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LadyBrannon

Active User, Really EHEALTHy

Joined: 17 Jul 2003
Posts: 506
Location: TX

Is there anyone else using this to control their Lupus? Posted: 07-17-03 17:39pm


Hello All! I am a 29 year old who has been diagnosed with Lupus for 3 years and sick for a lot longer. I have had severe bouts with my Lupus and been in and out of the hospital...with my longest stay being 2 LONG weeks! Anyhoo, this past fall/winter my original Rheumy sent me to a specialist at UNC Hospitals in NC. The specialist has helped me a lot. I mean a lot. However, this past visit (this afternoon, in fact); she put me on a third Lupus medicine. I am now taking each day 40 mg of Prednisone, 3 grams of Cellcept and Plaquenil (the new addition). Has anyone out there taken this combination? If so, what are some possible side effects? I have taken Plaquenil before...just not with the Cellcept. Thanks in advance, LadyBrannon

sharon

Experienced User , Rather EHEALTHy

Joined: 17 Jul 2003
Posts: 191

prednisone Posted: 07-18-03 11:29am


HI , This is a reply about taking prednisone for lupus. I've been on it twice since '97. I went from a size 6 to a size 16. It blew me up like a balloon! Both times was after a bad bout in the hospital. I swore I would never take it again! I'm having alot of back and hip pain, and my doctor told me yesterday I needed to be put back on it. I was also told that I would need to take it the rest of my life! Not if I have any say so! I am 5ft. 2in. and weigh 177lbs. My weight has brought other problems along. High blood pressure for one, depression also. I've taken mussel relaxers that has made me so.....druggy I could not function. I can't live like that! I don't claim to know all the answers, but there has been only one thing that has helped me. Herbalife. I'm not trying to sell it, I'm not a dealer. It is very costly. But, I'm telling you it worked for me. I'm not taking it at pesent because of my finances. But if I could afford it I would be. I will never give in to my luous. I like being active. I like to Quilt and do crafts. I love to work in my yard, but had to give it up because of the sun. Sorry this is so long, but I had to vent! If there is anyone who would like to e-mail me,Please do. Thanks! Sharon

LadyBrannon

Active User, Really EHEALTHy

Joined: 17 Jul 2003
Posts: 506
Location: TX

Posted: 07-18-03 11:59am


Hi Sharon! Unfortunately, I know all too well about the Prednisone. I have been on it non-stop with high doses (some as high as 150mg and none below 20mg) for going on 2 years. This past month, I was increased back to 60 mg with a 500mg IV infusion! As for my body, I have gained around 70 pounds. I like to joke that I am carrying a fifth grader! I have heard of Herbalife; I even asked for it. However, my doctors absolutely forbid it. Period. What did your doctor say? Thanks! LadyBrannon

Willa

New User, Becoming EHEALTHy

Joined: 22 Jul 2003
Posts: 1
Location: Poplar, MT

Lupus Posted: 07-22-03 12:39pm


Hi, my mother has recently been diagnosed with lupus. She has been sick a lot lately, this lupus has forced her to retire early. Lately she has been in and out of the hospital, she is in constant pain, and cannot get around like she used to. I need some answers on how do we cope with this? She does live by herself, and this last time the ambulance had to go and get her, they couldn't get in the house because she couldn't get up to answer the door! But this is so hard to deal with, we try and get her some help on either moving in with us, but she don't want to leave her house. She lives 80 miles from me, so it is hard to go and check on her everyday. The lupus is now in her back. It started in her legs, her arms, she has no strength. But we cannot seem to find any help. We have field nurses, but the one we have just seems to forget about checking on my mom. My moms blood pressure goes sky high, then it is normal, then it goes up. Does any one have any suggestions or places to go for help? We live in a remote part of Montana.

Teri

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Joined: 10 Jul 2003
Posts: 10
Location: New Jersey

Lupus Posted: 07-22-03 13:20pm


To LadyBrannon, What kind of Lupus have you been diagnosed with? Teri

LadyBrannon

Active User, Really EHEALTHy

Joined: 17 Jul 2003
Posts: 506
Location: TX

To Willa! Posted: 07-22-03 21:14pm


Hi Willa...please send my regards to your mother. This IS a very difficult disease to deal with and I empathize. As for the not being able to get around as well, there are a couple of things that have helped me along the way... 1) The NSAID (non-steroidal anti-inflammatory drug) called Voltaren. 2) Another NSAID that I found helped for a while was Mobic. I really liked this one. On another note, be very careful about giving her a drug called Celebrex. Many Lupus patients react poorly to drugs with Sulfa in them. This interaction (Sulfa and Lupus patient) may even cause flares! 3) Once I got worse, I used/use strong narcotics to control the pain now. 4) I also use hot tubs and warm baths! I get very adamant about my warm soaks the worse I get. And yes, I have been so bad that I was not able to walk for days and walked with a cane for months. I hope this helps! Lady Brannon

LadyBrannon

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Joined: 17 Jul 2003
Posts: 506
Location: TX

To Teri! Posted: 07-22-03 21:27pm


Hi Teri! I have Systemic Lupus with some organ involvement. My last 2 years have been the worse. In February of 2002, I had my husband take me to the hospital. I was in these for a very long week. They let me out on Saturday and on Sunday I relapsed. I relapsed on a freaking 100 mg of Prednisone! My doctor was appalled! I muddled through never really pulling out of the flare. She told me that she did not think she could help me anymore and sent me to UNC Hospital in Chapel Hill, NC. I am thankful, everyday, for her doing that. My new doctor had my kidneys in remission in about 2 months. Unfortunately, my skin and joints are not. About a month ago, I began rashing stupidly again. And when I say stupidly...I mean stupidly. I get these well-defined concentric circles that cover my entire body until I have no normal skin left. To head this off, I, under previous instructions from my doctor, took 60 mg of Prednisone to get myself under control and called her the next day. Four days later, I was still getting new rashes...So, she gave me a 500mg steroid infusion and kept me on the 60mg of Prednisone. I am still rashing, but she recently added the Plaquenil to get the pain and rashes under better control. I hope this is what you wanted to know, LadyBrannon

Teri

New User, Becoming EHEALTHy

Joined: 10 Jul 2003
Posts: 10
Location: New Jersey

Lupus Posted: 07-23-03 13:11pm


Hi LadyBrannon : I certainly understand what you are going through, just hang in there, I have friends who have this and unfortunately they do not like to go on line, one of my friends have been diagnosed with the same as you and is doing incredible. I would like to give you the name of the Doctor that is helping her. He is the top one in New York for treating Lupus. Maybe you can give him a call and talk to him about it because you live far away and it might be worth it for you just to give him a call. He is the #1 Rheumatologist in New York, his name is Dr. Spiera and his office is on Park Avenue. He had treated me for lyme disease a few years ago. Will you be interested for his number? Teri

LadyBrannon

Active User, Really EHEALTHy

Joined: 17 Jul 2003
Posts: 506
Location: TX

To Teri Posted: 07-25-03 12:09pm


Teri: That is so kind of you! I would greatly appreciate ANY information you can give. Also, since your friends do not like online, do they like private e-mail or phone calls? Talking to people who understand is so important! Please send my regards to your friends and THANK YOU! LadyBrannon

sharon

Experienced User , Rather EHEALTHy

Joined: 17 Jul 2003
Posts: 191

Herbalelife Posted: 08-01-03 22:19pm


Hi Lady Brannan, Sorry about the delay. Modem went out! My doctors in Texas were all for it! They couldn't believe how well my lupus responded. I've never felt better than when I was taking it. Even The Neurologist said it was helping with my Epilepsy. My husband has a very rare heart and lung disease that should have killed him by now, but when he was taking herbalelife he improved by leaps and bounds! He was able to get off the transplant list. His doctors said if it works, take it! I took celebrex for over a year till it just wasn't working for me. I was put on Bextra for a short time but It wasn't working at all! It's getting harder for me to get out and do anything. I went shopping with a friend yesterday and I'm payor it today. I'm starting to feel like the tin man on Wizard Of Ox,I creak when I walk !

LadyBrannon

Active User, Really EHEALTHy

Joined: 17 Jul 2003
Posts: 506
Location: TX

Herbalife... Posted: 08-01-03 23:02pm


Wow! You guys must be ecstatic! Celebrex? Do you have Lupus? If so, Celebrex is one that is typically AVOIDED because of Sulfa! Sulfa has been known to cause flares in Lupus Patients. I know I certainly cannot take it... Sorry about your modem! I hope all is well now! LadyBrannon

PattiT

New User, Becoming EHEALTHy

Joined: 11 Nov 2003
Posts: 5
Location: Oregon

Cellcept Posted: 11-16-03 20:38pm


I have lupus sle and diabetes I am on oral meds and 2 kinds of insulin. My rheumy has had me on 1000mg of cellcept in the morning and 1000mg at bedtime, I also take prednisone. When I started with cellcept in january I was taking 20mg of prednisone a day, I am now down to 9mg a day and have been able to tolerate the cellcept. In 8 months I dropped 11mg of prednisone. My cbc tests are good. Even though the meds are working I still have flares, but this is the best i've felt in 3 years. I have never been on plaquinil but I know you need to have your eyes checked more frequently. Any change at all in your sight you need to go to your eye doctor immediately. For me, my rheumy said my lupus was really bad, I needed something that would get in my system right away. I understand plaquinil takes a month to start working. I've been on just about every lupus med there is. Cellcept is the only lupus med i've taken that helped me drop my prednisone. I too gained weight, 35 lbs, from the prednisone. I probably will be on prednisone the rest of my life, but if I can keep the dose under 10mg it's a little easier to keep the weight down. I recently lost 15 lbs but I found out I had bacteria in my lower stomach which made me nauseous all I could eat was soup. It definately wasn't the way I wanted to lose weight. The antibiotic has just kicked in so i'll see how my weight goes. Hope this helps a little. :d

LadyBrannon

Active User, Really EHEALTHy

Joined: 17 Jul 2003
Posts: 506
Location: TX

Posted: 11-17-03 22:06pm


Thanks again, patti! I take 1.5 mg of cellept in the morning and again at night. Right now, I am back on 70mg of steroids. I had a bad, bad week! sigh the cellcept is working on the kidneys, but nothing else. I see the doctor tomorrow. I'll let you guys know how it goes! Hugs, ladybrannon

marysmith143

New User, Becoming EHEALTHy

Joined: 15 Nov 2003
Posts: 14
Location: Blanchard, Michigan

Prednisone Posted: 11-19-03 13:51pm


I see allot of us have on been on prednisone and plaquenil. Have the done bone density on you ladys? Has the plaquenil changed you eyes at all? After I was taken of prednisone I had to have my bones checked and I am in the early stages of osteoporosis. Plain what the cellcept is? Hope you are feeling well now,mary

LadyBrannon

Active User, Really EHEALTHy

Joined: 17 Jul 2003
Posts: 506
Location: TX

Posted: 11-19-03 13:57pm


Yep, had mine done! Lol! I still look all right. Thank goodness. My eyes are doing well too. I have more problems from the diabetes with my eyes than the plaquenil! Hugs, ladybrannon

sharon

Experienced User , Rather EHEALTHy

Joined: 17 Jul 2003
Posts: 191

Eyes Posted: 11-19-03 18:21pm


I had miine tested here resantly also. It was fine. I have alot of problems with my eyes. So does jenn. I'm not sure if the predizone is to blame or just having lupus. Sharon

becky0424

New User, Becoming EHEALTHy

Joined: 14 Nov 2005
Posts: 13
Location: florida

Hey Guys Posted: 11-14-05 19:54pm


I have been on all of them- plaquenil made me sick, I was on cellcept for probly 8 months- 2000mg- didnt help at all. Then I got sick and couldnt take any of my meds for about a month- I was throwing up, couldnt keep anything down- I asked my doc if I could just go back on prednisone- so now, that I am not on all the other drugs- I feel better than I have in years! I am on 10 mg of prednisone a day. And I too had gained 35 pounds from taking high doses- I still have 10 to lose!!

brenda49

New User, Becoming EHEALTHy

Joined: 24 Nov 2005
Posts: 6
Location: greenville,n.c.

to All Who Have Lupus Good Luck Posted: 11-27-05 03:47am


Hello, I am so glad I found this site! I have had sle for 15yrs good days and bad. I make the most out of good and do the best I can on bad days. I have just found about cellcept I saw my rhemuy on nov 8 did labs we r going to talk about me getting off of pred.. I hate that drug I have mild kidney failure so whatt I have read sounds good. I dont know what he will think about it. I to have been able to manage my weight oon 10mgs of pred but for som e reason after I had my gall bladder out I cant seeem to drop any if I do it will come right back. I dont eat a whole alot. Mind is fluid I cant take laxics they effect my kidneys I take dyaside when needed. I wanted him to ck my thyroid ths t4 my sister was dign. With hypo and hyper with graves dis.Last yr. My mother had thyroid probl. Some of the symtoms I had. I had a sister older who had lupus she passed away at 62 her rhemy was no good. I have a first cousin who has lupus she lost her leg 3yrs ago due to a staff infectin. I think lupus is heritary. Sorry so long needed to vent right now my face is blowed up. Brenda foreman :wink:

becky0424

New User, Becoming EHEALTHy

Joined: 14 Nov 2005
Posts: 13
Location: florida

Posted: 11-27-05 09:06am


Sorry to hear about your face! I hate that. I ended up just recently getting sick- I was getting off of my prednisone and asked the doc if I could go down 1 pill. Well the nurse told me he said to go down 1 pill a day-and I knew that it was wrong because ive been on them long enough to know you cant just stop. But, I wanted to be off of them so badly I did it- I almost went into shock, and went into withdrawls, was throwing up and couldnt eat or take any meds. While throwing up so much I ripped something in my back and couldnt move for about 3 weeks. It was terrible. So now im back on 10 mg and nothing else- I feel better than I have in a long time, I still have those days where I wake up and feel like I have gotten hit by a truck- but I still get out of bed and try to get out, that usually makes me feel better- im glad youve ound this site too- its nice to talk to someone going through the same things. I was excited when I foung this site too- but then nobody seems to ever respond. :(

ladyt

New User, Becoming EHEALTHy

Joined: 30 Sep 2005
Posts: 17

Posted: 12-05-05 13:01pm


Hi becky and brenda...I am pretty much going through the motions with my lupus also. For one I took plaquenil for about 2 months and my eyesight went from 20/20 to whatever is bad!! I took a serious toll on my eyes in a very short period of time. I haven't had any bad experiences from prednisone though. One of the things I go through is what is called synovitis. My elbow joints lock and prevents me from extending my arms. Sometimes it's in one elbow and sometimes it's in both. It's very painful and sometimes embarrasing. Say i'm at the drive thru window...Well if my elbows are locked I can't extend them all the way, which means I would have to open my car door and almost get out to pay and get my food. Just think of how people look at me when I do that. It looks like i'm flat out handicapped. It goes away for a few days then comes back. Also I have what is called pericarditis...It's where the sac that my heart sits in retains fluid..Making it painful to breathe regularly. This is also caused from lupus. I am only 24 years old and I have just had the worst 2 years ever. I try to make the best out of everyday but it's always something that tries to stop me from doing that.