Little Lymphoma Risk Seen With New Arthritis Drugs

[Suzanne]

I agree with everyone, Linda – please stay around! 

More on the topic of studies:

http://pharmagossip.blogspot.com/2009/06/negative-studies.html

“Negative Studies In A Positive Light”

From the link:
Archives of Internal Medicine[/b], Editorial, Volume 169(11), 8 June 2009, p 1022?1023
Editorial Policies and Publication Bias: The Importance of Negative Studies[/b][/i]
Author(s):1, 2, 3, 4 Authors, editors, and peer reviewers all participate in this favoritism toward publication of positive results. An obvious outcome of the bias toward overpublication of positive results is that many treatments or exposures are overrated in the published literature. Some critics have gone so far as to claim that publication bias results in ?most published research findings? being ?false.?5 Although most researchers, reviewers, and editors would probably believe that such a claim is far too harsh, an unquestioned result of the overwhelming bias to publish mostly positive studies is that subsequent meta-analyses are distorted and result in promoting existing scientific biases.

Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.

[Joe M]

Hi all,

Since we are being so critical of correlation studies, does it bother anybody that the RB Foundation is using a Harris on-line poll to promote the benefits of AP?  If anyone were to ask me for studies showing AP efficacy, I would point them to MIRA or the ODell study, not an on-line poll.   If some group I have never heard of pointed me toward a poll as evidence, my bs detector would start going off.  Fortunately RB has double-blinds to support the poll.  I wonder if it was the need for something more current that led to the commission of this poll?  

[linda]

I will try. Being on 7.5 mg pred with this level of active disease is making life very tough, esp things like sitting at the computer. I'm getting a laptop in a few weeks, maybe that will help. At the very least, you're all making it very hard to disappear!

[Trudi]

[user=11]linda[/user] wrote:

At the very least, you're all making it very hard to disappear!

Good!!  🙂

 

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[justsaynoemore]

[user=20]Joe M[/user] wrote:

Hi all,

Since we are being so critical of correlation studies, does it bother anybody that the RB Foundation is using a Harris on-line poll to promote the benefits of AP?  If anyone were to ask me for studies showing AP efficacy, I would point them to MIRA or the ODell study, not an on-line poll.   If some group I have never heard of pointed me toward a poll as evidence, my bs detector would start going off.  Fortunately RB has double-blinds to support the poll.  I wonder if it was the need for something more current that led to the commission of this poll?  

Frankly, with all the stories coming out about falsified studies, tainted studies, bribery, etc., I am glad AP hasn't had a study in past decade.  My study of one says its working just fine, for me. 

[Forum Admin]

[user=20]Joe M[/user] wrote:

Since we are being so critical of correlation studies, does it bother anybody that the RB Foundation is using a Harris on-line poll to promote the benefits of AP?  If anyone were to ask me for studies showing AP efficacy, I would point them to MIRA or the ODell study, not an on-line poll.   If some group I have never heard of pointed me toward a poll as evidence, my bs detector would start going off.  Fortunately RB has double-blinds to support the poll.  I wonder if it was the need for something more current that led to the commission of this poll?  

A Harris Poll was commissioned by Road Back and conducted during the month of October 2005, the results of which were published in early 2006. The purpose of this poll was to assess patient experience of Antibiotic Therapy for both rheumatoid arthritis and scleroderma and considered a viable means to collect data directly from patients who have chosen this treatment option. 

https://www.roadback.org/index.cfm/fuseaction/aboutrbf.display/display_id/360.html

Polls of any kind are opinion-based, subjective studies of various target populations and are not considered scientific in nature except in terms of data collation. They are regarded as legitimate means for determining overall end-user experience by many organisations. The Arthritis Foundation has run Harris Polls for various purposes on a regular basis and deems this information to be worthy of their investment and a valuable informational resource.

For example, in 2004, the Arthritis Foundation commissioned a Harris Poll to assess patient experience of standard rheumatologic DMARDs and biologics. You can read the results of this poll here:

http://www.longtermcareprovider.com/article.mvc/New-Survey-Shows-70-Percent-Of-Rheumatoid-Art-0002?VNETCOOKIE=NO

This particular Harris Poll provides a sound basis for comparison to the one commissioned by Road Back in terms of assessing patient experience of treatment of choice, specifically for rheumatoid arthritis.
 

[Tiff]

RBFV,

Thanks for posting those surveys.  It is interesting how they describe things in a pretty gloomy manner, how patients are miserable and feel uninformed, but then at the end cheerfully chip in how the Arthritis Foundation has done so much.  I do not want to be overly critical.  I don't know enough about this organization to rip them apart, but I will say that arthritis seems to me to be the most ignored disease there is considering how fairly common it is.  I consider myself pretty broadly informed on issues, but until this hit me, I had no comprehension at all how terrible these diseases really are.  The over all impression you get from the media is one of minor inconvenience to the aging population and “a few” unfortunate younger people.  My daughter has commented something to the same effect after her awareness went up.  She said the TV commercials she saw while at the college were laughably misleading.

If this is the work that foundation has done, it is woefully lacking when compared to the awareness for breast cancer, for AIDS (which are deadly), but also compared to MS and muscular distrophy, and especially diabetes – which gets lots of attention (and funding) and education.  Why is RA ignored?  I really want to understand that, and I find myself blaming this organization which claims to be “the only non-profit organization” that helps this group of 100 different diseases!

Here is another article that brings up some controversy.  I am not against research for alternative health – on the contrary, I think it is great, but how to allocate taxpayer money is always a tough call.  Surely there could be some more funding for AP if those survey results are used as an indicator (for more research – not as research themselves).

http://www.msnbc.msn.com/id/31190909//

 

[Suzanne]

The title from article about the Arthritis Foundation's survey –

New Survey Shows 70 Percent Of Rheumatoid Arthritis Patients Receiving Treatment Are Still Impaired Every Day

That is more than half, but not all respondents were on biologics.  Some were just on one or two DMARDS.

Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.

[Tiff]

Suzanne,

It makes me wonder if the approach the mainstream is taking is just bad all around.  Would we see better results if people were treated early with biologics?  Have they tried this, or is it required that people fail DMARDs first?  I just don't see any aggressive plan of action.  It all feels random and haphazard to me!  And it also feels like the disease is not taken seriously enough because, quite frankly, people don't die within a year or two.  No wonder I am dreading meeting my newest doctor this month.  Can you tell by my posts I am getting anxious about it?  Ugh!  :headbang:

[Joe M]

Deep breaths Tiff. 

I was going to make the same point – the Arthritis Foundation poll leaves many unanswered questions.  What is the average age of the participants?  How long have they been on their current meds?  Would their outcomes have been different if they were treated aggressively at first, or were they treated aggressively?  RA has so many variables to begin with, it is hard to draw any conclusions from these kinds of studies, but I do not think that was the goal.  I think the goal of the Arthritis Foundation was to get more funding for the Arthritis Foundation.

[Susan LymeRA]

[user=18]Suzanne[/user] wrote:

The title from article about the Arthritis Foundation's survey –

New Survey Shows 70 Percent Of Rheumatoid Arthritis Patients Receiving Treatment Are Still Impaired Every Day

That is more than half, but not all respondents were on biologics.  Some were just on one or two DMARDS.

That is almost in keeping with the 40% success ratio I read on methotrexate when I was first diagnosed.  AP had a 70% success ratio and yet the doctor screamed at me for wanting to do it.

I know oldtimers are aware of this but do newbies realize AP is FDA approved as a treatment for RA?  I sure would not have known it by my rheumie's reaction when I asked for it.

[justsaynoemore]

[user=86]Susan Lyme/RA[/user] wrote:

I know oldtimers are aware of this but do newbies realize AP is FDA approved as a treatment for RA?  I sure would not have known it by my rheumie's reaction when I asked for it.

Susan – the FDA has not approved Minocin for the treatment of rheumatoid arthritis.  But I don't know about “AP” being approved, so will have to look into that one. 

The American College of Rheumatology recommends minocin for mild rheumatoid arthritis, but that is it, I believe. 

If I am wrong, somebody, please let me know.  Thanks ~~ Cathy

[Maz]

[user=394]justsaynoemore[/user] wrote:

Susan – the FDA has not approved Minocin for the treatment of rheumatoid arthritis.  But I don't know about “AP” being approved, so will have to look into that one. 

Hi Cathy,

This is true. However, minocycline is approved for the “off-label use,” treatment for rheumatoid arthritis. What “off-label” means is that physician's may use minocycline for purposes other than which a drug was originally designed at their discretion in individual patient cases for RA. Many RA DMARDS fall into this same catagory, including plaquenil (designed originally to treat malaria) and methotrexate (originally designed for short-term use as a chemotherapeutic drug).

Here is further info on the main site:

https://www.roadback.org/index.cfm/fuseaction/studies.display/display_id/183.html

“Modern trials have provided sufficient evidence of the effectiveness and safety of tetracycline derivatives that should allow an almost certain approval by the FDA for the use of minocycline in the treatment of RA if a formal application were submitted to the agency. Unfortunately, the oldness and generic availability of tetracyclines make it commercially non-viable for drug companies to pursue this FDA track. Physicians are thus left with an “off-label” usage designation for the use of tetracyclines in the treatment of RA.”

Additionally, although the American College of Rheumatology (ACR) has given minocycline its formal approval for use in early, mild cases of RA, this is likely because MIRA study subjects fell into this catagory and subjects with more severe cases were not selected for the study. With no stats on this population of RA sufferers, the ACR has only given its approval for those who mirror the successful study population. 

There is probably good reason for not selecting more severe cases in a double-blind study, such as MIRA. It's the reason Dr. Brown could not in all conscience do a double-blind study. That is, in all double blinds, some patients will not be taking anything, but a placebo, and for the duration of a long study, like MIRA, he could not allow patients in great suffering to be on nothing.

That's not to say the minocycline or other tetras in the same class don't work for severe RA. They all have disease modifying properties as well as bacteriostatic antibiotic properties. I was extremely severe and highly seropositive for RA and, although it took time to turn my RA around, I am now at the 95% mark in improvement after 2.5 years on very low, pulsed doses. Although I have had blips along the way, I have recently switched to low dose doxycycline and azithromycin (both bacteriostatic) and doing very well so far. On the doses I have been taking this past year (post high dose Lyme tx), I find it hard to believe that these low doses had very much of a disease modifying effect.

http://www.emedexpert.com/facts/minocycline-facts.shtml

“Off-label & Investigational uses[/b]
Rheumatoid arthritis

Minocycline is used as a disease-modifying anti-rheumatic drug (DMARD) in the treatment of rheumatoid arthritis. Rheumatoid arthritis is a chronic inflammatory disease affecting about 1% of the adult population….

… According to the American College of Rheumatology, “Minocycline is prescribed for patients with symptoms of mild rheumatoid arthritis. It is sometimes combined with other medications to treat patients with persistent symptoms of this form of arthritis.”

Peace, Maz

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