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View Full Version : Hi All Newbie here my partner was diagnosed in April 2011



MaryS42
05-25-2011, 12:24 AM
Hi Everyone as mentioned above my partner Alan was diagnosed with Lupus Nephritis SLE stage 4. I have to say it was good to finally get a diagnosis to all his symptoms however we had never heard of Lupus (except on House)!!! so we left the hospital not really worried as his doctor never even explained it to us or how serious it is. That all changed when we came home and googled then we were worried.!! The Lupus is just another thing to deal with on top of everything else that has happened to him as he was involved in a motorcycle accident in Nov 2006 where he sustained muliple injuries he broke his neck in 2 places C1 & C6 he fractured his sternum broke both his hands tore the main artery(Aorta) in his heart and completely smashed his left leg up this has been re-built twice since. So as I said we've had our fair share of worry and ill health already he got diagnosed with Kidney failure in 2008 stage 3 however its taken the doctors till now to diagnose Lupus as he's been too ill to do a kidney biopsy on. Anyway I am so glad i found this forum while researching and I appologise in advance if I use this site to "Vent" once in a while or ask questions etc but we are still trying to get our heads round all this.
Thanks Mary.

tgal
05-25-2011, 12:37 AM
Hi MaryS! Welcome to WHL. I had to chuckle at the "House" comment. You do know that he FINALLY diagnosed a case of it about 2 years ago LOL.

I am really sorry for all that you and your partner have gone through! Although no one knows exactly what causes Lupus or other AI diseases there is a growing belief that many people have the potential for the disease in their body however they have to have a catalyst to "turn in on". Those catalyst are believed to include exposure to some sort of chemical, accidents, surgeries or even severe times of stress. Basically many of the things that he was involved in! I am so glad that you decided to join our WHL family! There are tons of people here which transfers to tons of information. Please feel free to look through the old posts or start new ones if you want. I look forward to getting to know you!

rob
05-25-2011, 10:59 AM
Hello Mary,

Feel free to vent whenever necessary. Welcome to our group!

Rob

lovedbyHim
05-30-2011, 11:47 PM
Hi Mary's, As I read this I was thinking about how hard it is for the partners of us with Lupus. I think at times it must be harder for you than for us. Watching suffering can feel so powerlessness. Reaching out is to talk with others who understand this, is new to me, and wonderful! I hope you find the encouragement you need.

MaryS42
06-04-2011, 02:50 AM
Hi Guys Quick question can sun exposure cause a flare or at least make you feel quite ill as you can imagine we dont get to see the sun very often here in Scotland but yesterday was a particularly very hot day and although Alan did everything he's been told to do ie: high factor sun screen hat on head etc he felt very ill he could barely lift his legs to walk they were shaking a lot he felt dizzy and sick he didnt actually vomit but felt as if he was going to be all day my question is was it the sun that made him so bad yesterday or was it the drug cocktail he has to take of 750mg twice daily of Mycophenolate(Cellcept) and 50mg daily of prednisolone?????? He has good and bad days but yesterday was the worst one so far!!! Thanks Mary.x.

steve.b
06-04-2011, 03:09 AM
yes, sun exposure can cause a flare.
there is quite a few threads about this.
sun light and flourecent lights give of ultra violet rays.
these rays cause the flare.

Linda From Australia
06-04-2011, 03:10 AM
I am not sure why he was feeling so sick, but it could be a combination of his medication and sun exposure. It would be good if he makes a journal on his symptoms so he can see a pattern.

mrstjscott
06-04-2011, 06:47 AM
I saw that House episode and began crying. Too emotional for me..
I didn't know lupus had stages. Can someone explain further?

Linda From Australia
06-04-2011, 06:55 AM
The stages Mary was talking about is kidney disease, not Lupus stages

tgal
06-04-2011, 09:26 AM
Sunlight and/of Florescent lighting can absolutely cause a flare. It does it to me every time. It not only messes with my Discoid Lupus (skin) It can send my SLE into a downword spiral. I am adding a link below that will take you to the sticky about Photosensitivity. I do hope everything gets better!

Sun and flares (http://forum.wehavelupus.com/showthread.php?4365-PHOTOSENSITIVITY-in-LUPUS)

giggle
06-04-2011, 04:38 PM
I feel the same way your partner does when I go out in the sun. Some days are better than others and I can get away with more sun exposure. But generally I try to stay out of it. I am sick most of the time because I have to work and the lights at the reception at work are a bunch of big fluro lights. Four to light the area that one would be able to light : (
Anyway, the best thing to do is stay inside on very sunny days : ( I do miss the sun.

I dont think my partner finds it hard watching me suffer because I never make it obvious I am suffering and he is a man after all lol He probably wouldnt notice and if he did it would only be because I was so ill that I was unable to do much and it began to impact on his life.

MaryS42
06-06-2011, 02:30 AM
Thanks everyone for clearing this up for us it is so hard to know whether the symptoms he is displaying are from the sun the drugs the lupus itself and the doctor that is treating him is a kidney specialist not a Rheumy so she knows a lot about kidney failure and very little about Lupus I probably know more than she does about Lupus through my own researching.It is so hard to sit here and watch the man you love suffer in this way and be totally helpless to ease that suffering I dont know how all the carers out there do it.But what else can I do except research and learn as much as I can about Lupus and hopefully help him to cope and WHL has been an absolute godsend so thankyou all for your prompt replys to my questions all my love Mary.x

steve.b
06-06-2011, 05:41 AM
he is a very licky man................
to have you.

MaryS42
06-07-2011, 03:12 PM
Sorry here i go again Alan is now having what I can only describe as (shaky legs) when he is sitting down he describes his legs as feeling (restless) but when he stands his legs shake quite violently. Fortunately we were up at hospital today and told the nurse about this and she said it may be because his potassium was high (6.1) they normally like it to be between 3.5 - 5 but im not convinced and neither is he because his potassium has been higher than this before and he didnt have the shaky legs has anyone else experienced this and if so do you have a reason/answer as to why it happens??? Thanks Love Mary

Peridot20_Gem
06-14-2011, 02:45 PM
Hi Mary,

I'm welcoming you properly now to WHL and we're all a terrific bunch of suffers and you'll get the answers you need when asking and vent away as it's better to get it out then holding it in.
How Alan was feeling about the sun was most likely his meds and sun exposure can be terrible and cause a flare, so when he's out of hospital he needs to be careful what heat he's sitting in and he's best keeping to the shade.

I've been answering about his seizures besides other member's but i've just seen that he had shaky legs, when my fits started to happen my legs would shake, then my arms and how i came to go into hospital to be monitored i was at the top of the stairs my legs started trembling and i went from top to bottom of the stairs they rushed me in hospital and monitored me for a week and nothing but two days before i was due to be discharged i collasped in the toilet fitting and the door was kicked open and that's how my seizures was confirmed and since then i've had them ever since and i'm on a right high cocktail of drugs.

Luv Terri xxxx

Elo
07-02-2011, 10:28 PM
Hi there - I know this is a little late after your question, but is it possible he could have Restless Leg Syndrome? It can be triggered or caused by stress or even some medications. I'm not sure if that would effect his legs while standing though. Personally, I also jiggle my legs a lot, especially when I'm sick. I'm not sure what you mean by his legs being shaky as he stands, but is it possible that they're just shaking from him using them so much? I know that sounds odd but jiggling or twitching your legs can be pretty tiring, especially if you have problems with muscle pain/weakness and fatigue, like many with Lupus do.


Woops, just went back and reread, and you never said he was moving them. Eep!

Well anyway, a belated welcome to you, and sorry if I misunderstood what you were saying!