I'm new here, but not new to RA. It has been 54 yrs. I have been dealing with RA. Since 16 I have had treatments, love to talk with others.

[dryan]

I live in the US and have been involved with the Arthritis Foundation. Problem is there is such a difference in types of arthritis. RA has had long term effects on my health and others with osteoarthritis or varying types of disabilities can't always relate to RA and its effect on the whole person. I'd love to team up with others who share this disease specifically. I am wondering if a RA group exists in the US? I have been a medical social worker for the past 35 plus yrs. and enjoy technical discussions about auto-immune disease. Also wanting to know what is new in research thus far.

[Hidden]

Hi dryan

Sorry to hear that your struggle has been such a long one.

There are sites for RA that are US based, one on Fb.

rheumatoidarthritis.net/vid...

Also rawarroir.net

I found their stuff, like most, is very much influenced by big pharma, like all healthcare there, and increasingly so in the UK too.

[Hidden]

Before i found NRAS in uk i went on RA warrior site a lot. It is US based and i think she also has foundation for people with rheumatoid disease there. People will think i work for them soon as already plugged her book in here lol! I don't but did find it good site and really helpful with like minded people plus more help with US medical system. Good luck

[dryan in reply to Hidden]

Thanks much. I am new on this site but will try to keep up! I plan to follow up as you suggest - much appreciated. Here in US I think we are fortunate to have our health care system, although, this will be changing I am sure. More research is so important. Patients need to be involved with their own outcomes and pro-active wherever one lives, right?

[dryan in reply to Hidden]

Thanks much for your interest. Sorry for the late reply, I am still learning to navigate this large system. I will follow as you suggested, best to you.

[Kai--]

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Warm hello, dryan. 👋 ☺️

Another stateside HU (HealthUnlocked) forum is Cure Arthritis Community: healthunlocked.com/cure-art...

It ( healthunlocked.com/cure-art... ) reads:

"We’re a US-based non-profit searching for a cure to help an estimated 50 million Americans and 300,000 children afflicted with various forms of arthritis. This arthritis foundation is focused entirely on research. The Arthritis National Research Foundation is committed to funding cutting-edge research and pushing the field of arthritis research forward!"

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An additional U.K. HU forum is Arthritis Action: healthunlocked.com/arthriti... whose mission is: healthunlocked.com/arthriti...

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Wishing you the very best, dryan. 🙏 🍀 🌺 🌞

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[dryan in reply to Kai--]

Thanks much for your response. I will follow up. I have found that the Arthritis Foundation here in US is very connected to pharmaceutical industry and often I get overloaded with ads for the biologics I have taken for some time. I can no longer do so due to liver failure issues. I have followed with alternative medicine in the past with good response. My interests are primarily what lies ahead for RA and research, as you point out. I like to discuss technical problems and am pretty well informed on treatments, etc. I am a motivated person, having worked as medical social worker in many settings for the past 40 yrs. I'd like to connect with positive-minded individuals facing the challenges of RA. I am so fortunate to be functioning as well as I am these days and feel positive attitudes are prime. Thanks again.

[Kai-- in reply to dryan]

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Good to hear, dryan. 🙏 ☺️

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Thinking 🤔 significant RA research 👩‍🔬 ⚗️ 👨‍⚕️ 🔬 (where movement/ progress) is happening (& will continue to happen) is: healthunlocked.com/nras/pos...

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[Right at the tip of our fingers 💅, the tip our tongue 👅 , the tip of our nose 👃 , in our very gut 🤰 lies the heart 💗 of the matter. 👍 ]

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Delighted 🤗 you're functioning as well as you are 🙏 & couldn't agree 👍 with you more about being motivated 🤜💥🤛 , connecting with 🤝 positive-minded 💁 💁‍♂️ people, & having a positive ➕ attitude 😊 .

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There are technically knowledgeable folks 👩‍🏫 🤓 👨‍🎓 👩‍⚕️ 👨‍🔬 here who are likewise well-informed on various treatments 💉 💊 🥗 😑 💆 🙇 💃🏻🕺 who can discuss 🗣 💬 'technical problems' with you. 👍

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(Think you'll feel right at home 🏡 diving into 🏊 the nitty gritty details 📈📉 📊 📑 ⚗️ 🔬.)

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Very much looking 👀 forward 😃 to learning from your experience & insights, dryan. 😌 🙏 ☺️

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Welcome aboard 🛳 , kind sir. 🙏 😌

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🍁 🎃 👻 🕷 🕸 🦇 💀 🍂

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[dryan in reply to Kai--]

Dear Kai, just reading your message now and it is much appreciated. I plan to follow up on your advice and suggestions. I am in the US and have good health insurance, so I have several doctors to work with. I know I am fortunate and always have functioned as a health care advocate. I was (and am) a medical social worker and deal with sick individuals as well as close relationships with nurses. I have a great deal of respect for the health care field for sure. I am happy to see responses so soon and know I will enjoy some good info and discussions. My name is Dorothy, just so you know. I probably should have set a different ID. Hope to continue with you. Be well.

[dryan in reply to Kai--]

Just a follow up to my most recent reply to you re: alternative medicine. The individual who was very excellent, now in San Francisco Bay Area in US is Daniel Dunphy - web site - Regenesis Medical Group, also on face book. He has extensive background in Chinese medicine as well as homeopathic treatment, etc. Just FYI. Regards, Dorothy

[Kai-- in reply to dryan]

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Oops . . . beg pardon, kind 'madam'. 🙏 😌 😬

Delighted you've access to good health insurance/ care, dryan/ Dorothy. 🤗

Wonderful, also, you've a close working relationship with nurses 👩‍⚕️👨‍⚕️ & access to several doctors 👨‍⚕️👩‍⚕️ as well. 👍👍 Outstanding!! 😃

Wonderful, wonderful resources to tap into as needed. 👍👍

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[Aside: We've new-found awe for our local medics as 2 hospital stays (in 2 different facilities in just as many months) revealed the truly outstanding healthcare we've access to. The nurses, physicians/ specialists were/ are remarkable. 😯 Hearing horror stories & misfortunes of others makes one appreciate (& acknowledge) when one receives ('stumbles into') exceptional care. Thank gawd for skilled, competent professionals. 🙏 Genuine 'life-savers'. 😌 ]

I can only say to you (that within context of our most recent experiences), we are thoroughly impressed with each & every healthcare professional we'd encountered & were/ are deeply appreciative of their life-saving efforts. So, just in case you (in your field) don't hear it enough — a deep, heartfelt Thank You!! 💓 🙏

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I can't imagine working routinely with the unwell 🤕 🤢 😷 as a medical social worker/ a health care advocate. 😯 How demanding, stressful, emotionally draining it must be? 🙏 🤔 😳

You touch lives, 'save lives', for those on the receiving end in the most critical/ stressful of times. We can't thank you enough for what you do. 🙏 😌 ☺️

You must have to be of 'special disposition' 😇 — a steadfast rock 🗿 — to work in such a field to deal with sick people & to be supportive of their distressed families/ loved ones 👨‍👩‍👧‍👦👨‍👩‍👧‍👦 while navigating the complexities & nuances of the 'medical maze' 🌀 . Gawd bless you for what you do for so many families!! 😌 🙏

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Keep as well as you can, dear Dorothy, & keep tapping into every available resource. 👍👍

Keep taking gentle, loving care of yourself. 😌 💕 ☺️

The new possibilities/ approaches are truly inspiring & remarkable. 😃 They reveal to us there's "more than 1 way to skin a 🐈 " 🙀 😳 (pardon the expression. 😂 🙃 ) — holding great promise for new people coming up as well as long-time, ole timers seeking to improve QoL (Quality of Life). ☺️ Something for everyone! 😃 No matter where we fall on the spectrum 🌈 ! 🤗

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🙏 🍀 🌺 🌞

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[dryan in reply to Kai--]

What a kind and encouraging response from you, thanks very much. I now am semi-retired (I say semi since I find it hard to accept that I am not working every day!) I have accepted my limitations a little better than I could have yrs. ago. Actually, when I rejected one of the biologics suggested to me by a young rheumatologist, she said I was in denial. My response, there is something called "healthy denial," which has kept me busy for yrs.!! There is a lot of negativity and judgemental thinking among professionls in the medical field I think. It takes one who is also a patient to fully understand the struggle, right? I have found the Arthritis Foundation here in the US has limited options for people other than traditional meds. This is not at all interesting to me anymore. I was a group leader for them and went into training in NYC. The people themselves were more interesting (with some good ideas) . I like more open-minded approaches then traditional medicine can offer. I think patients need both. I do have a very good rheumatologist who has known me for yrs. He is not involved with alternative medicine but supports my beliefs. Anyhow, don't want to get too long-winded now. I appreciate the conversation and will be looking into nutritional medicine once again to see what is new on the horizon. Take care of yourself as well.

[Kai-- in reply to dryan]

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Laughing so hard . . . 😂 😂

Think we've similar experiences 🙃 & arrived at similar conclusions, dryan/ Dorothy, perhaps through different routes. 😂

Yes, yes my beloved rheum. (as much as we respect her), has kindly allowed me 'unencumbered' (sorta speak) to pursue my supplemental dietary/ lifestyle approaches under her (much appreciated) watchful eye 👁 .

Although she can't 'formally/ publicly' endorse anything I'm doing (dietarily or lifestyle-wise), she typically says at the end of each visit " . . . keep doing what you're doing, you're doing well." 😳 ☺️ 🙃

[Don't know how many patients 🤕 🤒 🤢 😷 she says that to, but I suspect not many. 🤔 ]

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Yes, yes, . . . sadly the medical profession appears(?) to silently 🤐 have its metaphorical 'hands tied' ➰ ✋🤚➰ hindering physicians 👨‍⚕️👩‍⚕️ from speaking out 🗣💬 (or formally endorsing) anything 'out of their bailiwick'? 😳 🤔

[Noticing a bit of cognitive dissonance 😣 when it comes to what can be said publicly & what's said behind closed doors 🚪. 😳 😯 🙃 ]

Seeing the newer/ younger crop of physicians 👩‍⚕️ 👨‍⚕️ coming up being more receptive/ open to different approaches. 👍 Instead of broaching topics with a deriding snort 😤 , they're (thankfully/ blessedly 🙏 ) genuinely interested & supportive. 😌

("Oh the times, they are a chang'n. 🎶 " 🙏 ☺️ 👍 )

Yet, our rheums. know which patients are doing well/ improving & which are on the downward slope. 😔 😯 They appear to be unable(?) to freely speak up (or speak out)? 🤔 🤷‍♂️ 🤦‍♀️

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Bit more on nutritional med./ lifestyle approach that may interest you (if you're not already well aware of them):

👨‍⚕️ Why Does the Medical System Ignore the Importance of Diet? A Fable Told by John Robbins: healthunlocked.com/cure-art...

👨‍⚕️ Dean Ornish, Neal Barnard, T. Colin Campbell, Caldwell Esselstyn, John McDougall, Michael Klaper, Michael Greger: healthunlocked.com/nras/pos...

👨‍⚕️ Dr. Michael Greger ('Sense & Sensibility') Shares "How Not to Die": healthunlocked.com/cure-art...

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Looks like ". . . we're not in Kansas any more", Dorothy. 😄

And, we've no need to 'click our heels twice' 👠👠 to 'get back home' 🏡 . . .

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Once we start improving, we're not only over the rainbow 🌈, we're over the moon 🌝 with renewed joy & fuller 'living of life'. 🤗

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🙏 🍀 🌺 🌞

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[dryan in reply to Kai--]

Hello, friend. I have to laugh, I actually lived in Kansas in the 1970s and people would ask me (after a tornado watch or warning), so "wheres toto?" My RA was very active in the middle of the US there, what with the changing baromater, etc. Anyhow, I am going to return to my past yeast-free diet and perhaps see a good alternative medicine MD. By the way, the individual who treated me in the past now lives in California. He has a web site and sounds much like yourself in background (although I don't think he has chronic illness issues). He is a health scientist, treats people all over the world. You may know him, Daniel Dunphy. I will look up his web site. Thanks for your input again, best, Dorothy.

[Kai-- in reply to dryan]

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😯

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🌪 🏚 🐶 😳

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😄 👍 ☺️

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Thank you kindly 🙏 , dryan/ Dorothy, for introducing us to:

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Daniel Dunphy, 👤 Facebook: facebook.com/daniel.j.dunphy.1

Regenesis Medical Group, 🕸 Website: regenesismedicalgroup.com/d...

San Francisco, California USA

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(Not familiar with DD's work, but he may well be a good contact

👉💥👈 for folks in his area. 🤔 👍 )

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[Mandy8175]

I am in the U.S. and would love to chat! I was diagnosed in 1987 at the age of 12, but was never educated or treated by parents!

I am in the beginning of MTX, and take sulfasalazine too! I tried Hydroxycloroquine but had hearing issues.

Hope to hear from you soon!

Mandy in KY

[dryan in reply to Mandy8175]

Hi Mandy, so nice to hear from you. I am just getting started on this website so hope I can express myself adequately. It would be nice to chat and talk "shop" as they say. Boy, you were so young to have to face this issue. It's been a long road for me as well and I think we can probably relate to each other, even though I am older. I am very positive minded and have been through a gamet of treatments over the years. I will try to get back to you quickly if you want to set a time to chat. Just let me know. I am in NY on eastern standard time. Hope to continue and thanks for your response.

[ragurl]

Hi Dylan, I Am in US to. Been dealing with RA for 28 years. Not as long as you but it gives me hope your still working and coping 😀

[dryan in reply to ragurl]

How are you managing after this time? Do you have a good rheumatologist? Do meds agree with you, etc? I think when you start to feel better it helps the spirit for sure. Best of luck to you.

[ragurl in reply to dryan]

Thanks, I had the best Rheumatologist for 26 years then he retired due to his own health issues. My medications were working well until this year. I am experiencing severe mouth ulcers that start with a new one small cold sore. New doctor is taking me off me Humira and leflunomide. So I am in between meds and first timeyears I have not been stable. Tough space to be in. Hoping that mouth ulcers stop and enbrel will be med I go back on works. You? What meds are working for you and what about your RA doc is a

[dryan in reply to ragurl]

Hi there, just to say, I too had terrible mouth sores when I was getting gold injections many yrs. ago (not sure if they even use gold now-a-days). Anyway, they eventually went away when the injections were stopped. My MD at the time said this was a sign of toxic reaction to this treatment, much like chemo. responses some have. Since I developed liver failure (severe) almost 4 yrs. ago this month, I do not take any of the biologics. I do take "Cellcept" which is an immunosupressent. I have auto-immune hepitatis (they think) and so this cellcept helps the RA as well. Trouble is this med. is given to those who have had a transplant. I did not but am doing pretty well on this med. I did take the infusion, "Orencia" before getting sick and this did help the RA dramatically. Oh boy, the side effects to all these meds are bad. Have you tried any alternative treatments? Hope you will start to feel better soon. Best.

[ragurl in reply to dryan]

It is so interesting to hear others story. I have heard of gold shots but never received that treatment. When did your liver fail? What medication do you think was the major contributor or do you think it was a combination? I have never heard of Cellcept. My doctor mentioned Orencia as a next treatment but we are going back to Enbrel, so we will see. I have been on western medicine so long I have a fear that medicine or alternative treatment won't work for me? Do they work for you? How did you become open to eastern treatments? Biological medication has been so amazing changed my life so it's so painful to think I can no longer use medication due to side effects.... #findacure

[dryan in reply to ragurl]

Hi again, thanks for your thoughts. I had liver failure in fall of 2013. It started with just feeling some nausea and fatigue so I went to a GI doctor I know, he ran some tests and nothing unusual showed. Into another month I was still not better so he did a liver biopsy, which revealed damage or necrotic tissue of about 45 % of my liver. Within one week I had severe respiratory problems, edema, could not breath. A very long story short, my liver got increasingly worse and within 2 weeks I had 85% liver failure. I was in acute care and liver team thought I would get a liver transplant on emergency basis. I was really sick. Anyhow, due to their good c are, etc. (I was inhosp. 8 weeks) I avoided the transplant and gradually liver enzymes got better. I am still followed by a liver physician. He feels I developed autoimmune hepititis. They are not sure of the cause since all the meds I took in the past never ever showed any liver problem. I go faithfully for any labs I need, etc. They think it may have been a virus that hit my liver and being that I have long-standing RA, I was prone to autoimmune problems. Before this happened I had the infusion, "Orencia." They can't say for sure if it was a contributing factor. I also traveled outside the US to Ireland a month before, so I think maybe I did get sick there? I also took a herb called "Valarian" to help me sleep and I have read it can be toxic to liver. Sometimes even all the experts don't know what is a cause of an acute problem. So, I take the "Cellcept" which is an immunosupressive given to people who have had a transplant. Looks like I will be on this most of my life. It does help the RA. Trouble is it is a pain in the neck to take twice daily on an empty stomach. Prior to this i was on high steroids. I am gratefull to be doing as well as I am now, almost 4 yrs. after the liver problem. I know this is a long one, so hope it helps you. I think you must take the advice of your rheumatologist as far as your situation. I got into alternative treatment since I was getting respiratory problems from the prior biologics, enbril, etc. I would love to hear back from you when you can. Just keep an open mind. Take Care, Dorothy

[Ccrowlu]

Hi dyran!

My name is Cortney. I’m am currently a sixteen year old and I’ve had RA for at least five years (probably more) and am almost 3 years diagnosed. Seeing as I’m so young most people don’t believe me but honestly I wouldn’t even know what RA is if I wasn’t diagnosed. If you do find an American group please do let me know because I would love to join there as well!

[dryan in reply to Ccrowlu]

Hi Courtney, I can totally relate to your situation since back when my friends, etc. had no idea what I was experiencing, I too was just learning, going from one doctor to another. I started with a hemotologist. Anyway, you have so much ahead of you and a full life so I hope you have a good rheumatologist. I also got relief in my 20's from nutritional medicine. I used to be in a young peoples group through the Arthritis Foundation. I am also looking now for a US group for RA and will keep in touch with you. I live in NY, near NYC. Best to you. By the way, yrs. ago, before biologics, I used to have to take 14 aspirin per day along with small doses of prednisone, then went on to gold injections and then the pills. What a journey!!

[Ccrowlu in reply to dryan]

I’m not allowed to take more than one aspirin per two days and things such as Aleve and anything else doesn’t really work anymore. At one point when the pain first started the doctor had me taking a daily Aleve and it worked for the most part till I thought I didn’t need it anymore. Then I went in again and they told me my cartilage was eroding (kinda true) and that there was nothing they could do. The next year I was sent to physical therapy because they thought my muscles in my knees weren’t strong enough and when I hardly felt pain the physical therapist said I could stop going. After a few months I was in pain again and went back several months later and was finally diagnosed correctly. I haven’t seen a rheumatologist in a year now and am trying to get in one but it is difficult with the fact that I move every few months.

[dryan in reply to Ccrowlu]

Gee, sorry you are having all the pain. Sounds like you absolutely must see a rheum. as soon as you can since other doctors won't be able to treat you appropriately (I think). I may not be totally right here, but just saying you need a good specialist to help you with this disease. I know moving makes it so hard, but is there anyway you can prioritize yourself and say, right now, you are the most important issue to handle? Good luck and please let me know what I can help you with.