Little Lymphoma Risk Seen With New Arthritis Drugs

[Tiff]

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

[user=20]Joe M[/user] wrote: 

   My opinion is, if there were truly a link, you would see over half of people on biologics getting cancer. 

Joe

Conversely, wouldn't biologics also put over half of people in remission?  If there was truly a link to that, as you put it?

Well, yes, that would be good, wouldn't it?  Things are rarely that clear.  I don't think half the people who smoke get lung cancer…. and yet…

Joe, unlike me, you still have faith that “it can't happen to me” (your wife, actually), lightning can't strike twice.  You know better technically, but you just don't feel it; you just don't have a gut fear.  I remember being like that.  But I am not anymore.  IF biologics increase risk of cancer, it is likely it will happen to me, IMO, because I have already had two forms, so this is not a risk I can take lightly.

We should be clear, too; I don't think they cause cancer!  I think they inhibit the body from fighting it off; therefore, you would not expect 50% of the people on it to get cancer, but just an increased rate, which I think you see.  Is it worth the risk?  Probably, if the remission rate is very, very high.  I might risk it if I knew for sure I would get the results your wife has gotten.  But she is the only one I know with such excellent results.  I don't want to trade my moderate improvement for a different so-so result that comes with a risk of serious side effects.  Makes sense, right?

Susan, do you think these results are reported this way for the purpose of making things unclear, or is it because scientists are sloppy or simply don't know better (!)?  Again, this is what I mean by Post-Scientific, because if there is any intent to mislead, then it is not science, it is propaganda.  This is a frightening and worrisome proposition, but I think we must face it.  We are the only ones that can take our scientific community to task if they think this will fly!

[Susan LymeRA]

If you believe that bacteria cause cancer by altering cell function, then biologics would be very suspect in helping cause cancer.  There is a great deal of evidence regarding this.  The study does show an increase in cancer rates among biologic users when Susan's points are applied AND biologics have only been in existence for 19 yrs max, sooooo, too soon to know for sure just what they might be doing to us.

gulp!

I think they should be last resort, not first.

Susan

 

[Suzanne]

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

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

[user=20]Joe M[/user] wrote: 

   My opinion is, if there were truly a link, you would see over half of people on biologics getting cancer. 

Joe

Conversely, wouldn't biologics also put over half of people in remission?  If there was truly a link to that, as you put it?

Hi Suzanne,

I don't think I understand your question.  But that won't stop me from trying to answer it ;).

If I ever implied biologics guarantee remission, I apologize because I certainly don't think it is true.

But yes, if someone claimed biologics always lead to remission and then set out to prove it with a study, I would expect nearly all the patients to have achieved remission (there are always a few exceptions). 

I think that is consistent with my view of the biologics – cancer studies.

Joe

 

I was teasing you.  I know you don't think they guarantee remission.

But I don't think anyone else implied they guarantee cancer, either.

What exactly is proven/guaranteed for more than half of patients using biologics, though?

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

[linda]

I don't know what is proven or unproven, but i am glad there are options for just about everyone. I would love to be on abx, but having tried twice and failed because of terrible abdominal pain, I'm glad there is something else out there. I have not been able to convince Dr. K to rx IV abx, and I'm just plain tired of trying to find Dr.s who will do this or that, then driving half a day to get to their office, then trying to figure out how I'm going to pay for the cost of it all. The stress of trying to make this happen is making me sicker than leaving it alone, I believe, at this point. I'm not giving up on it, nor have I stopped decreasing the prednisone; if I hear of a doctor that will do the IV abx here in San Antonio I'll be the first in line.

Currently, I have no life, no job, no social life. I've been trying to get abx that will work for me for 3 yrs, and I'm losing ground in other areas of my health. Biologics are not the perfect solution, but they are available w/out having to jump thru 50 hoops to get them. Altho the Enbrel I'm taking is keeping the pain down to a dull roar, it's not doing enough to make me functional. My (last) hope is that the new rheumy that I'm seeing in July will rx the new biologic, Symponi, that I have not developed antibodies to yet, and that it will work. If it does, and I begin to feel like I can function and work again, I will try again for the IV abx. Right now I just can't travel 5-6 hrs one way to see a doctor, and I can't afford paying for the IV out of pocket, even if they are only $100 per day. If it weren't for the little help I'm getting from the Enbrel, I can't imagine what kind of pain I'd be in, or how much pred I would have to take. Biologics are my best hope for getting off of pred right now.

I really feel that if we are ever going to get AP/MP out into the mainstream of medical practice, we've got to make it more convenient and less expensive. 4-5 doctors in the US, a few in OZ and England, just isn't going to get it done. And the LLMD's and the AP docs need to start communicating and working together. I know there are some GPs who are willing to use abx, but they are usually unskilled and uneducated in AP/MP. I'm genuinely happy for those of you who have the means and support to travel to these AP docs and have found relief from your illness, and I hope that many more continue to do so, but it's just not in the cards for me right now. It's become very difficult to continue reading success stories when I can't even get out of the starting gate. I'll still be around, but not as much as I used to be. This IS a forum for AP, and technically, I'm not an APer. I do have some knowledge of pain relief and steroid use, but there are others here with that as well. However, if anyone has a question about either of those, I'm happy to try and answer. If I don't respond to a PM here, you can always e-mail me at: nini102162@yahoo.com.

linda

[Maz]

Linda, I'm glad a variety of options are available to everyone with rheumatic disease, too. Just wish the AP option and a conventional approach to infectious causes was more standard practice, so all rheumatic patients could at least have some awareness of AP as an early treatment option and not when options are running out.

I'm just so sorry you have had to face all these difficult treatment challenges over so many years and I really hope the Symponi works to bring you back the quality of life your courageous spirit so deserves. Perhaps it can bring you to a place of being totally pain-free, enabling your stomach to heal and…who knows, when you're back on your feet again, perhaps you will even be able to give AP a go again.

I'm going to miss your inimitable, whacky “Linda humor,” so please come back when you can to visit us! You'll always have friends here.

Peace, Maz

[linda]

I would be remiss if I didn't acknowledge the awesome support that I found here at the rbf. You are all amazing, and I do wish I could've added to your success stories. As Maz said, maybe someday. Keep on doing your good works!

[Joe M]

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

What exactly is proven/guaranteed for more than half of patients using biologics, though?

A lighter wallet?

[justsaynoemore]

Now Joe, that was funny.  Thank you, I needed a good laugh.  Cathy

[SusanSD]

Tiff,
     I think that it depends on the researcher's training and agenda (if any). There are some professionals who do research but they have professional doctorates, not research doctorates. I also think that where the researcher comes from is important. If these researchers were hired by the pharmaceutical company who has something to gain by proving that TNF blockers don't cause side effects or increased EBV load, then I'd be suspicious. The impartiality that scientists should have goes out the window. That is why the NEJM editor says we should not use industry-funded research – we can't trust it.
     I remember being outraged over some FDA official (deputy maybe?) whose comment about BPA and the effects on kids' development was “It's up to the industry to provide the evidence about safety and risks”. Hello! If I am trying to sell something to you, am I going to be honest about the risks?!
     I could go on and on with other examples, but I will spare you. It is just plain sad. I feel that the average consumer should not have to have research doctorates to sift through the evidence and make informed health decisions! Hello, I have a job and two young kids and 1.5 hr commute each way, and even though I have the skills to do so, I shouldn't have to!

[Tiff]

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

Currently, I have no life, no job, no social life. I've been trying to get abx that will work for me for 3 yrs, and I'm losing ground in other areas of my health.

Linda, since you lack a social life (I do, too!), please consider hanging around when you have time.  I don't know about you, but I like this board, and I often think how congenial it is.  I honestly would miss it so much if I had to stop popping in.  I may take ABX forever (whether it works or not) just so I can hang out!  Look at Joe!  I know he feels the same way, and I love him for it!  Besides, can you really do without Maz's level headedness and Susan's horse sense and the other Susans wits???  And everyone's compassion and hope?  Gosh, now I am getting all gushy! 😉

[Tiff]

Susan,

Yes, I guess reading the details of the research is really the key – instead of AP news clips about them, eh?  But, yeah, most of us are making educated guesses at best, and none of us have time.  Plus there is also the psychological implications of the great lack of trust we are feeling.  It's a minefield!  I sure appreciate your insites and knowing I can get an opinion from you and others here who are all invested in knowing the truth, not just getting a profit!

Again, Joe, I want to thank you for posting any good news you run into.  I really do want to hear about it, so don't be dismayed if we shred it apart, that is “just the way we roll” I guess!  LOL!  :roll-laugh:

[Kim]

Linda,

I hate that you are in such a funk and am so sorry. 

Texas has a lot of AP doctors.  I'm sending you the list to your e-mail for reference in case there might be somebody closer.

Take care, friend, and please don't go far because we'll miss you, and your little dog too!

kim

[Suzanne]

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

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

What exactly is proven/guaranteed for more than half of patients using biologics, though?

A lighter wallet?

You read my mind!

But I was honestly hoping you had something else.

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

[lynnie_sydney]

(G)linda – no don't be a stranger please, we'll miss you. And we will all be interested to hear about how you are going on whatever path you are on. Lynnie 

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[Trudi]

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

1.  It's become very difficult to continue reading success stories when I can't even get out of the starting gate.

2.  This IS a forum for AP, and technically, I'm not an APer.

3.  I do have some knowledge of pain relief and steroid use, but there are others here with that as well.

4.  Currently, I have no life, no job, no social life.

Hi Linda–

1.  Pep talk coming up.   I think many of the success stories are from those who haven't been sick very long.  We know that the longer the illness, the longer the cure.  Please hang in there.  You've shown yourself to be pretty resilient; just need to get past this difficult time.

2.  Technically, I'm not an APer either.  Started out with it, but had to stop because of too much inflammation.  I'm sure it will be in my future (AP treatment), but for now I'm on Colloidal Silver and Sipro for germ control.  There are various supplements that I take that are also antibacterial.

3.  Linda, you have far more to share than pain relief and steroid use.  You are very articulate, funny, and knowledgable.  I look forward to your posts.

4.  I just noticed your use of “currently”–you are also an optimist–you don't expect to stay in your condition :)!!  BTW, right now I don't actively pursue my (physical) social life; I never know how my day will be.   I do participate in this social network and, of course, the telephone!  Please don't deprive yourself of this outlet.

Take care,

Trudi

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?

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