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.

crhp194 | @crhp194 | Apr 6, 2017
In reply to @kanaazpereira "Hello @gizmanbarb, Welcome to Connect; thank you so much for introducing yourself and joining the group...." + (show)
@kanaazpereira

Hello @gizmanbarb,

Welcome to Connect; thank you so much for introducing yourself and joining the group.

Although for different conditions, we have quite a few members who have used methotrexate; @jerseygirl926, @crhp194, @lisa_sj99, @lorrainechavez, @debcha, @sherw, @emmur16, @sallyann, @luladavis, @rosestea, @julied838, @mswanda, @djfd @amkaloha @taterjoy @lisabeans @zenk @jewel8888 @smgarner1 would you share your experience with this drug?

You may also wish to view these discussions, and tag members there for more insight:
I'm looking for information on Methotrexate for Autoimmune Diseases: http://mayocl.in/2h2kHZY
Is it possible to go off RA drugs by following a plant based diet: http://mayocl.in/2oJgPDN
Side affects from Anastrozole and MCTD leaves my body achey: http://mayocl.in/2p6loo8

@guzmanbarb, what side effects are you experiencing? Has your physician offered other medications to relieve the pain?

Jump to this post

So sorry you are having so much trouble with methroxate. I have been taking it for about 7 months. Side effects for me just ladtbon the day I take it. Mayo has me take 6 pills once a week. On the day I take it, I am very tired and somewhat nauseated. Usually, I take it easy that day and by the next day, I am fine. Perhaps you need a dosage adjustment or some other adjustment. I am no doctor and because I take the drug for a non-painful condition the only way I know it helps is from PET scans and/or CT scans. Good luck to you. Have a conversation with your doctor about your difficulties.

REPLY
kozlo52 | @kozlo52 | Apr 7, 2017

I was on methotrexate many years ago (28) and my liver enzymes went off scale. This is an old chemotherapy drug from the 1940's so make sure you all gt bloodwork on your liver enzymes. i was taken off it very quickly...kozlo52

REPLY
kozlo52 | @kozlo52 | Apr 7, 2017
In reply to @lisabeans "I gave not been diagnosed yet. I too had to stop methotrexate. I got sick from..." + (show)
@lisabeans

I gave not been diagnosed yet. I too had to stop methotrexate. I got sick from it. I am now taking arava. It is helps a bit but I still have painful days and am exhausted.

Jump to this post

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

REPLY
2 replies
dinym | @dinym | Apr 8, 2017

I have been diagnosed with RA in the last fortnight after thinking I had PMR over the last 16 months. Couldn't get the prednisolone meds down below 7.5 mg and wasn't holding the pain. Then 8 weeks ago after my index finger was swollen, suddenly had extreme pain in both hands and wrists. Couldn't drive, which is rather essential where I live. Now being weaned of Prednisolone and taking 10 mg once a week of methotrexate with a folic acid tablet each day after the Methotrexate for 2 days to counter any side effects. So far so good.
Have read a paper that says there is evidence RA is " likely caused by Proteus asymptomatic urinary tract infections". ( 2011 Rashid and Ebringer Autoimmunity in Rheumatic Diseases is induced by Microbial Infections via Crossreactivity or Molecular Mimicry) . Does anyone know more about this and if any treatments have been tried for this Microbe? I will bring this up with my rheumatologist at my next visit in June. Also can RA go into remission or is there always pain somewhere? Thanks for this Forum! Got a lot of learning about RA to do.

REPLY
4 replies
guzmanbarb | @guzmanbarb | Apr 8, 2017
In reply to @dinym "I have been diagnosed with RA in the last fortnight after thinking I had PMR over..." + (show)
@dinym

I have been diagnosed with RA in the last fortnight after thinking I had PMR over the last 16 months. Couldn't get the prednisolone meds down below 7.5 mg and wasn't holding the pain. Then 8 weeks ago after my index finger was swollen, suddenly had extreme pain in both hands and wrists. Couldn't drive, which is rather essential where I live. Now being weaned of Prednisolone and taking 10 mg once a week of methotrexate with a folic acid tablet each day after the Methotrexate for 2 days to counter any side effects. So far so good.
Have read a paper that says there is evidence RA is " likely caused by Proteus asymptomatic urinary tract infections". ( 2011 Rashid and Ebringer Autoimmunity in Rheumatic Diseases is induced by Microbial Infections via Crossreactivity or Molecular Mimicry) . Does anyone know more about this and if any treatments have been tried for this Microbe? I will bring this up with my rheumatologist at my next visit in June. Also can RA go into remission or is there always pain somewhere? Thanks for this Forum! Got a lot of learning about RA to do.

Jump to this post

So glad you're not having side effects I was on methotrexate for a month along with rayon and I was so tired I couldn't function I took myself off of everything except plaquenil 1time a day and besides the morning headache thank god I feel better than I have in weeks

REPLY
kozlo52 | @kozlo52 | Apr 9, 2017
In reply to @dinym "I have been diagnosed with RA in the last fortnight after thinking I had PMR over..." + (show)
@dinym

I have been diagnosed with RA in the last fortnight after thinking I had PMR over the last 16 months. Couldn't get the prednisolone meds down below 7.5 mg and wasn't holding the pain. Then 8 weeks ago after my index finger was swollen, suddenly had extreme pain in both hands and wrists. Couldn't drive, which is rather essential where I live. Now being weaned of Prednisolone and taking 10 mg once a week of methotrexate with a folic acid tablet each day after the Methotrexate for 2 days to counter any side effects. So far so good.
Have read a paper that says there is evidence RA is " likely caused by Proteus asymptomatic urinary tract infections". ( 2011 Rashid and Ebringer Autoimmunity in Rheumatic Diseases is induced by Microbial Infections via Crossreactivity or Molecular Mimicry) . Does anyone know more about this and if any treatments have been tried for this Microbe? I will bring this up with my rheumatologist at my next visit in June. Also can RA go into remission or is there always pain somewhere? Thanks for this Forum! Got a lot of learning about RA to do.

Jump to this post

If you are on plaquinil remember to have your eyes checked per the rheumatologist's recommendation. it can create eye problems....kozlo52

REPLY
1 reply
1825 | @1825 | Apr 9, 2017

I have my eyes tested annually as a result of a change in one eye my dosage of plaquinil was halved and has remained so.

REPLY
4 replies
guzmanbarb | @guzmanbarb | Apr 9, 2017
In reply to @1825 "I have my eyes tested annually as a result of a change in one eye my..." + (show)
@1825

I have my eyes tested annually as a result of a change in one eye my dosage of plaquinil was halved and has remained so.

Jump to this post

I go every six months how long have you been on it before you noticed a change in your eyes

REPLY
1825 | @1825 | Apr 9, 2017
In reply to @1825 "I have my eyes tested annually as a result of a change in one eye my..." + (show)
@1825

I have my eyes tested annually as a result of a change in one eye my dosage of plaquinil was halved and has remained so.

Jump to this post

Between two to three years. I was advised it can reverse if taken for a short period of time. Fortunately it did and I have remained on one tablet a day from two daily.

REPLY
guzmanbarb | @guzmanbarb | Apr 9, 2017

Ok thanks for letting me know I am currently taking 1 a day and based on what you told me I will keep doing that

REPLY
View MoreView Less
Please sign in or register to post a reply.