View Full Version : hello, my wife has SLE
12-26-2011, 01:07 PM
Hello. I wanted to post to say Hi. I may be in the wrong place but my wife has SLE and it is killing her. For starters I must ask...is it safe to assume that all the 'cure lupus natrually' web sites have been ruled out? They all sound like the ideal healthy way to eat, but does anyone know anyone that has actually been helped by any of it?
Welcome to WHL.
Unfortunately there is no cure for SLE, natural, or otherwise. A good balanced diet is certainly beneficial to good overall health, but in regards to SLE/Lupus, there is no diet that has ever been proven to have any disease modifying effects on SLE/Lupus.
There are people who push these sort of fraudulent "natural treatments" or "cures". They promise you the moon and yet they never provide any valid evidence of the safety or efficacy of their product. And, some of these products can actually be quite dangerous for a Lupus patient to take. An example would be products that purport to boost your immune system. The last thing anyone with an autoimmune disorder needs is to boost their already out of control immune system.
Is your wife currently seeing a Rheumatologist? If so, has she been started on any sort of a treatment program with Plaquenil, or other Lupus meds? There are some proven meds available that can really help with managing this disease.
Hi and welcome to WHL. First let me say that you are not in the wrong place. We are really glad that you found us and even more glad that you asked the question that you did instead of going out and possibly causing your wife more difficulties. Rob answered your question so well that there is nothing more I can say.
You do need to know that Lupus is no longer a death sentence although it often takes awhile to find the right combination of medicines to get it under control. I would be lying to you if I said things would get back to the way they were because, for most of us, it doesn't. Having said that you should know that things can get to what I call a "new normal" and there is life (a good one) with Lupus. Dreams and plans change but that doesn't mean you don't get to have them.
Find a GOOD doctor(s) (this is harder than you know!), have her take her meds, eat right and learn the things to do and not do and you will be surprised at how "normal" life can be. There will be good times and bad it isn't as bad as you are thinking/feeling/worrying that it is right now.
We are here for you and your wife as long as you need us.
12-26-2011, 05:58 PM
I used to live in San Antonio, and I had a really difficult time finding a good rheumy. I finally found the best one that I've ever met - Dr. Emily Pineda.
It may take a while to get an appointment with her, but she's really worth it!
Rob and Mari have given you good advice. None of the "miracle cures" are worth wasting money upon. A good healthy diet is great in conjunction with the proper meds.
If your wife has lots of digestive problems, she might want to ask to be checked for things like IBS, gluten intolerance or lactose intolerance. If she has a positive for any of those, then a change in diet is needed. I have daughters with those problems, and diet does make a difference for them. However, it's necessary to get the testing done before changing the diet, or you can get a false negative.
I wish you luck. We'll be returning to SA in a year or so, when my hubby finishes his degree.
12-26-2011, 06:45 PM
hello and welcome Craig
You've been given some excellent advice with reference to supposed"cures" and I can't add much more other than to say that in addition to avoiding these false cures, you must also avoid most herbal "remedies" as many herbs can actually cause the symptoms worsen.
I also want to reiterate what Tgal stated...Lupus is not a death sentence and we can live long and productive lives once we find our "ne normal".
Please know that we are all here to help both you and your wife as much as we can. You will find that there is always someonehere when you have a need for us. I am so happy that you fou d us and that you decided to join our family. Welcome :-)
Peace and Blessings
12-26-2011, 07:37 PM
hi craig, and welcome.
please re- read the posts above.
3 of the poeple who have written are our 3 moderators.
between them is the wisdom we need to help ourselves.
i cannot add anything new to there advise,
but i did want to say hello and welcome.
12-27-2011, 09:33 AM
Thank you all. She was diagnosed with lupus a couple years ago. It was mainly weak and tired feeling that went along with her skin rashes on upper arms and face. She has taken a lot of meds including Plaquenil but nothing seemed to make any difference except she failed her retina exam, so she stopped taking it. She finally got in with a Rheumatologist that took months for the appointment. Seems like a good guy, Dr. Jeffery Fienstien here in San Antonio. While waiting for that appointment she had a flare up that was worse that ever before.
He ruled out fibro and arthritus and says he believed it all to be SLE. Blood work showed a concern with her liver as he put it 'the lupus may be attacking your liver'. She had an ultrasound last week and we go back to see him on Friday afternoon to get those results. My wife, Deanna, has alll but given up on positive thought and it's becoming more difficult for me to keep saying it's going to be ok when in reality it is just getting worse.
Unfortunately, meds rarely effect her the way they do with others. If I take Nyqil, I'm out for the week, if she takes it an hour later she dusting the ceiling fans. Her current doc gave her some Ambian to help because she just cannot sleep at all (partly because of pain, partly because she is so worried). He said to make sure she could devote 8-10 hrs of sleep when taking the Ambian, she got 1 hr that night. He also increased her steriods by an enormous amount. Her rash cleared up, but that was all.
I know stress is a huge factor, and I do everything I can but still stress finds her. I am trying to be supportive and doing everything I can, which because it's lupus, there's nothing I can do. I am sorry to ramble on here, in all these years I have not had anyone to to talk to about any of this as I am the rock and cannot have a break down.
As lots of women tend to lie about their age, for years she was still 29 years old, until our son was aurguing and defending her to the other siblings. Since then every year, Dec. 15th, she dreads her birthday because 'she's too old'. This year however she turned 44 (in real years) and we stayed up all night crying because she wants to be 45, and 46, and so on. I feel so helpless.
I will let you know how Friday goes. Thank you again for your input and support and listening to me.
For many of us it takes months or even years to get a diagnosis and, after that, almost as long to find the meds that work. Sleep is REALLY important but like your wife, there are no meds that work to make me sleep anymore. One of the fibro meds used to do it but I maxed out on that and it stopped working. It does make things much harder.
For a long time I didn't really know I was sick. I thought I was just getting "old" ( I am 43). When my memory didn't work the way it did before, when I fell into the bed after work because I couldn't go any longer, when I kept getting these weird rashes all over me... on and on it went. I then began to put on weight out of no where! I felt like I was falling apart and had no clue why. That is the most depressing time.
She is going to find the right mix of meds eventually. Just remind her that it takes time but there is a light at the end of the tunnel
12-27-2011, 11:33 AM
I don't have any great wisdom to add, but wanted to say welcome and hello - and let you know that you are probably helping her more than you can really know just by loving her and being supportive. I am very lucky to have a husband who is like that too, and I know this is a frustrating and scary situation for both of us.
We can't always choose which bends and waterfalls come our way as we row down "the river of life", but it's great to have somebody with you in the boat. You steer things to clear waters when you can, and you just do your best to avoid capsizing when you can't. I'm sure she's glad you're in there rowing with her!!! Hopefully this forum can be a lifeline for you, and maybe her, too!!!!
Here's wishing you both a healthier and happy 2012....
12-27-2011, 02:39 PM
First of all, welcome to WHL.
Ohh, if I could be 44 again, I am going to be 56 in January.
I am really sorry, that your wife is feeling so scared.
My rheumy is telling me the same thing, he thinks that Lupus is attacking my liver.The ultra sound did not show anything unusual, but the bloodwork is showing very high liver enzymes. He is trying to figure out, what to do next.
I am very fortunate, that Ambien is working for me, it's a Gods send. Without it I can't sleep at all.
Like other people here told you too, thankfully having Lupus is not a death sentence anymore. I think your wife should talk to her doctor about her fear of dying, I am sure that he can ease her mind.
12-27-2011, 07:23 PM
Sleep? What is sleep? I manage to nap a bit through the night, but I wake up every two hours, in pain, muscles spasming and feeling either too hot or too cold.
The problem is that when I'm restless, I disturb both my husband and my service dog, and then they keep each other awake.
Nights are never peaceful around here lately.
12-28-2011, 03:49 PM
That is my fear, her being told that liver looks ok, but we still don't know what's going on... Not that I want her to have a liver problem of course, I just want some certainty of here is the problem and this is how we are going to fix it. That is the biggest issue with Lupus, it just keeps changing it's mind and nobody has any clue as to what to do. Doctors are like not very good mechanics. They think something is wrong and the change a part. Car still won't work, they change another part, and on an on never really having a clue what to do. Frustrating.
12-28-2011, 05:36 PM
i am sorry craig i know it is hard but lupus is just one of the diseases that cannot be cured and it is hard to diagnose i am 46 and it took 20 years before they found out what was wrong with me . i know it can be frustrating and many of us never have a good nights sleep. i am glad you found us we are now your support system and you have become one of the family at whl take hope you get the answers you need. but know we are here to listen.
One thing that really stands out in your posts, is that you are totally supportive of your wife in regards to her having Lupus. There are many of us who had nobody to turn to, nobody to lean on after being diagnosed. I learned the hard way the true meaning of the term "Fairweather Friend".
One of the greatest gifts a person with Lupus can have, is a person such as yourself. Having a supportive and caring spouse, family member, or friend, really means the world to us.
01-02-2012, 10:17 AM
Update. On Friday my wife got the results from liver ultrasound and blood work. Liver is fine again. Count went from 81 to 21 thanks to the steriods. He is starting her on Imuran and lowering the steroids. Taking Lunesta for sleep which is working very well for now. Still she's in so much pain in hips, hands, etc, hair is thinning and feels she is put on more weight than during any pregnancy. Worried that Imuran won't be effective and just have bad side effects. We are crossing our fingers. I love her and her family loves her. She could be a million pounds and bald as an eagle and I would be right there by her side. I think lupus plays an mental game on all suffering from it. Depression and fear can cause your health to be poor on its own.
I understand this site is for people with Lupus and technically I do not. Well my wife may be the one with the symptoms but we have lupus. I think possibly a new thread should be generated for spouses and family to help them help. There are too many stories of a spouse thinking the other is crazy with new symptoms or spouses leaving because they can't handle it. Perhaps something can be gained here. We have teenage children, that are the greatest, but they too can have difficulty doing or saying the right or wrong thing. Another idea that may already be here on WHL, a post providing all members (if they choose) age and location (city/state only). Seems like if my wife can talk to or sit down with another person going through the same crap as her, oddly enough, it will possibly make both feel better. There may be members that don't realize another member is not far away. Just my thoughts.
I understand this site is for people with Lupus and technically I do not.
First off, thank you for the update. Even though your wife is still dealing with pain, you do have some good news, and even a little good news can go a long way.
In regards to actually having Lupus as being a membership requirement, that is not, nor will it ever be a rule here. Anyone can join. Friends and family members are most certainly welcome, and we encourage them to participate here in whatever way they see fit. You mentioned that although your wife is the one with the symptoms, you see it as both of you having Lupus. I think that is a great way of looking at things, and I wish more family members could have such a supportive outlook and attitude.
We have a section of the forum that is specifically for family members to post in. You are free to start any thread you would like there. However, it's not an area that receives much traffic. If you want, you can start a "family members" thread in the area known as Lauri's Lounge. It recieves the most traffic/views, and it's open to just about any subject matter, Lupus related, or not. Either option would be fine.
On the subject of location and age, all members have the option of listing their location and age in each post (top right corner), and on their profile page in the "about me" area. Some people, for various reasons, prefer to keep these details private, but others opt to make their location and age known to others. There is also a section of the forum for support group locations, and many of our members have actually met in person after posting and making contact in that area.
If there is any way we can help, please let me, or our other moderator Tgal know.
01-02-2012, 01:42 PM
Thank you Rob. I should have looked around the site a bit more before jumping the gun. Another area that is missing (and I have a fear as to why) is a place to mention good days or good meds or good docs, etc. A place to see and hear something positive no matter how small or insignificant it may seem. Yes, it is great to interact with people experiencing the same issues or symptoms and know you are not alone, but there must be someone out there that can say 'I took this med... and I have felt much better’, or something in that ballpark. Perhaps the Faith and Fellowship thread was intended for this, I jumped the gun again. Perhaps I am now past the initial scare regarding my wifes liver and now I'm angry and looking for something real, something positive, anything at all. I am sorry for going on and on, but you guys are my new family now.
01-02-2012, 02:09 PM
craig you are not going on and on my new family member we all go through stages of grief and anger and depression because of what this disease has done to us. but we do have good days not all of them are bad and yes our meds do make us feel better some of us can go months without flaring again but we are all different . we chat about lots of things here the good things and events in our life and the bad. lauri lounge is our main posting but our chat room is great we chat about everything there. i want you to know you are a wonderful man for supporting your wife like you do . i know because i have one to he has been my rock through doctors and flares and mood swings and weight gain he has been there. there are days when i have not been able to get out of bed and he has helped with house chores , shopping and looking after my teen daughter even though he is ill himself. just know we are here for you or your wife if she needs to talk hugs
01-02-2012, 07:29 PM
..... Another area that is missing (and I have a fear as to why) is a place to mention good days or good meds or good docs, etc. A place to see and hear something positive no matter how small or insignificant it may seem.....
we do have threads that cover these subjects.
there is one specifically for our good doctors.
we have many threads about things we enjoy.
but the beauty of this place....
is anyone is free to start another thread about anything.
we often have a new thread started about an older subject.
please feel free to start any ew thread.....
or post to an older thread.
thank you for your input.
it is people being real that makes this site what it is.
01-02-2012, 09:21 PM
I like your idea of forming a San Antonio support group. We still own our home there (in Leon Valley) and we'll be moving back in a year or so, when my hubby finishes his PHD. He will go back to working at Lackland AFB. Keep in touch here, and we will make sure to get together when we move back. (Or even when we happen to be there to visit our daughter who lives in Boerne).
We have quite a few members who live in Texas - some in Houston, some in the Dallas area. It would be nice to organize a Texas get-together (but only after I move back - LOL)
Lauries Lounge is where we talk about anything, good or bad. It doesn't even have to be Lupus related. We have a thread called "you know you have brain fog when" which is hysterically funny! It is all the silly (stupid, dumb, crazy, (fill in the blank) things that we do when we are having bad brain fog days. There have also been threads of our favorite music, videos and on and on. We know that life is full, even with Lupus. Feel free to post all the good things that you can think of!