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...
Hi Guys,
I don't write much here and even less with this new format but I am so depressed right now I could cry. I was doing so well with my RA. My pain was at an alll time low and my morning stiffness went from bad to virtually non-existant. I still had work to do such as get to a lower dose of prednisone and hopefully off it completely but I was doing great on the Humira, the low dose prednisone, my natural supplements and daily physical activity (gardening).
To make a long story short I went away for a week. It was not my idea and I preferred to wait but the family wanted to take a cruise to the Bahamas from NYC and I kind of had to try and go. There was no flying involved and the waters were smooth but by the 3rd day I began flaring and by day five I was barely walking and I'm now home and I'm doing very poorly with widespread joint pain, muscle pain and even bone pain. I don't recall ever having this much trouble getting around and I had to make myself a cane from an old golf club to use in the morning when my balance is at it's worse. I will admit that stress played a role in triggering this flare so I can't rule out future travel though I will never suggest travelling in the future and I will be more than content to never leave Connecticut again.
So for now I feel totally defeated. I was feeling hopeful with the improvements I had made these past ew month but now I have no idea if I can ever get them back. I had no choice but to bump my prednisone dose which I did not want to have to do but I'm fairly positive I'd be in a wheelchair 24/7 without the prednisone bump. I suppose I should call my rheumatologist and see if he wants me to come in to see him this week. He has mentioned using Arava in conjunction with the Humira so maybe now is a good time for that though we were gonna wait as I was steadily improving even though I was lowering the prednisone. MTX is out for me due to breathing issues.
If anyone has gone through something similar after travelling for a week I'd love your feedback. Actually I'd love anyone's feedback. The big question for me is 'Am I back to the drawing board and do I face another 2 years of battling this disease before I improve again?". Is there anything I can do to get back on track?
Thank you my friends. I am feeling so poorly, so out out of it and so depressed right now but I'm glad I remembered that you RA warriors were here to help.
How would I know unless you mentioned it in your original post? Because you may have worked with psychologists or psychiatrists, doesn't necessarily mean you have the training to employ the techniques.
I agree, there are some stressful life events that seem to defy coping mechanisms. But your post inferred, at least to me, that you acquiesced to the family's desire against your better judgment. Sometimes we have to be assertive and avoid these stressors.
I'm sorry you're feeling this way......but I have to agree with [was it Marlene?] that it could be the biologic starting to fail. Bumping the Pred won't help the RA if this is the case.
I had knee surgery last month, and that stress caused one of the worst flares that I've ever had. The joints in my feet were so bad, I couldn't walk.
Have you tried Voltaren Gel? My Rheumy wrote me a script, and the Voltaren brought the pain and swelling way down. It took about three days to start working.
I hope implementing the strategies that you've learned in CBT brings the stress and pain way down.
I haven't seen a CBT therapist in years. I have a feeling I best do some reading before I try to implement any strategies. I should indeed do that reading so I'm better prepared in the future. Stress is such a trigger for me as it is for many of us.
I use a low dose prednisone daily, 5 mg. Have used it for 3 years now and will probably have to use it the rest of my life. The steroid bursts help many people. By the time I get to the last dose of a steroid burst, I crash! I avoid the bursts if at all possible...causes me extreme fatigue.
I just so happen to have Epsom Salt here. I use it as a magnesium source for my lawn. I'll give the bath idea a try later.
My doctors pretty much agree that it is withdrawal from prednisone that causes me to have mental confusion. I know this to be the case because coming down from that stuff is brutal. I think I will try to get to the lowest dose possible for me in the coming months. I'll try the Arava as well and see if it potentiates the Humira some. Thanks!
This has been one tough road since RA hit 2 years ago. I had to give up a job I loved. My life has been turned upside down but I'm not ready to give up hope trying to improve the quality of my life.
Realizing we are all different I can say I'm 100% sure any major stress puts me at risk.
Add to that changes in routine, weather hey it's easy to see where it may indeed have rocked your world.
Now to each their own. I cannot risk such a flare so as much as I hate Prednisone I'll use it.
Took me a long time to get to 5mg & that was only from 10, 12.5, 15mg.
The use of a low dose for maintaince is between patient & Doctor, as we all have our own unique bodies.
After alleviating some stress I felt better but got hit with the weather & extremely stressful situation. So felt myself flaring. Upped lowest amount possible to maintain control.
Now my first dr had me try MTX, after 3 attempts I simply said no way. Never made an attempt to use another DMARD.
Second dr thought that was ridiculous to not try another.
I'm on Orencia with plaq.
I have been reading on controlling stress as sure can't always avoid it. It's a work in progress.
I know you love your gardening. So I truely hope you gain control of this wicked pain. Been there done that exactly as you've described.
Let us know how it goes.
Hugs
Sammy
Some people have suggested a hot tub but it would be useless for 5-6 months a year. They all say they go outside to get into theirs in the winter on the deck - no way I am doing that.
As far as stress I find that to be a huge thing with RA. I have always led a stress free life but keep that up even more now. I insist on a drama-free home which makes a huge difference.
I seem to be getting the pain to calm down. Obviously the prednisone is helping but I'm taking my pain med (tramadol) on schedule to stay on top of the pain. I have the luxury of having the NSAID Lodine for sciatica even though my rheumy doesn't like me to take both at the same time. We discussed it many times and he has agreed to prescribe me the lowest Lodine dose (300 mg) to take with food and prevacid. I take it at dinner and it controls my sciatica. It does help with other areas of inflammation so I'm using that 3 times daily short term along with the topical NSAID. I even used Robaxin the past 2 nights for the muscular cramps in my legs this flare has caused. That helped to. I also am making sure to faithfully take the 2 supplements I think helped me a lot (Meriva 500 and highly concentrated fish oil).
The first area to improve is usually my upper extremities. They are doing much, much better. The last areas to improve on my or my feet, knees and ankles. They aren't all the way feeling better but I'm glad that the worst pain is in hiding at the moment.
I curious what happens next. I go from 30 mg prednisone today and drop to 20 mg tomorrow for the next 5 days. Seeing that there is some control now is it expected that the 20 mg will be enough? Is that how it is supposed to work?
Thank you everyone for your support. It means a lot to me!