Just Diagnosed With Rheumatoid Arthritis

[Max Von]

It's been a rough couple of years. I haven't worked in over 2 years, was diagnosed with PMR (Polymyalgia Rheumatica) and have been taking a cortico steroid, Prednisone, for a year now. My symptoms were going away and I was hopeful that I was on the mend. Well my Doc insisted on an ultrasound on my hands and more blood work. Turns out I have symptoms of Rheumatoid Arthritis, bone erosion. I'm 51 years old and never thought I'd have to deal with this.
Not looking for sympathy but rather wondering if any other Pelican's or family members have had this disease. I'd appreciate any shared experiences.I still have to go back for more test and consultation. Could be a lot worse but very disappointing after having PMR for the last year.

[skinnerd]

Really sorry you have RA.

My mom (age 78) has had it the past ~12 years.
She has been getting a Remicaid (sp?) infusion every 2 months for quite some time.
Really has helped her with her symptoms with limited side effects.
Expensive though!

Hope you can find something that gives you relief.
RA is an unpleasant disease....to say the least.

[Tobra]

Get yourself a smart Rheumatologist. Nutrition is going to be important for you. Prednisone is a nasty, powerful drug. There are a lot of therapies out there, you will be tried out on more than one of them. It is an autoimmune disease that affects connective tissue, hence will impact your entire body and all organ systems to some degree.

If you have problems with your hands in AM, paraffin bath, think fondue maker full of wax, can be VERY therapeutic. Making physical therapy, strength and range of motion exercises, a part of your daily routine is something to do now. Much better to maintain than rehabilitate. There are many support groups out there, check them out.

If you smoke, quit, right now.

[Zeke]

I think diet is important. Try to see a dietitian.

[n8marx]

My mother-in-law has been taking all manner of high powered drugs for decades to combat her supposed rheumatoid arthritis. These drugs have done a number on her over the years. Came to find out in the last year or so that what was thought to be RA was actually undiagnosed Lyme's Disease, for thirty plus years.

Not necessarily saying this is your case but the symptons are similar enough to confuse the two, even for doctors. Worth a question or two I'd say.

[Max Von]

Thanks Guys.
This is exactly what I was hoping for. The more thoughts, experiences and suggestions the better.There is no cure presently, but I hope to keep on keepin' on and have a decent quality of life.
Max

[n8marx]

Forgot to mention, MIL was taking something called "gold shots" for years. Literally, metal in the shots that apparently settled in the deteriorated areas. Problem was, it settled everywhere else too. Her skin is permanently discolored a pale, metallic-looking hue as a result. Stay away from those. And get checked for Lyme's.

[Joeaksa]

Might give Celebrex a try. Worked wonders for me but it does cause weight gain.

Joe A

[Exotic118]

It sucks finding out that you're sick and there is no cure.

I know the feeling because I was diagnosed with MS several years ago after I began to lose my ability to walk. It took over a year but we found a treatment that worked for me. I have been fortunate that treatment as slowed the progression of the disease and reverse much of the damage that been caused. I get around just fine now, you would never know that I have MS.

Hang in there.

[Bill Douglas]

Another idea is to see an allergy doctor. I've had Rheumatoid Arthritis since I was a young kid and it turns out one of the things that makes it worse is an allergy to certain foods (one of them milk). I take Lyprinol which is derived from a type of shellfish. It's not a cure-all but in my case it allows me to have a happy day without drugs. Google Lyprinol and see if it can help you. And good luck.

[Zeke]

If you can get off the Prednisone, you will be better off in the long run. But, it won't be fun.

[Crowbob]

If it is RA, the more frequently you move the joints the better. Counter-intuitive and painful but true. Even though RA is systemic, keep the steroids to a minimum and control the pain. At 51 you got a lot of miles left.

[scottbombedout]

Originally Posted by Joeaksa

Might give Celebrex a try. Worked wonders for me but it does cause weight gain.

Joe A

Celebrex for me too. Its easy on the stomach but I found not good for blood pressure.

[Tobra]

celebrex, bextra and vioxx may be trouble if you have cardiac history.

[m21sniper]

I have advanced arthritis in my upper back and neck.

It's great.

[Max Von]

Originally Posted by Tobra

celebrex, bextra and vioxx may be trouble if you have cardiac history.

Thanks,
Dad had first heart attack at age 32. I've got high blood pressure to boot.
I just want to get off this Prednisone and move on to the next challenge.

Thanks to all for the suggestions and input!

Max

[Max Von]

Originally Posted by n8marx

My mother-in-law has been taking all manner of high powered drugs for decades to combat her supposed rheumatoid arthritis. These drugs have done a number on her over the years. Came to find out in the last year or so that what was thought to be RA was actually undiagnosed Lyme's Disease, for thirty plus years.

Not necessarily saying this is your case but the symptons are similar enough to confuse the two, even for doctors. Worth a question or two I'd say.

Funny you should suggest that. I had a tick bite back in the spring of 2008 and was tested for Lyme's Disease 3 times. That brought on the positive test for the PMR. Now we move on to the next hurdle! Gotta get me another 911 to cheer me up!
Max

[Zeke]

Max, I have to weigh in with a little philosophy. I don't trust doctors, but I use them. I'm not some sort of wacko that doesn't believe in them. However, outside of the circumstance where you are under a general anesthetic and they are cutting on you, you have some control.

I google everything about my condition and read a lot. I don't tell a doc I might be 2nd guessing him/her, but I make my own assessment to go hand in hand with theirs. I can't set my own broken bones, but I can monitor medications and treatment.

Doctors tell you don't smoke, lose weight, blah, blah, write a scrip and go on to the next patient. This is where your job begins.

I've gone back and raised the eyebrows of a couple of docs when I told them how I fixed the problem. If you can get a complete blood screen done and you get to analyze it along with some optional help, you may find a path.

Hope so.

[afterburn 549]

Short and to the point.
My X had this...she discovered "Black perils" from china.........they have almost cured her...we sent some to the lab.....lots a herbs, some liquorish and other identifiables.
SO,..you will have to search this out......and import through Canada as they will not allow direct to good OL USA

[Noah930]

I cannot overstress the importance of having a good rheumatologist at your side. The treatment (and progression) of RA has changed dramatically over the past 20 years. DMARDs (Disease Modifying Anti-Rheumatic Drugs) have had a huge impact on keeping RA managable.

While everyone thinks of RA as arthritis, it's more properly a disease of synovial overproliferation...which then leads to arthritis. The arthritis is the end result of the disease. With good managment and some luck, you may be able to stave off much of the arthritic portion of the disease.

Synovial tissue lines joints and tendons. Joints and tendons are moving parts, so they require lubrication. Your body makes synovial fluid (from synovial tissue) to do that. In RA, somehow the synovial tissue becomes overactive. That leads to swelling around joints and tendons, and sometimes pain. With time, joints get stretched out leading to joint laxity and uneven joint wear. Enzymes also degrade cartilage in joints, leading to arthritic change. The end result is a characteristic type of arthritis that frequently occurs in the hands and wrists. The hands become disfigured, though often they might not be painful.

Joint replacement is available, but it sounds better than it really works. The artificial joints are made of silicone and remind me of gummy bears--not like the plastic and metal joints that are used in hips and knees. Pyrocarbon implants have been tried, but usually don't work too well because of poor bone stock for anchoring purposes. Extensor tendons of the wrist also tend to rupture through attrition (think of a rope rubbing over a rough edge), and tendon transfers can be done to restore function as the ruptured tendons aren't suitable for direct repair.

Whereas those types of surgeries used to be more commonplace a generation ago, they're increasingly rare due to DMARDs and improved medical management, in general. Best of luck.

Oh, and if you're in Boston and need referrals, let me know. I'm not as up to date on who the best rheumatologists are, but the guys who are universally known for writing the hand surgical textbook chapters on RA are Boston guys: Nalebuff/Feldon/Terrono at New England Baptist (I think their website is BostonHand.com), and Len Ruby who's now retired but has passed on his knowledge to Chuck Cassidy at NEMC. You can always ask them for referrals to good rheumatologists in the area.