Early 20's, New to RA. Advice needed!

http://www.webmd.com/rheumatoid-arthritis/ra-tv-v1 

I'm glad that you're not doing too bad without the methotrexate...when I quit taking it last December, by the end of the second week, I literally hurt from head to toe.  Funny thing is, it wasn't like my "regular" RA pain, but more like every muscle in my body was on fire...not pleasant!

Well, the less-toxic drug I want to try is low-dose naltrexone (LDN).  I've read a lot about it over the last couple of months, and I plan to give it a try.  If you want to know more about it, see the thread I started a couple of months ago titled "LDN".  If you have any questions, I'll be glad to answer them to the best of my knowledge.

Keep in touch!

Yes, I feel the same way you do...I've been on Enbrel and methotrexate for over twelve years, and I worry about their effect on my body.  Over a year ago, I woke up with swollen lymph nodes and was terrified that I'd developed lymphoma, which is a potential side effect of both Enbrel and methotrexate.  That didn't turn out to be the case, but it sure freaked me out!

I should have posted the link to my LDN thread here...it's now on the second page of posts:

www.healingwell.com/community/default.aspx?f=108m=2638061

I'm not an expert, but I've done a ton of reading on this drug, so I may have an answer if you have a question.

Thanks for the good luck wishes, and I'm sending them back your way, too! 

I will keep you posted about my journey toward trying LDN.  I already went to a new general practitioner, but she wouldn't prescribe it for me, as she didn't know anything about using it for RA.  I gave her some reading material, so we'll see.  If she still is unsure about prescribing it, I have other avenues available, and will just have to go on to plan B. 

I just finished a good book called Up the Creek With a Paddle:  Beat MS and All Autoimmune Disorders with Low Dose Naltrexone (LDN).  I got it on Amazon, and there are a couple of other books on the subject if you want to check it out.  As a matter of fact, I'd be willing to send you my copy of this book if you're interested--you wouldn't need to return it, as it's not really a book one would keep for reference.  Just private message me if you're interested.

This is not a fly-by-night therapy...LDN is in phase lll clinical trials right now for Crohn's disease, which is also autoimmune in nature.  I can't wait till it gets approved for all autoimmune diseases, so doctors become aware of this use for it, and will prescribe it immediately.  It's not a cure, but it has been extremely helpful for not only autoimmune diseases, but some cancers and a host of other conditions.

Well, climbing down off my soapbox now!     Keep in touch...

No, I have not yet begun taking LDN...the doctor I went to still isn't comfortable prescribing this for me, I think because she's afraid it will "clash" with what my rheumatolgist thinks.  (I couldn't care less about that!)  I have an appointment with my rheumy this week, and I'm going to ask her about it, but I have zero hopes that she will go for it...she's very rigid in her thinking.  (Of course, she has no problem prescribing these toxic drugs I've been on for years, and I'm the one taking the chance on LDN, but I'd be flabbergasted if she agreed to prescribe it.)

As I mentioned, I have a plan B, but I have to save up some money.  I've come across a list of doctors who will do phone consultations and prescribe LDN if they believe it's warranted. 

These doctors willing to do phone consultations are open-minded physicians who've seen how helpful LDN can be to people, and they know it's difficult to find a doctor who knows enough about it to prescribe it.  Most don't take insurance, so the money for the consultation has to be paid up front.  (I think it's a big hassle to bill an insurance company for a phone consultation, so they just don't do it.)

So, that's where I am now...saving up for a phone consultation.  I picked out a physician from the list I found, and I'm going to give them a call tomorrow to make sure they still do this, and if so, I'll be setting up an appointment as soon as I can get the money together.

Again, this drug is not a cure, but it "fools" your immune system into thinking it's normal, and you have to take it every day to keep up this effect. 

The thing I'm concerned about is how to go off of the Enbrel and methotrexate.  (Since this drug temporarily restores one's immune system to normal, you can't be on immunosuppressive drugs while you're taking it.)

That's where I think having a doctor you can call (for a fee, of course) who's familiar with LDN is better than finding a local doctor to prescribe it who has no experience with the drug.  I'll see if that thought holds true!

I am trying not to get my hopes up too much, but it's hard...I'm saying a prayer that this works as well as I've read it does.  Wish me luck...I will post here when I begin taking it, and we'll see what happens!

Thanks for taking an interest.

No, I've not yet tried the LDN...I've had some financial setbacks (transmission went out on my car, needed a new roof, etc.) that have taken all of my "spare" cash.  (The LDN isn't expensive, but as I explained in an earlier post above, the phone consult can be.)

As I expected, my rheumie wasn't a fan of me taking LDN, and wouldn't prescribe it.  She said that "we don't know what the effects of taking it long-term are".  I told her that I wasn't a big fan of the potential side effects of Enbrel and methotrexate, and she said that "at least we know what to look for".  (That's a big comfort if I develop lymphoma or some other form of cancer, or a fatal blood disease!) 

There are other legal ways to obtain LDN, but then you're doing it on your own, without doctor supervision, and that scares me.  I guess I have to decide what scares me most...taking a medication my doctors won't prescribe, or taking medication that they will!

So, in a nutshell, I'm trying to decide how to proceed.  Glad to hear you're doing ok on the Enbrel.  I don't have any problems with RA symptoms resurfacing the day before my next shot, so I count myself lucky there.

Well, thanks for asking about how I'm doing.  Take care and keep in touch!

I see that you're new here...did you also start a new thread introducing yourself?  That's the best way to get responses to your posts.  Someone may see the one on this thread, but you have a better chance of getting replies by starting your own thread.

I'm 54 now, and have had RA for 26 years.  I'm glad to hear that you're able to lead an active life.

I'm about to start on something called low dose naltrexone, or LDN.  Google it and see what you think.  It's not as toxic as some of the "heavy hitter" drugs often given for RA.  It doesn't work for everyone, but I hear it works for many, so I'm going to give it a shot.

Check it out and see what you think.  Regardless, I wish you the best of luck!