I was diagnosed about 3 and ahlaf years ago with RA and Thyroid disease, then later with Fibromyalgia on top of it all. I have been seeing the same rheumy since the first diagnosis and she is wonderfully kind. I started out on predisone, plaqunil and an anti-inflammatory. Later she added mtx shots, then eventuall Enbrel. After 2 years of fairly good success with the Enbrel, it stopped working and she switched me to Orencia, That produced terrible side effects and no improvement, so I've started Humira.
In the meantime, I am feeling worse and taking more and more drugs. The painkillers (I think) are causing me to have acid reflux. I'm in more consistent pain than I ever imagined, down-right bone-tired much of the day and getting more and more stressed out about it all. I just turned 55 and still work full-time (have to- my insurance is tied to me employment)... and this is certainly not what I expected to be like at 55.
My daughter, who is in health care, made arrangements through a friend of a colleague to gt me into an RA Clinic at Johns Hopkins in Baltimore (we are only about 50 miles from there)for a second opinion. The issue is that my family doctor told me a few years ago that if I ever left my rheumy's care for a second opinion, that the reheumy would probably not take me back.
So... what would you do? I have an apt tomorrow afternoon with the rheumy and if I am going to try to see the clinic docs at JH, I have to ask her for a copy of my records. What would you do?

Technically, getting a 2nd opinion isn't "leaving care," at least in my book. You don't have to ask your current Rheumy, directly, for your records. The records are yours by law, and can be copied for you by the office staff. They may ask you for a reason, but you do not need to provide one. Be sure to get copies of any imaging that's been done recently, as well as labs, so that doesn't have to be repeated. Of course, it is possible, even likely that your current Rheumy will be put in the loop by office staff. However, it doesn't have to become a showdown between you & the doc.

I detest power plays made by med practitioners, like the comment made by your fam doc. It may be that what was said is true about your current Rheumy, or it may be that your fam doc just doesn't like making extra referrals & that is why it was said.

For you it may come down to trying to decide whether you want to stick with the med regimen you have, or whether you want to try to convince your current Rheumy to try something else, or whether you want to go with the second opinion. These decisions aren't easy.

Best wishes.

but plenty of OA in many areas of my body, I'm 71.

I've been searching for years for something to help me. I did go the anti-inflammatory drug route in the '80, but ended up in the ER with a stomach ucler. That was a shocker.

So over the years I've NOT taken drugs for my conditions.

Thru The Roadback Foundation board I learned about the low dose, long term antiobiotic therapy which many use for RA and with good results.

Many of these people also take MSM in higher doses, which I have been doing for 10 months now. It helps with pain relief re: arthritis and FM.

About 9 days ago I started on LDN therapy for autoimmune conditions. I thought hard about this for about a year and jumped into. You can find a lot of info online about LDN for autoimmune conditions including: RA, FM, CFS, Lyme, some cancers, AIDS, hormonal imbalances and more.

I'm going slowly on this LDN protocol and hoping that it will help with the stiffness in my lower back (AS) and knee. So far OK, but nothing dramatic. I've noticed a hormonal change though and that's good. And maybe a slight change in my joints, maybe.

Take Armour thyroid, Omega 3's are critical I believe, Grapeseed Extract (antioxidant), Vit D3 (5K per day) and many more supps.

Avoid sugars big time. That includes refined carbs. I slip for social functions, but don't overdo the sugars and carbs.

This is my program and what I can offer in my years of dealing with this all. jam

You have every right to your records and to get a second opinion.

Personally, I don't see anything wrong with telling your reheumy that you are getting a second opinion. If she don't like it... tough! Truth is, the one most concerned about YOUR health is YOU.

It doesn't sound like your current doctor is doing you much good anyway... she is doing the typical thing.... throw drugs at it hoping to find something that works and doesn't kill you in the process.

If you need to find a new doctor, then find a new doctor. I say go for it.

Dar

What would i do, without a doubt i would seek a 2nd opinion.

You are only 50 miles away from a well known John Hopkins.

Most definately yes, have a 2nd opinion for yourself.




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