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Jennhere said:
Sending a new doc to read that bunch of stories would have to be compelling.
You would be amazed at what a doctor can ignore. Don't forget, they are brilliant and well trained. A little thing like this wouldn't stop the best of them.:X
Umm. Sorry. That wasn't a positive comment, was it?
Maybe not positive, but unfortunately, realistic. There are plenty of anecdotal stories in the book by Scammel, they're wonderbar, but first you have to get someone to read them. I'm also pretty sure most rheumies know about the book, it's very popular in bookstores.
Doctors are trained to use the scientific method, modern medicine is based on science after all. Most of the time this is a good thing, we've made many advances in healthcare in the last 100 yrs because of it. Research and studies are probably where our best hope lies; so it's not so much a matter of convincing docs to use AP because of the wonderful success stories as it is convincing them and the drug companies to do more research. There is a sad truth that for every success story we have, doctors have a failure story. Not because AP doesn't work, but because when people get better they stop seeing their doc, and the doc may assume they stopped coming in because they didn't improve. Also, some people don't respond as quickly as others to AP/MP, and give up on the treatment before it has a chance to work. Doctors have bills, too, and their practice is their livelihood, if a certain therapy is causing them to lose patients they are not going to be enthusiastic about continuing that therapy.
I don't believe this is a hopeless cause, but I have to say that it is a high mountain to climb and we've got a long way to go. I do think the diaries, spreadsheets and stories are a great idea, but they may have more of an influence on our members and those exploring this site than on docs, just like Scammell's book.
It hasn't been that long since AP began to be used by some physicians on a regular basis. Besides Dr. Brown, Dr. S, and a few others, I think most of the progress has been in the last 12 yrs or so. There is research going on at Harvard and the NIH which I believe the RBF supports; there is info in the back of Scammell's book as well as on this website as to where we can send donations. We can also use goodsearch instead of google and specify where we want the money from there to go. I know it's boring to just send money, but money is our biggest obstacle. Every little bit helps.
I think all of this enthusiasm is terrific, there is so much that we can do. It can't move forward fast enough for me, but I just keep reminding myself that all forward motion is progress!Hi Jenn;
Guess it is about time I put in my 2 cents' worth of info on how I got to remission.Mino 200 mg a day,every day for a few years did NOTHING.Had to find out I was Celiac with many food sensitivities,leaky gut and systemic yeast.It took almost 2 years to get these problems under control and the mino helped a bit.Totally changed the procedure,very low dose and pulsed trilogy of antibiotics put me in remissin in an other 18 months.Still rotating Bactrim,Clindamycin,Zith and Mino.If the herx is too bad I just stop the antibiotics for a few days to feel normal for a bit before going back on them.P.S I still marvel at how you have changed from that panicked little girl that first posted here.Good going baby.
Is anyone interested in beginning a diary thread? No discussion… just our diary post that we can edit to update.
Jenn
[user=10]Jennhere[/user] wrote:
Is anyone interested in beginning a diary thread? No discussion… just our diary post that we can edit to update.
Jenn
jenn
Jen, I think this is a great idea. I like the idea of having a 'biography' of each of us, and the ability to see each other's progress. I am doing so well right now, but I am afraid to stop taking my plaquenil, and I am afraid of what's waiting around the corner. It helps to review other's experiences. I would do this.
Bonnie Lou
Bonnie Lou
RA 02/07,AP 10/07
Minocycline 200mg MWF; Plaquenil 100mg 3 days/week
Fish Oil, Ubiquinol, Turmeric, Vit C (2 grams) , MultiVit, Magnesium, Astaxanthin, D3 (5000), probiotics and a daily dose of yoga!Bonnie Lou,
I know the feeling. I've been on Humira, Remicade, and now Orencia for a few years. I have an appt. with the rheumy next Friday, then I'm supposed to get my Orencia infusion. But I have finally decided it's time to stop. I will be telling the doc I'm quitting the infusions for now, I fully expect him to disagree with my idea. I don't ever expect him to think the AP will do the trick, I would just like him to still accept me for labs, xrays, etc. Good luck to you!
Jennifer
A diary style tread for everyone to go back and be able to update would be great!
I personally have an illness diary. I started it with every detail, including that I took antacid tablets for 2 weeks before my foot pain started.
I took this because my Gynecologist said I need to take Calcium because I am 40 now (what a bullsh… that is anyway!)and I started this as a supplement. Did not know that this could lower my stomach acid drastically and allow pathogens to survive. I also did not know that it doesn't do any good without vitamin D anyway. I remember exactly I blamed my foot pain initially to the calcium and stopped taking these antacids. But it just got worse after 3 months.
We may even start seeing similarities between our “oh so different with each one of us” disease. I think we could only learn from this.
It would be like a trial-follow-up of patients and we are all available! Maybe we should even group ourselfs by our illnesses and even our dosing!
Hi JenTX,
This is why the diary would be such a great idea. We could learn from what others have done to help us make decisions. e.g., I quit humira abruptly when I started AP 1.5 yrs ago, and I believe it was partly reponsible for my poor results. I believe the inflammation began to rebound at about the same time the abx began to get thru to the bacteria, thus making it more difficult for the abx the reach the affected areas. I'd begun to see improvement after about 4 months, but then the inflammation and psoriasis slowly began to return. After 1 yr I was worse than ever, I 'd been forced to increase the prednisone, then I had to quit AP due to stomach problems. I'm now on remicade/mtx until my stomach heals or I can find an AP doc who will do IVs. When one of these 2 things happen, I plan to wean off the remicade/mtx, instead of stopping cold turkey. If I had a journal, you could read about that experiece.
I personally am very disappointed that I've had to go back to a biologic; the next opportunity I have to stop the treament I want it to be successful, so I'm going to take it slowly. With remicade I can adjust the dose and dosage schedule, I'm not sure you can do that with orencia; I know with enbrel or humira one only has control over the frequency, not the amt.I'm with you 100% on your decision. Your doc may not agree to continue too see you unless you agree to keep taking the orencia- weaning off slowly might be one way to be able to strike a compromise with him.
I'll hope to be reading your journal entries to see how this works for you, esp since I hope to be joining you soon!
linda
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