Thank you all for joining my pitty party. I was forced to get off the internet etc. cuz i was having a very very down time. I'm dealing with it a bit better today, geting into the thought of "this may be all the help i get" so i am trying to work around it.
When talking about my Bacterial Vaginosis a couple people said to try AP, what's that? I probably know, but can't think of what it is.
I also wanted to especially thank those who have had it hard too for responding. I hate to see others bad, but i have to admit that it is kind of nice to know when you are not alone.
One person talked about using prednisone and paying for it today for doing well in the past. That is what my husband and I think. He said he will take care of me should things go wrong (and boy will he, he already has taken care of me happily). But, to live my good years with motion, maybe prednisone higher doses might be what i need.
Ok, the rest of this is long, you don't have to read it if you don't want to.
I talked with a lady once who had taken it for 20 years and didn't have one ounce of bone problems and she didn't take suppliments either, just never got damaged. So that kind of helps me keep a little thought that i may get lucky like her possibly.
I still haven't heard from the Humira people, they said they will contact me instantly when my rhummy signs the papers, but you all know how she is, so i am calling monday and yelling at them. I pray this drug doesn't hurt me.
Also, still haven't heard from my gynacologist about getting drugs for my BV. They "lost" my papsmear "and" my biopsy, so they didn't write me a prescription on thursday cuz they haven't found them yet and they said that no doctors worked on friday so i have to call monday.
I will not.... WILL NOT... have another biopsy. Those are soooooo very painful and they are always giving them too me cuz my uterus is always swollen. But it comes out clear, drives me nuts.
But, anyway, I am going to be positive and work with what i have. Pred does work for me, doesn't hurt me, doesn't swell me up, but does give me a lip hair or two lol. So if humira doesn't work, i will be living on that.
I also found that a lot of the "odd" swelling i have in the legs etc. has gone down with the use of the nature's way probiotics. So that is nice.
Thanks again everyone, god bless you and i hope the medications work wonders for you.
See! I keep telling everybody - AP or not - to get on probiotics!
AP (antibiotic protocol) is the use of antibiotics to treat RA. Most of the world is into the 'attacking self' description of autoimmune diseases. New research is pointing to intracellular infections which hide in your white blood cells - the very cells designed to protect you from infection. They very well cant protect you if they've been taken over by the enemy, can they. :-)
Lurk on www.roadback.org to learn more about it - seriously, everything they said sounded like Greek to me when I first started there. Also, get the book The New Arthritis Breakthrough by Henry Scammell. It's available on Amazon.com and explains the politics and history of AP in a quick easy to read format. Very inspiring.
BV is a bacterial infection and constant re-infections tell you something is going on with that. It's good that the tests aren't showing anything more serious - but I'm under the impression that you can't be on a biologic with an existing infection. (Anybody correct me if I'm wrong, please jump in). Which means you have to deal with the BV before you get on Humira. I know you don't want another biopsy - but - you need to be sure you are OK.
With AP it is common to get worse before you get better. A constant dose of antibiotics will take care of the BV, probably for good.
Hugs,
Pip
Hi Pip,[QUOTE=kimm]Hi Pip,
I went to see my rheumatologist last week because I really would like to try AP. Well, among other things, she told me it would turn my skin green. Is that true? I've never heard of such a thing.
Thanks so much
[/QUOTE]
HOW DO THESE DOCTORS SLEEP AT NIGHT?????? I think that there is a rare side of skin discoloration, so it isn't a lie, but ask your dr. why dermatologists use THE EXACT SAME MEDS in the EXACT SAME DOSES for TEENAGERS everyday for decades???? How many of your pimply high school classmates turned blue or green???? I suspect NONE. How many took mino, tetracycline, erthromycin???? I suspect A LOT (I took them all). Never never never did my derm say I would change color or get lupus.
Happ - garlic is an antibacterial. I'd think about what you said, but I still can't get past the yogurt for yeast infections. LOL
Kimm - My first thought was 'No, it's blue" doesn't your doctor know that. LOL Green would make you a vulcan!
Seriously, Suzanne it correct. I've found that MD's do what they can by twisting the side effects of Mino to make is seem like it's really dangerous when it has the most minimum side effect profile out there compared to most RA meds. If you want to read the true side effects - go to http://www.amgen.com/ and read the side effects of Minocin and Enbrel yourself. (Not dissing Enbrel people! - I'm trying to point something out).
Most people don't go to the Pharma websites because they don't trust Pharma. So, they go to other sites like Web MD and read about it there. But what they don't realize is that those sites are sponsored - meaning Pharma pays to put the info into Web MD. Now go there and look at the differences. Tell me which is the 'true' side effect profile. The one Pharma pays for...or the one on their own website that, in theory, could get them in a lot of trouble with the FDA if it were false?
That being said - I'd sure as heck take a little blue twinge to my skin over the pain I felt on diagnosis.
Your milage may vary.
Pip
Edited to say - I've been on Mino for over 15 months and no blue yet!
Geez, I just can't shut up this morning!
About the Lupus - there is a thing known as 'drug induced Lupus'. Interestingly, they started reporting this phenomena about a year after the MIRA trials came out - when this had not been reported for decades before when the tetracyclines had been used for acne.
I, personally, do not believe in MIL as I think it's just a herx and you're killing something off. I think if you lower the dose and work your way thru it, you will be fine. I AM NOT A DOCTOR - this is just what I think from all my research and why, if I would have developed MIL I would have continued on Mino. I think I will probably develop Minocin-induced-pneumonitis as I'm a medical side effect magnet and my lungs are the most compromised - and why I intend to stay on my Mino anyway.
But what gets my panties in a bunch is that the way you handle MIL is stop the drug (the symptoms go away). Then, you can switch to Doxycycline. But the MD's don't mention that part.
Pip the panty-knotted!
Your rheumy IS getting kickbacks from Pharma.
Pip
Hi Pip,Sorry, was typing when you were.
On the Roadback is a list of studies. They only use a summary of the studies but if you Google keywords like "Israeli study" and maybe the author you'll find the Pub Med 'real' study. That's a place to start.
Also, on Amazon.com you can order the book The New Arthritis Breakthrough by Henry Scammell. It is an easy, quick read and shows the politics and history of AP along with the science behind it. It's the best darn book you will ever read.
They count remission differently than APer's do. In AP, you are inremission when your labs return to 'normal'. On the biologics they count 'improvement'.
Sorry if I got all twisty!
Pip
Thanks so much Pip! I'll do that! [QUOTE=kimm]H...my doc REFUSES to let me try the Min. My husband and I sat face to face with her and she had a million reasons why it wouldn't be a good thing for me to take it. [/QUOTE]Kim - you just gotta be kidding "green"??????????? I personally am amazed at what some doctors say!!!! When I first was diagnosed with RA I asked about AP and that rheumy told me I wasn't a good candidate for it because my RA came on so sudden and was so aggressive so I never gave it another thought after some of the "normal" meds started damaging my body I was back to square one only this time with a different rheumy and he asked me try AP - he isn't a pro at it so we are learning together and it is working for me big time - I just hit the year mark at end of October. I can't wait to tell him about the green stuff!!!
BTW - your doc works for you and if you want to try AP be sure and remind him/her of that. I figure without us and our illness doctors won't make money and then theywon't feel so full of them selves - so I have no problem demanding they discuss my treatment with me and make darn sure my treatment plan is one we both agree with. Green???
When i take antibiotics now i get horribly sick. I get the chills, stomach kills me, fever and sweats. Unless it is a z-pac, not sure why they are different, but that one doesn't hurt me.
Bubba -
Zith works in a different fashion. It is STILL killing off gut flora tho. I now wonder if the 3 Z-pacs I had from a bout with pneumonia contributed to this RA. I sure as heck didn't know to take probiotics then. And since I now believe all this stuff 'starts in the gut...'
Anyway, those chills, stomach aches, fever, sweats are really common Jarisch-Herxheimer reactions. To APer's - it means the antibiotics are working exactly the way they should be.
APer's are nutty about probiotics - we take way more than the recommended daily dose because we are constantly killing off the good flora too. When I was an idiot and forgot my probiotics for 6 weeks during the move, I had a return of aches and pains in my hands and feet. Taking probiotics are probably THE most important part of AP (outside of the Mino). :-)
Here are some links to info on a 'herx'.
http://www.roadback.org/index.cfm/fuseaction/education.displ ay/display_id/91.html
http://www.roadback.org/index.cfm?fuseaction=education.displ ay&display_id=124
http://en.wikipedia.org/wiki/Herxheimer_reaction
If any of the links don't work - look for an extra space, delete, and try again!
Hugs,
Pip
Edited to say - 2many - you had a doctor suggest it?!?!?! I know I've read here people who did not have the same problems I did getting it but...yeah! Also, congrats on the 1 year anniversary!
Kim,
I have used Enbrel almost since it came out. I have had no side effects whatsoever. I recently ran the Philadelphia marathon. It wasn't as fast as I used to run before RA but I finished. Enbrel gave me my old life back and I am very grateful for that.
Sarah
Hi Sarah,