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...

2,179 Members
16,355 Posts
0 Online
Muscles & Bones
/ Rheumatoid Arthritis Support Group

Seeing Rheumy on Mon., any suggestions?

Rosemo
Rosemo
My symptoms started in Feb. 09 with flare in right hand. It has never subsided. I have been on MTX 15 mg since May 11. Added Enbrel 50 mg on June 16. Have been using 6 to 8 tramadol a day for pain, vicodan every pm to fall asleep. Dr. said last time I saw her it is aggressive. I've felt no relief, in fact ever since it started, it just seems to get worse each week. spread to my wrist, elbow shoulder, tinlging in ankle, cramping in the calf. Now left hand is starting. Severe pain in hips all through the night. Awake every few hours. Fatigue and stiffness and is so bad in am's I can't get to work until 11:00 am. Of course by now those around me are wondering why I'm no better yet. As I try to prepare some questions to take to my appointment, I'm coming up blank. She told me the last time she's taking an aggressive approach with these meds. So I've been expecting some results by now. I'm preparing myself to probably hear from her that we have to give the meds more time to work I think the meds say 3 to 6 months. I know some of you have indicated the same. I decided to try to cut the pain meds out to see what the pain level is like without them, but I broke down and couldn't even go a full day without them. It doesn't remove the pain as you all know, just takes the edge off. What do you all think? Will I have to hang on like this for several more months before I get some relief. ANY advice is welcome.
JillyT
JillyT
You know everyone is different, some get relief fairly quickly and others take the full "loading" time. So hang in there and don't skimp on the pain meds if your hurting.

Let your rheumy know all the problems your having and the pain so she will know what to do to help you out. I took the full amount of time to load all the meds I am on for RA.

I hope you get some relief soon, hugs jilly
Christine26
Christine26
Hi Rosemo and I am sorry that you are in so much pain. You should not have to be in that much pain for so long. I hope the right combo is found.Some questions you could ask your doctor are how readily availble is she in that if you call the office how soon should you expect a call back(approx), should you be trying different DMards.. Arava, and Plaquenil work nicely for some. How about arthrotec being added and changing the pain meds? Would she want to increase the MTX and go to injections? How often does she tend to do blood work? Would Lyrica and Amytriptilline be a possibility for you?(They help with pain at the nerve endings and it also helps you to sleep). How often would she be seeing you for a visit?Good luck with the visit and hope you are feeling better soon.
deleted_user
deleted_user
One question I ask is "what results can I really expect?" This way you'll know what the goal is regarding your treatment. Obviously we can't undo damage already done, but knowing what your Dr. expects in your specific case is important.
deleted_user
deleted_user
My best suggestion is a pain relieving gel called Voltaren. You rub it exactly where you hurt and it lasts 6 hours. I use it on my spine and it has totally changed things for me. I don't support the use of narcotics because you can become toxic like I did and have a heart attack. They are just too dangerous, change your personality, and you get tolerant of them.

I wish you well and hope this has helped.

Melanye :)
thinksRAstinks
thinksRAstinks
Sorry you have not found relief. The advice I would have given has already been said so all I can say is all the best to you in finding your cocktail that works!
lycesq
lycesq
Rose - I'm sorry you are having such problems I agree with Jilly - let your rheumy know. There are tons of meds out there that can help you.

Lynne
deleted_user
deleted_user
As everyone has said, each case is different. Prednisone is great antiimflamatory so is also a good pain reliever. It has many side effects, however is dose related. I think short term it is a great med. I have had RA for 20+years and have had lots of treatments.Remicade was a lifesaver for over 7 years. I actually had many days that I took no pain meds. Occasionally i awoke with no pain. One day it just stopped working, but the 7 years it did work was wonderful. Currently I am on a new research med, not doing well at all. Good luck, my prayers are with you. DEB
deleted_user
deleted_user
I am sorry you are in such pain, many or most of us have been in your shoes. Talk to your doctor about maybe switching meds. My rheumy switched me after 12 weeks on humira and 10 weeks on enbrel because4 I was getting worse not better! I am now taking Orencia and the jury is out. I also take MTX in the injectable form, may want to discuss those possibilities with your doctor? I hope you can find the magic cocktail that will give you some relief. In the meantime don't lose sight of those pain pills! hugs, marcia
deleted_user
deleted_user
A Iagree with Tort: make sure you get an idea of what to expect, both interms of the progression of your disease and the relief you can expect from meds.

I don't want to suggest meds or dosing, but *usually* docs go to a higher dose of MTX before starting a biologic, and while adding the additional drug can be considered aggressive, drug doses are important, as well. Ask about that.

Make sure you discuss treatment options, and plan a treatment course that addresses the possibility or need for change.

And, don't be afraid to ask for assistance from pain meds, especially while it's taking time for other meds to work. It's nearly impossible to heal and feel relief if you're edaling with the constant stress of pain.

Best wishes for your appointment.

bc
deleted_user
deleted_user
As a pharmacist and someone who is suffering from RA myself, I hope I can give you good suggestions to take to your Dr. It sounds like to me you will need a course of steroids (prednisone and the like) to get you through this time. That is, of course, if you do not have any contraindications (poorly controlled diabetes, infection, gastic ulcers, etc). The pain medications will "numb" the pain, but the true source is the inflammation (which steroids can help). This would only be a short course and should be tapered down slowly after your "maintenence" medications kick in. I would recommend increasing the MTX dose if you can tolerate it (20 mg) and give the Enbrel ~1-2 more weeks (takes 6-8 weeks to see ANY effect). If it does not work, switch to another biologic. Some folks just respond to certain biologics (no one can answer why, but it just happens). Hope this helps and let us know how you are doing.
deleted_user
deleted_user
I don't know if you can know what to expect until it actually happens. I've been on the cocktail of inhibitors as well and just started Remicade treatments today. My immune system stopped responding to Humira and other meds. It's been two almost three years for me and I'm still searching for the relief. In the beginning, Prednisone was the magic pill, then it no longer worked. It is trial and error and persistence with requiring your dr. to keep trying.