While I do respect your opinion and choice of treatments I do object to misleading statements.  By singling out the unknown long term effects of AP you imply that the long term effects of other medications are known.  Some doctors accept only things that are found in clinical trials and ignore years of other sources of information.  I feel that they are depriving their patients of valuable treatments.  I think more is known about the long-term effects of AP than of any of the biologics because AP was in use long before the biologics were even developed.  I am not on AP because I am well controlled by other treatments but I do not want to deprive anyone of a treatment that might work well for them.  God bless.

Age 82, diagnosed RA 12/2001, married since 1952, 4 sons no daughters, 4 grandsons 1 granddaughter.  Doing well on Methotrexate and Remicade.

Really?  I did not know that.  If AP was used for RA before the biologics came along and worked so well, why the need for the biologics in the first place?

(I'm not being argumentative, just curious, one doesn't know unless one asks)

Hugs,

~TS~

"In seeking wisdom thou art wise; in imagining that thou hast attained it - thou art a fool."  Lord Chesterfield

I would think that Biologics were researched and put on the market as an alternative. A pretty good alternative as they do work. Remember not everyone responds to the same treatment and not everyone would respond to AP just like not everyone responds to Biologics. It is nice to know that we don't just have the option of just Asprin anymore.

Take care Jen

RA since I was 13yo, MTX, Actemra, Pred, Mobic, Nexium, Atacand.

Thank you so much for your reply.  I promise to play by the rules and appreciate your input in this matter.

Texas - I get many, many scientific journals and hang on Pubmed and all but one study involving Minocycline for rheumatic diseases has had some sort of positive outcome.  They tend to say it's 'safe for mild to moderate' but since we don't have any studies for severe, its not like we could know for sure.  For that we have ancedotal evidence, such as myself, or the people on the Roadback.  Personally, if I ever hit the lotto, the first thing I'm going to do is a comparitive effectiveness study comparing all the main RA meds head to head for severe recalcitrant RA and run it for 3 years.  So, pray I hit the lotto, would ya?

I was told by 10 docs AP wouldn't work and yet all but one were willing to prescribe.  None were willing to monitor.  At doc 5 I flew out of state for help to one of the top AP docs in the country in Cali.  The other top doc is at Harvard - famous Univeristy of Quackery, apparently.  There are AP docs, not a lot, but pretty much you can find one in the boondocks if you know where to look. 

APers don't believe our immune system is compromised.  We don't think it randomly turned on itself.  Rather we feel the body is doing exactly what it's meant to do; attack a foreign invader.  In this case, it can't quite find the darn thing, but that doesn't mean it's not in the house.  So AP doesn't compromise the immune system, it's enabling it to fight back.  Traditional meds compromise the immune system.  That's how they work.  They 'disable' the bodys' fighting back by lowering it's fight power.  Which makes sense if you think your body is overactive. 

I disagree that I'm pushing AP.  I only reply to posts that I think might be interested because of something they posted.  I will post about things that I've experienced - night time pain etc.  I don't, nor have I ever, attacked Orencia et al.  You want to use them, more power to you.  And I have posted on multiple occassions that I will use a biologic if I need to.  Not Rituxan, but Humira now.  I am, however, extremely tired of you and others like you ACCUSING me of attacking your meds.  I just can figure it out.  Do you think people can't tell that it's YOU saying this and not ME?  Or do you think saying it enough makes it true?  Or can you possibly be unable to remember and if so, why?  So, I invite you to report me if you ever find me doing that.  I don't and I won't so I have nothing to fear. 

As for the long term effects of AP - understand tetracyclines are safe enough to give to pimply faced teenagers and is used in a dose that is much less for what is given them.  People tend to forget that.

I accept your apology in regards to your post and understand how you might be concerned that somehow somebody is attacking your medicine choices.  I assure you, it's not me.  I'm much more concerned about the upcoming Health Care Reform on the table and the politics that are keeping us from getting our cure.

Grandpavan - Thanks!

Pip

PS - Texas - in your last post I think you need to think about it.  An example I can give you is insulin.  It's been around for years and years and the safety profile is pretty benigh.  However, there was no money in it.  Yes, you had patients, and they were taking your medicine for life - but how much profit is there in a off patent med?  Then they decided to 'new and improve it'.  One of the meds released and then pulled for safety reasons was Avandia.  Another starts with an R - hubby can't remember.  The inhalent version has had problem after problem getting to market.  Which is what we're dealing with.  Frankly, all the money they dumped into those failed meds might have got us closer to the cure for diabetes instead of yet another 'therapy'.

Thanks Dude!   I appreciate the respect.  Take care ~~ Cathy

I think you may have inflated my observation/statement a bit.  It's really not that big of a deal, certainly not reportable-worthy, that's just plain silly, I wouldn't do that. 

I'm all for a healthy debate and up for learning as much as possible.    Maybe your passion for AP has come across as over the top and that's what made me feel the way I did.  Sorry 'bout that, don't mean to step on any toes and cause hard feelings. 

We're all here for the same reason and whatever works to make one feel better and improve their quality of life...well, I say go for it!  But when you post in a public forum, you're going to get opinions, some you may not like and that goes the same for me, you and everyone else here.

Take care!

 

Hugs,

~TS~

"In seeking wisdom thou art wise; in imagining that thou hast attained it - thou art a fool."  Lord Chesterfield

Anyway, I like debate!  Its being jumped upon that I don't.  So, I'm always going to welcome your opinion.

Hugs,

Pip

Seems like you were correct and I do owe AF Dude an apology.  Me and tech - lol - I didn't know how to find his reply.

AF Dude -

I apologize for thinking you didn't respond to posts of distress.  I am slow on tech uptake.  Thank you again for posting here so I knew what you said.

Pip

I just wrote a book but the post didn't work so I'll try again.  In my opinion AP is comparable to the biologics in effectiveness but none of the treatments work for everyone.  That's why we continually have new medications being developed.  Also many people try AP and because of the Herxheimer reaction feel it is not working so do not really try it.  Others fail to take probiotics and develop leaky gut syndrome or other problems.

The initial clinical trials I am aware of tried AP only on mild, early-onset patients because they felt that unless it worked on this group there was no point in trying it on others.  This limitation was still associated with AP even when later tests showed it to be effective for fully developed, severe RA that was not successfully treated by other RA treatments.  I could go into more detail if you like.  God bless.

Age 82, diagnosed RA 12/2001, married since 1952, 4 sons no daughters, 4 grandsons 1 granddaughter.  Doing well on Methotrexate and Remicade.

I am not anti-AP. I am very much pro-AP. I believe in the updated recommendation from the American College of Rheumatology, July 2008. Here is their recommendations, including minocycline. This is the July 2008 recommendations from the American college of Rheumatology for the treatment of rheumatoid arthritis. I still believe that it is best to get important life and limb saving information from a real medical organization, institution, or real doctor, not from a non medical organization with a disclaimer that keeps them free from litigation if you loose a joint following their recommendations or information from a non doctor.

Methotrexate or leflunomide monotherapy should be started for patients with all disease durations and for all degrees of disease activity irrespective of poor prognostic features.

Hydroxychloroquine monotherapy is recommended for patients without poor prognostic features, with low disease activity, and with disease duration not greater than 24 months.

Minocycline monotherapy is recommended for patients without poor prognostic features, with low disease activity, and with short disease duration.

Sulfasalazine monotherapy is recommended for patients with all disease durations and without poor prognostic features and includes those with all degrees of disease activity.

Methotrexate plus hydroxychloroquine is recommended for patients with moderate to high disease activity regardless of disease duration or poor prognostic features.

Methotrexate plus leflunomide is recommended for patients with intermediate or longer disease duration (≥ 6 months), with high disease activity irrespective of prognostic features.

Methotrexate plus sulfasalazine is recommended in patients with all disease durations provided they have high disease activity and poor prognostic features.

Hydroxychloroquine plus sulfasalazine is recommended only for patients with intermediate disease duration (6 - 24 months) and high disease activity but without poor prognostic features.

The triple DMARD combination of sulfasalazine, hydroxychloroquine, and methotrexate is recommended for all patients with poor prognostic features and moderate or high levels of disease activity, regardless of disease duration.

Recommendations for the use of biologic DMARDs are separated according to disease duration (< 6 months and ≥ 6 months). The use of antitumor necrosis factor–alpha (TNFα) agents (etanercept, infliximab, and adalimumab) is stratified for durations of 3 months or longer or 3 to 6 months. Anti-TNFα agents can be used interchangeably with methotrexate in patients with early RA who have never received DMARDs and have high disease activity. Patients with early RA and only low or moderate disease activity are not considered candidates for biologic therapy.

An anti-TNFα agent plus methotrexate is recommended for patients with high disease activity for 3 months or longer with poor prognosis and no barriers related to treatment cost and no insurance restrictions to accessing medical care.

In intermediate-duration and longer-duration RA, the anti-TNFα agents can be used interchangeably in patients with inadequate response to prior methotrexate monotherapy, moderate disease activity, and features of a poor prognosis as well as for patients with high disease activity, regardless of prognostic features.

Anti-TNFα agents can also be used interchangeably in patients with inadequate response and at least moderate residual disease activity after previous therapy with methotrexate in combination or with sequential administration of other nonbiologic DMARDs, regardless of prognostic features.

Contraindications to the use of nonbiologic and biologic DMARDs may include infectious disease or pneumonitis, or both; and hematologic, oncologic, cardiac, liver, renal, neurologic, and pregnancy and breast-feeding contraindications.

"Using a formal group process and the scientific evidence as much as possible, we provide recommendations for the use of nonbiologic and biologic therapies in patients with RA when starting or resuming these therapies," the guidelines authors conclude. "These recommendations are not meant to take the place of personalized patient care and are intended to help guide therapy rather than proscribe appropriate therapies. The recommendations are extensive but not comprehensive, and it is intended that they will be regularly updated to reflect the rapidly growing scientific evidence in this area along with changing practice patterns in rheumatology."

http://cme.medscape.com/viewarticle/575597

Ron, is there someone here who is doing that?  Is there a company/drug rep here doing that?  If there IS someone here selling or promoting something that is questionable, I think we have a right to know.  Even if they're NOT being compensated, I'd want to know if that was going on. 

There are so many drugs available to us, different therapies, I for one would like to be better educated about all of them, but I also would like to hear about it from a reputable source.

Hugs,

~TS~

"In seeking wisdom thou art wise; in imagining that thou hast attained it - thou art a fool."  Lord Chesterfield

You totally lost me.  I asked Ron a question and you jumped in attacking Lev from AI and I think you were attacking me too, not sure though. :-/  What is with all of this hostility?

You are wrong, I am NOT a posting member at AI, I've been there maybe 5 times this year.  When I left there last year I changed my email address with that account to some made up random one and changed my password and left!  What's so funny is I was only a member there for a little while because it didn't take long to realize that place was not for me and I think I may have only posted once or twice.

Why are you so infatuated with me being at AI?  What is it over there that has you and 3 or 4 others convinced I'm someone else over there?  I assure you that I'm not.  I've had this problem intermittently ever since I joined this forum and I really want it to STOP!!!!!  TODAY!  NOW!   >:-(

Obviously I can't discuss anything with you or even ask you a simple question because of your defensive attitude so maybe it's best you stay away from my posts and I'll stay away from yours.  I really am floored at this whole thing.  :-O

Ron, if you'd like to answer me please feel free to do so, I'll check back later.

Hugs,

~TS~

"In seeking wisdom thou art wise; in imagining that thou hast attained it - thou art a fool."  Lord Chesterfield

Actually, there are AF people who insist you were a variety of troll personaes on AI.  It's not just the APers.  AF people recognised you.  Or somebody claiming to be you.  As I said before, if your name and reputation has been compromised, I seriously suggest you search Arthritis Insight for Texas Slick.  If you can prove it's not you, contact Ernest Priestly to do something about it.  I'm sure he can prove or disprove who is whom with IP address info.  Good luck with that tho.

I'm waiting for your response to my response to your and Levs tag teaming too.  It's funny how you claim 'defensive' to not comment.  Do you think it's appropriate to do what I've outlined above?  Do you think we should know who is paid to say which drugs work?  There are COL's who've earned over 400K a year to say their drugs 'worked'.  Do you think that should be disclosed to the general population of a BB?

Pip