LUPUS UK
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Writing from my hospital bed

I think finally my time is up in this world. Smhw i just feel im nt getting out of this one.

I keep going in and out of conciousness eversince I was admittd...

Vision slowly going...

Forgetting who or where I was

Even writng this is blog is so tough fr m

Lumbar puncture was done

Ct scan... nothing shown

Lupus extremely active

Lupus nephritis hittn hard...

I heard d rheumy talking about smthind cyclophosphamide as my only way oit fr me

Any1 ever had it

Srry bout my post fr being dreary. It is d bst I got in me.

Sch emailing me that I will be withdrwn for missong out too long with no report

AWW God

54 Replies
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hello im so sorry to hear you are in a bad way hope you get the correct treatment that can help you i pray that you will be better soon i think this is a chemotherapy drug that treats some cancers as well as auto immune related conditions it helps with the lupus and lupus nephritis i havent taken this drug but am sure it can help significantly but it has some pretty scary side effects i wont write them as i dont want to put you off i hope i culd help in a way and hope you will see some light at the end of this very dark place your in at the moment.

Danielle

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praying for you too xx

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Hope you are feeling bit better soon. Take the meds they offer you, they wouldn't give them to you for no reason.

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Hope your feeling better xx

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Thinking of you, hope you start to feel better soon xx

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Sending you love, and hoping that our support will help you find the strength to carry on and get through this awful flare xx

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Thnk u guys fr ur support guys. Feelng a littl bit bettr.

My dad has told me to go ahead with the clyclowhatver.

I read thru its side effects... horrible... really horrbl coz im only 22yrs of age.

Side effects include infertility...

1 thng that makes me laugh was a funny brother

"Go u jackass. Your Xbox is mine...:)"

And I love the kid...

Cheerios

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I am so glad that you are feeling a little better and sincerely hope the drugs work. You are in my prayers.

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You sound like a real fighter, we are all praying and rooting for you kido. Get well soon.

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Hi there, all my thoughts with you and hoping and praying that all goes well with you. It sounds like you have a fab family. Big hugs x

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Thnx guys. The forum here is awsome. Its like the family I never had...

I hope a cure will b found soon. To many ppl r suffering frm lupus in silence.

Nobody understands us expect us... we hav to fight on...

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Hope you feel better soon. Sending you a big hug x

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Sending a virtual hug from California. Hang in there Nazia :-) xxx

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sending you hugs x

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Hello there - yes the cyclo is horrid - but loads of us have had to have it and it works. SO hang in there. You can live to fight another day!

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Stay strong....xxxxx

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So sorry you are having such a bad time, really feel for you as I have been there. Please don't worry too much about the Cyclophos, it is given quite often these days for severe SLE esp with renal involvement, and Docs seem to understand a lot more about correct dosage etc.It does appear to be effective, I know of several patients over the years who have received it for renal involvement who have responded positively..Usually given in 'pulses' i.e.monthly( or other intervals )for say 3 to 6 months as an infusion, sometimes as tabs to take daily.Side efects can be nasty but if you are only on it for the usual length of time shouldn't be too bad.Unfortunately for me, I ended up being on it for 9 years instead of the recommended 3 months so suffered quite badly, but this was 22 years ago when its use was fairly new, and i was under the care of a nephrologist for that period who was renowned for leaving patients on medication indefinitely, it was only when I came under the care of an actual rheumatologist that I was taken off it.I was also taking increased dosage of Pred and Aza as well (already taking them) and I had plasma exchange too, so not sure which of these treatments did the trick, but I did get over my post- partum flare, which had gone untreated for 18 months, which is why I ended up needing so much treatment,-coping with 2 babies born 11 months apart and a lupus flare-up all that time left me in a pretty bad state. I would have tried anything I felt so bad to be honest, I too felt as you do, that I wouldn't get through it all, and seriously wondered if I'd be around to see my babies grow up,but here I am 22 years later and my babies are now 23 and 24! Just a word of advice, though, when you start to feel better and your flare is under control, come off the Cyclo as soon as you can, although I'm sure your rheumatologist won't keep you on it for any longer than necessary.Please stay positive, fight this thing with all you've got, and you will get through this, will be thinking of you xxx

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Stay strong x

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Thinking of u and hope u feel better soon xx

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Thinking of you and praying you will be feeling much better soon. Try and stay positive think of leaving your hospital bed and being back home with your family. All will be ok have faith xx

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Stay strong & keep fighting. You are in my prayers.xx

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Stay strong and stay positive. Thinking of you xx

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My mum has just finished having that cyclophosphoride treatment for Scleroderma which is another immune related disease and she's come through the other side of it she didn't have too many side effects just mainly tiredness so take whatever they suggest as they are coming along with treatments now at great speed compared to years ago. It is a chemotherapy but it depends what dosage theyre going to use. I wish you back to good health xxx

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What a fantastic reply from Vonnyrad!! Someone who's been in exactly the same place and had come through it and with such a positive outlook!! And you my friend have still kept your sense of humour, that shows me that, that's your way of coping... You are inspirational for managing to post on here.. So keep going!! Imagine we are all around you with our positive thoughts willing you to feel better because WE ARE!! Xxx

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Sorry you are so unwell please dont give up keep fighting try and stay strong our thoughts are with you wishing you back to good health xx

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Really sorry to hear that you're suffering -stay strong and take everything you need from friends and family. My thoughts are with you xx

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So sorry you are feeling so ill at the moment.Sending you healing prayers.and big hugs xxx

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Really sorry to hear you're suffering. Hang on in there, when I was 25, my son was 6 weeks and my daughter was 3 years I ended up in intensive care with septicemia and had a 40% chance of survival and although at the time I was in more pain than I've ever been in in my life (worse than childbirth) I got through it and I'm sure you will too. Keep strong, fight the side effects, it's the only way to do it. Keep your mind on the things you want to keep the most in this world and you'll stay here for them. Lots of love to you xx

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Really sorry to hear how tough things are. Sending you strength.

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Sorry to hear you are feeling so poorly, but go ahead with the chemo - I had 3 courses last Christmas, first one on my birthday then one Xmas Eve!

The first dose made me feel quite sick, but the other two were actually ok and I felt so much better for having it, Im now on Methotrexate orally which is also a form of Chemo to keep me 'topped up'

They dont give such a high dose for Lupus as they do for Cancer but never the less its still effective.

Hope that helps xx

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Hi I think you are so inspirational and brave, yes you are very ill at the moment but remember you will recover from this, stay positive. Such a brillant story from vonnyrad it really made me smile. I too was very poorly 2 years ago with a post-natal flare and spent 5 wks in 3 different hospitals, on oxygen. My 2 babies would visit me almost everyday and my heart was broken as i was scared and lonely that this disease would take me. But then i put in my headphones and listened to some upbeat music to remind me of my old self and that always kept me going. 2 years on ive got through it, everyday is a struggle but im alive and i appreciate simple life everyday! Will light a little candle and say a prayer for you today xx.

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please think positive dont give up hope you will fill better soon hang in there thinking of you big hugs xxxx

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I am so sorry to hear that you are in this state Please be strong we are all here for you I'm sure your docs will help get you through this But they need your strong willpower to help them I am sending positive vibes to you hope everyone on the site does so to they really help I have proof Love and get better soon

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My heart goes out to you! Huge hug x

I really hope the cyclophosphamide works for you, i know it may have different effects for everyone but i had really positive results when i had it.

Best of Luck, hang on in there! :)

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@vonnyrad

Beautifl...absolutely beautiful post. It got me more motivated to go ahead with the new treatment. Your kids are jst my age. Say hi to them fr m will ya. It is nt easy growin up with a mother with lupus. They are potential fighters as well.

@every1

Im not thinkin twice nw about d treatment. I will go at it head on. God has a plan for us all.

Mwaaaah! I love u ppl. Thnk u yet again.

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Hope you feel better soon naziamuhd.Sounds like yr a really fighter.Good on you hun! X

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Dear naziamuhd

Sending you my love for struggling for your life. My spouse is same to you. She is resently diagnosed that she has LUPUS Nephritis. Doctors had told her that She will loss her hair, fertility, blood and so on. She is ready to loss her hair, blood, fertility but she only wants to be alive. Now she is getting better. She is happy to be better. Doctors has said her that LUPUS will be controlled with in six months. She is waiting for this period.

I would like to pray with god for your better health. Please don't be worry. You will get better soon.

Bhaskar Chaudhary

From Nepal.

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im so sorry you are having such a bad time, it,s awfull to feel so bad makes you helpless but we are here for you and will hold you in our thoughts and prayers.

thats the good thing about this website we are here for each other I hope you have good news to share with us soon.

God bless Judith

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Hi Naziamuh, so sorry you are in hospital but you are right God has a plan for all of us no matter who are what we are going through.

I had three infusions of Cyclo towards the end of 2011 and again last Oct, Nov and this Jan and its not so bad you are not at the hospital a long time. I have SLE with lung damage, so it was given to slow down my immune system because I could not breathe properly.

Praying for healing, peace and joy.

lots of love Maureen xox :)

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Sometimes we take two steps back and only one forward then all of a sudden we start to take two steps forward and only one back. Eventually its all forward and I am sure that will be the case.

Hang on in there and take the medication and you will be leaping forward in no time at all.

Margaret x x x x x x

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sorry to hear how ill you are. i know how hard it is to be in hospital. I had cylclo when i was first diagnosed with lupus. It's used to dampen down the lupus. sadly it didn't work on me. but hopefully you won't have the same result as me. make sure you take your anti rejection pills before,they help a lot. good luck. x

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sorry not anti rejection pills. anti sickness pills. my apologies. get well soon.

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Stay strong, thinking of you xx

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Hi nazia,

Keep strong honey, look forward to seeing you on hear again you have a great wee attitude take care, lots a love Kay x x x

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Go girl and kick lupus's arse and then some.may god give you a speedy recovery x

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Bless you hon, fight cause you are loved and needed. Fight hard. You will make it. Sending you love and light xxx

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Only just read your post-am thinking of you-as all the others have said-keep STRONG-you still have so much life to live and you CAN do it-God bless you-you will be in my prayers tonightxxxx

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Hi Nazia, You hang in there my friend. Get those boxing gloves on and show the wolf you are up for a fight. Give out a loud howl, don`t wait for the full moon. haha might give the nurses a bit of a shock tho eh? I just had 6 weeks in hosp recently and I can imagine what you are going thru but hey this time will pass and you will come thru. We`re all rooting for ya Big Hug x ps whats the food like in there? I was lucky I was being fed thru an NG tube so I couldnt taste a thing.haha Always look on the bright side of life as the song goes......

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Don't give up, keep fighting this! Love and godbless xx :)

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Hi,

Thinking about you in New York. Hope your treatment is going well. Just wanted to add my voice to the many well wishers. Like so many others, I will be keeping you in my heart, wishing you strength and better health.

LW

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Thnx everyone...

My treatment starts on Thursday.

Wish me luck.

and FYI- I am male....

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hello , so sorry to hear of your terrible flare nazia, i will say a prayer for you and send you a spare spoon for extra strength. thinking of you x

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Hiya Nazia, really inspirational to read your story and see the outpouring of support ... this online family is truely amazing! None of us have to feel alone and isolated any more.

You are an unbelievably strong person ... sick people are not weak. We are the strongest "survivors" !!! I wish you much love, hugs and a steady recovery. Ur family sound very supportive too so lean on them. Youth is on your side & laughter is the key. Prayers & thoughts are with you, Ellie xXx

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Thnx. We will trudge on....

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