RA severe pain, what helps?

Posted by ead @ead, Dec 21, 2023

I am diagnosed in the last 4 months with rheumatoid arthritis. We are still trying to find the right treatment to help. Azathoiprine made me sick. I can’t take methotrexate because of my lungs (RA lung disease). I am on humira but have only had 3 doses. My joints are so painful I can hardly walk, my wrists and hands have major trouble trying to hold anything. I don’t think I have ever had pain like this. The=Dr. put me on prednisone for 2 weeks. It helped but he does not want me on it long term. Right now I take 2 ibuprofens when I wake, 3 hours later 2 extra strength Tylenol. I repeat that alternating throughout the day. By late afternoon I can move around better but the pain is never really gone. Sitting down and standing up is a major challenge. A am grateful for any tips, suggestions, or feedback. I am at my wits end and Christmas with family is only 5 days away.

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

I was DX’d with RA in mid eighties and on methotrexate and simponi infusions. Quit thirty years of massive opioid use for cannabinoids CBD, CBG, and CBN. Have been opioid free for 6 years and pretty much pain free ever since. I’m sure it doesn’t work for everyone, but it has certainly worked for me. Good luck

REPLY

Hey there!
It can take up to 3 months before you see any benefit.
Talk to your doctor about
“ PrismRA” testing.
Humira is a TNF inhibitor. Best to have testing as 60% of RA patients do not respond well to TNF inhibitors.
“PrismRA employs a predictive model that combines clinical factors, blood tests, and 19 gene patterns to identify the roughly
60% of patients who are very unlikely to respond to a TNF inhibitor.”
All the best!

https://kffhealthnews.org/news/article/rheumatoid-arthritis-patients-humira-prismra-test-trial-error/
REPLY
@kensiejames

Hey there!
It can take up to 3 months before you see any benefit.
Talk to your doctor about
“ PrismRA” testing.
Humira is a TNF inhibitor. Best to have testing as 60% of RA patients do not respond well to TNF inhibitors.
“PrismRA employs a predictive model that combines clinical factors, blood tests, and 19 gene patterns to identify the roughly
60% of patients who are very unlikely to respond to a TNF inhibitor.”
All the best!

https://kffhealthnews.org/news/article/rheumatoid-arthritis-patients-humira-prismra-test-trial-error/

Jump to this post

Thank you. If I hit the 3 month make with no relief I will be sure to ask about that test. So far I haven’t found it helped. I have only had 3 shots. I had to skip one when I had Covid. Back on track now and hoping it works.

REPLY

I find that naproxen works better for my RA so you might try it and see how it compares to the ibuprofen for you. Rx strength naproxen is double the OTC dose and is twice a day, with food. Tylenol has no anti inflammatory effect but I find it helps with the dull achy pain rather than the joint pain.
Since everyone responds differently to the RA meds, it can take awhile to find the right one for you. I hope that happens quickly!

REPLY
@slkanowitz

I find that naproxen works better for my RA so you might try it and see how it compares to the ibuprofen for you. Rx strength naproxen is double the OTC dose and is twice a day, with food. Tylenol has no anti inflammatory effect but I find it helps with the dull achy pain rather than the joint pain.
Since everyone responds differently to the RA meds, it can take awhile to find the right one for you. I hope that happens quickly!

Jump to this post

I will definitely try naproxen. At this point i would try anything, Mornings are torture! It has been since early December I have had such a challenging time. I attributed the issues to having got covid. I have been over covid for 3 weeks but no let up in the pain category. Thank you for the suggestion. I have never tried the OTC s with naproxen but i will now!

REPLY
@kensiejames

Hey there!
It can take up to 3 months before you see any benefit.
Talk to your doctor about
“ PrismRA” testing.
Humira is a TNF inhibitor. Best to have testing as 60% of RA patients do not respond well to TNF inhibitors.
“PrismRA employs a predictive model that combines clinical factors, blood tests, and 19 gene patterns to identify the roughly
60% of patients who are very unlikely to respond to a TNF inhibitor.”
All the best!

https://kffhealthnews.org/news/article/rheumatoid-arthritis-patients-humira-prismra-test-trial-error/

Jump to this post

I would dispute that > 60% of patients fail to respond to an anti-TNF drug if it is indicated. There are certainly some and thank goodness there are other options, but I don’t think I’ve read anything to suggest >60% - it’s been a miracle drug for me.

REPLY

Hi there,
Sorry for your pain and RA is a disease there is no cure for. I have had RA for 15 years and pain is difficult for me and loss of strength , among other things. Pain always worse in morning . Besides my meds( i am on Gabepetin, ibuprofen and Tramadol. I also have infusions of remicaid but have been on most other bios at some point or another.
It is a struggle. For me I need to watch my diet and eat anti inflammatory , mostly plant based diet and limit sugar including alcohol or I pay. Additionally I try to workout doing something almost daily. I walk, do floor pilates, or stretch . I was using an elliptical but my knees are suffering.
Movement of some kind is imperative to be able to function and also meet w a physical therapist . Hope this is helpful. Good luck sending prayers.

REPLY

I get it about movement. I was a physical education teacher. I have also been a yoga teacher for 25 years. The pain in the morning makes it impossible to get out of bed. I have to carefully begin to move my legs, bend my knees, and work up to a full bend with the knees before I can swing my legs over the side of the bed. Then it’s quite a while before I can stand. More time before I can walk. It is awful to feel this incapacitated.
Once I get a pain killer in me it gets a bit better. I am not crazy about taking pills so frequently, but can’t not take them if I want to move around.
I stretch in bed, do yoga in a chair as tolerated when I can move without a lot of pain. One day I actually stood on my yoga mat and did a few poses. Bottom line for me is hoping to get to the point where I can more comfortably get out and about again.
Thank you.

REPLY
@glynnissorrentino9

Hi there,
Sorry for your pain and RA is a disease there is no cure for. I have had RA for 15 years and pain is difficult for me and loss of strength , among other things. Pain always worse in morning . Besides my meds( i am on Gabepetin, ibuprofen and Tramadol. I also have infusions of remicaid but have been on most other bios at some point or another.
It is a struggle. For me I need to watch my diet and eat anti inflammatory , mostly plant based diet and limit sugar including alcohol or I pay. Additionally I try to workout doing something almost daily. I walk, do floor pilates, or stretch . I was using an elliptical but my knees are suffering.
Movement of some kind is imperative to be able to function and also meet w a physical therapist . Hope this is helpful. Good luck sending prayers.

Jump to this post

We have very similar paths. I’ve had RA 12 years , have been on Humira, Enbrel, and now Remicade. A couple of months ago I felt so stable I actually asked my Rheumy if we should consider reducing dosage or frequency. He said let’s review after first of year. Ha! Now I’m in flare and can hardly stand from a chair. I don’t take narcotics and can’t take ibuprofen.. so not much left except heat, ice, and massage. And rarely prednisone, which is wonderful but has to be limited if I’m to preserve bone density.

REPLY

am new to comments. I have had Psoriatic Arthritis for many years. Treated with many drugs. Last few years on Embrel injections but began site reactions so just changed to Humaria last week. Will want and see if this continues to help. Pain is your concern. Not only do I have PA I have Multiple Myeloma Cancer. Extreme pain to lower back. (10). Tried opioids even. Not good. Put on 300 mg of Gabapentin 2xD and pain from 10 to almost 2 level. Also use Tramadol for pain with Tylenol. Can’t take Iberprophens due to heat issues. Hopefully you’ll find the right medication to help with your pain.

REPLY
Please sign in or register to post a reply.