Afraid of moving forward...

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mlrarr
New Member


Date Joined Jul 2016
Total Posts : 3
   Posted 7/5/2016 2:55 PM (GMT -6)   
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)


couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 7/5/2016 3:47 PM (GMT -6)   
Gentle hug....

First off I applaud you for adopting your grandkids. You're a wonderful mom/grandma.

Next, there is more meds to help you. Plaquinel is just a stepping stone. It can take 6 weeks to kick in fully. Next step is to move to stronger drugs ( MTX, predisone, biologics, etc). If you're still hurting--holler for stronger meds. If he is giving you lousy care talk to the insurance company. They may approve a different doctor for you.

Best of luck to you.
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, diabetes, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

CA-Lynn
Regular Member


Date Joined Jul 2016
Total Posts : 24
   Posted 7/5/2016 5:45 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

mlrarr
New Member


Date Joined Jul 2016
Total Posts : 3
   Posted 7/5/2016 7:56 PM (GMT -6)   
Joy and Lynn,
Thank you for replying back so fast. It's kinda funny how I have this big family and this RA thing is what is overwhelming me! How do you know when the damage is being done to your joints? Is it when you are fatigued or the swelling? Is RA different for everyone? I guess I better get our of the garden and get on this computer and read everyone of these post so I can see what is ahead...

I know one thing I will be heading back to that Dr and asking questions!!!

Thanks again
Melinda
Loving life in messes up California...
Dx- Celiac disease, RA

Alice22
Veteran Member


Date Joined Jul 2015
Total Posts : 595
   Posted 7/5/2016 10:20 PM (GMT -6)   
I remember when I was diagnosed with RA in 1998 my doctor told me that this disease is most aggressive in the beginning and for that reason it was important to also treat it aggressively to prevent joint damage. I took his advice and got on Enbrel, a biologic, which helped immensely. Now I am on remicade, also a biologic. This is a systemic disease that can wreak havoc on your body. Get another, more knowledgable rheumatologist if you can and if your RA is severe (RF Factor blood test will indicate severity) don't wait to get on a biologic. You want to prevent joint damage now, while you can.
Diagnosed with ulcerative colitis in 2005 and rheumatoid arthritis in 1998. On Remicade since 2005 for both diseases. For UC tried sulfasalazine, Lialda, colazal and others which made me ill. Started 50 mg. Imuran July 2015. Use peppermint oil capsules and Bentyl which help during a flare and with IBS symptoms.

Caregiver for mother with Alzheimer's Disease (for Alz. forum).

MarleneF
New Member


Date Joined Jul 2016
Total Posts : 12
   Posted 7/6/2016 9:50 PM (GMT -6)   
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.

CA-Lynn
Regular Member


Date Joined Jul 2016
Total Posts : 24
   Posted 7/7/2016 11:06 AM (GMT -6)   
Elsewhere in this thread a comment was made about RF value correlating to the severity of the disease. I personally don't feel this is accurate. I know many sero negative patients, such as myself, who were severely afflicted [physical damage, not psychological] and all the while we remained sero negative.

Just as a matter of information, this test excludes any patient self-reports. Supposed to indicate severity.

http://rheumatology.oxfordjournals.org/content/41/1/38.full

While I think it's important for the rheumatologist to assess all physical and psychological aspects of the disease, in terms of actual RA treatment, I think it's imperative to "ignore" the psychological component in order to treat the physical symptoms.

celebrate life
Veteran Member


Date Joined Dec 2014
Total Posts : 2066
   Posted 7/9/2016 12:05 AM (GMT -6)   
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

Don_D
Veteran Member


Date Joined May 2013
Total Posts : 548
   Posted 8/8/2016 11:39 PM (GMT -6)   
Sure, but stem cell treatment has not received FDA approval and is generally not covered by insurance as well. Let alone the possible side effects have certainly not had time to be properly researched.

I for one am very skeptical of any treatment therapy that makes claims like those that I have read regarding stem cell therapy. If this new miracle therapy were as good as it is claimed would not the FDA and medical journals let alone our rheumatologists be talking about it? If they are cautious it is for a good reason IMO.

I am hopeful that given some time and research that this treatment option will be as promising as it has been claimed.

/www.statnews.com/2016/02/08/fda-crackdown-stem-cell-clinics/

Post Edited (Don_D) : 8/8/2016 11:48:03 PM (GMT-6)


MarleneF
New Member


Date Joined Jul 2016
Total Posts : 12
   Posted 8/10/2016 7:15 PM (GMT -6)   
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.
"More than that, we rejoice in our suffering, knowing that suffering produces endurance, endurance produces character and character produces hope. And hope does not disappoint, because God's love has been poured out through the Holy Spirit who has been given to us." Romans 5:3-5
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