Afraid of moving forward...

Hello,
Three years ago I went to the Dr with this pain and stiffness in my ankles, toes, amd wrist. I was told it was fibromyalgia and to go home and exercise. A few months later I had these nodules come up on my toes which sent me to this other Dr. that called it hammertoes and he did surgery and cut them out. They never healed which sent me back to surgery for them to put tiny plates and screws in my toes to hold them together. (By the way he told me hammertoes are caused by high heals something I told him I do not wear.) It's been three years now and I have always had that stiffness but the pain kept getting worse and I now have more nodules on the top and sides of my feet. I went back to the foot Dr. and he said he thought I have RA. So back to the first dr that gave me the fibro dx. Now after more test yep its RA! All he said was take this stuff call placqunell (sp) and that's just about that.
I have Kaiser and we only have one dr that treats RA. I'm am a very active person. I have to be. I have 8 kids as our oldest dies in 2010 and we adopted our grand kids. I MUST keep up with them! Up until a month ago I worked out three times a week. Now every time I do I feel bad! This pain is bad.
So I guess what I am asking is what do I have to look forward to????? The dr made it sound like it just your joints even when I told him I am so tired. I feel like I am having so much anxiety. Is all this normal?? Should I work past the pain and keep it up? Will it make we worse? And what about that medicine? I read the print out they gave me at the drug store. It could do all kinds of stuff to you.....
HELP!!! Im only 51!!! I should not feel like this!!

Post Edited (mlrarr) : 7/5/2016 3:13:54 PM (GMT-6)

Wow - I am humbled by your generosity and love.

You say there is only one Rheumatologist in the Kaiser office. Is there another Kaiser office within an hour's drive of you? That might be a better option.

I'm not sure how it works with Kaiser, but if that one rheumatologist isn't a good match for you, it would seem to me that you can push to get another doctor....or maybe even go outside of Kaiser. Again, I am not familiar with how it works.

I always suggest that people with RA have the best possible insurance they can afford. If it's at all possible, assuming the insurance is through your or your spouse's employer, I would change plans during open Enrollment in the fall. I know, it's a way off.

It's no consolation, but the fatigue is a major component of the disease. I can't imagine raising one kid let alone several. So you have to figure out how each family member can contribute. Surely the very young ones can be taught to put clothes in the hamper.....you need to figure out, based on their ages, how each can contribute to making the household manageable. It will be good for them to learn responsibility. I'm sure it will be hard in the beginning, but it will be worth it in the end.

Plaquenil is a starter drug. They always start with the lowest level drug. if it works, then fine. But if you've been on it for 3 weeks and it hasn't helped, time to start demanding an appointment NOW and pushing for the next higher drug. Scream, rant, rave, go to their ER.....do what you have to in order to get them to push you up another level. Aggressive treatment is the common present-day thinking. You have to arrest the damage before it gets worse.

I want to give you some hope. I was diagnosed over 20 years ago. I was immediately put on MTX and it really helped for a number of years. Ultimately it stopped working and I was regressing. I was put on Humira [a biologic] and it was a game changer. One of the questions you should ask your rheumatologist is: "When can I get on a biologic?" These are the drugs that give you your life back, according to most people. I know that's true for me.

Have hope. Be your own advocate. Learn all you can about your disease and don't try to be a brave soldier. Complain when it hurts.

And ask questions. So many people have been through the wringer and we can help with answers.

Good luck.

Lynn

If you are sero-negative, you may need to convince the doctor that you are sick and not able to do things the way you need to. Do NOT take no for an answer. I did, and I have terrible deformities from the days when I was not treated.

Plaquenil can take up to 6 months to work. It did nothing for me, but I do know people with very mild RA that it works for. You need to be aggressive with your rheumatologist, who has already caused you to have worse foot issues. That almost happened to me. I was scheduled for surgery, but the surgery died the day before. In the end I opted for total reconstruction surgery, but it has taken 7 years to get the foot to reasonable and not too painful.

Let us know what happens. Try and find a different rheumatologist, but if not, just hound the one you have, and tell him you want stronger meds. And don't be content with just mthx (methotrexate). You can add a biologic, and you may be able to get much of your life back. I know I did when I found a good combo for quite a few years.

mirrar,
Welcome to another Californian! I know there is a top notch rheumy in San Francisco, but he is not Kaiser. Since you have had surgery for nodules, I can't believe the Dr didn't see the RA damage at that time. However, since you are currently experiencing joint damage and increasing pain, you should push for a biologic pronto, as it can stop joint damage. Your insurance may force you to try mtx first, but your rheumy needs to be your advocate (or try to get another). I know that's easier said than done if you are having near the problem as I am getting an appointment. I made one a few months ago for Sept 30 and then it was moved to Oct. That is how far appts are booked out.
Good luck to you. You are a superstar in my book! I have two grandkids at age 54, and a day of watching both of them wipes me out!!! It must have been so difficult to lose a child, and what a wonderful person you are to raise those kids.
Beth

I agree with CA-Lynn. Sero-negative RA is a very serious disease, although I think that rheumatologists were not taught that in the old days.

I was sero-negative, and I was not treated agresssively, nor was my RA under control at all for 7 years. I have major feet and hand deformities from those days. And the only reason I got on a biologic was because I finally complained because I could not stand the pain.

Now, after 18 years, my rheumatologist has told me I am the worst case of RA he has ever seen. My sed rates are still low, but the affect of RA on my body is devastating.

People need to be aware of the current research on a thing like sero-negative, and the fact that it is just as severe, or even more severe than sero-positive.