Too many DXs????? - Lupus Message Board

Ann S · 02-14-2001, 05:55 PM

Hi,

I've been newly dx with Raynauds, Rheumatoid Arthritis, and Lupus. (They're doing more blood tests too) I've also had IBS and carpal tunnel for about 30yrs. No, I'm not trying to win the hypochondriac award of the year! I'm so overwhelmed by all these new dxs, that I'm having trouble sorting out the symptoms, much less finding the energy to do all the research(plus an old slow computor) and handle all the new emotions involved in learning to deal with it. I'm also trying to keep my job. In the research I've done so far, I just find it so amazing how all these things are interconnected. I've learned alot about IBS, from research and health boards and never once heard of the connection to Lupus. (If anyone has any questions about the IBS, I might be able to help there.) Anyway, I plan on doing more research on all these new things I have, but for now, could someone give me advice on meds? I know everyone is different and reacts differently to stuff, but for those of you that are 'old timers' to the board, what's the gerneral concensus? Also, if I can handle the pain, I want to take as little as possible and only on an as needed basis, but I don't want to avoid meds that help slow the progression of the disease. Can anyone, who's having a good day, help me sort these out? Also, I've heard you guys on the board refer to the 'right treatment' and 'diet'. In your opinion, what are these? As you can see by the length of my post, this is one of my better days, hope yours is too! Thanks, Ann

[This message has been edited by Ann S (edited 02-15-2001).]

Jeri · 02-17-2001, 12:42 PM

Ann, I am doing everything backward. I ansered your subsequent posts before seeing your first.
OF COURSE you are overwhelmed. Actually, be very gentle with yourself, because the realization of the diseases will continue to increase and wash over you for a few mosre days. Then you'll settle in a bit. I am still real new to this, that's the only reason I feel any competence at all to respond to your plea for "advice."
I found no need for pain medication as in narcotics, etc.- although right before I was diagnosed I was in one AWFUL flare (as the flare-up in symptoms are called) and I used whatever narcotics we had to stop the chest pain. It didn't help anyway.
The antiinflammatories that you'll be prescribed as well as the other drugs will begin to control the symptoms as well as contnrol the advance of the diseases.
I was started on prednisone (that works almost immediately to reduce the inflammatory process) and plaquenil (an antimilarial that works great on lupus). the prednisone began to works almost immediately, the plaquenil worked withoin 3 wks and suddenly I was pain-free and mobile again. From August to dec we worked on getting the steroids (prednisone) down to 5mg/day from 20 -a safer level and succeeded until Dec- when I kept flaring. In Jan she added methotrexate 7.5mg/once a wk. I am doing fine on the methotrexate (it's very stong and takes 5wks-3mos to work). I am in my 4th wk and believe that I am regain some strength and mobility.
I continue to work, but this takes a bit of a toll on my brain. I am honest with my co-workers and the administration. I have the perfect job and for now don't have to worry about job security. That is truly a blessing. I found that I had to drop my pride and independence immediately when it came to family. they are very supportive, but needed to be included. They got pretty confrontational when I wanted to keep this all in. Not all families can handle this. My husband had a problem at first because he (like all sweet hubbies) wanted this to go away and for me to be well again. he's had some major hurdles to jump, but he's doing very well for a sweet 64 yr old. :-)
ask away, Ann, and know that we'll do ou best to support you.
Jeri

tina ballerina · 02-18-2001, 11:56 AM

hi anne, We all have the same emotions and fear of the unknown, I was the same. There are so many things which can be related to Lupus, I was dx almost 7 years ago with kidney, skin, thyroid, joint problems. To my horror in the past few months i have been told i now have liver involvment, the worst pain in the world and have just seen a Liver specialist who is running all sorts of tests.
The fear never goes away but you learn to deal with it and with support from family and friends ( and people like us) we can help
you with dx symtoms. Good luck

Ann S · 02-18-2001, 07:45 PM

Thanks to both of you for the responses. I went to a family wedding yesterday and some of the responses there were tough to deal with....well-meant ignorance of the diseases, with easy sure-fire cures!

Do any of you have mind blurps?.....like putting the milk in the pantry instead of the frig, opening the second garage door instead of closing the first one, (and not even realizing you did it) etc. Is this a symptom or just caused by the initial stress and emotions of getting hit with all these new diseases? Also, are the sores in my mouth (mine don't hurt) and on my face from the lupus? Do any of you get a burning type pain in your legs, mostly behind the knees and calves? Finally, what's the 'right diet' some of you referred to?

I've only started Vioxx this week & had to have ny husband pick me up from work cause I was light headed and tingly all over. Dr. said to cut the pill in half & haven't had anymore problems. I thought I would wait to talk to the Dr. before I started any more of the prescriptions (chicken, I guess). I've heard such horror stories about the prednesone! Have any of you tried Celebrex?

I kind of jump from feeling sorry for myself at one moment, to thinking I'm just imagining some of the symptoms. I guess I just haven't accepted it yet.

Thanks again for taking the time. Hope you all have a no-flare week. Ann

Jeri · 02-20-2001, 11:15 PM

Ann, we're in this together! I am pretty calm and accepting about this, but find that mu condition changes so constantly that I do lose focus sometimes. that's where my faith really sustains and center me.
The brain stuff is the most unsettling 'cause it could mean safety issues or could mean my job. I have a lot of scatterbrain stuff going on as you described. I also forget names- that's a real problems at work. I had a difficult encounter one day when I recognized 2 detectives who came in with a case. By the time I was ready to write their names down, I could only remember one's name. I finally had to ask the other's name and he started to really give me a hard time ribbing me 'cause he didn't believe that I didn't know his name. I finally had to swallow my pride, tell him that I had lupus and that memory loss , for me, was part of the disease. He was pretty embarassed, but got over it quickly and offered to pray for me.
I can honestly say that lupus is humbling me- I need it too. :-) (you can tell from my typos how my brain is working- not very well haha)
I've been on Celebrex for a couple of years. She just upped the dosage in Oct to two 200 mg/caps day. She gave me some vioxx samples to take if I wanted to change. I haven't tried them yet- don't know if I'll change after what you wnet thru. I don't have a clue if the celebrex works cause of all the other stuff that I am taking.
jeri