I am really just popping in to say Hi! I haven't been on the boards in any regular fashion for quite some time and I miss reading all the great advice from Veej and goldenwings and everyone. I have been wondering how everyone is and patience50 too.
The last time I posted I ask questions about SCLE and thought sure my rash would show it's ugly side. Low and behold it did nothing, just slowly disappeared! My rhuemy started me on a drug called diclofenac to help with my joint pain and it worked really well for a while but like all drugs I take it is beginning to lose its effectiveness. It is an older drug, an NSAID hopefully I will be able to continue on it for a while.
Anyway just wanted to say Hi and I miss you all. My hubby is getting better, but there are always little things that keep popping up when you have had such a traumatic illness. I will check in again when I get the chance, but so far (crossed fingers) even in the sun I have done well this year.
Hi, Glojer. It's good to hear your news, especially the good news about your hubby. Excellent!
About your disappearing rash... Hmmmm... Have you been guarding against sun? I've often wondered what would have happened if I'd done ONLY that, meaning no Plaquenil. I suspect the rash was by & large mediated by sun exposure, so I'd have been rash-free or "rash-lite", but that the OTHER things would have continued their wicked ways (e.g., fatigue, joint pain, anemia, GI & urinary problems, etc.) Dunno for sure, obviously.
Have you been on ONLY the Diclofenac? Just curious.
So good to hear you news. With my best to hubby & you, Vee
No veej I am on prednisone as well only 3mgs a day now but sometimes I have to bump it up to 4 or 5mgs. Goldenwings gave me that great advice about bumping up when necessary to keep ahead of the pain. I also take a muscle relaxer Baclofen for my fibro. The one good thing that has happened lately is my thyroid meds. I have been adding cytomel (T3) to my synthroid and that has helped my fatigue. I still have some and sometimes I just have to give in to it and cry 'uncle' for the day but I am still trying to pace myself so I can keep going. The joint pain though is the worse ever, it just keeps increasing and then sometimes I have some good days. Of course the IBS is ever present and I can't seem to get it under control, but I'm not giving up.
Hi, again, Glojer. I was astounded that my IBS stopped cold when the Plaquenil kicked in. And I'd been on various IBS drugs, special diets, etc., for 20+ years. It really makes me wonder just how long lupus was present. But I'll never know, will I? (Another of life's great mysteries, huh?)
Veej I took plaquenil at first but had an eye problem and the eye doc thought is was from the plaquenil. He sent me to Wash U. to the eye clinic and turns out it was not the med but just my strange eyes. The rhuemy however will not put me back on the plaquenil. I like the fact it helped your IBS, that is good to know. Right now the gastro has me on Levbid (as needed) and so far I am managing with that. It is amazing that I had IBS for years but didn't see a doc for it and managed without meds.
Last edited by Glojer; 05-17-2007 at 11:18 AM.
Reason: left out a word
I have been absent for a while but feeling a bit more like posting now. I got some more bad news after my nerve conduction tets I had done recently so I feel more than ever I need my friends from cyberspace around me hee hee !
I am pleased that things are getting to be a bit better for you. Braveman is such a wonderful person and I am so happy that he is doing so well. (Miracleman too - yes I have read your other thread It thrilled me).
Compassionman has been on diclofenac for years. In between taking this, he takes something else to give him a break from it, but it sees to do the trick for him. No more crackiling, creaking knees going upstairs hee hee !!
I used to have IBS in a real big way, I was in agony. Funny thing though, it was always worse before my monthly time - ahem you know what I mean. (Don't want to embarrass any gents on here). Well, one time I had an implant put in my tummy to see if it would work in treatment for my osteoporosis. Apparently they shouldn't have used this on me, as I hadn't had a hysterectomy and they took it out. Lo and behold since that day I haven't had a symptom of IBS.
Don't know whether it was hormone type thingummy that caused my IBS to disappear or what, but no problems any longer.
Lovely to speak to you. Take care.
I am not a medical doctor, I only speak from my own experience of the illnesses I discuss here.