Aces High Bulletin Board
General Forums => The O' Club => Topic started by: eskimo2 on January 10, 2008, 06:59:43 PM
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Statistically, there are probably a few others out there who also have it. I just found out today that I have RA and need to start shopping for a Rheumatologist; any advice?
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Eskimo,
I have an uncle that has it really bad, but unfortunately his only coverage is to go to the VA to have it checked.
I'll ask him tomorrow what he'd choose to do if he had his choice and good insurance.
Good luck, RA appears to be a very dibilitating form of arthritis if it gets real bad.
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Originally posted by eskimo2
Statistically, there are probably a few others out there who also have it. I just found out today that I have RA and need to start shopping for a Rheumatologist; any advice?
#$%^ sucks
I have Stills Disease
http://en.wikipedia.org/wiki/Still%27s_disease
same class / thing, on heavy meds now and I'm 34. oh yea this is the 3rd episode I've had, first at 17, next at 24 and now.
don't know what to say but I feel for you, and know the deal.... most just don't get the pain and uncomfortable-ness that goes with it.
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They thought I had it at 14, but never reoccured. I had a knee go bad from a high school football injury, ended up locking up, etc etc, but after therapy it got better, and no reoccurence. Good luck Eskimo.
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'Luck Eskimo. Sorry to hear about you and JB73's condition. That sucks. :( My double shoulder arthritis doesn't hold a candle to that stuff. Not sure if it will help your condition, but I've been using Glucosamine for 7 years now. I couldn't work out without the stuff...
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That sucks, inherited?
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Be ready for little relief.
Most of the good drugs have been taken off the market. Mine was Bextra.
One good days I just take a couple normal aspirins.
On bad days it's handfulls of Motrin.
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Originally posted by Blooz
On bad days it's handfulls of Motrin.
Must be tough on your stomach.
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Thanks for the concerns everyone.
Three months ago I saw my doctor for this, he prescribed some anti-inflammatory meds and I went in for nerve conductivity tests. The tests showed normal.
Tuesday I went back and he prescribed a blood test. I found out that I tested positive for RA from a phone call on Thursday night from my doctor’s secretary and was told to find a rheumatologist. Of course I Wikipedia’d RA and was pretty floored by what I read. One third of folks with RA are no longer working after five years; half are disabled by ten years. Lifespan is shortened by 5 to 20 years. It’s very painful and life becomes all about managing the pain. It’s incurable and crippling. Women are three times as likely to get it, but men tend to get it worse. It can strike at any age. It’s not from wear and tear; it’s from the body’s immune system attacking the joints and bones for some unknown reason. That’s some pretty scary stuff.
On Friday I talked to a number of people at work who know people with RA and one co-worker who has it. The only person known by anyone who ended up in a wheelchair was someone who was overweight and never did anything about it. Our Kindergarten TA has had back and knee surgeries, but can still walk and work. My principal’s friend has had it for a decade, but it’s only in his hands. Medications have helped him greatly.
My wife set up an appointment with a rheumatologist on the 28th and one with my regular doctor Friday afternoon. My doctor said that my blood tests results were just into the RA zone, not severe. I don’t know if that means that the disease is just beginning though. He said that he has many patients with RA and none are in wheelchairs. He thought that the Wiki stats sounded pretty high and thought that most of the people who would end up in wheelchairs would be those who ignored it. We are most likely catching it early and I’m motivated to exercise, alter my diet and try meds or whatever to minimize its impact.
Right now the joint problems and pain are limited to my hands; especially my pinkies and thumbs. I have good strength, but sometimes a light duty action will send a severe jolt of pain, like a popping tendon. I also have rheumatoid nodules on some pinkie and thumb joints. A month ago I went to a RA website and took the self diagnostic test. While some things looked spot on, others really didn’t. The biggie is that a very common trait of RA is morning stiffness; people are very stiff in the morning for several minutes or hours; I don’t have that and figured RA wasn’t my problem. Everything I’ve read since has indicated that morning joint stiffness is a big issue with RA.
Within the last day, however, it’s occurred to me that while I may not have stiffness, I have a heck of a lot of back pain. It’s only in the morning and lasts for a few hours. I’ve been dealing with this for the past five years; I’ve seen doctors and chiropractors for it. They all said that I had degenerative disks. X-rays of degenerative disk damage and RA damage look very much alike to me. I now wonder if I’ve had RA for the past five years, my back was phase one and my hands are now phase two?
Although there are some drugs out there that help combat RA, many of the potential side effects are as severe or even worse.
JB73,
I feel your pain, somewhat. Best of luck to you.
LePaul,
My mother has osteoarthritis; I’m not sure heredity can span different forms of arthritis.
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Eskimo,
Man I feel for you. Prayers are with you.
I talked to my uncle, and he said just find the best way for you to manage pain. He does not do much else besides the VA as it is too depressing for him as he can not afford anything else.
Again best of luck for you.
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Sorry to hear that Eskimo.
I hope your health insurance doesn't screw you around.
There is a co-worker at Ford who's had RA for at least 15 years...other than her doing mostly light duties you wouldn't know it.
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Originally posted by SirLoin
Sorry to hear that Eskimo.
I hope your health insurance doesn't screw you around.
There is a co-worker at Ford who's had RA for at least 15 years...other than her doing mostly light duties you wouldn't know it.
That's good to hear, not that someone has RA, but that they live a relatively normal life. Ironically, I get as much pain from light duty as I do from hard. I went for a 25.7 mile bike ride yesterday and only had a few minor pain spikes. Nothing major was sore afterward.
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I hope this doesn't interfere with your photoshops Eskimo, you have a talent for really funny stuff.
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My mother has it and has had it for over 25 years now. She had all the joints in her hands replaced about 20 years ago, both knees replaced and both wrists replaced just to be able to function closer to normal.
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eskimo what is odd about my disease is I went 9 years without a symptom, and was living life like normal. once I got sick again it was really harsh until the meds take effect.
right now I feel fine, just a bit weak, but the side effect of the meds is the bad part. hopefully once I get "better" and off meds I won't have another relapse, but there is no way to tell.
with TRUE RA you are almost always in pain...
but be sure to not get freaked out about this. if all the did was a blood test they probably did a check for the "RA gene". that is a very misleading test, and only about 20% of the positives really get full blown RA. there are many variants too, so until you really see a specialist and some treatment you won't know.
good luck and my prayers will be with you.
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My wife has RA, and if not for the current crop of new drugs, she'd be in a wheelchair today.
Find a good Rheumatologist.
Treatment will depend upon how aggressive your RA is. The current crop of new drugs include Remicade, Humera and Enbrel. All are administered via injection or infusion. Humera is every two weeks, and Enbrel is typically a weekly injection. You would be taught to do self-injection, just like a diabetic. Infusions (Remicade) are done in the doctor's office or probably at an oncologists clinic; usually every 6 to 8 weeks. The good news is that these drugs work, stopping the progression of the disease. They don't cure it, just control it.
Also used are steroids and methyltrexate. Mild cases of RA can often be treated effectively with anti-inflammatory drugs. It all depends on your individual case. Your's doesn't sound very aggressive, so I doubt you'll be doing the injections anytime soon, if ever.
One surefire help to limit the issues with RA is exercise. Joints that receive regular exercise always do better than those where patients don't exercise.
I wish you well, and I'm sorry you have to deal with this. The up side is that the science of RA is advancing rapidly and the new medications limit the impact it will have on a normal life.
My best,
Widewing
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Originally posted by eskimo2
My mother has osteoarthritis; I’m not sure heredity can span different forms of arthritis.
These are completely different. Osteoarthritis is a wear and tear issue. RA is an auto-immune disease, related to lupus.
My regards,
Widewing
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I read that the blood tests are 98% accurate; but I think my test was just an initial one. I’m sure that my rheumatologist will order a more specific one. If a positive test results in full blown RA only 20% of the time, that’s pretty encouraging. From what I’ve read, my condition either isn’t very bad, or it’s just very early. My hand pain is tolerable; I can still do normal things, I just get stabbing pain sometimes. My back pain, however, has altered my lifestyle. I’m a different person in the morning than I am in the afternoon. But still, I have no idea if my back issues are related to RA. One thing that I’ve read recently is that the grim statistics are from a World Health Organization study; that would include many poor souls who do not have access to modern medicine. I’m guessing that US stats would be much better. Modern medicines do offer much hope as Widewing pointed out.
Here’s a picture of my pinky:
(http://hallbuzz.com/images/2008/jan/ra.jpg)
That’s as straight as it gets, and note the bumps. My pinkies have the only visible damage.
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What others have said. Don't borrow trouble you don't need. Talk to the specialist and get the info from one who is working in the field and current in it. It may not be as bad as you fear. Like other things keeping a positive attitude may also have a significant impact on the disease. Don't let it get you down.
Thoughts and prayers OTW.
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the 20% thing is what my doc told me, he holds little faith in many of those tests for my condition and many other rheumatic disorders.
see here about some of the information:
http://arthritis.about.com/od/gene/a/HLAgenes.htm
the number of people having the gene can be listed as high (90% plus) but the actual number of full blown rheumatic conditions is much lower.
there are other things to read about out there, and look close about what they say is fact versus suspicion, or probable cause. hell they still don't actually know what causes my condition, or many other auto-immune conditions. some say viral infections, some micro-organisms, some bacterial, then there's the school of thought it is not caused by an external body at all.
overall it is a very unusual condition.
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Originally posted by JB73
the 20% thing is what my doc told me, he holds little faith in many of those tests for my condition and many other rheumatic disorders.
see here about some of the information:
http://arthritis.about.com/od/gene/a/HLAgenes.htm
the number of people having the gene can be listed as high (90% plus) but the actual number of full blown rheumatic conditions is much lower.
there are other things to read about out there, and look close about what they say is fact versus suspicion, or probable cause. hell they still don't actually know what causes my condition, or many other auto-immune conditions. some say viral infections, some micro-organisms, some bacterial, then there's the school of thought it is not caused by an external body at all.
overall it is a very unusual condition.
The Wikipedia article you pointed to says that a major diagnostic factor of Stills Disease is an elimination of everything else. That must be tough to figure out. Then again it looks similar to child onset RA, but also has fevers and rashes… Bizare.
How much joint damage did you suffer with each bout? Did it get any better between bouts?
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With my mother her hands were the first thing to go. Her hands and fingers became so crooked and unusable within the first 6 months that her fingers were almost at a 70 degree angle from what they were when she first started having pain.
With those bumps on your fingers do they start itching, then swell up and then the skin dry up and flake off? I don't remember my mom having anything like that but I have something on my hands that the doctor's can't figure out. They think it is a problem from when I was working in the forestry field and we were spraying some super duper weed killer and eliminating trees in fields before we came back and planted hard woods and pine trees in there.
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Originally posted by eskimo2
The Wikipedia article you pointed to says that a major diagnostic factor of Stills Disease is an elimination of everything else. That must be tough to figure out. Then again it looks similar to child onset RA, but also has fevers and rashes… Bizare.
How much joint damage did you suffer with each bout? Did it get any better between bouts?
I don't get the rashes, but fevers of 105+ for hours at a time... I was originally diagnosed with JRA, but when it came back in 1997 they changed it to Stills. actually when I was in the hopsital they released me officially "undiagnosed, and uncured" but treated with prednisone, and an anti-inflammatory.
joint pain, yes extreme. my knee was about 2.5 times it's size and I couldn't bend my leg to put a sock on that foot.
joint damage? none so far that I know of. my particular condition is such short (2-3 weeks in 1 location) time the pain is from the inflammation, but not actual damage. then it either goes away, or moves to another joint.
from my first episode I missed my JR year almost in high school, and my right shoulder has never been the same. I can throw it out playing catch easily, and I can't reach parts of my back I used to to scratch, but thats about it for me. I know I am lucky in regards to that and some other sufferers.
as mentioned by widewing I too am on prednisone, methotrexate, and indomethacin. I was on hydroxochlorine too but doc stopped that.
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Originally posted by JB73
as mentioned by widewing I too am on prednisone, methotrexate, and indomethacin. I was on hydroxochlorine too but doc stopped that.
Your doctor has probably mentioned it, but a common side effect of prednisolone is cataracts. Be sure to get a thorough vision check-up bi-annually by a ophthalmologist, or if you find glare becoming an increasing issue when driving at night. My wife developed cataracts in both eyes. Both required surgery to replace the lens. Later, periodic laser treatments may be required to remove scar tissue.
My regards,
Widewing
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Bummer, Esk. Keep actively participating in your research and treatment options. Things change all the time and no one is a better advocate for you than you are.
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Originally posted by Widewing
Your doctor has probably mentioned it, but a common side effect of prednisolone is cataracts. Be sure to get a thorough vision check-up bi-annually by a ophthalmologist, or if you find glare becoming an increasing issue when driving at night. My wife developed cataracts in both eyes. Both required surgery to replace the lens. Later, periodic laser treatments may be required to remove scar tissue.
My regards,
Widewing
oh yeah, another side effect is diabetes... got that one last time, along with the floaters and eye problems, and teeth problems.
last time was on prednisone 4 years, this time I am going on 3 months hope to be off in 6-8.
oh and yeah, those eye treatments and surgery are NOT covered under any insurance I have ever had... fukn BS doc makes your eyes bad and OOPS you gotta pay $2500 to even see right. ,,|,, to insurance
BAD BAD drugs help those in pain, and with conditions that need help :(
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Update:
I met with my rheumatologist this morning. He is 99 percent sure that I have good old fashion, wear-and-tear, just-getting-old osteoarthritis. That is fantastic news. He ordered a more detailed blood test just to be sure, however. Osteoarthritis is no fun, but it's a walk in the park compared to rheumatoid arthritis. I really was just hoping that I had a mild case of RA; I really didn't think that I would get out of there with such a relatively mild diagnosis. Two and a half weeks ago my doctor's receptionist called and told me that I tested positive to RA and that I needed to find a rheumatologist. Since then I've come to terms with having RA and developed a positive attitude and determination in dealing with it. Even though I never had RA in the first place, I feel very lucky. I am still at a loss as to why going on a diabetic diet has relieved my pain so effectively (at the advice of a co-worker with RA). I do like the idea of removing a drug from my system to relieve pain over adding a new one, however.
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great to hear.... that is good news for you. :aok
as for the diet? who knows. there are SO many things doctors don't even know or understand it is funny. Every week something new is bad for you, then something that was bad is now good. :lol
My guess would be though 2 things, "healthier" food, and a bit of placebo made a difference.
well good luck with the rest of it :aok