Rheumatoid Arthritis Support Group

Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...

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Need opinion please!

TWGarrett
TWGarrett
Hi, its been a long time since I've been on. I have a new Rheumatologist that I really like and trust. He has me on the highest dose of methotrexate by injection and Humira. He chose meds that would treat RA or PsA. He is unsure as to which I have but feels like its more aps to be Psoriatic. My question is, I have an appointment 3/14, I have a knot that came up at the base of my right thumb. I've had major pains in fingers,toes,wrist and ankles. When standing still my left knee feels like it's going to pop backwards, if that makes sense. My hips are in worse pain and I feel like its all I can do energy wise to stay in a standing position. On the pad of my left foot at base of big toe it feels bigger than on my right foot and hard as a rock and both feet are very tender across base of toes on pads. Through all this my tongue and now lip has extremely painful bumps on them. I don't know what to expect if deforming begins to take place. My question is, should I try to move up my appointment or just wait its right at a month away? Thank you in advance for any advice !
altoclef
altoclef
It wouldn't hurt to call and at least run all this past someone.

How long have you been on these drugs? They can take awhile to work.

The mouth sores could be from too little folic acid. If you are on methotrexate, especially at the maximum dose, may we assume you are taking a prescription folic acid supplement? It may need to be raised. I had to up mine a few months ago, after years at the same dose, because of persistent mouth sores. Man alive are they painful!
TWGarrett
TWGarrett
Thank you so much altocief for your feedback. I have been on methotrexate for several years but not on the full doise nor injections but for maybe a year. I've been on Humira for alittle over a year. My mouth sores come and go but for some reason they have come and stayed for a while this time and the worst its ever been. I am on 1 mg of folic acid which has never been increased.
I'm sure having fibromyalgea and being on meds for it doesn't help.
altoclef
altoclef
I had to go from 1 mg to 2 mg of folic acid, after 4(?) years of mtx. It has put a stop to the mouth sore problem.

Did you get good relief from Humira? I'm wondering if it has lost its effectiveness or if it wasn't the right drug for you to start with.

I don't know if you have seen any of the discussions here about fibromyalgia diagnoses. Here is one recent one: http://www.dailystrength.org/c/Rheumatoid_Arthritis/forum/21302891-new-diagnosis I don't know if your fibro diagnosis make sense to you, and if the treatment they have you on for it is helping. If those are "yeses", great. If "no" or 'not entirely" it could be time to review your whole situation- diagnoses and treatment.

Could your rheumy even get you in early? So many of them are too busy.
TWGarrett
TWGarrett
I will definitely try increasing my folic acid. I truly need some relief. I actually was diagnosed with the fibro first and have bee n by 4 different drs. It took a while but was finally put on cymbalta and gabepentin and hydroco. This cocktail has worked foralmost 10 ,( goodness didn't realize how long it has been ) until the past couple of months. My Rhumy doesn't believe in meds for fibro, says he's had no satisfaction, so my family Dr treats it and the pain meds. I seen him last month an he increase all my meds. My feet don't stay still and increases my problems with my ankles. I read your discussion on fibro, thank you,. I will be following up on the fibro and medicine increase in April. As for Humira, I thought it was helping but I'm not sure anymore with the problems I'm having. My rhumy ofc closes early on Fridays, will call Monday morning. Thank you again .
TWGarrett
TWGarrett
Should say 10 years on how long I've been on fibro meds.
2leftfeet
2leftfeet
I agree with the idea of calling or emailing the Dr, let him know what is going on. I take 2 mg of folic acid every day. Are you taking a prescription folic acid?
TWGarrett
TWGarrett
Hi 2leftfeet, yes I'm taking a prescription of 1mg a day. Tonight I bought over the counter folic acid and taking one along with the prescription until I see Dr again. It has been years since I've needed the electric wheelchairs when shopping but I considered it tonight and really wish I had. I plan on calling my Rheumatologists nurse Monday. Thank you very much for your reply!
vegsto
vegsto
Something you may consider is asking that you appt. get moved up. If not maybe see if you they can slot you into a cancellation. I also have those bumps, a couple the size of "shooter" marbles and a few pea sized and smaller. When I started on higher doses of meds I also noticed more than I though I had to begin with. Mostly due to the lack of daily swelling I had before the upped dosage. I tend to also notice that my other joints are flippy floppy, my guess as to why is that the meds have the same effect on all of your joints and are not just site specific. Its crazy how your body adjusts to your conditions. I know motivation can be an issue, but i will say try a bit of either yoga and/or tai chi. It will help with keeping you limber as well as a bit of added joint and muscle strength. Also Folic Acid will help with the sores. My rheumy said that she will always prescribe with methotrexate.
TWGarrett
TWGarrett
Thank you very much Vegsto!
depotblue
depotblue
you mean mouth sores of some type?

methotrexate causes that on methotrexate, it is common for me

the rheumie calls in some crap called "magic mouthwash" (yeah it's really called that on the prescription label - the pharmacist has to you know like magically mix it...it works) plus the rheumie has me take leucovorin 12 hours after I inject the mtx. call in your mouth sores stuff today on the nurses line and see if they can call something in while you are waiting for a cancellation to go over your entire status.

depot
TWGarrett
TWGarrett
Thank you depot! I called today and nothing available before my appointment but I had decided tonight to call my nurse tomorrow. My joints are hurting so bad and I have several nots across the ball of my feet and they are so painful and hard. I will see then if the will prescribe something for my mouth sores. The extra folic acid has helped a small amount but not enough.
Thank you again for your suggestions!!!
twgarrett