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Medical Forum / Diseases and Disorders / Arthritis / August 2007Doctors appointment
Well, the antibiotic protocol test is over and it has been stopped. Did nothing for me but I still have 4 months supply of Enbrel to use. I have also restarted Arava again without the starter doses. I did not know that they do not do those any more. Too many people got serious diarrhea. My RD said that his office is handling two different tests on new injectables and one of them will even pay me to take part. I told him that I did not think I would because you really do not know how long the program will last and that I only have a problem with how much Enbrel costs and all the new anti-tnfs are just as expensive. Medicare will pay 80/20 for anything for RA that is intravenous so one of them may be in my future. So it goes. Harv hi harv, i'm sorry the antibiotic treatment didn't work for you. it didn't for me either. i agree with your decision to skip the new trials since you still have enbrel left. but it's good to hear there are a couple new injectables in the trial phase, as i'm definitely at the end of the line with the treatments that exist. (by the way, i was one of the people who couldn't tolerate that arava starting dose! i recall driving one day from fast food restaurant to fast food restaurant to use the restrooms. not fun). diane hi harv; i always read your posts, but i have missed something perhaps. i don't know about the antibiotic treatment except that minison ? that didn't work for me either. do i understand correctly that the enbrel is no longer working for you. glad you went through the tb drugs so you can take the newer drugs. i was ubable to take inh for tb when i was in my 40's as it effected my liver right away. now i am able to take only mtx, and i think the mtx is failing.. thinking of you and hope all goes well. shirlawn > hi harv; i always read your posts, but i have missed something perhaps. i > don't know about the antibiotic treatment except that minison ? that [quoted text clipped - 6 lines] > > shirlawn Hi Shirlawn, No,,,, Enbrel works just fine,,,, in a year and a half,,, I will not be able to pay for it. I will be 70 and my pension and insurance is over then. Arava is generic now and I can take a shot of Enbrel every now and then until the Arava builds up in my system and I hope to be able to stop Enbrel. Ya know,,,, its kind of funny,,,, I did 7 months of TB anti-bio because I had been exposed and the whole time I was in remission and I have been rotating my stock every since. LOL,,, I looked the other day at what I have and they all have the same batch dates... LOL. So it goes. You and your RD have choices now and your liver might of recovered enough to try one of them... We have to have control or what we have wins. You can take a much smaller dose of Meth along with a newer drug to get control back. Arava and Methx are both hard on a persons liver. I guess I will be taking more blood tests now. All part of it. Harv Yup right there with you and Diane on most of those things. The antibiotic treatment didn't work at all - like taking placebo pills and yes I did the cut out sugar stuff and all. The starting dose for arava was horrible! I will say arava did help a little for me before my wbc went down. Have you done remicade Harve? Will they cover orencia or the other name is abatacept. It is infusion too. Diane - have you tried orencia or rituxan? Seems to be working for KJ (orencia) and for Donna (rituxan). My doctor thinks that maybe these are going to work on difficult to treat one - they work on different cell mechanisms than some of the others. Rituxan is working on the B cells. As for new trials - sometimes Harv they will cover the costs beyond the trials even if medical programs won't. Worth asking your doctor. If nothing else it will sometimes help until the other meds are covered as in the case of enbrel. I am sorry to hear this. I know the disappointment too well when it is time to change meds - you aren't in control anymore and the decisions are always tough to make - will it work, how long, how much will it cost and what are the side effects - or do I even want to know. I wish this disease and its treatments were kinder - I empathize. Gentle hugs to you and Diane! Decisions, decisions. Kelly > hi harv, > i'm sorry the antibiotic treatment didn't work for you. it didn't for [quoted text clipped - 7 lines] > > diane > Yup right there with you and Diane on most of those things. The > antibiotic treatment didn't work at all - like taking placebo pills and > yes I did the cut out sugar stuff and all. The starting dose for arava > was horrible! I will say arava did help a little for me before my wbc > went down. Have you done remicade Harve? Will they cover orencia or the > other name is abatacept. It is infusion too. Medicare covers anything that takes a infusion 80/20. Yes, I was on Remicade for about 6 months. I started to break out in a rash all across the lower back area. Itched like fire. My RD and I decided to go back on Enbrel and it calmed down. I , laughing told my RD that I was addicted to Enbrel but the truth of it is that I have another immune system problem called Exima or how ever it is spelled. It took a visit to another specialist to find that out. > Diane - have you tried orencia or rituxan? Seems to be working for KJ > (orencia) and for Donna (rituxan). My doctor thinks that maybe these are [quoted text clipped - 3 lines] > As for new trials - sometimes Harv they will cover the costs beyond the > trials even if medical programs won't. Yes and one of the two will even pay me to be in the trails. My thinking is that I have no idea how long the trials will last and even if they work great for me,,,,, I still will not be able to pay for it later. I was on Arava for about a year after Methx stopped working and it was a good year. If Arava does not pick up where it left off,,,, I will take one of the new drug trails. Hrs Worth asking your doctor. If > nothing else it will sometimes help until the other meds are covered as in > the case of enbrel. [quoted text clipped - 20 lines] >> >> diane kelly, i haven't tried orencia or rituxan yet. i see my doc monday and we'll reassess. i want to give remicade one more round at least. i flared for three weeks after this last time. that's happened before. . . .and then other times, it hasn't happened. my doctor just says i'm weird. :) diane Diane -- I was given a 4 week course of Rituxan while still taking Remicade well over two years ago. It is still holding although the B cells are beginning to climb. RD thinks that it will be soon that I need another dose of the stuff. The FDA approval is for a two week course. I got the stuff before it was approved for RA. See if your RD would give you the Rituxan to boost the effectiveness of the Remicade. Duckie > kelly, i haven't tried orencia or rituxan yet. i see my doc monday and > we'll reassess. i want to give remicade one more round at least. i [quoted text clipped - 3 lines] > > diane duckie, saw the RD today (before i read your post) and we're going to give the remicade another go. i have a feeling i was stressed out as i awaited the cataract surgery. i'm doing fine now, so we'll see how the next infusion goes. glad the rituxan worked so well for you! diane Had my Remicade today -- on a 6 week schedule now [500mg]. See RD again on Sept 17th so we will see what he says at that time re my next Rituxan dose. Duckie > duckie, saw the RD today (before i read your post) and we're going to > give the remicade another go. i have a feeling i was stressed out as i [quoted text clipped - 4 lines] > > diane Harv, I hope all works out for the best for you. You are in my thoughts and prayers.  SignatureLove and Hugs to all Jo the squirrely one > Well, the antibiotic protocol test is over and it has been stopped. > Did nothing for me but I still have 4 months supply of Enbrel to use. I [quoted text clipped - 9 lines] > > Harv > Harv, > > I hope all works out for the best for you. You are in my thoughts and > prayers. Thanks Jo,,,,, I just try to do the best I can with what I have and live each day with thanks for having that day and that is not going to change. Harv I hope you find a solution. It is too bad that what works is so expensive. My thoughts and prayers are with you and your doc to find the right mix. SignatureBe at peace, Alix Be humble. Trust always and a great deal in divine Providence; never never must you let yourselves be discouraged, despite contrary winds. - Saint Pauline of the Agonizing Heart of Jesus (1865-1942) If I could have a wish, it would be that all of this arthritis crap would go away. I know it won't in this lifetime, but so many dear people have to go through so much. It hurts sometimes just to read of all my dear friends and their trials. Know that you are in our thoughts and prayers daily. DeeTee > Well, the antibiotic protocol test is over and it has been stopped. > Did nothing for me but I still have 4 months supply of Enbrel to use. I [quoted text clipped - 9 lines] > > Harv > If I could have a wish, it would be that all of this arthritis crap would > go away. I know it won't in this lifetime, but so many dear people have to > go through so much. It hurts sometimes just to read of all my dear friends > and their trials. Know that you are in our thoughts and prayers daily. > > DeeTee and you in mine and it does make the pain go away and sleep come faster where steps taken as a child or young person are taken again without pain. Harv You know, I have posted this information at least twice before, but it bears repeating yet again! Harv, I really think they could be of some help to you! For those who are having trouble paying for their RA meds, check this site out and contact your doctors to see if this is something that might be of some help and to see if you would qualify based on your income. They currently pay the amounts my insurance doesn't cover on my rituxan, but there are many of our meds on their list as well as meds for other conditions such as PA, AS, RA, Asthma, Kindey failure, cancer, etc. The HealthWell Foundation: Frequently Asked Questions Address:http://www.healthwellfoundation.org/medications.aspx . . . . Donna . . . . 1. ANGELS EXIST, but some times, since they don't all have wings, we call them FRIENDS...... 2. J.K.M.A. {{{{{Harv}}}}}}}} Finding a balance between cost and effectiveness is always a chore. Duckie > Well, the antibiotic protocol test is over and it has been stopped. Did > nothing for me but I still have 4 months supply of Enbrel to use. I have [quoted text clipped - 8 lines] > > Harv |
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