Not Lupus! Now what??? - Lupus Message Board

mindy1974 · 02-27-2009, 06:27 AM

Wow its so good to be back on these boards. Life got a bit messy for the last year but things are getting back on track. Loooong story short, my last Doc looked over all my blood work for the last 7 years (that’s when I was told I had lupus) and said that I never had the markers for lupus, he says I have had UCTD this whole time. Another doc agreed with him. I was so happy to hear that and everything I have read on UCTD is just what I have been dealing with. I have tried every med out there and had horrible reactions, only making my physical pain worse, and my moods insane. So I guess I just want to hear if anyone has had that happen, or how they live med free with daily pain. I have the classic, fevers, weakness, pain in feet and hands, muscle and joint pain, nausea, confusion, depression, low white cells, all those goodies. Thanks for taking the time to respond!

Derlinda

VeeJ · 02-27-2009, 05:45 PM

Derlinda, hi. You said you've been on many meds over time. Were any of them ones typically used in milder connective tissue diseases (meaning no major organ involvement)? Like an anti-malarial? OTC NSIAD's?

If you've taken any of these, did they actually help?

From what I understand about UCTD, it's a "real" Dx; and that the label matters less than the recognition that it's a real form of connective tissue disease; and that it should be treated as such. So that's why I was asking what treatments your dr. has tried.

I hope you post more when you can. Hang in there! Best wishes to you, Vee

mindy1974 · 02-27-2009, 07:32 PM

Thanks Vee,
Yes I have tried all those and felt no relief, but lots of side effects. Some gave tempory relief but my body’s reaction made me feel worse. By last year I was on 11 different meds. All for everything rangeing from pain, depression, and crazy random stuff. I gentle came off all med and was doing really better then I had in 3 years. But the last month I have been in a flare and its so frustrating. I know so many people make the best out of it and I deeply want to be one of those people but the loneness and isolation that chronic illness brings can be engulfing. You know? I just wish I could be more positive!
Thank you for taking the time to reply!
derlinda

VeeJ · 03-01-2009, 06:50 AM

Derlinda, is your doctor a rheumatologist? If he is, is he the ONLY rheumie you've ever seen? Obviously, you've tried meds (lots!) but haven't gotten relief from them, which is why I was wondering if you'd tried other doctors.

You should have seen my first rheumie: bizarre, to put it mildly. My second (and current) rheumie was a blast of fresh air.

I found several lupus authors helpful: one is Dr. Daniel Wallace, and another is Dr. Robert Lahita; and both are available in most libraries & bookstores. (Obviously books can't replace real doctors. But reading made me wonder what my local doctors really KNEW about lupus & close cousins, because they didn't "talk the talk", and they hadn't run some of the tests described in these books. So what reading did for me was to propel me to more sophisticated doctors.)

Are you off ALL meds? Is there any chance in your mind that any of your previous meds were worsening your pre-existing problems? For example, I know two people who were taking cholesterol-lowering meds who both ended up on steroids for pain. Their rheumies eventually concluded that drug-induced lupus (DILE) was the #1 suspect. It then took some months after discontinuing the cholesterol drug for both to feel better.

I'm sorry you're in limbo & hope that you can think of something else to try, to break the logjam. I hope you post more when you can. Bye for now, with my best wishes, Vee

goldenwings · 03-14-2009, 08:32 AM

Well hello my friend derlinda,

Sorry not to have been on before, but as you know what is going on with me I know you will be ok with that.

Well, I am surprised to read that your diagnosis of lupus was in fact something else. As Vee says though look at things from the beginning and think of what meds you were on, and if you felt better when you came off them.

The reason for this is because some forms of lupus can be brought on and made worse because of certain meds. When the actual pills are stopped, then the symptoms disappear and you begin to feel much better.

As I have said before, do you have fibro at all ? This can cause a lot of pain too. You have said before that you have tingling - this might be a form of neuropathy and needs to be discussed again with your doctor/rheumatologist.

You have been through so much in one way and another and I am so proud of you for getting where you are today. You must come back and ask and ask about anything you are unsure of. Also use this same system with your doctors - don't accept what is said if you don't understand, ask and make sure you know what is going on.

I feel able to be here a bit more at the moment, so hopefully I can be of some help to you also. You have had good advice from Vee as I said and in time hopefully you will gain more and more knowledge from others here. So carry on coming back.

Take care my friend,
goldenwings