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.

@susanb0406

Hi, I'm Susan. I was diagnosed with RA 2 years ago and put on a med/sm dose of methotrexate. I woke up one morning following a serious surgery unable to move with all my joints flaming. Sudden onset RA triggered by body trauma while healing. Before this I had no symptoms. I exercise several times a week, walk regularly, went on WW to lose 50 lbs (20 lbs to go), watch my diet, paying special attention to sugar and fat. Currently I'm symptom free. I do notice when I don't follow these guidelines I experience mild symptoms that I can control by taking really good care of myself again. It's hard to stay away from alcohol, sugar, and fat but my body is quick to remind me this is my new normal if I want to feel good and move without pain. The article John suggested above gave me some good talking points for my next doctor appt. Thank you!

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Hi Susan @susanb0406, Congratulations on your weight loss journey! I've struggled with that most of my life until the last couple of years. I was a WW member for quite a few years until I decided it was just a matter of me making better decisions. It definitely is a struggle to stay away from sugar, alcohol and all that processed food but once you've been off of it for awhile, it does get easier. There is another discussion I think you might find really helpful for your weight loss journey.

Low-carb healthy fat living. Intermittent fasting. What’s your why?: https://connect.mayoclinic.org/discussion/low-carb-healthy-fat-living-intermittent-fasting-whats-your-why/

Have you ever tried intermittent fasting to help you on your weight loss journey?

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@jilliemo12345

The research doesn’t support my subjective results and doesn’t offer any explanation for them either. For me they work and for others I’ve gifted them to, so I will continue to use them and share my experiences with others.
When medicine fails seeking alternative help can bring relief.
Our minds, faith and belief are powerful tools.

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I have a purchased new samper of rare earth magnets of four different strengths. Three are for the body and one pair for water jugs for activating the warer. The different strengths allow flexibility for working up from low to high tolerance and for different treatment options. I started on the compan's baby steps protocol but found with all my medical problems, after the 2nd day, the side effects were more than I could handle. Herkeimer? So, I dialed back and began a program I designed for myself., working some on overall, and working directly on stomach, kidney, urinary. The magnets come with explanations and a whole book explaining placement and other information. which is far more complicated that most researchers would be willing to understand. Two days after I started using the magnets, I had a ganma globulin (Hizentra) infusion (/m on my 6th year) , which is a weekly subcu process I do on myself and a blessing that keeps me alive. For the first time in years, the infusion went into both thighs equally and easily, and much faster than post kidney disease. And without leakage problems. This may sound like not a big win, but the healing it presumes after just two days of relatively brief magnets is a very positive sign to me. More updates coming if the group is interested. My issues are multipl: 80 years old,, bedridden after the Moderna Covid vax (1/21) which zapped my immune system, reactivated quiescent Hashimotos, and introduced RA symptoms along with multiple infections and other problems that had previously healed. I am now off all post vax antibiotics and am working with the magnets to restore my energy and quiet the autoimmune reaction.

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@apacemn1

Hi, my name is Ashley. I have recently been tentatively diagnosed with early RA and my doctor has prescribed me methotrexate. I'm really scared to take this drug or really any DMARD because of the side effects. Luckily, they have caught it early and I don't have any joint damage yet. Just pain and inflammation in several joints, mostly small ones in my body. I am thinking of what I can do naturally to try and help before taking the drugs or if I should just start taking them because it could help my prognosis. Has anyone else found that diet and exercise has made it possible for them to avoid the drugs? I am willing to try anything to avoid having to go on serious medication.

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You are very fortunate to have an early diagnosis. My RA wasn’t diagnosed early, I’d had symptoms for years but my labs didn’t pick up or the correct labs were not indicated. I have lung damage which after 7 years on Cellcept and Plaquinil has not progressed. I also have Afib.
The joint pain is present but the damage has been greatly slowed. I’ve not experienced any side effects from these meds.
I cannot speak about using diet only, but can offer that sugar is something that increases symptoms and I avoid it and other carbohydrates as much as possible.
I’m grateful for these drugs and only wish I’d been diagnosed much earlier.
Wishing you the best with your decision about treatment.

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@kozlo52

be very careful with arava. i was on this one and had been losing skin from the genitalia and penis so bad that i went to a special dermatologist who told me to get off it immediately or i would have lost my scrotum, as it happened with someone else. I also was very itchy with this from the very start. Check your skin carefully especially in the private area. These RA drugs can be quite dangerous....kozlo52

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I was put on Arava and lasted maybe 2 months until my liver enzymes went way too high and my rheumatologist took me off of it immediately. Before that I was on methotrexate which I injected myself. One night I had a mild anaphylactic reaction after my last methotrexate shot. That had never happened to me before, even when I was on methotrexate in the early 2000s. My methotrexate was discontinued. Next week I am going to go onto an infusion of Orencia, a biologic. Hint about finances: if anyone is on Medicare and needs a biologic, make sure you can get an infusion; Medicare Part B picks up the tab for infusion treatments of certain biologics.

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@ellens

I was put on Arava and lasted maybe 2 months until my liver enzymes went way too high and my rheumatologist took me off of it immediately. Before that I was on methotrexate which I injected myself. One night I had a mild anaphylactic reaction after my last methotrexate shot. That had never happened to me before, even when I was on methotrexate in the early 2000s. My methotrexate was discontinued. Next week I am going to go onto an infusion of Orencia, a biologic. Hint about finances: if anyone is on Medicare and needs a biologic, make sure you can get an infusion; Medicare Part B picks up the tab for infusion treatments of certain biologics.

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@ellens. You’ve certainly had problems with the meds! Are you doing OK with the changes in medications?
Have your liver enzymes gone back down, yet?

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@becsbuddy

@ellens. You’ve certainly had problems with the meds! Are you doing OK with the changes in medications?
Have your liver enzymes gone back down, yet?

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Yes, my liver is fine now. Thanks for asking. I am scheduled to start my Orencia infusions on Wednesday, July 13. Then we'll see how things go. I have a neighbor who had terrible psoriatic arthritis and was put on biologic infusions by the Mayo Clinic. He said the infusions turned his life around. He had 2 side-effects, a small skin cancer that was removed and cataracts which were also removed. I guess I could deal with those things if they should occur. He is the person who encouraged me to take the leap to a biologic. I have a good rheumatologist who will be monitoring me.

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I have small fiber neuropathy the only thing that blood work showed was rh factor of 146 . Does anyone have a number so great ? What's urs ?

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I've had RA for many years. I looked back on tests taken back in 2017 and mine was 237. I'm not sure what it is now. They don't take that test anymore for me since the diagnosis is made. I also have neuropathy that came on about a year or so ago. I've had knee and shoulder joint replacements done and will have a new knee replacement for my other knee in September. So my RA is quite active.

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I’m Diane and was diagnosed in 2008 with RA. Of course my symptoms started way before that as I’m learning from most of us..is pretty normal. Before I was diagnosed I had horrible flares that laid me down and I did not know what was wrong. I didn’t know that your whole body could hurt that much. When I went to my first rheumatologist he started me on all the pills methotrexate and others that I cannot spell. All to no avail because for one reason or another...I could not tolerate. At this point..I’ve been on a long long list of meds...Orencia Enbrel etc. Now I’m on Xeljanz and have been for about two years. And for me it is a miracle drug. Of course I still have symptoms but my pain is usually manageable. Every day I thank God for Xeljanz and Pfizer for helping me..with my insurance to get the medicine. Thank you for starting this group I have wanted to be in a group of fellow RAers for a while.

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Hi. My name is Clare. I’m a retired RN and relocated to South Carolina from NY for a year and a half now. Initially, I was dx with lupus 34 yrs ago which then switched to intermediate Ra.

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