What would you do?

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?

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

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!

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! 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

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.

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!