What would you do?? | Arthritis Information

 

Hey Zeekman,
Rheumies always say that about AP, but if you go to the AP boards there's a bunch of people who will tell you a different story. I think they tell people that because most AP studies have been done on people with mild to moderate RA, and very few have been done on people with more severe RA. That doesn't mean it doesn't work on severe RA (it does), it just means they don't have the proof. Regardless, most doctors try to steer you clear of AP because it's not standard medical procedure, and they don't know how to do it. My Rheumy originally tried to veer me off it but after I continued my research into it and went to her with conviction she agreed to go with it (albeit reluctantly) and said "well, it's a proven therapy".

That said, if you opt for conventional treatment I would agree with your 2nd opinion. ALL Ra drugs (except AP) will eventually stop working so why exhaust them all immediately? I would try to take as little drugs as possible. I started on 20mg MTX and 400mg plaquenil and it worked right away. I have never had to adjust or add anything so far, until I voluntarily added antibiotics (soon I will start decreasing the mtx). Enbrel has been around for 9 years and things like Humira have only been on the market for 3 years, so no one really knows what the long term side effects might be. If you need them, it's great that they're there, but in my opinion it would be better to use them only if absolutely necessary.

Dealing with your doctor can be the trickiest part of this business. If you like the first one, tell them you've done a bit of research and you want to try mtx/plaquenil first. If you really have done your research and your mind is made up they will usually go along with your preference. However, if you like the 2nd doctor better just let the first doctor know you've decided to seek treatment elsewhere. Advocating for yourself can be one of the hardest things to learn, but also the most useful. Don't forget that most doctors are being constantly wooed by the pharmaceutical companies and Enbrel is a hell of a lot more profitable than mtx/plaquenil (or antibiotics for that matter). Big corportae machines don't care about you. Your doctor cares about you, but in an abstract, impersonal way. No one cares about you as much as you do, or has to live being you, so stick up for yourself!


Gimpy-a-gogo39176.7463773148

I went to Roadback and was referred from there to this current Rheumy. This current rheumy said AP was not going to work. So what do I do now???

By the way gimpy, I asked this rheumy SPECIFICALLY about smoking mary jane and she said it has ZERO negative effects as far as the RA goes. So smoking it will not increase chances of RA spreaing to my lungs Etc. That was good news. :)

Zeekman, that's great news about the MJ! I heart marijuana!
Some of the rheumies the roadback sent to me weren't solid information (my own rheumy was on it, and the first time I talked to her about AP she told me the exact same thing you were told). It's not a tightly run organisation...it's more people helping other people so sometimes wires get crossed. You may have been referred to a doctor who has half-heartedly tried AP a few times and didn't get results that convinced them. Did you ask the 2nd doctor about if they had other patients on AP? I would only take the advice it wouldn't work for me if I heard it from a doctor who had a lot of experience with AP.

I am glad you are feeling great!  If you are more comfortable with this doc that you sought a 2nd opinion from then by all means stay with that doc.  You have the right to call your original rheumy and say you sought a 2nd opinion and like what you heard from this doc better and going with this doc. 

If it were me faced with this decision, I would go for the mtx/plaquenil combo first.  Try to as easy on your body with the meds for as long as possible. 

The injections are a breeze to do.  It doesn't burn when you inject.  You can do it 1 of 2 ways....either into the muscle or sub-q...under the skin.  It doesn't matter which way you do it they are both easy to do and effective.  Injecting mtx is nice because you absorb more of the med faster and you avoid the icky side effects of the pills like nausea vomiting etc.  Make sure you take folic acid with the mtx.  They might increase your dose when you start the injections.  All I feel is real wiped out the next day after my mtx shot.  I have heard that other people feel the same way too.  So plan your shot maybe in the evening and on a day that you can do some R&R the next day. 

Good luck with this and I hope that it works for you! 

I took plaquenil years ago and ended up with migrane headaches. I've taken MTX for 15 years amount: 4-2.5 as little as 2 and now as much as 6! Currently struggling with MTX, Remicade and prednisone (getting off of) The remicade in 8 wks. MTX every week. I had a bad reaction this morning after talking MTX yesterday, but feel better this afternoon. Who knows? I've not taken MTX and plaquenil mixed. Glad you are feeling good.

sarah

 

Hey Zeke!

If I were you'd I'd post that info on the RB - they need to know about that doc.  See if they have others to refer you too.

I'd like to point out that my chart says "early onset severe" and AP worked for me - really well.  In January '06 I started getting 'attacks' monthly and was diagnosed on March 3rd.  By July I was on a walker at night.  In August I had to use a wheelchair 3 different times.  It was that bad, that fast.  I'm an early responder and am nowhere near remission YET!  LOL.  All I can say is the pain is gone - and I just helped move my entire family across the US by driving.  A year ago - NO WAY would I have even considered it. 

I have to agree with Go-Go here.  One good thing to come from these horrible diseases is that we learn to advocate for ourselves.  I realized that the only person who cared if I got better and was around for when my baby got married and gave me grandchildren :-) was me!  And if that was something I wanted - I had better make sure that what worked for me worked long term.

There are stories on the RB of things docs say to their patients to dissuade them from AP - and there were some posts about a doctor that told her patient she only prescribed AP for severe patients.  Run a search - I think it was Tiff. 

There are also stories of patients that have left some of the biggest name doctors in AP for other doctors.  Why?  Because as you get better you start to trust yourself more and you realize just what your body needs to heal.  All docs, even AP docs, are not infallible.  They have the same habits and preferences and try to do a 'one size fits all' medicine on a disease that has a slightly different manifestation in every person.  I love my AP doc and I feel that he saved my life by starting me down this road to health - but I also suspect that he is 'old school' and is not up on the latest AP research (check out Vanderbilt) and that I may have to switch doctors when I go on to one of the advanced protocols.  You think it's hard to find an AP doc - try finding one of the advanced guys.  Sheesh!

So, take it from somebody who has 'interviewed' 10 docs just trying to find one to monitor me locally (I was seeing the AP doc out of state) - go with your gut instinct.  If you're lucky like me (I had a recent infection and couldn't shake the idea that is what started this whole slide into hell (only a year but...) you know if there was a recent infection.  I thought you said strep in your first post.  If not, and AP is too daunting at first (it was for me) then please go with the first doc.  Save the bigger guns for later.

And Zeke, we'll always be here for you - no matter what you decide.  That's what these boards are for...friendship.

Pip

"ALL Ra drugs (except AP) will eventually stop working"

Gimpy that statement is a little extreme,  can you please post the link to the peer reviewed study that provides that conclusion

Zeeekman,

I'm going to say the opposite of others.  Go for your best chance of knocking this thing out quickly and that is by adding the enbrel.  AP is a good addition but is so slow acting that  to use it exlusively damage can occur while waiting for it to work.  Once damage has occurred there is no reversing it.  In my opinion the best chance of a quick remission without damage comes from the use of the biologics

buckeye39176.9864930556I go for the second rheumy.  Mine said exactly the same,  start with the things that are proven for a long time and easier on the system,  save the big guns for when the mtx and plaquenil wind down.  You should always go the lighter way first, its like antibiotics, if you take the big guns for everything eventually nothing will work.  This way if you start to not respond to  the light ones you have something else up your sleeve.I agree go with the second RA doctor. The first, they are only human and sometimes a lot more egotistical that most, will be annoyed. Or decide who you can talk to, who will listen to you, and not think you are a 'nut' and who YOU like the best. My first RA doctor was out in left field and wanted to experiment on me (probably enbril looking back 15 years), at the time I was taking only Plaquenil from her. So, when I changed doctors (it cost me money, time and again annoyance( to transfer the information and all) stress from the uncertainty and making the leap!!. But, for me the new doctor was better. He and I go round and round sometimes, mostly because he 'seems like he's NEVER in his office, ALWAYS on vacation' , but probably he needs a break from us (me), anyway we have had a fair relationship and he does listen.....I also needed to deal with his nurse/receptionists, etc., and he actually canned one nurse that was rude to me!! You need to be able to call when you need help and get it....lol, sarah

I agree with the second RA doc also. Work your way up to stronger meds so you still have options in the future. That is the way my Rheumy is doing it as to not exhaust all my options right off the bat. Starting next week I will also be on a combo of injectable MTX and Plaquenil.

As far as switching docs, you have the right to switch docs at any time for any reason. Just tell them your switching docs in order to go with an alternate form of treatment.

Ta2d39177.3109143519

Failed miserabley on the AP and have lots of damage to show for it. I take plaquenil and MTX. It was a dream for the first year and a half, but due to having to go off it for several weeks due to a lung infection, I have taken a big backslide. I upped the dose several weeks ago and have had no luck so far. the doc said it coudl take six  eight weeks. I have been on plaquenil for almost thirteen years.

I had no joint damage until I reduced my Plaquenil when I thought the AP  might be working. This is when the damage set in.

Buckeye, I don't have any studies showing all RA therapies stop working
eventually. That's just what my rheumatologist told me.( I suppose that has
been her clinical experience). I can question her on that more next time I see
her, though. I'm not even sure if followup studies are done on that sort of
thing. If anyone knows anything, I'd be interested.

I also can not substantiate that AP doesn't stop working---I only have
anecdotal stories. Sorry I can't give more solid information on that one.Gimpy-a-gogo39177.3264351852Can you do both the ap therapy along with the mtx/placquenil mix?  I tend to agree, unless you are just AWFUL right now, I would try the mtx/placquenil first.  I don't have any evidence either but I have also heard that most people do build up a tolerance to their treatments so I agree its best to start at the bottom and work up unless you are just absolutely miserable and there is already evidence of x-ray damage seen.

Thank You for the answer Gimpy

I just believe that we really need to be careful about unsubstantiated blanket statements especially when we are talking about medications.  We don't want to give anyone incorrect information

No problem, Buckeye, you're right. And it was a good reminder to phrase such statements appropriately. I'm not going to recommend the first or second Rheumy...I think both are viable options.  Go with the one you feel most comfortable with.

What I noticed from your post though, is that you've only been under treatment for 1 month...it can take MTX by itself up to six months to see complete results, and will at least take 2-3 months before you can tell if the MTX is working for you.  You might want to think about staying on your current mixture for awhile longer, to see if you do actually need to add something else like Plaq or Enbrel.

Good luck with your decision!

dordale :)
I think your first Doc is being aggressive.  Not a bad idea in my opinion.  I have been playing around with MTX for 6 months now and my RA is still not under control.  Ready to tell the Doc to throw it out the window.  I am doing AP but along with all of the traditional RA meds due to bone erosion and thinning starting.  This way if it works then great and if it doesn't I didn't have more damage for trying it.

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. 

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!

You are welcome! [QUOTE=Pip!]

Hey Zeke!

If I were you'd I'd post that info on the RB - they need to know about that doc.  See if they have others to refer you too.

I'd like to point out that my chart says "early onset severe" and AP worked for me - really well.  In January '06 I started getting 'attacks' monthly and was diagnosed on March 3rd.  By July I was on a walker at night.  In August I had to use a wheelchair 3 different times.  It was that bad, that fast.  I'm an early responder and am nowhere near remission YET!  LOL.  All I can say is the pain is gone - and I just helped move my entire family across the US by driving.  A year ago - NO WAY would I have even considered it. 

I have to agree with Go-Go here.  One good thing to come from these horrible diseases is that we learn to advocate for ourselves.  I realized that the only person who cared if I got better and was around for when my baby got married and gave me grandchildren :-) was me!  And if that was something I wanted - I had better make sure that what worked for me worked long term.

There are stories on the RB of things docs say to their patients to dissuade them from AP - and there were some posts about a doctor that told her patient she only prescribed AP for severe patients.  Run a search - I think it was Tiff. 

There are also stories of patients that have left some of the biggest name doctors in AP for other doctors.  Why?  Because as you get better you start to trust yourself more and you realize just what your body needs to heal.  All docs, even AP docs, are not infallible.  They have the same habits and preferences and try to do a 'one size fits all' medicine on a disease that has a slightly different manifestation in every person.  I love my AP doc and I feel that he saved my life by starting me down this road to health - but I also suspect that he is 'old school' and is not up on the latest AP research (check out Vanderbilt) and that I may have to switch doctors when I go on to one of the advanced protocols.  You think it's hard to find an AP doc - try finding one of the advanced guys.  Sheesh!

So, take it from somebody who has 'interviewed' 10 docs just trying to find one to monitor me locally (I was seeing the AP doc out of state) - go with your gut instinct.  If you're lucky like me (I had a recent infection and couldn't shake the idea that is what started this whole slide into hell (only a year but...) you know if there was a recent infection.  I thought you said strep in your first post.  If not, and AP is too daunting at first (it was for me) then please go with the first doc.  Save the bigger guns for later.

And Zeke, we'll always be here for you - no matter what you decide.  That's what these boards are for...friendship.

Pip

[/QUOTE][quote]I just believe that we really need to be careful about unsubstantiated blanket statements especially when we are talking about medications.  We don't want to give anyone incorrect information[/quote]
Absolutely.
[quote]

wow.......  so this has been going on for quite some time......... WOW>

[quote]

Don't forget that most doctors are being constantly wooed by the pharmaceutical companies and Enbrel is a hell of a lot more profitable than mtx/plaquenil (or antibiotics for that matter). Big corportae machines don't care about you. Your doctor cares about you, but in an abstract, impersonal way.  [/quote]

"Allow me to second that... Sometimes it seems Professor Erwin Corey is being channeled" [QUOTE=LinB]"Allow me to second that... Sometimes it seems Professor Erwin Corey is being channeled" [/QUOTE]