Question:
Even tho’ I just started Arava one week ago, I read all the lists too, as well as forward them to my RD. (He asked for them) You are doing a great thing for all of us. As long as you can stand it—we’ll be grateful! e-hug, Nina
Response:
Oh yes please keep the list. It is invaluable when a side affect is noted. I think the work you are doing to update the list every week is great. thanks so much Kathy & Dale – Hide quoted text — Show quoted text –
Response:
Dear Shirlawn, I say to keep doing the lists as long as you can handle the work. I read someone who said that you could cut it down to reporting every other week and I think that might be be a good compromise. Since our diseases are cyclical, it’s sometimes hard to know whether there have been any meaningful changes in one week. I definitely wish *everyone* was getting good results but the bad results keep us all humble, I think. Makes it lots harder to take feeling better for granted, for me, anyway. And on a selfish note, please don’t drop the people who don’t report updates to you! Some of us just aren’t around every week on the update day! :) Speaking of which, I’m still at 3+ (am saving that last one in case I can get off all other meds). Off oral gold for 2 months now and have been successful at taking my NSAID every other day (take it more if traveling or otherwise stressed). Will discuss whether sulfasalazine should be reduced at next appt. (take 2 500’s twice a day). Shirlawn, if I can help you in any way to keep up with the lists, please let me know. I’m not able to read the group as much but if I could collate the results on my puter at work or even just send you chocolates <g, let me know. Denise
Response:
Shirlawn – I vote to keep the lists. I know I’m at fault for not keeping you updated the past 2 weeks but I promise to do better. My son and I both got the flu this week and last week I think it was starting up. Anyway, I’ve been reading more than I’ve been writing. But keep it up. I think it does good for everyone, especially those considering starting them. Diane W.
Response:
shirlawn: Please, if you can handle it, continue the lists. I have been on the "up" and the "down" side of the lists. No miracle for me but I do appreciate reading how others are doing even if I may be a negative respondent! By the way I am too late for this week’s list, been away, but I remain at ++ with some pretty substantial flaring going on. Thank again for you work. Pat Berg s
Response:
<<I’ve only seen posts from people like Krissy and I encouraging others. I’m for continuing the lists…as long as you are willing to do it, Shirlawn! I’m sorry for not keeping you updated religiously. I have to say that before I got an enbrel script, the enbrel list looked like a box of chocolates I couldn’t get my hands on <g and I was touched by the encouragement from Kitty and KJ, when their own results weren’t optimal…but, this fluctuating response is one of the very things we wanted to know about when we asked Shirlawn to keep track. I’m absolutely gonna take a list of posts with me to read while they teach me to stab that needle into my thigh…to keep me from limping away, screaming my chicken head off! "See, these people can do it…I can do it, too. Look, Krissy Jo does it twice. Gloria dances while she does it…I bet RoboBabe is flirting with her doctor while she does it! Diane did it on a boat…I can do it…at least, I could if I COULD GET MY HANDS ON SOME!" Sorry, I got carried away there…Shirlawn, I vote thumbs up! Warm regards, Angela "Chaos, Panic and Disorder" –three of the legendary Arthritis dwarves. (Known widely in story and song).
Response:
I am thankful you taking the time doing this list. I have an RD appointment this coming Tuesday and plan on taking it with me. I am positive that my Dr. will love to see it. Thus far he has only 6 patients on Enbrel and not much of comparison to look at. This might help him to get an better all over view. Nocki – Hide quoted text — Show quoted text – Shirlawn, First, I think it has been a wonderful thing you do as re: the list. I know it is quite time consuming. I find them valuable as they have helped in my relationship with my RD. Because he only has a few people on Enbrel and watching the ups and downs of this informal progress report has given him some additional insight. I always redit the list from best to worst/and of course always with Gloria at the top.<g It is extremely important that those not getting good results be included but I do understand why they might get discouraged. I suspect that the enbrel and celebrex lists may eventually get too large to handle and your decision about continuing to collate this info should be based entirely on whether you enjoy doing it or not. I will always appreciate the work you have already done. I have benefitted from your efforts and I want to thank you. johnie
Response:
Dear Group: I have been thinking about evaluating value of these lists, and would like your help.
Hi, Shirlawn. I vote to continue the lists with whatever method you chose to make things easier for you. I look forward to seeing them and do think it is important to know plusses and minuses of treatment. Marj To reply, remove "nospam"
Response:
Should we continue the lists?
I finally agreed with my RD to try another new med, in part, because of what I’d read posted in the lists! This has lead to Enbrel changing my life, everyday. I probably wouldn’t have agreed to a new drug at all if not for the lists. I was in that stage of, "well, the pain is nearly unbearable WITH MEDS, so I’m better off getting all this c**p out of my body. I can take it." NOT! The format as it stands is sufficient, I think, with those who wish posting additional details or anecdotes. As far as dropping off those who’ve stoppped updating, why not? I know the lists must be a headache a times, but know that your efforts are valued and appreciated by so many people. Thanks, shirlawn LeslieQ
Response:
Shirley-What you are doing here is a valuable service to many. And not just the people who are on those drugs, but people making a decision on whether or not to take the drugs. To know possible side effects, that it works for some, but not all, etc. It is all valuable information. Even negative news is helpful. And dont forget—–even investors are watching! The whole world is reading the information you are gathering! This has become too important to stop doing it. JMO Char – Hide quoted text — Show quoted text – Dear Group: I have been thinking about evaluating value of these lists, and would like your help. It has bothered me fron the beginning that it may be a discourageing factor for some
Response:
Both I and my rmd appreciate all the work you do with these lists. Perhaps every two weeks would be sufficient? Not unlike weight loss on diets, results wax and wane with our drug responses too. As for others feeling depression, I have come to learn what a TRULY CARING group ASA is. I doubt few begruge anyone’s progress. And those of us on the newest drugs are the result of failures with all the others that were tried earlier,ie gold injection, Ridaura, plaq., sulfa, mtx. We have had our depressions, too. Please God, that each of us could heal immediately, but that will not happen.
Response:
I vote to keep the lists. Any information we can get about medications is valuable. I applaud the work you have put into them and look forward to seeing the weekly updates. We don’t all get remarkable results but its nice to see others doing so well. Thank you! Sarah L "The problem with people who have no vices is that generally you can be pretty sure they
If you like this post and would like to receive updates from this blog, please subscribe our feed.