What would you do?

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zeekman
Regular Member


Date Joined Mar 2007
Total Posts : 39
   Posted 4/4/2007 5:27 PM (GMT -7)   
Hi everyone!! Hi Erin and Ducky!!!!!
 
Sorry I have not posted for a while because I am working and travelling way too much. I want to say thank you to all the people who helped me through the first stages of RA and set me in the right direction. Without your help, I would be in the dark.
 
Once again I come seeking advice.
 
A little backround:
DX one month ago
symptoms for 1 and 1/2 months
28 years old
healthy (despite RA)
taking MTX 15 mg a week
20 MG prednisone a day
starting enbrel tomorrow
Feeling great!!!
 
I went to another Rheumy seeking a second opinion and boy did I ever get one.
 
I went originally seeking AP (antibiotic protocol) treatment but that treatment is for people with very mild RA. I have moderate to Severe RA so AP is out.
 
This Rheumy told me that instead of taking 15 mg of MTX pills and 50 mg of Enbrel she would have me do something else. She said I should take 25 mg of injectable MTX and Planquil (sp). She said that since these drugs have been on the market longer, It would be better for me to take those and not the enbrel. She said that If I do not respond to that treat THEN she would start the enbrel.
 
Does this sound like a good idea? Is there anyone here on MTX injectable and Planquil? Are the self injections hard to do?
 
For the RA vets here, what would you do????
 
If I take the injectable mtx/planquil I will have to call my current Rheumy. What do i say? Can I tell them sorry I am seeking alternate treatment?

Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 4/4/2007 5:30 PM (GMT -7)   
Hey zeek! Is always good to seek a 2nd opinion.. I've never been on MTX or Plaquenil.. I went straight to Enbrel.. I wish I could help you out on this one.. Hhhmm.. maybe call your current rheumy and tell them that you sought a 2nd opinion, and this is the treatment they recommended and ask them what they think? Maybe they have a reason for wanting you to go right on the enbrel.. Good luck, and let us know what they say.. Duck
Moderator of Arthritis/Epilepsy Forums
Confirmed Diagnosis of - Psoriatic Arthritis/Spondylitis/Graves Disease/GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes/Chronic UTIs
Current Meds -  Enbrel/Prevacid/Synthroid/Nitrofurantoin
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots
Additional Supplements - Multi-Vitamin/Bromelian/Acidophilus/Green Tea
 


Shaleygirl
Regular Member


Date Joined Jan 2007
Total Posts : 30
   Posted 4/4/2007 5:36 PM (GMT -7)   
Reading the testimonies regarding AP I disagree that it only helps those with mild RA. I am in my 7th month of AP and though I am still awaiting results it can take a year or more. You might check out the testimonies on:

roadback.org

Take care
~Bonny~
Cheyenne,  WY
 
Meds: Enbrel/ MTX/ FA/ Klonopin/ Flexeril/ Lyrica/ Hydrocodone
 
RA Dx Sept05/ FMS Dx Jul05/ OA Dx Apr00
 
"Fear not for I am with thee"


zeekman
Regular Member


Date Joined Mar 2007
Total Posts : 39
   Posted 4/4/2007 5:49 PM (GMT -7)   
I have been to Roadback and that is how I was referred to the rheumy that told me my RA is too severe for AP.

rock528
Regular Member


Date Joined Sep 2005
Total Posts : 32
   Posted 4/4/2007 8:20 PM (GMT -7)   
Hi Zeek,

I think the Rhuemies all have different philosophies and you have to find the one that lines up with your own, you know? I've had doctors and patients tell me you have to hit it really hard right out of the gate w/ aggressive, full blown treatment. To kind of nip it in the bud.

But my Doc seems to be in agreement w/ your second opinion, and I'm most comfortable with that. He wanted to start me on the "safest" (i.e.: longest on the market) and mildest stuff first. So he started me on Plaquenil and then said we'd move to MTX next after 6 months. The Plaquenil has been wonderful -- took 6 months to work and that kind of sucked, but it's awesome now, and I'm glad I didn't rush to layer things.

So I haven't had to do MTX yet. We were going to consider Enbrel after MTX, but definitely not there yet. My doc also recommended I avoid "the prednisone rollercoaster" until I am having really bad flares (like not walking well), so I haven't done that yet either.

One of the reasons I like this cautious approach is I feel like I have a lot of options left in the arsenal when things get bad in the future. And, like you, I'm young (33), so I worry that by the time I'm 60 I'm going to need all the help I can get. :o

Ultimately, I imagine both approaches have their benefits and drawbacks. Good luck with your decision. Keep us posted!
Rocky
 
Actually happy to be sick and not just crazy . . .


sandie523
Regular Member


Date Joined Mar 2007
Total Posts : 22
   Posted 4/4/2007 8:45 PM (GMT -7)   
ok first how do you feel with the mtx and predisone. when i was first diagnosed i was on mtx naproxen and prednisone. and for like 8 yrs thats all i took i felt great like nothing was wrong with me. i got married had a kid the whole nine. untill last year i started having pain again my doc what like "now u need injectables" i hesitated for a while, but i finally gave in. i start remicaid friday. the way i saw it was as a last resort to the pain, but working in a pharmacy i see it treated diffrently woth diffrent people. but most of the time i see oral meds first, then injectables. but then maybe the enbrel will help to not let it advance and to decrease the deformation in your joints.
 
  Sandie
 
 Dx. R.A.
 Meds: Prednisone,MTX,Naproxen,Sulfasalizine,Plaquenil.
 


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 4/4/2007 9:06 PM (GMT -7)   
hi Zeek my friend!
 
awe...geesh, just when ya thought things were settling down?!?!  on the good side, you ARE in a win-win situation no matter which way you go.
so, you can not make a "wrong" decision no matter which you choose, if that puts your mind at any ease. :-)
 
umh....Craig is very familiar with MTX injections.  he could tell you personally what it's like if he reads this. 
i have been giving myself inj. for RA meds since 2002 (Enbrel & Humira) and like anything, it's freaky at first....but a peice of cake thereafter.  you'll get the freak outs right before you go to stick! tongue lol....it might take a few attempts at "darting" it at yourself! LOL...i mean, come on....it is weird. (and i've done hundreds of injection on patients and even I was freaked a little by doing myself.)  but you'll be fine, trust me :-)
well zeek...Plaquenil is a DMARD and it will actually help the disease like MTX will too.
pred & nsaids don't do anything to halt, slow, help the disease itself...just the symptoms.
Enbrel also "helps" the disease.
 
what was your first gut feeling in choice?  that could tell you a lot. 
were you disapointed when you were told the 2nd opinion?
 
hmmm?  ya might need some thinkin' time.  either way you chose, you will be doing something for the RA.  and like everyone said already...you can always move "up" if you do decide to do the Plaq & MTX.  also, you can do Enbrel & MTX.
 
i would tell your other rheummy what happened.  he may agree!
 
whatever you do...don't worry.  you'll make the right choice.
 
is your insurance a problem? would it be problematic if you didn't take Enbrel now but needed to in the future?
 
oh zeek...(((((((((((((hugs)))))))))))
 
erin

erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 4/4/2007 9:08 PM (GMT -7)   
also...if you do Enbrel first....you could do a combo of MTX & Plaq if you feel Enbrel isn't doing the job after you have gave it time.

personally....for me the Enbrel therapy took about 6 months for me to feel some benefits from it...so either med combo will need a fair amount of time.

ciao!
Arthritis Forum Moderator
Active Severe Rheumatory Arthritis. Crohns Disease. A.Chiari Malformation & right brain venous anomoly. Partial Complex Seizures (under control!). MVP & Tricuspid Valve Prolapse. Rheumatic heart & lung. Previous Lymes Disease for 10 years.
Meds: Remicade infusions 300mg Q3weeks; Intra-articular knee injections when needed; Mercaptopurine 50mgQD plus 75mg weekly; Mesalamine 4GramsQD; Prednisone 10mgQD mantainance; Entocort 9mgQD; Meclizine; Augmentin; Tigan 300mg; Reglan; LidoDerm Patches; Diazepam 5mg for AS back spasms; Rozerem 8mg; Dilaudid 4mg tabs for pain. 


Harley Diva
Regular Member


Date Joined Oct 2006
Total Posts : 160
   Posted 4/4/2007 10:07 PM (GMT -7)   
Hi Zeek....I was on sulfasalazine and MTX and now MTX and Enbrel. I don't know I would get a third opinion. I am on my third rheumy. You need to be OK with the treatment plan. Do you have erosions. That would make a difference on how aggressive you may want to go. I went to a conservative doctor at first and now I have several erosions in my feet. Tne second one was a nut job. I changed doctors again and I am very happy with the one I have but he is more aggressive in treatment. I do have some peace of mind that I am protected. Ultimately you are the person in charge of your health care. You make any and all final decisions. It it OK to get opinions. You are the customer and you are paying for a service. Ask questions, inform yourself and remember the doctor works for you.
Harley Diva
 
....RA, HPT,  drugs: MTX Enbrel, bp meds,folic acid


elcamino
Veteran Member


Date Joined Sep 2005
Total Posts : 1744
   Posted 4/5/2007 5:07 AM (GMT -7)   

I guess my rheumy is a bit different than others.  He started me on enbrel (actually, it was humira), but then I was having IBD symptoms at the same time and he knew that a tnf-inhibitor would take care of those sx as well.  Technically, I started on sulfasalazine and had a severe allergic reaction to the sulfa.  Then I started on Humira.  I wasn't getting any results a couple of months later, so I started on the enbrel.  Even then, I didn't get any results until I was on it for almost 6 months--it's a great drug, but I still added mtx to it (recently).  I should also say that my rheumy added plaquenil to the enbrel after I had been on enbrel for about 2-3 months.  I never felt any different with the plaquenil, but my rheumy continues to leave me on it--I gather it's a subtle drug.  about a month ago, I was taken off the enbrel for infection reasons, and I can tell you that I definitely feel the difference.  I am much more stiff and sore than I have been.  On enbrel and mtx, I felt almost completely normal.  MTX and the plaquenil, alone, just aren't doing that, although they are doing something 'cause I'm certainly in the worst shape I've been prior to taking any DMARDs.

Once you get over the injection idea, enbrel (or any of the tnf-inhibitors) are not that bad.  Enbrel made a huge difference in me, and I may go back on it one day.  If you have any IBD issues, a tnf-inhibitor is definitely the way to go. 

Best of luck to you!  I hope enbrel makes as big a difference in the way you feel as it has done for me.

El


Current dx: Rheumatoid Arthritis
Suspected dx: UCTD/Early Lupus
Current Meds: Enbrel, Plaquenil, Aciphex, Ultracet, Zyrtec, Allavert-D, Zantac, Tylenol PM
Past Meds: Relafen, Vioxx, Mobic, Voltaren, Sulfasalazine, Entocort, Prednisone, Humira, Reglan


zeekman
Regular Member


Date Joined Mar 2007
Total Posts : 39
   Posted 4/5/2007 8:27 PM (GMT -7)   
Wow! You people are so awesome. I appreciate your concern and time in this matter. After reading responses and thinking about it, I am going with the second Rheumy as her treatment seems more logical to me.
 
Erin, insurance or money is not an issue thankfully so I am going for the best treatment possible.

She said "I consider myself a aggressive rheumatologist". I believe her. Also, she said within 6 months if I am not responding to MTX/Planquil then I can go on Enbrel. It just makes more sense to me. Now I just have to suck it up and get ready for needles.

Two things she said that struck me:

1. I will be on meds the rest of my life. (I am 28 that means 35-45 years of meds. That is alot of meds.)

2. That if your respond to treatment, than will have the same mortality as anyone else does. That makes me happy!

All I want to do is live a normal life span without lung or heart problems. I can take pain (I mean ALOT of pain) but I cannot take being sick or having infections all the time.

I called the second rheumy and set up an appointment for the 19th and told my former rheumy sorry but I went with another treatment plan.

Thanks for all your responses!

erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 4/6/2007 8:14 AM (GMT -7)   
yeah  Zeek, that's great!
see!...i told ya!  decisions will come with ease when they're ready to.  the wonderful thing is that we're not like "stuck in a dead-end" in regards to options.
like you rheummy said....after 6 months or so?....move on if not content. :-)
 
i've gotta' good feeling about you...you're gonna' do alright.
 
uh oh!!!!!! is it time for a??????? SHOOTIN' UP PARTY!!!!!!!!! yeah yeah yeah
hah!...don't worry...we're all here for ya.  and the  syringes are not huge-whopping-big-boys, lol tongue   ....they're fine & "petite"...lol.
 
true...it is probably 1 of the weirdest things you'll ever do, tongue but after one shot you'll be a pro.  don't worry. :-)
 
feel good with your decision...you made the right one!
 
peace/love
erin
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