Rheumatoid Arthritis anyone?

[Bugler]

I have had regular osteoarthritis (wear and tear) for years but this spring I was also diagnosed with the autoimmune disease of Rheumatoid Arthritis. At first, I figured it meant just more joint issues but became concerned when reading about the effects, such as possible blindness, heart and lung infections, blood cancers, etc. Who would have thought?

They are still trying to determine the right blend of medication to put me into remission but according to the official website, I should expect my life expectancy to be shortened 10-15 years. If that is the case, I will not live long enough to begin drawing social security. They say to not lose hope because new medicines come out each day, yahooo, lol.

At any rate, are any of you dealing with this? Have they found a combination of meds that work for you?

Thanks.

[Bakefish]

Unfortunately I'm in the same boat. I'm taking Arava and the injectable Orencia. My ex rheumatologist said I didn't have the Psoriatic Arthritis, but along with the arthritis I experienced horrible, I mean horrible psoriasis. My feet and hands were cracked and bleeding and I could barely walk. I started taking Embrel, but it wasn't very effective. Switched to Orencia and the psoriasis went into remission. I was taking methatrexite but that stuff was brutal on me. I started having suicidal thoughts and weird dreams and it felt like my world was crumbling down. Got off that stuff quick.
You may have to experiment with the different meds to find out what works for you. Have patience and keep clear of people with colds and wash your hands a lot. The medications you'll likely be taking will suppress your immune system, so colds can become a huge problem. Get your pneumonia shots.
I'll be 69 in a few weeks and I'm drawing Social Security.

Good luck brother. Not everyone is affected the same.

[Bugler]

Thank you Bakefish. I knew things were wrong for years. I have been in the stroke ward for two different hospital stays over the past five years. I am on daily meds for migraines, RA, BP, etc., and my doctor tells me that while rare, my particular migraines could trigger a fatal stroke.

I have had 22 surgical procedures, most of which have been orthopedic. I have metal in my lower back, my neck, my right shoulder, and my right elbow and have had four shoulder surgeries, three spine surgeries, elbow, hand, and knee.

Whether moving or not, I have been in pain pretty much constantly but due to the nature of my job, I have to keep a clear head, so I do not take pain meds other than a generic over the counter headache pill. At night, I take a pill prescribed for MS patients to deal with nerve pain and to help shut my mind down so I can get at least three hours of sleep a night. I used to take Aleve for pain but had to stop due to multiple ulcers on my esophagus.

I had the same doctor for 30 years and even though I kept telling her about my various pains, she never ran a blood test for RA. She retired last year and I got a new doctor. After my first visit, she ordered blood tests for several indicators for RA and they came back positive. I then spent five months waiting to see the specialist. I was on the first medicine for a few months but it did not help. Now on the second medication about two months ago, he had to double up the dosage and we will have to see.

The reason I mention all this is that while my RA diagnoses were just this year after labs a year ago, I suspect I have really had RA for much longer. I turned 57 last month but my joint issues, which led to my first spine surgery, started at the age of 22.

I am still learning this RA stuff. I have not had my flu shot yet because I was uncertain whether I could, due to the RA medicine lowering my immune system. I am scheduled to see my RA doctor in a month. We purchased an RV last year because my wife, seeing my health go down, said we need to live now while we still can. While adjusting to this is a struggle mentally, I take comfort that I have saved a lot of money for my wife's future and also have a ton of life insurance, taken out before I knew I was sick.

Like you had, I have the bad dreams, but I have had those for a few years. Thank you for your guidance and insight.

Bug

[orchard frank]

Wife was diagnosed with RA several years ago. Being a lifetime RN, she kept up with all tests, physicals, etc, RA markers never showed up until she was in late 50's. Typical is younger than that, although there is a wide range of RA effects on different people. RA itself can have a huge range of symptoms and how fast it does or does not progress. She has been on a weekly dose of methaltraxate for quite a few years, has not had any real negative effects. She was never a fan of strong painkillers, did use them when necessary. Lately, she has been prescribed medical marijuana, and seems to be working quite well. Doesn't smoke anything, some drops that contain cbd and thc that seem to be helping with joint pain and sleeping. She says there is no real "buzz" connected to it, so far, so good. If she orders some headbands and lava lamps from Amazon, we'll see. Good Luck, definitely see a reumatologist,

I once attended a seminar on by pathologists that said be very careful about certain lab tests. They said that not only patients but most doctors want to lean on laboratory tests for diagnosis and to tell them what to do. Some lab tests are pretty accurate others are very suspicious. RA latex labs are notorious for being inaccurate. Mostly giving false positives. I'm not saying you don't have RA just take lab tests with a grain of salt. I had a positive RA test several years ago and a follow-up one showed negative then another positive test following that in two more negative tests.

So maybe you do but you probably should have other tests to clarify things. In my case I had a positive Lyme test. That's another test where lyme not show up. I've had people that I know also had negative Lyme tests and then since then had positive tests. So many doctors don't know about the fact that if you're bitten by a tick it may take weeks if not months for it to show positive. Many of them when you are presenting with a recent tick bite will do a Lyme test and give you benediction that you don't have Lyme because the tests showed negative. But it would take longer to show a positive. They are trying to come up with better Lyme test that are more accurate reducing false negatives. But I hope you've had at least Lyme looked at just in case. But then again it may not be definitive whether positive or negative.

Yeah it's a mess.

. What has helped me to some degree over the years is a good brand of fish oil with a high EPA the one I have has 1060 per tablet. I get it from Nordic naturals as it doesn't do that fishy burping that cheaper products to as it's more highly refined than most. There are other brands out there that are good though. Hard to find one with that high EPA.Note most studies say it will take months to show an effect but Omega3 has a number of side benefits. There are a number of studies showing that Omega 3 helps RA IF given enough time ,maybe 6 months or more, You can check them out over on Pub Med.

I also take circumin with bioprene, and chicken college 2, I've improved since taking these so I think it does work at least for me but do your own research there are other anti-inflammatories that are natural that won't tear up your stomach and cause other side effects.

[Jatar]

I was recently diagnosed with RA, I am 61 and symptoms started about 2 years ago but didn't pay too much attention to it until I woke up one morning in misery.
Moving forward I was prescribed Methotrexate, but it didn't agree with me. Now I am using Humira and I also take CBD around 12.5 mg per day. Swelling has gone done and the aching in my hands is virtually non-existent .

[rwl]

**** I feel bad for you guys. I know joint issues and pain, but it is hard to know what others feel or how bad it is for them. Everyone tolerates some thing different. I don't think I am as bad as some others.

I have an "unspecified autoimmune disease, inflammatory Polyarthropy" , as it is stated on my records. They can't nail down what it is. The rhumatologist told me she would say it was Psoriatic but the tests don't come back that way and I had no Psoriasis at the time I was seeing her. I was tested for Lupus, seeing it is in my family and Lymes many times. Well in just the last month I think I have psoriasis, a large dry patch of skin that is raised. So maybe that will help lead to a diagnosis, not that it matters much as far as how I feel goes as to what they want to call it. It might be nice to not have it unspecified.

I've chased joint pain all around my body from my hands that wouldn't uncurl, to ankles that wouldn't allow me to walk, lower back, shoulders knees and now hips. I've had stomach issues with an inflamed stomach lining. Surgeries on back, both knees, one shoulder and now one needed for right hip, but while waiting till after deer hunting my left is actually worse. But those have all been some sort of damage like Labrum tears, tendons, cartilage so I am not sure how that works out. My back was for degenerative spinal disease, all the joint have arthritis damage.

Question for you guys, does it always seem to flare up int he fall? It does for me and my wife who has crohns which is an autoimmune. I've read that autoimmune diseases typically flare int eh fall, and I know mine does.

I hope everyone gets the relief they deserve and can function and live a good comfortable life.

[Bugler]

Originally Posted by joint problems

I once attended a seminar on by pathologists that said be very careful about certain lab tests. They said that not only patients but most doctors want to lean on laboratory tests for diagnosis and to tell them what to do. Some lab tests are pretty accurate others are very suspicious. RA latex labs are notorious for being inaccurate. Mostly giving false positives. I'm not saying you don't have RA just take lab tests with a grain of salt. I had a positive RA test several years ago and a follow-up one showed negative then another positive test following that in two more negative tests.

So maybe you do but you probably should have other tests to clarify things. In my case I had a positive Lyme test. That's another test where lyme not show up. I've had people that I know also had negative Lyme tests and then since then had positive tests. So many doctors don't know about the fact that if you're bitten by a tick it may take weeks if not months for it to show positive. Many of them when you are presenting with a recent tick bite will do a Lyme test and give you benediction that you don't have Lyme because the tests showed negative. But it would take longer to show a positive. They are trying to come up with better Lyme test that are more accurate reducing false negatives. But I hope you've had at least Lyme looked at just in case. But then again it may not be definitive whether positive or negative.

I was tested for lyme disease a number of years ago and it came back negative. When I was tested for RA, my primary doctor tested me for the Anti-CCP antibody test and that came back medium positive. Five months later, my RA doctor ran the full panel of RA tests. This time the Anti-CCP antibody test came back positive again but a few points lower than the first test.

The RA doctor said another test to confirm was to put me on a high dose of prednisone for a month. If it helped, it could verify the RA. Within 11 hours of the first dose, everything felt great and stayed that way the entire month of the test. Then he phased me off of the prednisone and put me on my first RA med. The pain and swelling in many of my joints came back. Then on to a different RA medication. It helped barely but not much at all. He then doubled the dose and we are seeing how it does for a few months. He said that the does not want to move to me injectibles this early in the process.

[Bugler]

Originally Posted by rwl

**** I feel bad for you guys. I know joint issues and pain, but it is hard to know what others feel or how bad it is for them. Everyone tolerates some thing different. I don't think I am as bad as some others.

I have an "unspecified autoimmune disease, inflammatory Polyarthropy" , as it is stated on my records. They can't nail down what it is. The rhumatologist told me she would say it was Psoriatic but the tests don't come back that way and I had no Psoriasis at the time I was seeing her. I was tested for Lupus, seeing it is in my family and Lymes many times. Well in just the last month I think I have psoriasis, a large dry patch of skin that is raised. So maybe that will help lead to a diagnosis, not that it matters much as far as how I feel goes as to what they want to call it. It might be nice to not have it unspecified.

I've chased joint pain all around my body from my hands that wouldn't uncurl, to ankles that wouldn't allow me to walk, lower back, shoulders knees and now hips. I've had stomach issues with an inflamed stomach lining. Surgeries on back, both knees, one shoulder and now one needed for right hip, but while waiting till after deer hunting my left is actually worse. But those have all been some sort of damage like Labrum tears, tendons, cartilage so I am not sure how that works out. My back was for degenerative spinal disease, all the joint have arthritis damage.

Question for you guys, does it always seem to flare up int he fall? It does for me and my wife who has crohns which is an autoimmune. I've read that autoimmune diseases typically flare int eh fall, and I know mine does.

I hope everyone gets the relief they deserve and can function and live a good comfortable life.

Sorry, you are going through this. I have a pretty high tolerance for pain. The first time I had a disk removed from my neck, I was snorkeling in the Bahamas 10 days later. When I broke my leg and then my hand, I was back to work the very next day on both counts. When I broke my ankle twice in a month and three times in a year, from three different sports, I was back to crossing the campus the next days as I went to class and hoped up and down the stairs to my 4th-floor dorm room.

However, with the RA, the pain just wears you down because it is hitting the matching joints on both sides of the body at the same time, with the points burning, spasming, and freezing up on a consistent basis. Before I was diagnosed with RA, I had been told for two decades that I had degenerative joint and disk disease. Even when I could mentally box out the pain, my body still dealt with it by keeping my blood pressure in the 190-218 range. Everything takes a toll, lol.

[Bugler]

Originally Posted by Jatar

I was recently diagnosed with RA, I am 61 and symptoms started about 2 years ago but didn't pay too much attention to it until I woke up one morning in misery.
Moving forward I was prescribed Methotrexate, but it didn't agree with me. Now I am using Humira and I also take CBD around 12.5 mg per day. Swelling has gone done and the aching in my hands is virtually non-existent .

Glad you have relief and are able to keep things in check.