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Discussion Starter · #1 ·
Hello All
Having one of those days, when i can not get my head around this ! .Will i always feel like this ? I have been flaring on and off for a year now, and as you may already know on lots of meds,even though i have had inprovement , will i ever be symptom free ? when do you know this is as good as your going to get ? My hospital doctor said my lupus may push its way through the azathioprine if it does they will try somethig else. so even though i am feeling better , but with flares will they class that as not working ? i hope this is making sense,also i am under remy nurse, she is no help at all, and blames all my symptoms on infections!!!! thanks for taking the time to read and any replies to this
regards
june:worried:
 

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Hi June,

Sorry your feeling down! Can you phone your specialist and let him know how your feeling!

Not sure but I would assume the Rhuemi Nurse is there for extra support and the basic maintenance of Lupus and should not be making assumptions about your Lupus symptoms. I would expect her to pass on info to your specialist and not make descisions about your illness without the expert specialist advice!

Perhaps I'm wrong - probably am! I get increased flares along side viruses!

I would try to get to speak to your specialist though!

Love Lesley
 

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Hi June,

I have been asking myself that very same question a lot recently. Unfortunately no-one has the answer but it's not nice to be asking yourself that question.

I have to remind myself that I was lucky enough to have a two year remission. So, I could be all bright and bubbly and say, it'll happen again but I don't always feel bright and bubbly and sometimes wonder if it will.

I think it's ok to feel that way at times. We wouldn't be very normal if we didn't get down about this from time to time.

When I get like that, I know I'll bounce back soon enough. I hope that it's the same for you,

In the meantime, I'll send loads of strengthening hugs and some lovely chocolate :hug:

Katharine
 

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I have the infection problem too

Lupus is fine. not misbehaving and I am NOT on plaquenil, but infections are my nemesis. I woke up yesterday to another chest infection, luckily I had antibiotics in storage. Of course I ache etc and have other complaints that are Lupus related including a great rash on one elbow and down the lower arm, but Lupus blood tests are fine. Hate to think what ESR has been though, I did not ask last trip in hospital, will ask when I go back onappointment next week and no doubt more blood tests.
Yes viruses will cause flare ups.
 

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Hi June

Just wanted to try to offer a few words of support, but I have no real answers.

I was particularly unwell up to a few months back and am grateful for the relief I have had so far. Medication did help me. I understand that I may or may not continue the same way, so I just keep my fingers crossed, but if I do become unwell I try to remember that the drugs are helping now, so there is a good chance any future/different ones will help too. I also try to remeber that a lot fo people on this site are at the poorly end of the scale - that here are many more out there whose symptoms are under control. So there is a lot of hope!

It is truly miserable being in pain / poorly and difficult to find a silver lining sometimes - I am sorry. Sending you hugs and hoping for the best.

:love:
 

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For over a year I thought I would never again be able to think straight. With a change in medication I know that I am now - if not thinking on my old level - at least able to do daily tasks and even my work (if it were not for the constant fatigue). So improvement is always possible, it just takes time.

I know I was talking to a friend about going on disability and said that I had this tiny hope in me that I would be able to exercise and do the exact right diet and get everything squared away so I could after a year or so return to week. He replied that it would just put me back in the same spot I was in now but I told him to be quiet because I needed that hope. And I think we are all in that position. We have to find a way to have that hope that things will get better.
 

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((((((((((june)))))))))))

I truly empathise :hug: I could have wrote your post myself!!

I feel exactly the same at the moment & I'm really trying sooooo hard to stay positive & cheeful :sad: I have also been on azathioprine a year now & although I'm a lot better than I was, I'm still not as good as I expected to be :sad:....I don't expect remission,just a run of feeling better than I have been etc okay maybe I am expecting too much :rolleyes: :) I'm just feeling a bit sorry for myself at the moment because I have a sore chest & ribs as well as feeling very fatigued & the normal joint pain! and I feel so guilty for moaning because there are so many members here a lot worse than me!

anyway I'm sorry to ramble on about myself june :blush::blush: I just wanted to let you know you're not alone..let's just hope we all have better days soon! and pray that this is NOT as good as it gets :wink2: :)
thank goodnes we all have each other :)

sending you big,healing hugs june :hug:
hang in there..love karen x
 

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Discussion Starter · #9 ·
Thanks Karen,
I think we are the same, i remember us chatting lots of times before. The thing is i dont want to seem a pain, when asking doctors, nurses, ect questions they cant answer, just seems to be draggng on!! i am sorry your still in the same boat with me !! Chin up and take care will keep you posted
love
june:wink2:
 

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Hi June, just sending hugs and support your way. I can't tell you what the future holds. .... thank goodness! I'm not sure any of us really wants to know, :lol:. But I think it's safe to assume that there will be good times and not so good times. Take care of yourself and try to find some comfortable spot in the world where you can hunker down and wait for the good times to come around again.

Hugs,
Sunny
 
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