I don’t mind..i’m glad | Arthritis Information

There is, therefore, no doubt that minocycline has a laboratory and clinical effect in rheumatoid arthritis. The question is whether minocycline also has a beneficial effect on the rate of progression of joint damage and on the appearance of new joint damage as seen on X-ray examination. Here the result is not so clear cut. The effects seen have been small.

It may be concluded, therefore, that minocycline is a good drug in terms of symptom relief and joint swelling relief and improvement in laboratory measures of inflammation, but that it has no important affect on joint damage. It is joint damage that is important for the long-term functional outcome in rheumatoid arthritis. Thus, on the present evidence, minocycline should not be recommended as the treatment of choice for early rheumatoid arthritis and not as monotherapy. What is needed are combination therapy studies of minocycline with other disease modifying drugs to see if they can bring additional benefit without increased side effects. Such investigation should particularly focus on the affect on bone damage as detected by X-rays.

Lev - Like youself, I don't get angry about people that don't want to take the "toxic" drugs, because I also know for a fact that those that don't want to take the drugs are no where near as affected by RA as I am. What DOES get me mad is when those same people judge ME for taking them.

I have a history of Melanoma, so should I be taking immumosuppressants? In an ideal world, of course not. But the quality of life issue via immunosuppressive therapy BY FAR outweighs the risk of me developing another Melanoma. I live in fear every day because of the choices I have made, but I NEVER let it interfer or ruin my life.

We all make choices based on the belief that we are doing what's best for US. It's infuriating however, when someone tries to force their choices and beliefs on you.

Like the saying goes, 'Walk a mile in my shoes'....

Gale

Hi, guys. I am also glad for people who have success on ALL treatments-- any success should be celebrated! I have had success on antibiotic treatment for RA. I do not "judge" people who take other meds-- I am happy for them if they are having success. That is always happy news!

I choose not to take some other drugs because of the side effects. Please don't let that anger you, Lisa M. We all have to make these decisions for ourselves. We are all different people with different situations to consider. I am extremely sensitive to medications and always get negative side effects. So, my decision was made, in part, because I know I am extremely sensitive to meds.

I am aware all drugs have side effects. Yes, antibiotics do have side effects. And I have experienced some of these. But they are relatively minor, in my opinion. But we all have differing opinions about what side effects we are willing to risk. My doctors and pharmacists believe that the side effects of AB are minor compared to some other RA drugs. But, again, we all have to make these decisions for ourselves.

I am a very inquisitive person and I choose to question everything. I believe that doctors are not gods and do not know everything. Some are very smart and very well educated. But the fact is, they do not have all the answers when it comes to this disease. Nobody does presently. So we all have to do our own research and come to our own conclusions and theories about this disease.

Lev, antibiotics do work for people with very severe RA. However, they do work more QUICKLY in those that are more recently diagnosed. I had rapid-onset RA, with high labs, that was very debilitating, I could not roll over in bed or even lift my sheets. I am 90% better now. Again, we all have to do our own research and come to our own conclusions about what treatments will work best for us.

Gale, I would never try to force my choices on you. I think we both agree that we have to make our own choices and do what we believe is best for each of us.

Take care and gentle hugs, Karin

Lisa,

I would give anything to have your mindset, anything at all. I am so  up in the air about treatment for RA that it makes me ill just thinking about the treatment, not getting it, thinking about it!

My husband is just like you, exactly.  He wouldn't dream of asking the doctor why this or why that.  He wouldn't have had a second thought.  He would have gone home, filled his prescriptions and then taken them as prescribed.  He would have been fine with them too-he always is. He doesn't understand me at all.  I don't either.

I have no idea why I am terrified of these drugs, the Mtx and the Plaquenil and the Humira...but I am, I am scared to death. I am in pain and I am ill and I feel like hell and I wish I had the courage to just put those drugs in my mouth or inject myself and not think of the consequences---but I can't!

I am going to Iowa to have the clindy IV's and then take minocylin for, what they say, is the rest of my life. Actually, I am going to Iowa to  try the antibiotic therapy. I have no idea if I will react to it, no idea if I will stay on it, no idea what will happen.  But, I have to try it. I do not think it is without problems.  I think (my own opinion) that it's less toxic.  I do NOT have a degree in biology and may be wrong.  It's just that, to me, this is the lesser of the two evils.

A really nice woman PM'd me and told me of her journey with antibiotics and what it did to her.  I believe every word she said and she was intelligent and caring.  She is now on the standard drugs for RA and is doing well. I want to do what she did but, again,I have to try this for myself.

There are times that I think that I may just be in denial and putting off taking the 'real' drugs because when I do that then I admit that I have RA. I keep thinking that my doctor made a mistake, that maybe I don't have it, that I will be one of the 1% that has a spontaneous remission. I think I am still in shock from my diagnosis and haven't come to my senses yet. I know I'm not thinking right yet. My RA factor was over 200.  I think that's pretty definitive.

No, I am not judging you because you're on the standard protocol for RA.  I am jealous of you, I envy you your clear head and your blind trust and your ability to do what is necessary without asking WHY? WHY? WHY?. I hate that I'm like this; I really can't help it. Take care.

[QUOTE=caprice]I don't understand why AP isn't considered toxic. Maybe less toxic, but not free on concequences. Many people have no problem with plaquinil, but I wouldn't consider nontoxic. As someone who has a strong background in microbiology, the idea of being on an antibotic longterm scares me. Long term antibiotic therapy strips the body of natural flora-the good bacteria that protects us from bad bacteria. It can also produce drug resistant strains of bacteria. Studies show that this type of therapy does work. I am not knocking it and I am not saying I would never use this type of treatment but I would no means take AP lightly. What ever works for you is great. I just worried that it is being presented as a problem free treatment. [/QUOTE]

Well the definition of toxic is:

"acting as or having the effect of a poison; poisonous: a toxic drug. "

And poisonous just means it can kill you. And, just about anything can kill you. If you have an allergic reaction to an antibiotic, it can kill you. Heck, if you are allergic to peanuts they can kill you. I guess, just about anything can be toxic to someone.

I think everybody knows that there are side effects to all drugs. We each just have to choose for ourselves what side effects are acceptable to us. In my case, my pharmacists and doctors believe that Minocin has less side effects than Methotrexate, for example. I was also on Minocin all through high school for acne. I still go to the same dermatologist and he said he still prescribes it for acne and he believes it to be a relatively mild drug. These are just their opinions. We each have to form our own opinions. And your opinions may be different.

I am aware that anitbiotics kill the normal, healthy flora. That is why I take 80 billion live organisms a day in my probiotics! I've been told since I was a child to take probiotics while on antibiotics. And I give them to my own children when they are on antibiotics for ear infections, etc.

I wish I didn't have to take antibiotics. I wish I didn't have to take any medication at all. Heck, I wish I didn't have RA. But like someone else said, I think they are the lesser of the evils. It is my OPINION that they have less side effects. But we are all free to form our own opinions and make our own choices.

Love and hugs, Karin

Hi All!

WARNING - THIS THREAD JUST ANGERED ME - READ AT YOUR OWN RISK!  If you decide to respond, please wait 24 hrs until you cool down.

Lisa - I find it interesting that your first post is one designed to cause decisiveness - especially in light of recent posts on AI. 

That being said, your offense at the use of the word "toxic" is what is causing you this problem with AP.  When people tell you they didn't want to take 'toxic' meds it subconsciously makes you question your decision to listen to your doctors and not research your possible treatments for yourself.  A reaction of anger or outrage usually implies the trigger is the problem when most likely the problem is internal. 

As a person who tries to use the term "traditional meds' in place of 'toxic' as a kindness to people on those drugs, I have an innate horror of having to take those medicines.  I have posted before if the doc had said MTX I might have just swallowed the pills like a 'good little patient' but instead he said Plaquenil and I just froze.  Yes, people think the risks with Plaquenil are minor - I DO NOT.  I need my vision and even the smidgen of a possible problem was enough to send me running to research.  It is my reaction.  It is a lot of people's reaction. 

MTX is a chemo drug.  I do not have cancer.  I have an infection.  If a drug is designed to kill cancer, even a drug from decades ago, no thinking person will ever consider that drug non-toxic.  It was designed to be toxic.  A person choosing to take that drug does so usually under tremendous pain and the desire to remove that pain.

What I'd like to know is why are people not happy that AP is working for us?  They instinctively try to turn it into a 'bashing' episode instead of feeling happy that so many people are doing well on a drug with such a minor side effect profile.  And, if AP fails, we can get on the traditional meds 'ladder'.  Or you can get off the ladder.  It is up to you.

Should you want to start researching - I suggest you put your meds up against Mino and read, really read, the side effect profile.  That in itself will convince most people to start with Minocin.

LEV - you know for a fact?  Sweetie, your facts are wrong!  I'm sure my doctors were wrong then when they diagnosed me as 'early onset severe'?  I was on a walker within 4 months of diagnosis and had to use a wheelchair 3 X in the 5th month.  I couldn't sleep and the pain was so bad a sheet would cause me to scream in pain.  My child developed nightmares because I was "too sick to protect me from monsters'.  If she hugged me I screamed in pain.  I watched the clock waiting until I could take my next pain pill.  Mino gave me my life back - and in months - because I lucked out and hit the AP lotto.  But as far as I could see my future wasn't too good with the traditionals so I felt I didn't have a choice. 

As for the NRAS in the UK - I am not familiar with them.  Is that like Arthritis.org?  Because their forum is paid for by Humira.  Or is it a governmental agency.  Like the FDA?  Either way results would not be clear cut and the results would be small - because the MIRA study was 10-15 years ago and very, few, studies have gone on longer than 4 years.  Again, there's no money in AP for a off patent drug.  There seems to be a lot of money to research drugs with patents and amazingly, most of those researchers have financial links to the pharmaceutical company.  Hmmmm.  My point is this - if I have no inflammation I have no joint damage.  Which is why I chose AP.  Should you want to research this - I suggest you go to one of the AP BB's and post a question.  Anybody here on AP 7 years?  Any more damage?  Do you have X-rays?  People will chime in.  Email them.  Talk with them?  Figure it out for yourself.  But don't let some CYA agency make a decision for you.  I called Arthritis.org when I was considering AP.  I was told it wouldn't work and there were no studies.  Since I had already seen studies I knew that wasn't true.  So why was I told that by a group designed to help me?  Maybe it's that Humira connection.  I don't know nor do I care - scared, thinking I might be making the biggest mistake of my life, I went for it.  And it was all true.  It works and it works well.  Period. 

Brisen - oh ye of 15 entire posts.  Who has judged you for taking traditional meds?  Like Lisa, I think you may be reading into things too much.  You have no pain - cool.  If we AP'er's are evangelical it's because we feel we found the way and we want you to feel no pain too.   And, as you can see by my response to Lev I AM as affected by RA as you are.  As is Karin.  But that goes against your set thinking doesn't it?  And, since you asked, NO, you should not be on immunesuppressants.  Not trying to force my opinion and beliefs down your throat, I won't suggest you start looking into the positive effects Mino is showing in cancer research.

Less - you said - (of 34 posts)

I am one who has some pretty severe joint damage from being on the antibioitcs for five years.......... Get those xrays often! I did not have the damage when I was on 400 mg of Plaquenil for the first three years after being diagnosed. The damage started when I cut my Plaquenil doseage in half and went on the AP.

Actually, Less, this isn't quite true, is it?  You've posted numerous times on AI that you were on Plaquenil 13 years.  Plaquenil undoes what you're trying to do with the Mino.  You we're supposed to wean yourself off the Plaq, not stay on it for 5 years.  To lay your joint damage at the feet of AP is ludicris.  Truly, I am sorry you were not able to wean and get your life back, but to say it was AP, and discourage others from trying, is a shame.  You only saw the AP doc 3 times - your regular rheumy should have caught this or consulted or something no matter how gung-ho you were for AP.  Your rheumy sounds criminal.

Caprice - with 20 posts -

AP demands replenishing the gut flora with probiotics, which recent research confirms helps with AI diseases.

You might consider researching AP a bit more in depth.  Mino interferes with reproduction of the mycoplasma.  As it is a older drug it would not be used as a defense in drug resistant strains.  There has never been a case of drug resistant strains linked to Mino.  To be sure, they've never linked it to antibacterial soap and they're always telling us that's going to happen too.  Every microbiologist I've shown info on AP too is fascinated with how it works.  You would be too if you researched and looked at the studies.  Very interesting stuff for scientist-types all over the Internet on this. 

AP is not for sheep.  It's for people that want to fight back and regain their health.  It is not a problem free treatment - it's a place to start. 

Danielle -

Go with your gut instinct.  And keep asking "why!"  I did and I'm so damn glad I did. 

OK, why the focus on the number of posts?  Because this just looked like a set up to me.  A newbie picks a hot topic?  Possible.  But for the most part nobody on this thread has a big history here.  Except Lev.  Which would mean either he got sucked into drama or ???

My point in all this?

AP works.  It works for mild.  It works for severe.  Ap'ers are evangelical, yes, but we don't shove things down peoples throats.  You think the anti-AP people would be damn happy there's another option out there; an option with limited side effects.  But they are not.  Why?  Fear?  Jealousy? Anger that other people question the status quo?

I also notice that many regular RA people don't seem to mind AP - they like the possibility of another option.  Just a core group of...what...and more importantly...why?

Give it up - it works - be happy for us.

Now - I will not be here tomorrow because I am so angry right now I just can't think straight.  To think people send emails to newbies like Danielle discouraging a promising treatment and maybe are not offering the entire story....it sickens me.

Pip

Pip- Where, exactly, did I say that anyone on THIS board has judged me about my treatment regime, and where did I say I have no pain. Ummm...I didn't. And where on earth do you come off questioning Lev, Less, Caprice, and myself based on our number of posts?

I'm really fuming over your post, so I'm going to take your advice and cool off. You haven't heard the last from me though.

Hi All!

WARNING - THIS THREAD JUST ANGERED ME - READ AT YOUR OWN RISK!  If you decide to respond, please wait 24 hrs until you cool down.

Lisa - I find it interesting that your first post is one designed to cause decisiveness - especially in light of recent posts on AI. 

That being said, your offense at the use of the word "toxic" is what is causing you this problem with AP.  When people tell you they didn't want to take 'toxic' meds it subconsciously makes you question your decision to listen to your doctors and not research your possible treatments for yourself.  A reaction of anger or outrage usually implies the trigger is the problem when most likely the problem is internal. 

As a person who tries to use the term "traditional meds' in place of 'toxic' as a kindness to people on those drugs, I have an innate horror of having to take those medicines.  I have posted before if the doc had said MTX I might have just swallowed the pills like a 'good little patient' but instead he said Plaquenil and I just froze.  Yes, people think the risks with Plaquenil are minor - I DO NOT.  I need my vision and even the smidgen of a possible problem was enough to send me running to research.  It is my reaction.  It is a lot of people's reaction. 

MTX is a chemo drug.  I do not have cancer.  I have an infection.  If a drug is designed to kill cancer, even a drug from decades ago, no thinking person will ever consider that drug non-toxic.  It was designed to be toxic.  A person choosing to take that drug does so usually under tremendous pain and the desire to remove that pain.

What I'd like to know is why are people not happy that AP is working for us?  They instinctively try to turn it into a 'bashing' episode instead of feeling happy that so many people are doing well on a drug with such a minor side effect profile.  And, if AP fails, we can get on the traditional meds 'ladder'.  Or you can get off the ladder.  It is up to you.

Should you want to start researching - I suggest you put your meds up against Mino and read, really read, the side effect profile.  That in itself will convince most people to start with Minocin.

LEV - you know for a fact?  Sweetie, your facts are wrong!  I'm sure my doctors were wrong then when they diagnosed me as 'early onset severe'?  I was on a walker within 4 months of diagnosis and had to use a wheelchair 3 X in the 5th month.  I couldn't sleep and the pain was so bad a sheet would cause me to scream in pain.  My child developed nightmares because I was "too sick to protect me from monsters'.  If she hugged me I screamed in pain.  I watched the clock waiting until I could take my next pain pill.  Mino gave me my life back - and in months - because I lucked out and hit the AP lotto.  But as far as I could see my future wasn't too good with the traditionals so I felt I didn't have a choice. 

As for the NRAS in the UK - I am not familiar with them.  Is that like Arthritis.org?  Because their forum is paid for by Humira.  Or is it a governmental agency.  Like the FDA?  Either way results would not be clear cut and the results would be small - because the MIRA study was 10-15 years ago and very, few, studies have gone on longer than 4 years.  Again, there's no money in AP for a off patent drug.  There seems to be a lot of money to research drugs with patents and amazingly, most of those researchers have financial links to the pharmaceutical company.  Hmmmm.  My point is this - if I have no inflammation I have no joint damage.  Which is why I chose AP.  Should you want to research this - I suggest you go to one of the AP BB's and post a question.  Anybody here on AP 7 years?  Any more damage?  Do you have X-rays?  People will chime in.  Email them.  Talk with them?  Figure it out for yourself.  But don't let some CYA agency make a decision for you.  I called Arthritis.org when I was considering AP.  I was told it wouldn't work and there were no studies.  Since I had already seen studies I knew that wasn't true.  So why was I told that by a group designed to help me?  Maybe it's that Humira connection.  I don't know nor do I care - scared, thinking I might be making the biggest mistake of my life, I went for it.  And it was all true.  It works and it works well.  Period. 

Brisen - oh ye of 15 entire posts.  Who has judged you for taking traditional meds?  Like Lisa, I think you may be reading into things too much.  You have no pain - cool.  If we AP'er's are evangelical it's because we feel we found the way and we want you to feel no pain too.   And, as you can see by my response to Lev I AM as affected by RA as you are.  As is Karin.  But that goes against your set thinking doesn't it?  And, since you asked, NO, you should not be on immunesuppressants.  Not trying to force my opinion and beliefs down your throat, I won't suggest you start looking into the positive effects Mino is showing in cancer research.

Less - you said - (of 34 posts)

I am one who has some pretty severe joint damage from being on the antibioitcs for five years.......... Get those xrays often! I did not have the damage when I was on 400 mg of Plaquenil for the first three years after being diagnosed. The damage started when I cut my Plaquenil doseage in half and went on the AP.

Actually, Less, this isn't quite true, is it?  You've posted numerous times on AI that you were on Plaquenil 13 years.  Plaquenil undoes what you're trying to do with the Mino.  You we're supposed to wean yourself off the Plaq, not stay on it for 5 years.  To lay your joint damage at the feet of AP is ludicris.  Truly, I am sorry you were not able to wean and get your life back, but to say it was AP, and discourage others from trying, is a shame.  You only saw the AP doc 3 times - your regular rheumy should have caught this or consulted or something no matter how gung-ho you were for AP.  Your rheumy sounds criminal.

Caprice - with 20 posts -

AP demands replenishing the gut flora with probiotics, which recent research confirms helps with AI diseases.

You might consider researching AP a bit more in depth.  Mino interferes with reproduction of the mycoplasma.  As it is a older drug it would not be used as a defense in drug resistant strains.  There has never been a case of drug resistant strains linked to Mino.  To be sure, they've never linked it to antibacterial soap and they're always telling us that's going to happen too.  Every microbiologist I've shown info on AP too is fascinated with how it works.  You would be too if you researched and looked at the studies.  Very interesting stuff for scientist-types all over the Internet on this. 

AP is not for sheep.  It's for people that want to fight back and regain their health.  It is not a problem free treatment - it's a place to start. 

Danielle -

Go with your gut instinct.  And keep asking "why!"  I did and I'm so damn glad I did. 

OK, why the focus on the number of posts?  Because this just looked like a set up to me.  A newbie picks a hot topic?  Possible.  But for the most part nobody on this thread has a big history here.  Except Lev.  Which would mean either he got sucked into drama or ???

My point in all this?

AP works.  It works for mild.  It works for severe.  Ap'ers are evangelical, yes, but we don't shove things down peoples throats.  You think the anti-AP people would be damn happy there's another option out there; an option with limited side effects.  But they are not.  Why?  Fear?  Jealousy? Anger that other people question the status quo?

I also notice that many regular RA people don't seem to mind AP - they like the possibility of another option.  Just a core group of...what...and more importantly...why?

Give it up - it works - be happy for us.

Now - I will not be here tomorrow because I am so angry right now I just can't think straight.  To think people send emails to newbies like Danielle discouraging a promising treatment and maybe are not offering the entire story....it sickens me.

Pip

Well,

I didn't realize that there is a riff over types of treatment. I know that there is a couple of threads about pharma-pay-offs and pharma-plants on forums in order to boost sales but it seemed so ridiculus that i just skip that thread. I was in no way taking sides on the subject of treatments. When i mentioned toxic medicines i was including AP treatments along with all the others.

I am a firm believer in the "do your own thing" and was not making a statement for a side. As far as i am concerned you can go to the dead sea and bathe in it and take mud baths. You can drink horse urine. You can send Reverand Willie Snake a thousand dollars for his personally blessed miracle water. I continue to try natural cures and have found a couple that somewhat ease the pain but i will continue to try "snake oils" and am waiting on a new one that i ordered with great expectations.

I do not endorse any drug or treatment over the other and rely on my Doctors to be knowledgable and as some on this board suspect, not "paid off" by big pharm and i just don't believe that they are that type of low lifes. But i can be wrong. I don't believe that all of my Doctors would allow me to suffer because big pharm is paying them but, i will ask each and every one of my Doctors to be sure. I only posted the information about AP as to show the interworking of AP and other drugs.  I believe that the cure is just around the corner and all i have to do is make it to the corner and i am doing it in a kind of always scary inside. Hey, i am extremely sick. I have Rheumatoid Arthritis.

LEV

Hey, come on guys. We are all in the same boat, some of our boats are harder to manage than others but we're in the same boat nonetheless. We're here to help each other and to discuss options.

I received a few PM's from really, really nice people who were genuinely concerned.  I don't want anyone to think that these people wrote to me and said don't dare try AP or you'll be dead in 6 hours.  No way.  One told me I'd be in a wheelchair in two years if I didn't start some kind of therapy but that's exactly what my physician told me too. They were concerned and related to me their experiences on AP and I always welcome that input.  More data to go through the subconscious at night allows me to make my day decisions easier. These people had very poor experiences on AP, so they told me.  If they had experienced the same damage and exacerbation of illness on DMARDS I would appreciate knowing that too.  That's how some of us have come to decide to try AP, because we have heard stories of damage on DMARDS. Thanks to the information highway we can hear all sides of the story and I really appreciate that.

I am so tired and not feeling well  and just exhausted emotionally and physically but never angry with anyone for letting me know their opinion. I value every piece of information that I can get, whether or not I like it, I am thankful to get it.

Yup, I am on the fence, teeter tottering. When I read a post and it says, "Hit it hard and hit it early" then I want any drug that I can get my hands on, now, today, all of them. Then I will read somewhere on another board that a patient experienced severe damage to the kidneys on traditional meds and I think, "No way, I won't go there."

I am scared and I am confused but I always need your support and I would love for us to be able to discuss these differences in this type of forum.

Let's not throw the baby out with the bathwater.   

I am kinda shocked at your response.  Everyone has a story to tell and everyone chooses the pathway best for them.

It is very closed minded to think that people that used AP and report it did not work for them, are wrong in some way or need to be quizzed on what they did wrong.

It's great for the ones it works for but there are the ones that it did not work.  Just a fact of life.

Blessings,

LuAnn

OK Pip, I'm somewhat calmer today, so hopefully I can try and explain what would have come out all wrong when I first read your post.

Somehow you misconstrued my post to mean that I was attacking AP therapy. The point I was trying to get across was my frustration at people not understanding the choices I have made in light of my melanoma history, and the reference I made to 'toxic' medications, included AP therapy along with all the other hard core biologics.

I'm fairly new to this board (as you made sure to point out by my mere 15 posts) and I really don't understand why this would disqualify me from having an opinion. In the week that I have spent here reading posts, it appears that this is not a very user friendly board. You win, I'm outta here.

[QUOTE=BeeBee]Surely, as has been written in this post, everyone is happy if/when any
treatment plan is helping anyone with RA. It is a serious disease. The
concern for many people is that the AP people promote their treatment,
over and over on every RA site there is. Why? Because most doctors do
not recommend it to anyone with a more severe form of RA. It is their
promotion that really angers me.

Anyone can say they have severe RA. Who is to know on the internet?
Anyone can say they have been put into remission, cured of RA. All you
have to do is google cure RA. But there is no cure. No Cure. Meanwhile,
people in the beginning are scared of the drugs and for some reason
think anitbiotics are safer. They are not.

Now, all the recent research points to aggressive treatment immediately.
Not a year or two after you try AP (and have the damage to prove it). Hit it
hard and early, and you might have a normal life. But people read the AP
stuff and try that and they will be damaged. Please, if you trust your
doctor-ask about the various options and research it.

Use all the AP you want but leave everyone else alone.

Bee[/QUOTE]

Bee:

I agree we are all happy for everyone that is on a treatment that is working.

I don't think anyone is promoting AP on any site. We simply discuss out treatment, the same as everyone else does. And we have a right to do that. This site is a site made to discuss RA. Not made to discuss RA, and one particular treatment plan.

You said to leave you alone. We are leaving everyone alone. We have said over and over that everyone is free to make whatever choices they wish.

You said that if people try the "AP stuff" they will be damaged. That is not true. AP has saved my joints and given me my life back. What do you have against it? It is a valid treatment that works and is approved by the American College of Rheumatology.

I think what Pip is upset about is the fact that so many "new" people are registering on this site just to discuss and argue about AP. It seems very suspicious; and a lot of the verbage seems like it is the same poster posting over and over under different names. It is very apparent to many of us that we have an internet troll on this site.

Take care and pain free days to everyone, Karin

[QUOTE=anna_uk]i am surprised when people talk about choice.   there is no choice if you have the same as me.    its either meds or nursing home as i would not be able to get out of bed or wipe my own bottom, get dressed or feed myself.  choice ...  bashhh....   a friend of mine had disasterous results with AP so im not going there.    anna [/QUOTE]

Anna: We all have choices to make for ourselves. There are many different medications to choose from. My first rheumatologist sent me home with a brochure for Enbrel, Humira and Remicade, and said, "You decide, they all work in the same manner." I chose AP, and although my first rheumy was willing to administer it, I chose to go to an AP specialist. We have lots of decisions and choices to make. And yes, some may even choose no meds at all or a wheelchair. That, too, is their choice. Maybe they prefer a wheelchair to even a slight risk of an infectious disease that could kill them. That may not be my choice, or yours, but we all need to respect each other's decisions.

Take care, Karin

Wow Pip,

I am kinda shocked at your response.  Everyone has a story to tell and everyone chooses the pathway best for them.

It is very closed minded to think that people that used AP and report it did not work for them, are wrong in some way or need to be quizzed on what they did wrong.

It's great for the ones it works for but there are the ones that it did not work.  Just a fact of life.

Blessings,

LuAnn

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LuAnn: I just wanted to let you know that I am very inspired by your treatment and think it is very exciting! I have read your posts on several message boards and I know I have told you before how happy I am for you. I have even referred several people to your website to read about your journey (You have an ADORABLE little girl by the way).

I think people on AP just want to be free to post about their treatments and successes, just like you, without being criticized or accused of "promoting" AP.  I have never seen anyone accuse you of "promoting" stem cell transplants.  For some reason, there are a few people who have a bone to pick with AP. I am not sure why. I think we all know everyone is free to make their own choices-- so why do some people get so threatened if we bring up AP? It is very strange.

Take care and continued best wishes with your amazing treatment! So excited for you! ~Karin

Lindy - I came to this board hoping I might be able to talk to someone who had first hand experience with Orencia. I put myself out there and responded to a few posts, and the next thing I know I'm being totally taken out of context and basically being called an internet troll.

I didn't come to this board to discuss and argue AP as Karin intimated. In fact, I know very little about it. I came to learn and possibly share what has worked and what hasn't worked for me.

I'm sorry there is so much controversy over treatment options on this board, especially AP vs traditional therapies. I never intended to become involved in that discussion, I was only trying to point out how hard it's been for me to justify to myself and others the immunosuppressive therapy that I have chosen.

One thing that is important in fighting both RA and Melanoma, is to avoid stress. I guess I'm just finding this site very stressful right now, and that is why I have made my decision to leave. I may still check in occasionally to see if there have been any new treatment success stories with Orencia, but I don't plan on posting. It's obvious this board is only for the very 'elite' long time posters, not someone with only a handful of posts such as myself.

Lindy - I came to this board hoping I might be able to talk to someone who had first hand experience with Orencia. I put myself out there and responded to a few posts, and the next thing I know I'm being totally taken out of context and basically being called an internet troll.

I didn't come to this board to discuss and argue AP as Karin intimated. In fact, I know very little about it. I came to learn and possibly share what has worked and what hasn't worked for me.

I'm sorry there is so much controversy over treatment options on this board, especially AP vs traditional therapies. I never intended to become involved in that discussion, I was only trying to point out how hard it's been for me to justify to myself and others the immunosuppressive therapy that I have chosen.

One thing that is important in fighting both RA and Melanoma, is to avoid stress. I guess I'm just finding this site very stressful right now, and that is why I have made my decision to leave. I may still check in occasionally to see if there have been any new treatment success stories with Orencia, but I don't plan on posting. It's obvious this board is only for the very 'elite' long time posters, not someone with only a handful of posts such as myself.

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Brisen, I was not talking about you when I said that there are some trolls on this board. An internet troll is somebody who hides behind a fake name, and you have not done that. I do not think you are one of them at all. Sorry you thought that. I do not think you are here to argue about AP, but the person who started this thread, for example-- it was their first and only post. I find that a little odd. I hope Orencia goes very well for you! I would never condemn you for any choice you have made! Take care and I hope wou find what works for you! Hugs, Karin

Posted by Brisen....It's obvious this board is only for the very 'elite' long time posters, not someone with only a handful of posts such as myself.

That post made my heart sink.  That is not true at all and I for one am very sorry you would even feel that way.  I have no idea how many posts I have as I've never felt it was important.  What I do know is that at one point I had 1 then 2 then 3 then 4 and so on.  If I was able to help someone with 1 post out of 50 then that 1 post was the only one that really mattered.

As for the topic at hand....Oh my, hmmmm....

Everyone please try to remember that we are all sensitive to our illnesses and the treatments we use.  Whether they are working great, middle of the road or not well....we are sensitive.  Trust me when I tell you that if a treatment was working for me and I had my life back, I'd practically be shouting from the roof tops because I would want to share the possibility of everyone feeling so good.  People are here to share their experiences good and bad.  We all know that what works for one person doesn't mean that it will work for another and vice versa however, as I've said in many posts....it gives us options and options are always a good thing.  For instance, look at how many people have had wonderful luck with MTX and it has truly been a life saver for them...then there are people like me that just cannot tolerate the drug at all.  Whether you're doing AP therapy, conventional or something entirely different....if it's working, that's all that matters.  If eating a cup of elephant dung every day would insure that I would feel great, be  pain free and never be tired again....you can bet your bippy I'd find some way to eat that dung! 

These illnesses we have are frightening and confusing leaving us sensitive and emotional...completely understandable.  I'm happy for people doing well regardless of which path they have chosen...the important thing is....It's working for them and that my friends IS HOPE.  Hope that those of us still suffering might find something that works for us too.

Peace & Love...Neasy

I completely agree with Neasy! What a sweet, eloquent lady! We all want everyone to find a treatment that works for every one of us! And HOPE is very important in RA. So it is always wonderful to hear about a treatment that works! I love hearing about LuAnn's stemcells, for example. That provides many people great hope! I love hearing that AP is working for Pip, too, and that Enbrel is working for Sarah. Hey, if you are feeling good, that is always wonderful news! I just do not like when people say that I am "promoting" AP. That is not the case! Do I want to share my good fortune in finding a treatment that works? Of course! But I am in no way promoting or marketing this treatment. I do find it odd that there are several ANTI-AP posts that are very argumentative that have been the poster's first and ONLY post ever! Someone is trolling, and that is not nice; it is cowardly. If you think AP does not work or only works in mild cases, I have plenty of studies to share with you that say otherwise. Feel free to send me a PM.

Take care all. And may you all find a treatment that works for you! Peace and love, Karin

Thank you Karin for the clarification of your post, and the PM. :)

I guess what I would like everyone to understand is that having  been a member of  this board for less than a week, I haven't had time to read all the current posts. Apparently however, there has been an ongoing feud between AP and traditional therapy, and I guess I stepped right smack dab in the middle of it.

When I commented to the person who started this thread, I was only agreeing that it's a shame when someone lambastes you for the choices you make. I was NOT referring to AP vs traditional/biologic/toxic/whatever you want to call it. To me, ALL medications are 'toxic' to a certain degree (AP inclusive with the others) and I was only referring to MY treatment choices. Nowhere in my post did I compare AP against traditional.

I am sorry if I have offended anyone with any of my posts, as it was never my intention. I came here with one goal, to learn all that I can about RA and it's many treatment modalities in the hope of making the best and most informed decision for ME.

Kudos to all of you who are having success with WHATEVER treatment you are on!

Gale

Dear Gale: You have not offended anyone. You did not say or post anything wrong! You have absolutely nothing to apologize for!

Please stay and post here. You will learn a lot about RA, Orencia, and the many treatments available.

Take care. May you be well soon! ~Karin

I was thinking that though, when someone threatened to leave the board.  I was like, dang, I didn't even have anything to do with that.

Phats