almost a year on Remicade and getting average (not real great) results, its seems I have built up an immunity to it. The last treatment didn't work at all. So the Dr and I talked and we decided to try Kineret. After waiting over a week for the pharmacy to get it in I have started the daily shots. Coward that I am, my dear husband of 41 years does my injecting. I have had a week + worth so far with no improvement yet. But its a bit too early to tell. The shots don't hurt but the serum stings. Cold packs on the injection site prior to injection helps alot. No side effects at all so far. But then I never had any from Remicade either. After a few weeks I'll write again and let you all know how it is going.

1/24/02 Update:

Well, its been a year and a half since I was diagnosed with RA. I got the kind that sets in overnight. Didn't really believe anyone else ever had it come on like that but thanks to this wonderful support newsletter I find I'm far from alone. I have had 12 Remicade treatments now and I went over 7 weeks between treatments for the first time. This is a REAL milestone for me. I feel myself getting better. Although I still know and feel that I have RA, I am getting better. Has anyone out there gone into remission??? I'm more than ready for it and I am counting on it happening really soon. I don't get immediate relief from the Remicade treatments as some people do. It takes a few days. But that and the Methotrexate once a week seems to be a good formula for me. The RA DR has decreased my Meth to only 3 pills a week. I was taking 8 !!! So I call that progress. I have very little swelling and distortion in my joints...its just the pain and the fatigue and stiffness. My life is not back to normal , what ever that is, but I hope that it will be soon. I think I may have forgotten what normal is come to think of it. But my message to all of you is this...hang in there....its bound to get better. And keep thinking positive. What you speak may be what you get.. So keep it positive.

5/31/01 Update:

This is an update to my story. I have now had four Remicade treatments and I am feeling alot better. They don't seem to last as long as they are supposed to, so my Doctor said I can have them every four weeks for a while.
I find that the "sick all over " feeling is alot better and almost gone most of the time. I have pain in my feet and hands...doesn't everyone with RA???...and in one knee more than the other and one shoulder hurts more than the other...but all pain is increased when I get tired. I find I can't take a whole day at my usual pace anymore. I run out of gas about mid-afternoon. I am no longer working as my feet hurt too much to do that. Thank God I don't HAVE to work. My hands will never be the same size so I bit the bullet, so to speak, and had all my rings resized. They don't go over the knuckles very well at all. I was hoping to feel better than I am by now but I must learn patience. Can any of you tell me how long a "flare" lasts? And how long between them?? I have been flaring for 7 months now and I would love a break. When you aren't flaring how much pain is involved. ?? Fill me in as I'm a real newbee....thanks Pat

3/22/01:

Hi my name is Pat...I think maybe it would be therapeutic to start to tell you my story and try to keep up with the progress of my treatments...I really expect to become symptom free in the near future . I am 59 yrs old, female, married for over 40yrs and mother to 4 and grandmother to 10 with one on the way...I have always been very healthy . Until last September when one morning I woke up to terrible joint pain and was sure I had the Hong-Kong flu. Most of you out there won't even remember what that was. With in 2 weeks I was in a wheelchair. My Family DR had recommended a RD as he has a mother with RA. Thank God he knew the symptoms and treated me with a dose pack of steroids and a shot to hold me over till I could see the Rheumatologist. My RD is a very aggressive doctor when it comes to treatment. He started me on Celebrex 200mgs twice a day, Prednisone (15mgs a day), and started dose of Methotrexate. We went along with that by upping the Meth and lowering the Pred till I got to the max Meth and 5mgs of Pred. I improved but still have alot of daily pain. Some days are good and I don't want to go to bed cause I know that when I wake up the next day may not be as promising. I didn't improve enough for the doctor so he recommended Remicade. I had my first dose without and reactions and also no improvement. But the nurse that administers the treatment told me it wouldn't improve until after the second dose. The second treatment was yesterday and she said to wait a couple of days before I expect any improvement. I am really ready for this to work. I want my life back. I have always been very active and still worked part-time. I am also an avid quilter. I need the use of my hands and so far the Lord has been good to me as I can still stitch but not as well....I run to the sick each morning and run hot water over my hands to loosen them up. I have" joints of the day" and try to make light of the pain. But as you know that isn't easy to do. The majority of the public does not know what RA is and always says "Oh yes, my Mom has Arthritis too". Then you tell them there is a big difference between Osteo and RA. But they just don't get it. My family is so very supportive and sympathetic that I am grateful for that too. But I want full remission and then recovery. So I will let you know how it progresses if you want to hear any more from me. Keep up the good work. Pat