kennan100 Posted October 27, 2007 Author Report Share Posted October 27, 2007 The nurse called with the results of my bloodwork this time, and the bone density test. Both are fine, I\'ve never had a problem with tolerating the meds and I do take calcium adn folic acid. The bloodwork did say that the rhuematoid factor has gotten really high, over 500, and I think she said normal is 114 (?). She that the Dr had seen all that and told her to call me with the results and then he wants the file back so he can go over the clinical trial thing with the Dr. Practioner (I think that\'s what she\'s called, she\'s new there my last 2 visits), and they can make a decision. He ahsn\'t seen the change in my hand since it\'s taken place since the last time I actually saw him. So far so good so keep praying! I really love yaou all, thank you for your support! Link to comment Share on other sites More sharing options...
kennan100 Posted November 13, 2007 Author Report Share Posted November 13, 2007 Thank you for your prayers! The Dr has contacted me again & I have an appointment this Friday for a consultaion & to sign the consent forms. The study is for people who cannot take Methotrexate, which is the major DMARD (disease-modifying anti-rhuematic drug). It has been in use since the 70\'s as the primary drug, normally used in conjunction with something else to control this disease. Most people can take it, & I\'ve had no problem with it, but I am on the highest dosage and have been almost since this began in \'97. They are trying to find out if the Rituxan will work with othe DMARD\'s as well as it does with Methotrexate. They will be weaning me off of the Methotrexate and it has to be out of my system for a period of time before I can go on a different DMARD and the Rituxan. I\'ll get the 2 infusions, 2 weeks apart and then that\'s it for a year. If it\'s not enough and I start having flares then they can do another infusion at 4 months and then that will be it. Here is my concern: Coming off the Methorexate is going to be really rough & it\'s very scary to think about since I was literally bedridden for a period when this first appeared. I couldn\'t dress myself or brush my hair, or teeth and had to have my family help me. It appears that the Methotrexate may not be working as well as it has in the past so I need to do something. Please continue to remember me in your prayers. I have to keep working. I really need a smooth, quick transition in this process. If it doesn\'t work I can go back to what I was taking and that is fine, but it\'s the period of time without anything that is not going to be fun. Thank you again for your prayers, there are many people with this debilitating disease and in the last 10 years they have developed many new drugs for one disease that they are finding also work on RA. Not everyone can take some of them & someone just don\'t work at all on some people. The more options we have for treatment the better! Now if they will just come up with something more affordable....affordable as in cheap! Link to comment Share on other sites More sharing options...
PamelaA Posted November 13, 2007 Report Share Posted November 13, 2007 Kenna, My prayers are with you and the doctors and reaearchers who are working to find new ways of treating this debilitating desease. Trust in God to get you through this trying period and his healing ways will be upon you. Pamela Link to comment Share on other sites More sharing options...
Melora Posted November 13, 2007 Report Share Posted November 13, 2007 I am so sorry for your loss and glad you can find comfort here. My thoughts and prayers are with you and your family Melora Link to comment Share on other sites More sharing options...
PattyJo Posted November 13, 2007 Report Share Posted November 13, 2007 Kenna You are in our prayers nightly and we will be praying that God will use this new drug to help you. Link to comment Share on other sites More sharing options...
QuiltsbyNini Posted November 13, 2007 Report Share Posted November 13, 2007 Kennan, I don\'t have RA, but I do have PA, which mimick RA, and most drugs that work for RA will work for PA. I was diagnosed some 18 years ago, and the doctors also told me I would be in a wheelchair within 10 years. I went home and cried for two days and then decided I was too stubborn to let it win. I do still take my daily meds, some 10 pills plus my 6 pills of methotrexate once a week, but so far I\'veonly had to slow down a bit. (of course being 53 might have something to do with it!) I have 5 kids, the yhoungest two are 6 and 7 and I manage to keep up with them most of the time. I was on the Enbrel for a year or so, just after it first came out. It was still considered experimental at that time. Now, it is one of the durgs of choice. Knowing that there is another possibility on the horizon keeps me hoping for a \'cure\'. You are my hero! Good luck with the treatments, and keep us posted. (once a drug is approved for RA, it is usually only a few months before it is approved for PA.) Lots of love and prayers! Nini Link to comment Share on other sites More sharing options...
countrystitcher Posted November 13, 2007 Report Share Posted November 13, 2007 Kenna: My thoughts are definitely with you. I was diagnoised with RA this summer. It affected my feet first and I could barely walk. I went to my foot doctor and bought special shoes, etc. Finally my index finger decided to swell and looked like a sausage and hurt awful. Dr. then decided to do blood workup and my RA factor was off the wall. He said I won the major prize!! So I am now seeing a specialist and we are trying to decide on medications. This is not something I want to do but I know if I want to quilt and be able to walk that I must take them. My husband will not even take an aspirin and is so against doctors who push medication. So I also have to battle him. He doesn\'t understand the pain involved and thinks I can work thru it. I\'ll pray for you if you\'ll pray for me - we can be prayer sisters! God Bless You Sharon Link to comment Share on other sites More sharing options...
kennan100 Posted November 14, 2007 Author Report Share Posted November 14, 2007 Thanks y\'all, I really appreciate the prayers & support! I don\'t have a DH although my family is very supportive, too. Somehow talking to y\'all about this is just really comforting, I so appriciate all of you! Big Hugs to the group! Sandra I just sent you an email! Link to comment Share on other sites More sharing options...
kennan100 Posted November 17, 2007 Author Report Share Posted November 17, 2007 Well, Dr visit was yesterday, all my questions were answered, I have the consent forms with more info on them and have to sign them and get them back to the Dr. He gave me a prescription for a different DMARD taht I will start on next week, we\'ll see how this goes. This is the scary part, I\'m worried that this new one won\'t work as well as the other but I have to be on it for 12 weeks before I can start the Rituxan. 12 weeks, that\'s like January or February, YIKES! But I have to get through this part to get to the Rituxan and I\'m just very determined to get through it! Link to comment Share on other sites More sharing options...
ffq-lar Posted November 17, 2007 Report Share Posted November 17, 2007 Kenna, It looks like you are moving forward in a good direction. Prayers and warm thoughts to you for a great outcome with this new therapy. Keep us posted, please. Link to comment Share on other sites More sharing options...
Mary Beth Posted November 17, 2007 Report Share Posted November 17, 2007 Kenna, I have been in and out of town and have been trying to keep up with you, as Linda said it does look like you are moving forward. Still praying!! Link to comment Share on other sites More sharing options...
kennan100 Posted January 23, 2008 Author Report Share Posted January 23, 2008 This is coming back to the top! I went today for all the last tests for the study. They took ALL my blood this time and did the EKG, I go tomorrow for the chest xray. Then I\'m all set for the first infusion on February 12th. I\'m going to try to move it to the Friday before that so that I\'ll have the weekend to see about reactions or side effects and then can have the entire next week to deal with my load legalities at work since that is my deadline week. They say it will take 6-8 weeks to see any changes in the RA after the first infusion. Still praying for good results with the xrays and bloodwork then just waiting for the first dose! I\'m more than ready for it, I\'ve gone up to 3-4 pain pills a day and I don\'t like that at all. Granted it\'s only Darvocet but still.... Thanks for keeping me in your prayers! I love y\'all! Link to comment Share on other sites More sharing options...
Farmwife Darlene Posted January 23, 2008 Report Share Posted January 23, 2008 Kenna, you\'re in our prayers! Keep the faith! Link to comment Share on other sites More sharing options...
quiltmonkey Posted January 23, 2008 Report Share Posted January 23, 2008 Hi Kenna-babe... Here\'s to hoping that the infusions work for you and are the solution. Keep us posted. Link to comment Share on other sites More sharing options...
PattyJo Posted January 23, 2008 Report Share Posted January 23, 2008 Kenna - I\'d been thinking of you and wondering how you are. Keep the faith. He is always there and many prayers are hitting His ears in your behalf. We are still praying. Link to comment Share on other sites More sharing options...
Quilting Heidi Posted January 23, 2008 Report Share Posted January 23, 2008 Kenna, Here is a big hug and lots of prayers for you! I hope they find a cure or at least a drug that makes a big difference. Link to comment Share on other sites More sharing options...
jajab Posted January 23, 2008 Report Share Posted January 23, 2008 Kenna, Thanks for showing the picture. I wasn\'t sure what exactly you were talking about at first. My DH Grandmother has some form of arthritis. Her hands are like that too. Has had that for 40+ years. She still does some sewing and she loves to do cross stitching. I will be sending up lots of prayers for you. Angela Link to comment Share on other sites More sharing options...
kennan100 Posted January 23, 2008 Author Report Share Posted January 23, 2008 God bless all of you! It looks a lot worse now than it did in the picture. The med they changed me to so I could get into the trial soesn\'t work as well as the one I was on but I am thankful it works at all! It could be much, much worse. I only have three weeks to go and then the wait while the infusion does it\'s thing, they tell me it won\'t be an immediate difference but will show iver a period of 6-8 weeks. My Dr. asked yesterday if I\'m able to do anything with my quikting and I told him no qquilting at all, not even much applique. The applique is what was making me feel like I was still in the game! He did promise that I\'ll be back at it quickly and that there are even more things coming up meds wise, so I DO have a future that does not include complete disability! WooHoo!!!!!! Link to comment Share on other sites More sharing options...
Bonnie Posted January 23, 2008 Report Share Posted January 23, 2008 With what the doctors can do today, and our prayers things will be good. A little over 2 years ago....hubby fell and shattered his left foot into what they called cornmeal....there were thousands of shards and fragments where his bones had been. With pray and the steady hands of his surgery team, he is walking with a limp, but is walking. You will be appliquéing and quilting in a short time I\'m so sure. Kennan, you are also in my prayers and I too was wondering how you were doing, so glad you sent this update. Link to comment Share on other sites More sharing options...
lyonden Posted January 23, 2008 Report Share Posted January 23, 2008 Kenna - I feel for you. My daughter was diagnosed with RA and Lupus about 12 years ago and she is 47 now. Please keep us posted on this as it might be something that she could use. She has some really bad days but so far has been able to cope. She is terrified she will be in a wheel chair like others she has seen at the doctors office. Link to comment Share on other sites More sharing options...
kennan100 Posted January 23, 2008 Author Report Share Posted January 23, 2008 Carol, Bonnie is so right the Dr\'s and meds nowdays are wonderful. I\'ve had this almost 12 years now, I guess. Probably had it my whole life to some degree but it triggered in \'96, came in full blown severe and without meds that work I\'d be pretty much bedridden. There is so much now, Remicade, Enbrel, Humira, Rituxan and more. Some are infusion therapy adn some are self injectable. ALL are very expensive, even with co-pays on insurance but they work and that\'s what matters! Link to comment Share on other sites More sharing options...
junebug_one Posted January 24, 2008 Report Share Posted January 24, 2008 Oh, Kenna, I am so sorry for all of your problems. Please know that you will be in my prayers . Please keep us posted. Carolj. Link to comment Share on other sites More sharing options...
kennan100 Posted February 13, 2008 Author Report Share Posted February 13, 2008 Well, I was supposed to get the first infusion this morning. Got all the wat over to the Dr\'s office and the final bloodwork had not come back from 2 weeks ago and couldn\'t do it but no one bothered to call and let me know so we can reschedule. I had taken a vacation day today but I went ahead and went into work so I wouldn\'t waste the day. I\'m now resceduled for the first infusion on this Monday morning, and the 2nd one is scheduled for March third. For those who have been remembering my mother in your prayers she\'s doing really well. The physical therapist has been by several times and she\'s doing her exercises (sometimes). She\'s had her first followup and they\'ve adjust her meds and it looks like she\'s going to be ok on this one, There doesn\'t appear to be any side effects which is why she didn\'t like to take her meds before! Her speach is improving daily, and so is her strentgh and co-ordination! She\'s doing very well! Thank you for remembering us! Link to comment Share on other sites More sharing options...
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