working with Rheumatoid Arthritis (long)

Editorial Team / Admin · Oct 1, 2005

First, I have to note that I am not sure I even have a question, but I do need to talk and maybe at least get "feedback" if there's any to be had.
A few months ago I developed joint pain and long story short was diagnosed with RA. At first my Rheumatologist (from here on in just called doc to save typing) prescribed Prednisone, in a 2 week taper, really to see how I did with it. Well, at all but the lowest dose (5mg daily) I did great. I had very little if any pain, and minimal stiffness which decreased as the day progressed. Well, clearly staying on the prednisone was not something I could do long term......it was a while between appointments, so I had finished the taper quite some time before my next one. The pain returned with a vengeange, I felt it impacted my functioning, called in sick to work a few times, and was in pain while at work, and quite miserable.
I am a nurse in a SICU. I have been there less than a year, and am new to critical care. I rotate day/night (which is very hard on me as I never quite get enough sleep and thus am very exhausted) and do 3 twelve hour shifts a week. Also of note, when I was hired I got a large sign on bonus with a 2 year service commitment. I did NOT have RA when I got this job last December....
OK.....I called my doc who put me back on prednisone alternating 10mg one day, 7.5mg the next. This worked wonderfully and I felt like I didn't have RA at all, and felt kind of silly, like it was all in my head. At my appoitment he talked about the need to get me off the prednisone, and we discussed other drug treatment options. He had given me information at our last appointment so I'd had plenty of time to look them up. We decided (for now) to try Methotrexate, and while waiting for that to kick in (up to 6 weeks) start tapering the prednisone and be off it within the month.
Well, it's almost been a month, and I got myself down to 5mg daily a couple days ago. I might as well be taking nothing, because it has virtually no effect....and the methotrexate hasn't started to work yet (I've only taken 3 weekly doses, the first 2 being lower doses to give my body time to adjust).
I am in so much pain now......most of my joints hurt....toes, ankles, knees, fingers, wrists, even elbows and shoulders. My hips hurt depending on the position I sit in or if I am on my feet a lot. I have been so miserable I am in tears. I didn't work today. I tried. I went so far as to go in, even, but felt so crappy, I asked if I could leave, so they sent me home.
I have some really awful shifts coming up...the end of October she has me on 3 night shifts in a row, one night off, and then 2 more night shifts, all these being 12 hour shifts. I have a hard enough time doing 3 twelve hour shifts in a row, let alone only having one day off, only to come back and do 2 (and frankly on nights, for me at least, I find only having one day off in between is useless, it's like no day off at all).
I am so frustrated. I am gonna call my doc Monday and see about raising my dose of prednisone again for a couple more weeks. I feel like a junkie for the stuff.
Anyway, I just needed to get this off my chest, I am sure I am not the only one out there dealing with this. I posted similarly in an RA community on LiveJournal and got some good advice, but honestly, I am thinking right now I need all the support I can get, and in this case, I need support from my peers.....
Thanks for listening.

Hello, sphinx,:Melody:

I really feel for you. I know you will continue seeing your Rheumatologist and that is vital. I hope that you get on a regimen that gives you relief. Working under these conditions is truly miserable.:icon_hug:

**RosesrReder, BSN, MSN, RN** · Oct 1, 2005

I can only imagine. Healing thoughts to you.

Nesher, BSN, RN · Oct 2, 2005

My friend has RA and she has been through the ringer - but the thing that provides the most long term relief is Chinese medicine. She uses an acupuncturist and an herbalist (chinese kind - she brews up a tea daily that she drinks). She was so impressed, having done all the other things, that she went to school to become a doc of Chinese medicine. Currently she is on MTX and enbrel as well. Try it...it might make a difference for you as well. By the way can you cut back on your work % until things get under control?

sphinx, BSN, RN · Oct 3, 2005

Everybody at work seems to know I've been feeling poorly, but I am afraid to say why. Like yesterday I worked, and everyone kept asking if I was ok. I was feeling nauseated as well, and trying to just give vague answers. I feel so silly.

I've considered cutting back my hours, but am not sure how it will affect the service commitment and the sign on bonus I got......if I'd have to repay any of it? My husband says don't worry about the money, but I do worry, can't help it! Esp if I worked less hours, making less money.....stupid, I know. I am wondering if getting off day/night rotation to day/evening rotation might help with the exhaustion. Stress and not enough sleep tend to make the symptoms worse.....

imenid37 · Oct 3, 2005

My daughter is in remission from systemic JRA. She took predinisone for 2.5 years straight before she could be weaned off. She took po gold, many anti-inflammatories, po MTX, and finally sq MTX. The sub-q MTX really did it for her. Her rheumatologist is terrrific. Her is certified as both a peds and adult rheum. (also in peds and internal med). I'd say that having a doc you trust is really important. I hope you feel better soon. I know my daughter really had to stick w/ the predinisone for a while or face losing joint function. It was a real dilemma because of her being a child (she was constantly on predinisone from abt. age 9 to almost 12). She has gone to a camp for kids sponsored by the arthritis foundation which was great for her. For adults, they have a lot of exercise programs, esp. aquatic programs. Some people do well w/ stretching/relaxation programs. I think staying active was good for my daughter and for adults I've met w/ RA. She went to a medical fitness program at our local hospital to help maintain flexibility and manage her weight. I think maybe you should talk to your doc abt. having your work schedule modified for medical reasons. Working all of those nights and the fatigue it may bring won't be good for your RA. You need to take care of you. I really wish you all of the best and I hope you find a med combo that has you feeling better soon.

P_RN, ADN, RN · Oct 3, 2005

Be very careful about Chinese herbal medicine. A friend had it imported through Japan (I think) anyway it turned out to have a LOT of unacknowledged ingredients including lead and butazolidine. Some caps had nothing but plain green tea. Then he developed severe gastric problems. Stay with your Rheum. and his/her recommendations.

Dalzac, LPN, LVN, RN · Oct 3, 2005

I developed RA about 7 yrs ago. I was on MTX for about 3 yrs I hated the stuff. It made me sicker than a dog I took it once a week and always felt like I had the flu the next day. I am now on Enbrel, Azulfidine, Clinoril, and another drug I can't even spell. I stil have agonizing pain in my feet and hips, and hands. I thought I was going to have to quit working but my doc put me on oxycontin 20 mg twice a day. I don't feel impaired or euphoric. And I can walk without pain. I had to change my job though, I did work in ICU/CCU. I found another job within the same hospital that is much better for me. It was on a low-risk cardiac observation unit with only six beds.

I have to say although I do miss my critical care patients This job is so much better for my health. Do every thing your Rheumatoligist suggests and just keep going. That is what I have done.