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.
Well, I'm down to 20 mg prednisone per day. I don't know for sure is this flare is active or masked by the meds. My rheumy has me take the prednisone between 3 and 4 am. He said waiting until 6 am is too late. I need him to clarify because I don't know why it matters though he claims by taking it super early there is less chance of getting insomnia. Either way I want to be at a low dose of prednisone by weeks end so I can start feeling mentally "normal" again.
I know I shouldn't complain because we are all afflicted with the same disease but these past 2 weeks were quite possibly the worst in my life. I don't care if I have to pass up seeing Rome, Paris, the Taj Majal, the Kremlin or anything else out there. Not one of those places is worth a darn if it brings on a flare.
On a more positive note my pain has improved. I woke up this morning with some shooting pain in my feet. Took a tramadol, slept a couple hours more and woke up without pain but foggy from the tramadol. I decided to rough it today on Tylenol and Etodolac (an NSAID). Turns out that's all I needed and the sharp, underlying pain I sensed below (and above) the surface for the past 2 weeks is gone. I took an injection of Humira on Saturday and I do recall that for me it is often Day 2 when I feel the drug working its best. I hope I'm not jinxing myself but maybe the flare has calmed down and calmed down enough for my meds to work. A week ago not even 60 mg of prednisone had me comfortable so I do think that this flare was strong enough to overpower even the strongest RA drugs. Time will tell. I'll post another update in a couple days.
One reason I keep taking 5 mg daily prednisone is brain fog. Without prednisone, I have no brain. Before meds, my brain fog was extreme...some days I felt like a babbling idiot...of course other people were telling some of the things I said because I didn't know I said them....couldn't find words, used wrong words - some were just totally off the wall...it was aweful! There were days I wondered if I had a brain tumor because the brain fog got so bad.
Also interesting anout your comment on Humira gryd. Next month will mark 4 years (I think.....) on Humira and also notice a trend. I take my shot on a Thrusday and can actually expect a little more energy the following Saturday through Tuesday or so. Then it is a slow downward turn back to "normal" by the end of the week. Then it is another 6-7 days before the next shot.
I actually plan around this now. If we want to take a road trip (day trip) somewhere I will plan it for that first week of Humira. But then I have to account for the Methotrexate I take on Fridays which puts me down for Saturday and Sunday.
Crazy stuff!