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 muscles... The symptoms that distinguish rheumatoid arthritis from other forms of arthritis are inflammation and soft-tissue swelling of many joints at the same time (polyarthritis). The joints are usually affected initially asymmetrically and then in a symmetrical fashion as the disease progresses. The pain generally improves with use of the affected joints, and there is...

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Nothing touches this pain!

I just don't know what to do. Absolutely nothing I have is helping my pain. My rheumy wanted to try tapering my pred and mtx., which has been a disaster! I also take Remicade, which we thought was working.

As soon as I started reducing my prednisone, my pain started increasing. When I reduced my mtx I could tell a big difference. Now the pain is unbearable. I can't even hold a fork or cup of coffee, or a book to read. Now I'm back in my wheelchair because of foot pain and awful fatigue.

Called my rheumy yesterday, but she's on vaca. I went ahead and put my meds back to old levels, but have no idea when I'll start feeling better.

Any ideas or suggestions?

Thanks

Anita

Replies

naturegirl65
naturegirl65

I am so sorry you are going through this. It makes me so sad.
All I can say is because you have taken it upon yourself and made the judgement call to put your meds back, that hopefully very soon you will feel their effect and get some relief. And when your doc comes back you can both come up with a new game plan.

I wish I could help. I have been there, I know how vicious the disease is. Only you know what feels good for you. It is so hard to offer suggestions, because I know that everything is so hard when you are incapacitated. Perhaps a bath may help, a few drops of lavender and epsom salts. I expect even that may be a tall order for you right now.
Only rest as much as you can is probably all you can do. I give you gentle hugs and hope you get relief soon.
deleted_user
deleted_user

Alide,

I feel your discomfort!! I am currently going through the same thing...though I do not have a wheel chair so in turn I just don't walk or I use my rollator walker...

I use Dr. Teal's lavendar/espom salt bath salts works wonders on relaxing and takes away some of the Fibro pain that is associated with the RA..

Unfortunetly I am so swollen including my face and entire body that they need to ween me off the PRedisone (40mg)... My Orencia isn't working and on the 13th the Rheumy and I will be discussing a different biological though I have to do my homework on which one since I am ammune to Enbrel now...

Doesn't your Rheumy have an associate that will help make the decision to increase your meds back until she returns... ??

Though I increased my own MTX this week since I know I can go up to .75cc if necessary; I would call back and ask for a pain med or some type of NSAID that has pain relief in it.. (NSAID = Celebrex, Advil those type of medications Non-Steroid Anti Inflammatory Drug). Sorry I didn't want to assume anyone knows the abbreviations...

I hope you are feeling better soon.. Also I take a warm shower to get the stiffness and pain to settle than turn it to cooler to get the swelling down and i do this a few times a day....(I can because I am not working currently)... If you need any other hints let us know... I just took a hyrdocodone about an hour ago so my memory right now isn't doing you any justice... will check back tomorrow...

Gentle Hugs!!
Tess
deleted_user
deleted_user

I'm a firm believer in addressing pain as a part of healing. Pain puts you under stress, which just continues the whole cycle. In your shoes, I would contact my primary care physician and ask for something to relieve the pain. Prednisone is a great temporary solution, but I personally think that pain meds are better options in the long run. My experience was to find a minimum level of prednisone, then supplement with pain meds. If your pain is under control, you can taper prednisone much more easily. If you have something working, take special note, and gradually reduce anything else you want to be rid of. Remember that Remicade is specifically designed and tested to be complimentary to MTX. Also, keep that in mind, and maybe think about reducing prednisone first. Prednisone does not treat the disease. It's very effective at reducing inflammation, but it deals with symptoms, and it carries a lot of baggage in side effectI'm not sure how "old levels" of medications fits into your overall picture, but get things worked out with your rheumatologist at first opportunity.

My personal experience was that my primary care doc took care of my pain meds, because my rheumatologist was WAY too conservative. When I finally had the right drug solution for RA, then it became a simple matter of reducing, then eliminating other drugs.

I wish you well. Pain sucks big time.

doug
deleted_user
deleted_user

I'm sorry for your pain.......Its tough when this disease decides it wants to hinder every part of your world.Even when your feeling like this, please try and remember that you WILL be feeling better soon and there is a light....sending comforting feelings and prayers your way
daizy8
daizy8

Just want to let you know that I saw your post and hope you will have relief and resolution very soon! Hang in there!
camba
camba

Sympathy and thoughts. Stay in bed in warmth? rest up, eat lightly? Over the counter pain killer? Has anything external brought this on on top of lowering med levels? eg stress, bad weather? Are you into diet analysis? I know certain foods increase my pain. Only time I was ever truly pain free - and that was after diagnosis and with meds - was on a raw food regime but too hard to keep up, especially in colder weather.
deleted_user
deleted_user

I am sorry you are having to be in such pain. Personally I began to refuse prednisone(other than an occassional medrol dose pack)when I chose to try biologics. MTX and minocycline worked well for me for many years, then stopped. What form of MTX do you take? I found that pills did nothing for me, but the injections work great. I agree about pain creating a cycle of tension which only aggravates the pain and inflammation. When I find the pain absolutely unbearable I grab my NORCO ( pain killers) to take the edge off. Often weaning off prednisone can be hard if you have been dependent on it for a long time. My rhuemie prescribes the narcotics with no problem. My internist prescribes anti depressants which also help to relieve the anxiety that the pain causes. I am currently on Orencia and it works to some degree but does not alliviate all the pain. Good luck. Is there someone on call for your rhuemie? Give someone a call so you can get some relief.
deleted_user
deleted_user

Thanks so much for everyone's kindness and input. I take MTX injections .8 once a week. I also take an antidepressant and oxycodone for pain. The pain I've been having in the last couple of weeks is like what I had before I was diagnosed and had any treatment. None of my treatments or meds seem to be working at all. Fortunately, my Rheumy will be back tomorrow, so I can call her then. Hopefully, she'll be able to point me in a new direction that will help.

Thanks again.

Anita
deleted_user
deleted_user

Anita, Most RA meds stop working eventually, so it may be time to tweak your treatments. I too take injectable MTX. I have varying doses to inject depending on the severity of pain I am experiencing.

When I am feeling pretty good I wean down to .08 and on a bad week go with 1cc the entire syringe. My normal dose has been .09 since I began flaring last year.

Glad your doc will back. I think a call is warranted. Hope you are feeling better soon.
Bistro
Bistro

What they said, and I'm really sorry to read this. I hate this damned disease. Although, it really is a great teacher. I just wish it didn't have to be so strict.

Great advice here, by the way.
thinksRAstinks
thinksRAstinks

Yikes! Maybe you should go to the ER. They may be able to prescribe something that will give you relief quicker. Best of luck to you!
deleted_user
deleted_user

Anita,
I'm so sorry you are in pain. When in pain, you can't think about anything else, including getting better.

I agree wholeheartedly with Doug. My Rhuematologist is an expert in trying to address the disease and they sometimes help with pain medications, too, but that is not their specialty.

In my case, my husband found a pain clinic and I went to see a wonderful doctor (an anesetheologist) who is working with me to just address the pain. It is the best thing I've done. I'm in so much less pain now that I can focus on the healing.

My rhuematologist was thrilled that I saw this doctor. She told me that there is a limit to what she can and will prescribe to a patient.

So I wish you well. There is lots of good advice here, but I do suggest that you not be afraid to seek out help for just the pain and consider it a second issue.

Take care- Caroline