kennan100 Posted October 25, 2007 Report Share Posted October 25, 2007 I'm sure most here have seen me mention that I have rhuematoid arthritis. Well, I've had a decline in my condition over the last year. I was ill a couple of times within a few months of each other and that gave the RA a chnace to get the jump on me and I've not been successful in getting it back under control like I usually do. As a result I have more damage to my right hand. I had my usual 3 month visit to my Dr. the other day and he is conducting a clinical trial for a new bio drug out of his office. They are looking at me to participate. Don't know that I've been approved for it, don't know if I would get the real drug or the placebo. I do know that it is infusion therapy (takes about 4 hours), I would have to schedule it using vacation time from work and don't want to waste my vacation time for a placebo thingie. This stuff is supposed to work with 2 infusions, 2 weeks apart and then with that done has the possibility of working for 6 months before I'd have to do it again. Usually once I get this stuff under control I can go for years before it starts going downhill again. Free is good because my co-pay for these types of things is about 400.00 a pop which I cannot do. Biologics are VERY expensive drugs, my insurance pays for the drug itself but only pays 80% of what it takes to get the drug into me. Go figure. Maybe I could get a little tiny funnel and just pour it in and cap it off, I could make it look like jewelry! And I may end up needing tats, too! The last time I did infusion therapy I was starting to get track marks from the pipe sized needles they use! You all know how to pray, please remember me when you do! Thanks, Link to comment Share on other sites More sharing options...
Bonnie Posted October 25, 2007 Report Share Posted October 25, 2007 Lady Kenna.....its already there.....feel the hands and prayers as they flow towards you. RA (both parents & grandparents had it) is something I too will have to deal with as time goes by.....have a touch of it in my hands and knees now, but so far have been able to not go there. Isn\'t it the pits....turn 40 and start to slide hit 50 and wonder where it all went....:P:P Have a great day lovey..... Link to comment Share on other sites More sharing options...
Judymae Posted October 25, 2007 Report Share Posted October 25, 2007 God Bless you as I know what pain is. I have degenitive arthritis of the whole spine. This all started from a car accident at the age of 10. Who could tell you that forty some years later it would generate arthritis all over your body. I am a dh skier, rollerblaader, ride your bike, love to do these things as well as bake, cook, many forms of art & crafts and sew. I am a dressmaker designer but I just pray hard. I was born with CP but I beat the systems in many ways. I do not ask for a easy life but the be a trong person is a saying I saw in my doctors office over forty years ago. Life is but a big step for God, myself and the world. Life is but many lessons from God and bumps in the road but we pick ourselves up like puppets and start over again. One step at a time, some slower than other and they advance into a run at the end. I am alive American. Chin up girl. I am glad you have the strength for this treatment. Take care of yourself. Judymae Link to comment Share on other sites More sharing options...
victoriasews Posted October 25, 2007 Report Share Posted October 25, 2007 Oh, lady, I feel for you. I will indeed pray you get the new treatment. RA is such a bummer. I never even took aspirin until I got RA. Now I\'m always treating for something, Mono is the latest. Those lowered white counts open up all kinds of doors for "stuff". It sounds like you are much more advanced in the disease than me. Prayers going up and up and up and up. Link to comment Share on other sites More sharing options...
uncquilter Posted October 25, 2007 Report Share Posted October 25, 2007 Kenna, I feel your pain! Really. I too have RA. I have struggled with this illness since childhood. Until recently I was very well controlled with meds. Like you, the RA is gaining the upper hand. I had to retire in July 2005 (I am a dentist). Currently I work part time teaching dental hygiene at the local community college. I am thankful I am still able to quilt. Although I have to take frequent breaks. I have been on just about every med available. I just had my third infusion of Orencia yesterday. No changes yet, but I am hopeful. I will keep you in my prayers. You are not alone. I hope this new drug will do wonders for you. Carol Link to comment Share on other sites More sharing options...
appr216 Posted October 25, 2007 Report Share Posted October 25, 2007 My thoughts and prayers go up for you. Link to comment Share on other sites More sharing options...
mrsbishwit Posted October 25, 2007 Report Share Posted October 25, 2007 My DH suffers from RA, was diagnosed with it over 7 years now, shortly after our twins were born. He has his good days and bad days of pain, swelling etc. The meds that his doctor has him on and all of the doctor visits and lab work cost a fortune even though we have insurance the cost is still very high. Hang in there, this time it\'s probalby just taking a little longer to get under control. I\'ll be praying for you, so that it does. Link to comment Share on other sites More sharing options...
Beverly Posted October 25, 2007 Report Share Posted October 25, 2007 This is such a good group of people. Prayers go up from here like you could not believe. Prayers for you and Abe and young Daniel and the new moms and babies. Who did I forget? Maybe this could be a blanket prayer day. Pray for all of those in need of God\'d blessings. Pray for hope, relief from pain, and anything else we might need. Beverly Link to comment Share on other sites More sharing options...
chickenscratch Posted October 25, 2007 Report Share Posted October 25, 2007 Yes, girl. We will ask for help to get you through this painful process. My daddy has Degenerative arthritis in his spinal column. They\'ve already fused some of his vertebrae together, but don\'t want to do additional surgeries on him because of his heart and immunities. I know it is very painful and you feel helpless. I will ask that you are given strength and support. Link to comment Share on other sites More sharing options...
BethDurand Posted October 25, 2007 Report Share Posted October 25, 2007 I will certainly add you to my prayer list. Beth Link to comment Share on other sites More sharing options...
Renae Posted October 25, 2007 Report Share Posted October 25, 2007 Kenna, you are in my thoughts and prayers. Renae Link to comment Share on other sites More sharing options...
RitaR Posted October 25, 2007 Report Share Posted October 25, 2007 Prayers from here too. I have OA.. whole spine, hands, and degenerative disks and degenerative vertibrae, so they won\'t do surgery and make me into a head to tail stiff mummy.. so far facet joint injections are helping control the pain.. many days. Prayers for all needs.. RitaRose Link to comment Share on other sites More sharing options...
Denise Posted October 25, 2007 Report Share Posted October 25, 2007 Dear Kenna, so sorry to hear that you are going through this....Life just isn\'t fair, is it? Will say a prayer for you...hang in there and know that many people are sending warm wishes your way, also, maybe there will be a big breakthrough soon for your condition..you never know.....Hugs...Denise Link to comment Share on other sites More sharing options...
kennan100 Posted October 25, 2007 Author Report Share Posted October 25, 2007 I try to ignore this as much as possible, I just refuse to give into it. I was diagnosed 11 years ago. They said at the time that I would be in a wheelshair within 10 years. That was before Celebrex, and Remicade and the others we have now. This one is Rituxan, it was developed as a cancer drug. Here a picture of my right hand, it was not this bad three months ago. Please don\'t look if disfigurement bothers you, I know it\'s ugly but I think people should know what they are looking at when they see this kind of thing, then the curioriosity becomes knowledge and hopefully the courtesy to refrain from staring. This is RA. You all are so great, what a group of prayer warriors we have! I feel better just knowing I have all this spiritual back up. After all, "when any two on earth agree", so I\'m a winner already! RA.doc Link to comment Share on other sites More sharing options...
kennan100 Posted October 26, 2007 Author Report Share Posted October 26, 2007 I see I\'m not alone here, I\'m praying for all of you daily! Link to comment Share on other sites More sharing options...
ffq-lar Posted October 26, 2007 Report Share Posted October 26, 2007 Kenna, A friend at work has severe RA and was in test study for infusion therapy this last year. She tolerated the therapy well and has few flare-ups. She is now off the study (free) and still having the treatment, so I assume all is well for her. I will find out the name of the medication to see if it is the same as yours. It is a terrible, insidious disease and you have my prayers and warm wishes that this treatment will help ease the pain and progression of it. Keep quilting!! Link to comment Share on other sites More sharing options...
Sandra Darlington Posted October 26, 2007 Report Share Posted October 26, 2007 My prayers and good wishes are being sent out to all of you who are suffering from these nasty problems. I believe sharing like this is good therapy for our souls. Take care! Link to comment Share on other sites More sharing options...
quiltmonkey Posted October 26, 2007 Report Share Posted October 26, 2007 (((hugging you Kenna-babe))) Link to comment Share on other sites More sharing options...
Cheryll Posted October 26, 2007 Report Share Posted October 26, 2007 You are in my prayers. A friend has Lupus and RA . We hadn\'t seen each other for 20 years and when I first met back up with she was in a wheelchair from RA. She has taken treatments regularly and has been able to get rid of the wheel chair. She is able to go to big quilt shows and walk around. On the other side she does have to take heavy pain medicine but it\'s O.K. because then she can do all the things she wants to do. The doctor said you will be addicted but it\'s O.K. it is necessary. Link to comment Share on other sites More sharing options...
RitaR Posted October 26, 2007 Report Share Posted October 26, 2007 Hi kennan.. RA or OA.. both hurt.. both disfigure.. RA just seems to do it faster.. pain is the big thing to first face, then other things follow.. seldom easy. God bless you for sharing with us your particular pain. Hugs and God Bless.. RitaRose Link to comment Share on other sites More sharing options...
Mary Beth Posted October 26, 2007 Report Share Posted October 26, 2007 Hey Kenna, You are in my thoughts and prayer. Blessings, Mary Beth Link to comment Share on other sites More sharing options...
lizziesgirl Posted October 26, 2007 Report Share Posted October 26, 2007 May the Lord Bless you and touch you Kenna. I will pray for you and your doctors to have the wisdom to do what is best. Link to comment Share on other sites More sharing options...
Quilting Heidi Posted October 26, 2007 Report Share Posted October 26, 2007 Kenna, I\'m sorry this disease has afflicted you. YOu have a great attitude and it will certainly help you! I pray they find a medication that can relieve the pain for you! Hugs and prayers from NY! Heidi Link to comment Share on other sites More sharing options...
April W Posted October 26, 2007 Report Share Posted October 26, 2007 Kenna, Just want to add my prayers for your good health, freedom from pain and hopefully no side effects from your meds. God bless you and your family. Link to comment Share on other sites More sharing options...
PattyJo Posted October 27, 2007 Report Share Posted October 27, 2007 Hi Kenna - You are now on our prayer list and we will be praying for you each day against the pain and also for wisdom regarding the trial they are considering you for. Link to comment Share on other sites More sharing options...
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