I’m sorry it’s been more than a month since I wrote. It’s been a tough time and I’ve been very sad.
For those of you who were left hanging by my last post, the doctor declared it not remission, but a “near-remission experience.” My bloodwork did look great, and my symptoms were on the whole SO much better, but joint examination showed that there were still just a few joints that were in a state of active inflammation. That’s still great, amazing progress for me, and we were both in a very hopeful place.
Then the flare hit. It began with an IC (interstitial cystitis) flare that wouldn’t get under control and soon triggered a full-on RA flare. Fevers every afternoon, swollen fingers and knees, brain fog, exhaustion, the whole nine yards. It’s far from being the worst flare I’ve ever had – the IC was actually much more difficult and painful to deal with this time around than the RA – but it’s not a good development. Whether I got rundown from the IC or from stress (there’s been a lot of it lately, which I won’t go into) isn’t clear, and maybe isn’t even important. The point is that I’m back in a bad place now. I’m also back on prednisone, which I worked so hard to eliminate. This really broke my heart, especially since it’s not a good step in the battle against adrenal insufficiency, which I was winning beautifully. On the bright side, the adrenal problem was really caused by long-term daily pred usage. Since this is intended to be a short-term pred taper, and since my adrenals have recovered almost completely, it’s not likely that it will trigger the same problem again so quickly.
My Remicade infusion is on Thursday, and I hope it will quiet this down. I also had labwork done on Friday, so we’ll see if it shows anything new, and talk about medication changes if it does. In the meantime, I guess all I can really do is hang on. I’ve been here before, and I can do it. I’m just disappointed.
Tags: Adrenal Insufficiency, Flaring, Grief, Interstitial Cystitis, Medications, Prednisone, Remicade
Oh sweetie, this breaks my heart. Please know that you are in my thoughts and prayers. Thank you for letting us know how you are doing. It’s so hard to post when things are awful. Praying for relief soon.
Big hugs,
Kelli
🙁 I’m sorry to hear that. How very frustrating, when you’d been doing so well. It will be so nice when scientists finally figure out a cure for this disease. Hang in there until the infusion; I really really hope it works to knock you back to a state of near- (or complete) remission.
Whenever I don’t see posts from bloggers I enjoy reading, I hope that means they are out living their lives fairly pain free. So, I felt sad reading your post today and hearing that you are experiencing pain again. It is disappointing. I don’t think it matters how many times it happens or how much we mentally prepare for the next flare, it is always disappointing.
Do hang on. One lesson we have all learned from RA is that no matter how bad it gets, we can always make it through the hard times and that it always eventually brings some relief back to us.
I will be sending you extra healing thoughts. I hope you receive them soon as I know I will not be the only one.
All good thoughts and prayers are going out to you. I am so sorry to hear about the bad place you are in. I hope your new infusion will give you relief. RA is a very tough partner, but as expressed above, we all seem to get through somehow. Your site, and you of course are valuable, and I wish you the relief you deserve. Best, Greg
So sorry to hear you’re not well. I hope the infusion helps knock the RA on its butt, so to speak, and has you feeling much better soon! 🙂 L
I have a couple of awards for you at my blog. : )
I’m so sorry to hear you’re not in remission, and that you’re going through a rought time to boot. Physical pain can make everything seem so much bleaker, and I know the reverse is true, too. I’m thinking of you.
Do hang on or in there or in whatever hanging position works for you. Warm thoughts and hugs your way to hope that you’re on the way back “up.”
I would like to suggest you visit http://www.roadback.org and look into low dose, long term antibiotic therapy.
There is also a book you can read on the subject. “The New Arthritis Breakthrough, Including Dr. Brown’s classic, The Road Back by Henry Scammell”
I can’t offer much in the way of info, since I am new to it myself, but I sure wish someone would’ve told me about it years ago.
Take care,
Gina
Gina, this is something I’ve definitely considered – I know it’s worked really well for a lot of people. I am reluctant to try it, though, because I’m allergic to several families of antibiotics. (It’s been a real mess trying to get rid of infections!) I know a lot of people using AP are on Minocin; I don’t know if I’m allergic to that one, but I’ve had problems with others in the same family.
Anyway, thanks for putting the information in your comment – maybe someone else reading this will benefit from it!
this one is so heartbreaking and I’m so sorry you have to go through it. It’s this on-again, off-again relationship with RA that is so very hard on your emotional well-being. When you never know if it’s going to hit you tomorrow, how do you stay hopeful? I’m still trying to figure that one out.
I’m late in catching up with you now – I had to cut down on my blog reading in order to heal my shoulder and I feel horrible that I’m six weeks late to hear your news. You haven’t posted since this one and that worries me. I hope you’re okay.
I also have ra and interstitial cystitis it
Had been under control all of a sudden the
Ra is flaring and so is the ic I also take
Mtx which Is kiingt stomach and all the drugs
For the stomach a I’d stuff flare the ic
My dr wants me to switch from enbrel
To remicade but I see one if the side effects
Are sinus Nd bladder infections. Did the
Remicade flare your ic
Thanks
Becky
Becky, I don’t think the Remicade flared my IC, but I can’t say for sure. For me, there seems to be a connection between my RA flares and my IC flares – they often happen together. But I’ve never noticed a connection to the Remicade. I have had infections on Remicade, though – not bladder, but skin and other infections.