Rheumatoid Arthritis (RA) - Introduce yourself and meet others

Let's talk about living with rheumatoid arthritis.
As moderator of the Autoimmune Diseases group, I noticed that several people were talking about RA, but those conversations were scattered throughout the community. I thought I would start this discussion to bring us all together in one place.

Let’s grab a cup of tea, or beverage of choice, and let's chat. Why not start by introducing yourself?

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

@spruceriver

R A doesn't seem to follow that approach. It is more like riding a new horse that totally has a mind of its own. The situation is certainly not boring and is interesting like an unresolvable riddle. I think with the horse, there is a clear distinction. The horse is the horse, and I am the rider on the horse. Of course I have to be aware of what the horse will do, but there is no point in getting angry at the horse. There is no point in thinking I can change the horse. Maybe it went through some traumatic experience as a colt, and we simply can't go back and correct anything. Maybe with R A we are ourselves dealing with a condition that began years ago and now with what seems the coincidental alignment of certain things, is now becoming glaringly real. We might be wise to get off the idea that the horse has to be changed. The ride might not be that easy, but we can enjoy the natural surroundings along the trail. The ride isn't simply us on a horse. The unruly horse shouldn't spoil things in our minds any more than we can spoil things in the horse's mind.

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I am developing a very wobbly gait. I always thought it was the muscles that controlled the gate. It seems the nerves on the bottom of my feet are now not able to make the subtle adjustments with messages to the muscles in my legs that would make a smooth gait. Still I can walk. I am getting very pigeon-toed, but I do find keeping the laces in my boots very tight, that I am not as likely to fall.
Maybe we just have to accept we are far more complicated than the way our minds categorize and place things on various lists of priorities. Our minds as children no doubt had a very different way of prioritizing things, like what was under our bed at night. We may not be aware of them, but our autoimmune system may have very precise evaluations and its own conclusions. As with that unruly horse, we don't really know about that. It seems too risky to try to destroy anything, as we don't know the extent of the damage. our goal should be to negotiate and compromise, finding a workable solution.
I took a recipe for corn bread like my grandmother used to bake, and substituted flax seed and brown rice flour. It tasted very good to me. How long that will last I can't know, but I do know I can try some other combination. ( to be continued)

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There is no way to take the troublesome horse to the barn and ride another horse. For each of us the barn door is locked. It seems just in knowing something over time, however erratic it may be, is a kind of knowing. Knowing seems to be a form of comfort. We know how a hot cup of tea or coffee will taste, and that is a comfort even before we get out of the cold and taste it. I remember at this trail riding stable, they had a genuine Arabian stallion. I was told I could ride it. It was exciting, as if it was about to take off into the air, but it seemed different from the horses I was used to, quarter horses with western saddles. Even with all the issues, it may be best we just go on with the horse we always rode with all its increasing issues. With all our inner conflicts, there seems to be a kind of comfort, really sympathy and compassion in the relationship that can spread to other relationships that makes us a better person. People who always have to have their way and achieve everything they want are in some ways boring people. Our problems as well as our achievements and failures make us unique and interesting. Perfection can be boring. Conflict brings us closer to nature that continually faces conflicts, making us more creative and more alive. I am not saying I want R A, but I am saying it doesn't have to take me down before my time. My grandson gave up trying to teach me to play chess, but I would keep trying if I knew my life depended on it."

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@becsbuddy

@beckydubolsky I know it can be very unnerving to start on new medications, but you really need to if you want your life back. The drug manufacturers are required, by law, to list every possible side effect even if only 1 person experienced it. And some side effects go away as your body adjusts. I have to take medications just to stay alive and the biggest problem I’ve had is keeping track of all of them!
Other members, @kmacky @luki52 and @leale can join us and tell you more about using specific RA meds.
What is your biggest concern about taking the meds?

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I know, taken new meds especially those with side affects can be very scary. The first time I had to take methotrexate for my RA ,I was so nervous & scared because my biggest concern was an upset stomach & vomiting regardless of the more serious side affects. (Vomiting is a whole another issue for me ). After I took it , I was so relieved that nothing happened. Not one! All my concerns, worries & nervousness was for no reason. I probably did more damage to my body than just taken it without having the nervous reaction that I did. After four months on the meds, & it takes four months to feel a noticeable improvement,I can honestly say I’m feeling good My life is back. Trust your doctor & get as much information as you possibly can & you’ll make the right decision. Good luck

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Has anyones vision changed since taken methotrexate for RA. I am having problems & was wondering if it’s caused by my meds

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I was diagnosed with Pulmonary Fibrosis Nov 2020 and RA June 2022. I always wondered if my PF caused the RA. Doctors said no.
I am now in remission w/RA. I have had 10 monthly infusions of Orencia and for me it has been great, no side effects as of yet, never know w/meds. If I had a flareup I took (4) 4mg Methylprednisone then tapered off by 1 each day - nipped it.
Has been a rocky ride, Thankful and Blessed feet on floor each morn.

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@kstar077

My doc wants me to take embrel. It is over $1700. I can not afford that. What to do?

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I am ashamed of big pharma. These prices for medication are criminal. I can’t afford any of it so far. I was on prednisone and methotrexate for 45 weeks and could not tolerate it any longer. Both of those prescriptions had no Co- pays.
I’m seeing a rheumatologist next week and hoping he helps me come up with an affordable plan.

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Help...need some suggestions for coping with an RA flair!

So I have made significant changes in my diet over the last 2 years and it has helped tremendously with reducing my rheumatoid arthritis flares!
I foolishly and with a very cocky attitude decided to have cookies and pancakes.. somehow I thought I deserved it since I've been so "good"... Well it did not take long for my body to kick back at me... I am dealing with a serious flare and my feet... The pain is moving up my legs as well...

I am not a fan of using steroids to deal with a flair. It has been so long since I've been in this position I am looking for any suggestions outside of heat and steroids on coping with this flare up....

What do you do when you have a serious flare?

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My story: I was diagnosed with fibromyalgia 25 yrs ago. I managed it well with exercise, diet, Tramadol, and Tylenol. That was until January 2023, when I was diagnosed PMR is another with RA and polymyalgia rheumatic (PMR). To make an autoimmune disease that attacks muscles. To make matters worse, I had a lumbar fusion in 2020 which is giving me a difficult time. What education do you take? I take 20mg of prednisone daily.

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@jixs

Help...need some suggestions for coping with an RA flair!

So I have made significant changes in my diet over the last 2 years and it has helped tremendously with reducing my rheumatoid arthritis flares!
I foolishly and with a very cocky attitude decided to have cookies and pancakes.. somehow I thought I deserved it since I've been so "good"... Well it did not take long for my body to kick back at me... I am dealing with a serious flare and my feet... The pain is moving up my legs as well...

I am not a fan of using steroids to deal with a flair. It has been so long since I've been in this position I am looking for any suggestions outside of heat and steroids on coping with this flare up....

What do you do when you have a serious flare?

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I won’t use steroids any longer, either. Hope you get some suggestions on your replies!👍

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@dstedman62

My story: I was diagnosed with fibromyalgia 25 yrs ago. I managed it well with exercise, diet, Tramadol, and Tylenol. That was until January 2023, when I was diagnosed PMR is another with RA and polymyalgia rheumatic (PMR). To make an autoimmune disease that attacks muscles. To make matters worse, I had a lumbar fusion in 2020 which is giving me a difficult time. What education do you take? I take 20mg of prednisone daily.

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Orencia and Mtx. Injection
The change in the diet has created the biggest change when it comes to inflammation and fatigue. Sorry about your added pain... invisible disease is no joke. It takes such a toll on you mentally and emotionally.

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