joe m…biologic ?

[suera]

I think it was joe m, is your wife on humira or enbrel? i haven't seen posts from you since we switched to the new boards. if you are still around can you tell me if your wife takes prednisone or methotrexate with the biologic?

thanks, sue

[Joe M]

Hi Sue,
Yes, she takes Humira.  She does not take prednisone or methotrexate, or anything else.  She has been doing great for over three years now.

Joe

[Suzanne]

Joe,

Does your wife still take mino?  Like as a DMARD/biologic combo? 

Also, has she ever had to stop Humira for an infection or surgery, etc.?  If so, did she flare when she was off it, or have harder time controlling when she first started back?

Thanks for sharing!

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

[Joe M]

Actually she does take mino occasionally, but prescribed by her dermatologist for acne!  But not on a long-term basis.  While she is taking it, there is no “herx” or anything – I always make sure I ask her because I think its intersting to see how humira/mino act together. 

Regarding infections, she did get strep a couple years ago, and waited for her next shot until it cleared up.  She did not flare.  For the past year or so, we do not do shots on a regular basis.  I'd say its once every 4-5 weeks, simply because we forget.  If we go too long, 6-7 weeks, her shoulder starts getting tight (nothing like the old full RA days though), and this reminds us to give a shot.   We have never had a problem with it getting out of hand, and the shoulder is back to normal in a day or two.

We thank G*d every day it is working so well, and we know we are one of the lucky ones.  We did expect some success, because biologics have an excellent clinical response rate. 

Karin once asked me if we ever thought maybe it was a natural remission, and I have thought about that.  RA does wax and wane, and “burns out” in some people.  The naggy shoulder from forgetting shots tells me otherwise. 

[Suzanne]

Thanks for sharing, Joe, and everything you said is so different from what I see posted on other RA boards!  Doesn't make me think 'waxing/waning' –  makes me think initial AP and sometimes mino now has an effect!!!!  Seriously, I never see posts that people can go three years without it stopping working, or stopping for an adverse event, that is wonderful!  Never see anybody able to get loosey-goosey with their doses, either – maybe there is something to that, too LOL.  Take care.  

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

[Joe M]

Regarding those other boards, maybe people who are having success with biologics don't post, as they are too busy getting on with their lives.  The most recent study on Enbrel I saw said that  some people have been it up to nine years and it is still working.  I don't think we are the only ones.

[Tiff]

Joe,

I find it interesting that your wife is taking mino for adult acne.  My whole experience with all of this started with my continuous battle with that issue for a decade.  I was doing okay with my skin on Septra when my joint issues began.  I found RBF and got my derm to switch me to mino.  They had abandoned the tetracycline family early on when I couldn't take the mino due to nausea/dizziness, so I spent years on ABx like amoxicillin and Septra.

It took 18 months on mino for my skin to clear up, and I had some of the worse and most vicious lesions during that time.  Was that a kind of skin herx?  I don't know, but  dermotologists would have given up way before that.  Heck, they had given up anyway.  I had given up too.  The whole thing has taught me that sometimes patience is needed.  I never expected my skin to look this good again.  Kind of a cosmic irony really, but it gives me hope that my other issues might just take lots of time, too.  Very consistent with MP theory.

Nevertheless, I think of taking regular drugs for this often.  I so would like a quick fix, but with my luck it would either not work or have intolerable side affects, or give me cancer (I'm prone to that), or just stop working.  I still may have to some day, and that is okay; your wife's story gives me tons of hope there, but for now I will keep on down the “road less traveled.”

[Suzanne]

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

Regarding those other boards, maybe people who are having success with biologics don't post, as they are too busy getting on with their lives.  The most recent study on Enbrel I saw said that  some people have been it up to nine years and it is still working.  I don't think we are the only ones.

I don't know, Joe.  I recently looked at an Enbrel/JRA study that made it look like Enbrel dragged mtx down…..and nine years with an ACR20 isn't really being able to go weeks skipping doses, is it?  And is it nine carefree years with no mtx, no pred, no injections, no opiates, no antidepressants, no  NSAIDS?  Do ya' think?  I don't. 

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

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