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Old 11-12-2012, 03:39 PM   #1
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What to do!?!?

I am not sure if this is something I should look further into or not... I have been having joint pain for over 9 yrs. I have only mentioned it to my PCP 1 time about back and hip pain. She was first to mention RA to me and ran test . Nothing came back. I am 24 yrs. and feel like i'm 90! I wake up to stiff fingers, toes, and back for the most part and in pain. My joints feel like they are grinding and locking . I feel like I have to constantly pop my fingers, hips, knees, wrist, toes,...the list goes on, just to move or be able to pick stuff up. My knuckles are a tiny bit different in color, a light pink color and are warm but my fingers are freezing.. I hope that makes since. I am not sure if its just me, or something else.. I recently went to an orthopedic specialist over a bump on my right hand. Then tried my best to explain everything else that bothers me. He also mentioned RA, but my previous test showed neg(which was 8 yrs ago) so he kind of brushed it off. I don't think these docs. are taking me seriously because of my age. That or all my symptoms make me seem like a hypochondriac. I Have went a long time thinking that all the pain was normal and everyone felt like this. I push through each day and just suck it up and deal with the pain, then I pay for it big time at night! Any info is appreciated.. Thanks

 
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Old 11-12-2012, 10:03 PM   #2
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Re: What to do!?!?

Have you been to a rheumatologist? To find one in your area, contact the Arthritis Foundation. Be aware many require a referral, and you might have difficulty getting one from the doctors you've seen.

I can certainly relate to you. I'm 58, and have had RA since I was 21. Like you, I was brushed off at first. They kept saying it was stress, anxiety, searching for a way to scam the system (disability), etc. Finally, it got so bad they had to aknowledge it.

I'm puzzled that you say the "test" for RA came back negative. What test are they talking about? Is it the RA factor? That's negative in about half the cases of RA. My rheumatologist doesn't even bother with it. Actually, not to worry you, but RA factor is often negative in the more serious cases.

You're "in luck" that you live in a time with more treatment options than I had when I was your age. Back then, they didn't even have Motrin! It was a big deal when it came out, only in prescription form! Now its OTC! However, for more serious cases, there's better drugs now. The biologics have changed the course of RA treatment. Perhaps you are familiar with the advertisements? Enbrel is the one I take, also, Humiria and Stelara are similar. These drugs actually alter the destructive course of RA, not just control the symptoms. They are injectables, but don't let that scare you (I was scared to death of giving myself a shot at first). its a very easy, sub-cutaneous injection. Usually given 1-2xweek, they have some now 1-2X/month. Problem is, they are very expensive, about $5000/month! Most comprehensive insurances cover it.

There's other drugs that aren't as potent, nor as expensive. IF you have RA they might want to start you on something less potent. Usually the treatment ladder starts with

NSAID---nonsteroidal-antiflammatory drugs, such as Motrin, Naprosyn, etc

immuosuppresant therapy---drugs such as methotrexate, Immuran--

Biologics---as mentioned above


Also, steroids are used for temporary relief of acute episodes

The important thing is to get diagnosed ASAP by someone who knows what they are doing. If its RA or something else, you need to get a DX and treatment plan.

I can especially relate you you because we both experienced health problems at such a young age. My problems were further compounded because I was a young-appearing 21-year old. Doctors assumed I was about 14! I kept being told I was "too young" to have arthritis. There's a big difference between RA and osteoarthritis. OA is a degenerative disease, usually seen in the elderly. However, RA often manifests in younger people, including teens and young adults.

So, if I were you I would:

Contact the arthritis foundation and find a rheumatologist--be aware, you might have to travel. Rheumatologists tend to cluster in large medical centers

Take care, good luck, keep us informed! Oh, and take heart, although RA is not currently curable, the treatment options now available can bring things under control.

 
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Old 11-12-2012, 10:38 PM   #3
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Re: What to do!?!?

Thank you so much. It is nice to know I'm not the only one. All I know of the blood work is that it showed neg for arthritis. Im not sure the specifics. I was about 14 so it was a foreign language to me then. I have not yet seen a rheumatologist. I was waiting to get input from others before going to that length. I defiantly will now. Thank you again!

 
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Old 11-17-2012, 12:07 PM   #4
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Re: What to do!?!?

Pollyanna,

I cannot stress to you enough how important it is to advocate for yourself and push for answers. Based on your age when your symptoms developed, it may be JRA (or JIA as doctors now call it). If it is JRA, it is different than RA even though many symptoms are similar, and some of the treatments are as well. I was diagnosed with JRA 45 years ago at the age of 10. I was treated with anti-inflammatories for a couple of years and then not treated for it anymore by my family's GP. In my 20's, I started having pain and stiffness again. I saw numerous doctors and even went to the ER once since my shoulder pain was so bad.

I was told over and over again that RF test was negative, and all I needed to do was lose weight. I really didn't see how that would help my shoulder pain, but hey, they were the doctors. Finally,, in my 30's, I found a rheumatologist. She explained that the Rheumatoid Factor test was usually negative in JRA. She took X-rays of my shoulders and hips, and later told me she was beside herself when she saw that the joints were pretty much destroyed. I had both hips replaced at age 33, and 1 shoulder replaced at age 46. I have recently had to have 1 hip re-done, and will need the other re-done soon as well. These are major surgeries. My elbows are pretty well fried also, and are painful and cannot straighten.

The good news is, there are many more treatments available today and many of them are effective in preventing the kind of joint damage I was left with. It's very important that you push for answers, and be sure to tell them your symptoms started at 14. I wish you the best, but please make sure you get appropriate treatment.

 
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Old 11-17-2012, 05:09 PM   #5
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Re: What to do!?!?

Pollyanna,

I see you live in Texas. There are several rheumatologists in Houston, also Dallas. Like the AP, I, too, have experienced much joint destruction. I've had one hip replaced 2x, both knees replaced, both ankles fused, multiple hand surgeries, both ankles fused, and 2 spinal fusions! Ok, I didn't want to scare or depress you with my history, everyone is different. And despite all, I live a normal, active life. But really, I could have done without all that!

There are a lot of misconceptions about arthritis, even among doctors. Its amazing what they don't know. Like the RA factor, that's not a definite indicator. Actually, there is no one definite test for RA. By chance, do you or any close family members have psoraisis? There is a disease called psoriatic arthritis. it closely resembles RA, and the treatment is essentially the same. I also have psoraisis, but one doesn't have to actually have psoraisis to be diagnosed with psoraitic arthritis.

Well, I don't want to depress or frighten you---at your age, with my health conditions, I was extremely depressed, frightened, discouraged. But I do want you to know that IF its indeed RA (and you don't really know for sure at this point), it can be quite destructive. The disease can continue for many years without presenting many problems, but if/when it does become destructive, it can rapidly progress.

Like I said, there are many new drugs now that are much more effective than when I was your age to treat RA and related conditions. Please, don't get involved in "alternative" therapy, like vitamins, etc. At best, its a waste of time and money, at worst, it can waste valuable time in getting control of the condition.

Good luck! And Happy Holidays!

 
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Old 11-23-2012, 10:44 AM   #6
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Re: What to do!?!?

Quote:
Originally Posted by pollyanna07 View Post
Thank you so much. It is nice to know I'm not the only one. All I know of the blood work is that it showed neg for arthritis. Im not sure the specifics. I was about 14 so it was a foreign language to me then. I have not yet seen a rheumatologist. I was waiting to get input from others before going to that length. I defiantly will now. Thank you again!
Hi - I just wanted to say - insist on a referral to a rheumatologist. My bloodwork showed seronegative when I was first diagnosed. Rheumatologist don't put much weight into the RA factor test - they concentrate on ESR and CRP tests looking at inflammation. An anti-CCP test is done to look for antibodies. They will do an ANA test to rule out other autoimmune disorders. They also use other factors to determine a diagnosis such as X-Rays, ultrasounds, and aspirations of joints. There is no one single test and you need to let a rheumatologist tell you that you don't have arthritis. I only knew to ask for a rheumatologist when I experienced the first symptoms because RA runs in my family.

I hope and pray that you do not have RA. The first few years are the most difficult and you learn more than you ever wanted to know about this life changing disease.

 
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Old 11-23-2012, 11:11 AM   #7
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Re: What to do!?!?

Thank You all for sharing information and your personal experience. I had anMRI on my hand for a bump in my tendon. It came back ganglion cyst. But the x-ray I had before being referred to do the MRI looked like my pointer and middle fingers are curved and to me did not look right. Is this normal, or more like early RA. I requested a copy of blood work done back in June for other reasons. Kind of an all around check up. Will that be helpful at all to the doctors? Also I am very active and on my feet during the day...i have a 3 yr.old, in the past few months it seems like its getting worse. and kind of all of a sudden. How fast can RA damage something?

Thanks!

 
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