1. < Autoimmune Diseases

Rheumatoid Arthritis (RA) - Introduce yourself and meet others

Posted by Kanaaz Pereira, Connect Moderator @kanaazpereira, Mar 30, 2017

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.

mia447 | @mia447 | Mar 16, 2019
In reply to @boomerexpert "@mia447 I too have sero-negative RA...became active in 2008...IMHO you are being quite over-medicated..." + (show)
@boomerexpert

@mia447 I too have sero-negative RA...became active in 2008...IMHO you are being quite over-medicated...

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@boomerexpert. Thanks for replying and your opinion. I think everyone experiences their disease differently, and for now, I'm still working with my rheumatologist and GP to find treatments that allow me to function as normally as possible - being able to keep working is important to me. We're constantly trying to adjust my treatment to get the best outcome. I'd be interested to know if you also have fibro in addition to RA and to hear what's working for you if you're able to get by with less treatment.

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1 reply
kozlo52 | @kozlo52 | Mar 17, 2019
In reply to @peach414144 "One of my big problems is myself and my doctors cannot tell the difference of which..." + (show)
@peach414144

One of my big problems is myself and my doctors cannot tell the difference of which one (rheumatoid or psoriatic) arthritis is kicking up. Also must include the vascular problems. Terrible, terrible pain, pain. desparitly holding on. Have stayed away from opiods but think now at age 81 it is time for some relief. Do not know if I should or should not go the way of the opiods. Would really appreciate any advice. I am grateful to have this site available for all of us. peach

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you may have a difficult time getting a doctor to write you a script for an opioid. i have had RA for 30 years. i have been on almost all the biologic modifiers with very bad side efects; the worst being failed kidneys (kineret) and torn retinas in both eyes (humira). i have controlled my Ra many years with 1- 10 mg dose of oxycodone and 4 mg of prednisone. Now with this effort to almost stop opioids due to the excessive use, i can't find a doctor in pittsburgh,pa to refill my script. I am being referred to all these pain management groups, of which many don't prescribe opioids. I can't take more than 1 oxycodone due to developing body itch. if i can't get a script i may have to get a license for medical marijuana and try that. those of us who really need this for our arthritis pain are being punished. but if you go on an opioid your digestive track will slow down. I use miralax every day to help promote bile movement.... kozlo52

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2 replies
TERESA LOGAN | @quiteachiver75 | Mar 17, 2019
In reply to @jmjlove "@Peach....just an opinion here. Considering the fact that you have held off so long from using..." + (show)
@jmjlove

@peach....just an opinion here. Considering the fact that you have held off so long from using opioids...1. Low doses will work for you. 2. Participation in life will increase, due to physical comfort. That participation will increase your activity level, actually improve relationships 3. Decrease depression while increasing inner joy and satisfaction with life. That's the upside.

Downside, you may have to deal with a few of the side effects. Ummm...constipation, which can be controlled with plenty of fluids, fiber, increase in activity. Plenty help available over the counter. Your doctor will go over pros and cons. Personally, I am limited on types of pain relief available to me, due to various issues. Opioids help me, but I always have to keep low dose, to avoid complications from use. If I had a natural alternative close in pain relief, I'd do it. But, as of now, I choose living to my fullest.

6 kids, 14 grandkids. Can't participate in family with the issues I deal with daily, that is, I can't without help. With help, I enjoy my life. Again, this is my opinion. Opioids are not the devil. Abuse is. At 81, can't see you doing that. There is a point where we are allowed, under doctors care, to enjoy some comfort. I am far from pain free at the dose I take, but take the edge off and I can move. Pick up babies. Attend activities. Bake and cook for family celebrations.

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I AGREE WITH WHAT YOU HAVE SAID PAIN KILLERS ARE NOT THE PROBLEM ITS THE PEOPLE WHO USE THEM TERESA

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lioness | @lioness | Mar 17, 2019
In reply to @kozlo52 "you may have a difficult time getting a doctor to write you a script for an..." + (show)
@kozlo52

you may have a difficult time getting a doctor to write you a script for an opioid. i have had RA for 30 years. i have been on almost all the biologic modifiers with very bad side efects; the worst being failed kidneys (kineret) and torn retinas in both eyes (humira). i have controlled my Ra many years with 1- 10 mg dose of oxycodone and 4 mg of prednisone. Now with this effort to almost stop opioids due to the excessive use, i can't find a doctor in pittsburgh,pa to refill my script. I am being referred to all these pain management groups, of which many don't prescribe opioids. I can't take more than 1 oxycodone due to developing body itch. if i can't get a script i may have to get a license for medical marijuana and try that. those of us who really need this for our arthritis pain are being punished. but if you go on an opioid your digestive track will slow down. I use miralax every day to help promote bile movement.... kozlo52

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@kozlo52 Welcome to connect Im so sorry these Dr,s ckassify us who are in terrible pain with Druggies we arent I lived in Delmont area all my life till I moved to Calif. Ive used Tramadol since 05 when I fractured back Still I take 1 or 2 Dr here gives me 90 last 3months I have o.a. fibro and other problems I hope you can find some relieve praying for you

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1 reply
boomerexpert | @boomerexpert | Mar 17, 2019
In reply to @kozlo52 "you may have a difficult time getting a doctor to write you a script for an..." + (show)
@kozlo52

you may have a difficult time getting a doctor to write you a script for an opioid. i have had RA for 30 years. i have been on almost all the biologic modifiers with very bad side efects; the worst being failed kidneys (kineret) and torn retinas in both eyes (humira). i have controlled my Ra many years with 1- 10 mg dose of oxycodone and 4 mg of prednisone. Now with this effort to almost stop opioids due to the excessive use, i can't find a doctor in pittsburgh,pa to refill my script. I am being referred to all these pain management groups, of which many don't prescribe opioids. I can't take more than 1 oxycodone due to developing body itch. if i can't get a script i may have to get a license for medical marijuana and try that. those of us who really need this for our arthritis pain are being punished. but if you go on an opioid your digestive track will slow down. I use miralax every day to help promote bile movement.... kozlo52

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@kozlo52 we're in the midst of a typical pendulum swing that humans tend to do...going from one extreme (opioids prescribed mindlessly) to the other (no more opioids for anyone!!). With folks like you leading the way, education and advocacy needed to bring sanity to the table...opioids are the only hope for some people who use them properly.

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boomerexpert | @boomerexpert | Mar 17, 2019
In reply to @mia447 "@boomerexpert. Thanks for replying and your opinion. I think everyone experiences their disease differently, and for..." + (show)
@mia447

@boomerexpert. Thanks for replying and your opinion. I think everyone experiences their disease differently, and for now, I'm still working with my rheumatologist and GP to find treatments that allow me to function as normally as possible - being able to keep working is important to me. We're constantly trying to adjust my treatment to get the best outcome. I'd be interested to know if you also have fibro in addition to RA and to hear what's working for you if you're able to get by with less treatment.

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@mia447 I do not (have fibro) and I do manage my RA with minimal meds...10 mgs of methotrexate once a week, 500 mgs of Naproxyn every three days, and medical marijuana (2:1 ratio CBD to THC)

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1 reply
mia447 | @mia447 | Mar 17, 2019
In reply to @boomerexpert "@mia447 I do not (have fibro) and I do manage my RA with minimal meds...10 mgs..." + (show)
@boomerexpert

@mia447 I do not (have fibro) and I do manage my RA with minimal meds...10 mgs of methotrexate once a week, 500 mgs of Naproxyn every three days, and medical marijuana (2:1 ratio CBD to THC)

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That's great @boomerexpert. I'm happy for you that you can get by with minimal meds. Fibro definitely throws a spanner in the works by amplifying pain. I tried Naproxyn and it did nothing for me, and I don't have access to medical marijuana. Here, RA is treated pretty aggressively to try and stop joint damage, and triple therapy is common . ie. Methotrexate, a DMARD (plaquenil) and then a biologic if you qualify. I can't seem to get below 5mg prednisolone without everything flaring so I'm told to stay on it to prevent joint damage. Thanks for sharing your treatment, It's great to hear what works for other people as I'd love to take less medication and get by with more non-medical interventions. I love my yoga and mindfulness meditation and it does seem to help. I can't see medical marijuana being available here any time soon, and I'm not sure I could take anything with THC in it as I both work and drive.

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boomerexpert | @boomerexpert | Mar 17, 2019

@mia447 if/when the time comes you'll find the right CBD/THC combo for your body. I don't qualify for biologics as I have MAC (serious lung infection). But...I don't work - makes a huge difference in my health!

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kozlo52 | @kozlo52 | Mar 18, 2019

make sure if you are on prednisone that you maintain an proper calcium buildup in your system, since prednisone will strip the calcium out of your bones.....kozlo52

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kozlo52 | @kozlo52 | Mar 18, 2019
In reply to @lioness "@kozlo52 Welcome to connect Im so sorry these Dr,s ckassify us who are in terrible pain..." + (show)
@lioness

@kozlo52 Welcome to connect Im so sorry these Dr,s ckassify us who are in terrible pain with Druggies we arent I lived in Delmont area all my life till I moved to Calif. Ive used Tramadol since 05 when I fractured back Still I take 1 or 2 Dr here gives me 90 last 3months I have o.a. fibro and other problems I hope you can find some relieve praying for you

Jump to this post

thank you for your reply. my next step is to get a medical marijuana license and start with some hope and help there. My friend,pat was on all the biologic modifiers and they did not really help her. she can't take opioids because she gets sick from them. she is now on medical marijuana and says she never felt so good. She is no longer on the biologic modifiers.......kozlo52

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