How bad can systemic lupus get?

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Lupy_Fib
New Member


Date Joined May 2007
Total Posts : 4
   Posted 5/25/2007 5:51 PM (GMT -6)   
I am new to the group. I have had systemic lupus for a long time. I was diagnosed with systemic lupus in l992. Six months later I was diagnosed with Fibromyalgia. My lupus was not very bad until about a year and a half ago. It has been especially bad the last year. I am at a point where I am not sure what the future holds. I feel my health is going down hill fast.
 
Lupy_Fib

okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 5/25/2007 6:18 PM (GMT -6)   
Hi Lupy_Fib, Welcome to the group. Right now I'm not the best person to try to answer this question because frankly I feel like crap! More from my meds than from the lupus. In rare occasions lupus can be fatal. But I wouldn't worry about that too much. In other occasions you cvan go through times with absolutely no symptoms at all. It's not unusual for people to go through what you are going through It changes all the time. Even the weather can cause changes. Or new stresses in your life. new job, no job, new baby, no baby, new love life, no love life. Well you get the idea. It's a roller coaster. I don't think any of us know what our life will be like a year from now. All we can do is try to take care of ourself as best we can. Part of that is finding a group of people you can talk to that understands what you are going through. You will find that you have come to the right place here.
I'm sorry that you are having a rough time. I hope you have good doctors that are helping you with your meds.

anyway Welcome again Glad to have ya here!
hugs
carol
God Bless
Carol
 
 Newly DX's Lupus.Possible CREST,COPD, high PB xanax,triam , vicodin.5x3, Evista for osteo,. oxygen Plaquanil800mil, . effexor. spiriva, xopenex. pred.10.mil.
 
Come ye, all that are weary and heavy laden, and I will give you rest!
 
 


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 5/25/2007 7:32 PM (GMT -6)   
Hi Lupy and welcome. I'm sorry you have gotten so much worse in the last year. Lupus is such an unpredictable disease that it's hard to know what might be in store. It can be very scary to feel so sick and to feel uncertain about the future. Carol described it very well when she compared it to a rollercoaster. Like Carol said, the good news is that lupus is rarely fatal anymore, but it can be dangerous and it can take toll on your body and on any of your major organs. I'm hoping you have a good rheumatologist who has been trying to stay on top of your symptoms and making sure that your labs are okay.

I'm glad you joined us - we are a very supportive group who help each other through the unpredictable ups and downs of this disease. Feel free to ask any questions or let us know if you are having a bad day.

Take care and I look forward to hearing more from you.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 10mg; Neurontin 300mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



Lupy_Fib
New Member


Date Joined May 2007
Total Posts : 4
   Posted 5/25/2007 7:47 PM (GMT -6)   
I am going to get a second opinion on May 31st. My present rheumatologist is not helping me very much. He tells me to take the Ultram three times a day for pain. I do take Plaquenil for my lupus. I feel I am getting worst and he just will not try any other medications to help me. The last time I saw him I told him I was planning on getting a second opinion. He did recommend the new rheumatologist to me. If I like the new rheumatologist I will be changing rheumatologist even though I have to go out of town to this new one. In April I had to have surgery called Cartoid Endarectomy for a clogged artery in my neck.
The surgeon told me if I had not had the surgery I would have had a stroke in a very short period of time. Today I had to have minor eye lazer surgery because of blocked tear duct. On June 8th I will have surgery on the other tear duct. I just feel like I am falling a part. I am not sure if seeing a new rheumatologist will help or not but I thought at least it was worth a try. All I know is I need to getting something done and I can not continue the way I am .
 
Lupy_Fib

ladybug44r
Veteran Member


Date Joined Jul 2006
Total Posts : 794
   Posted 5/25/2007 8:09 PM (GMT -6)   
Hey Lupy this is a great group to be with.

Welcome

There are alot of great people on here to ask questions to or just to vent to.

VEronica

hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 5/26/2007 8:01 AM (GMT -6)   
Lupy, it definitely sounds like you need to see another rheumy. Last year I was in the same situation that you are in right now. My old rheumy was treating me with plaquenil and tramadol, which at first worked very well for me. Then over time, my symptoms got worse and worse and she wasn't willing to try any other meds for me. I suffered that way for almost a year and then decided I needed to see anothe rheumy. I went to a rheumy recommended by one of the members here and he said I had suffered long enough and put me on a trial of prednisone. I got a great deal of relief from prednisone and it has made a huge difference in how I feel. Of course prednisone has lots of nasty side effects, but for me right now it's been worth it.

I really hope the new rheumy can help because there should be something he/she can try to relieve some of your symptoms.

Take care
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 10mg; Neurontin 300mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5511
   Posted 5/26/2007 9:47 AM (GMT -6)   
I agree with Hippimom, you need a new rheumy.  He/she should be open to trying new medications.  There has been a lot of progress in lupus treatment, with new options that might work better for you.  Our bodies change a lot over the years, from hormone changes, stress, etc.  So what once used to work for us, might not after a number of years.
 
Stay proactive and get another opinion okay!
 
Ginny
I can do anything through Jesus Christ who strengthens me.  I have learned in whatever state I am in, to be content.  Phillipians 4:11-13

33 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(stroke),Sjogren's, Raynaud's, seizure disorder, libman sach's endocarditis, vasculitis, sacroiliitis, Neutropenia, thrombocytopenia, possible early menopause - do diagnosis yet. Prednisone, Imuran, Coumidin, Clobazam, Amitriptyline, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2515
   Posted 5/26/2007 10:15 AM (GMT -6)   
Hi Lupy, and a warm welcome. I'm sorry you are in a bad flare and hope your new rheumy will prescribe meds that will help you come out of it. What do you take now? Finding the right combination of meds has been a trial and error process for me as I suspect it is for most of us.

If your lupus has not caused too many problems for you and suddenly last year it got much worse, you probably are having what we call a flare. For most of us these flares come and go, but when you're in the middle of one it is very scarey because you don't know when or if it's going to end. That's where the meds become real important.

You mention having lazer surgery to open up clogged tear ducts. Do you have sjogren's? If not, that's something you should discuss with your rheumy.

Lupy, we all feel like we're falling apart from time to time, and that's where this forum becomes so important to us. When we feel that way we come here and gripe, complain, vent, and moan about what's going on and then our friends here, who know exactly what we're going through, give us the support that we need.

I'm glad you have found a new rheumy that you like. I've been to several and have finally found a woman that has helped me. Good luck with him or her. I believe with proper treatment and rest you will get past this flare. I pray that you will.

Thanks for joining us.

Pat
Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision.

cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, cymbalta, tramadol, lunesta, actonel, meridia, tricor, aciphex, multivitamin, calcium w vit D, fish oil, aspirin


Lupy_Fib
New Member


Date Joined May 2007
Total Posts : 4
   Posted 5/26/2007 10:34 AM (GMT -6)   
The reason I had eye lazer surgery to open up my left tear duct was because I have cataracts that are not ready to be taken off. The cataract was blocking the tear duct. I will have the right eye done on June 8th. Cataracts were blocking both. My opthamologist told me if I did not have the tear ducts opened that I would get a real bad headache and would not be able to find anything to help unless I had the surgery.
I take Plaquenil 200 mgs. twice a day. Ultram three times a day, Toprol XL for high blood pressure, Felodipine for High Blood Pressure, Lasix, a diuretic, predisone 5 mgs. twice a day. I am hoping this new rheumatologist will be able to help me. If he can't I am not sure what I will do. The only thing I really know if I have to find an anwer somewhere. I can not continue the way I am.  Do other people have problems with their rheumatologists as far as getting good treatment from them?  I really did not want to go out of town for a rheumatologist but I had no choice since the rheumatologist I am presently seeing is the only one in town.

okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 5/26/2007 10:57 AM (GMT -6)   
Hi Lupy, Oh yes your problem finding a good doctor is nothing new. Either you can't find one when you do they move or somthing. I had a awful rheumy. and it was 4 hour round trip to see him. I've been battle for medicaid so I can have more options. but that is a whole nother story. You are right though you need answers and you deserve good health care. Keep serching. Some people have gone through a half a dozen or so before they found a decent one.

Hugs
carol
God Bless
Carol
 
 Newly DX's Lupus.Possible CREST,COPD, high PB xanax,triam , vicodin.5x3, Evista for osteo,. oxygen Plaquanil800mil, . effexor. spiriva, xopenex. pred.10.mil.
 
Come ye, all that are weary and heavy laden, and I will give you rest!
 
 


omega
Veteran Member


Date Joined Jan 2007
Total Posts : 602
   Posted 5/26/2007 11:08 AM (GMT -6)   
Sorry to hear about your flare and the things that you are going through.  It could be frustrating when the Rhumty is not aggressive enough.  My first Rhumty also would not prescribe me any pred. but NASIDs only.  I was always in pains.  Then my second Rhumty then prescribed me Pred. and I felt so much better.  I agree w/all others that Lupus is like riding a roller coaster.  Sometimes is good and sometimes is bad.  I also had a year when I had lots of problems, but things are getting much better now.  Do not worry.  You will see the sunshine. yeah

mom46
Veteran Member


Date Joined Dec 2004
Total Posts : 8198
   Posted 5/26/2007 1:55 PM (GMT -6)   
Hi Lupy,
  Welcome to the forum. I agree with the others about the rollar coaster ride of lupus. We never know what hills, dips, twist and turns are ahead of us.
  I hope you find a new rheumy soon and get on the proper treatment to help you feel better. Please keep us updated and take care. You will be in my thoughts and prayers.
                                                                    Babs
 
 Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Sensory Polyneuropathy
Meds:Arava,plavix,aspirin,protonix,gabitril,zanaflex,xanax,
mirapex,advair,foxamax,donnatal,folic acid.
 
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.


bhkhhh
Regular Member


Date Joined Jul 2006
Total Posts : 245
   Posted 5/26/2007 5:54 PM (GMT -6)   
Hello & welcome Lupy. I really can't add much except it really helps to have a group you can come to for support where people know first handed what you are going through. I hope you have good results with new rhuemy
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