Newbe

[Deirdrequigley64]

Hi,I'm a 51 year old woman who has suffered over twenty years with pain,chronic fatigue etc, I be just been diagnosed with sjogrens and lupas and I still don't know what kind,at the minute I'm just on painkillers and muti vitamins,but it's the b12 injections that are really helping me,it's proving very difficult to comes to terms with this,also I've had very little support from my family. What I would like to know is how much worse does this get and does it cause early death?x

[Kate16]

Hi Deirdre, im sorry to hear youre so unwell. Im a 'newby' on the forum too and im undiagnosed atm and so a bit of a novice but didnt want to leave your post unanswered.

I have severe m.e./cfs and a recent strong positive ana test. As far as i can see Lupus can affect many different parts of the body which i suppose then determines the illness' path and how it will affect you long term. Also, a bit like cfs, Lupus seems to affect people differently so i suppose try not to worry about other peoples stories and focus only on yours. Is your Rheumatologist looking into what kind of Lupus you have? Try not not to worry about the 'what ifs' until you find out some more facts. (Easier said than done, i know, ive been a wreck all month!)

This website has great downloadable info booklets.

Ive heard others with fatigue having success with vit b12 injections too. Im glad something is helping.

Sorry i cant be more helpful. My brain fog is terrible today- cant think straight.

Best wishes though, Kate x

[What-up]

I agree with Kate. Before you even start thinking that way you need to make sure what kind of lupus you have. I have had it for 35 years and have some stories to tell but not yet. Let us know what you find out. Hopefully at some point you will have the support of family and friends!

[puffyface]

There are lots of medicines you can take which will massively improve your fatigue,pain,brain fog and lots of other symptoms. Just keep a record of all of your symptoms and make sure that you tell your rheumy so that he has all the info to treat you. Just try not to worry too much as stress seems to make it all much worse. Good luck and use this site to ask questions. The members are really helpfulxx

[Circles]

Hi Dierdre, I am a newbie to all of this too.I am on plaquenil for Lupus which has made a huge difference for me,so far.It has definitely dampened down things.It is also helping with the sjogrens dryness.I try not to worry too much about what might happen in the future. I have been dealing with all of this for so many years not knowing anything about it.Now I have learned so much from Lupus UK and all the lovely people on here I can cope so much better.Its hard not to worry I know but here is where you will get the best information. I am from Ireland too.Cork.Take care.xxx Circles aka Martina.

[diane1428]

Hi Diedre

Lupus takes so many different forms that it is impossible to say what it will do next. I was diagnosed nearly two years ago with sle and aps. Apparently I've had it since I was eighteen. I'm now sixty two.

When I was told the diagnosis I was finally happy that I knew what it was. Through the years of doctors dismissing the intense pain,disorientation,migraines,miscarriages finally I had some hope of being able to come to terms that I wasn't a hypercondriac .

I now don't look at it as an illness and get quite cross when my husband refers to it as such. For me it is a condition that I CAN and Will manage. I've had it this long so intend to enjoy my old age for many years.

Try not to worry only makes matters worse. You will get treatment and it will help.

You have this forum to come back to. Sometimes it makes you cry what people are going thus but it also will make you laugh.

We are nearly at the end of 3015. Make sure you enjoy 2016.

Love to you all and a GREAT New Year.

[lupie46]

Hello 😊 sorry you are ill. I was diagnosed with Systemic Lupus Erythematosus in 2009. It was a relief to have a name for the way I felt. Don't think ahead. Take each day as it comes. I have a lovely partner who tries her best to understand. She still says things like "if you exercised a bit more you'd feel energised". Use places like this to get that extra reassurance. Lupus UK are the best for accurate information. Good luck and keep us informed.

[Deirdrequigley64 in reply to lupie46]

How do you find out ,what kind of lupas you have and what's the difference xxhugs

[lupie46 in reply to Deirdrequigley64]

The type is based on symptoms. Some types stick to the skin only, like Discoid and sub cutaneous lupus. Lupus nephritis affects the kidneys. Systemic affects any and all parts of your body at different times, systemic meaning all over basically. Your specialist will help with naming yours.

[Hidden]

Medical sources I've read say that with drug therapy lupus patients have an average lifespan however when you figure that their cancer risk is increased due to Epstein Barr virus infection and some drugs (Cellcept can cause brain cancer) then I would think this is somewhat optimistic. I've attended a lupus group and one member who had lupus for 20+ years needed a kidney transplant despite the drug therapy.

[mariearmstrong]

get your kidneys tests done regularly. you DONT want to loose those. and consider the Plaquenil long term drug for lupus to stave off the flares and general inflammation that will hurt your organs over time. it is progressive. your lifestyle will dictate a lot of how aggressive. stress is not good for lupus, so if you have any baggage, now is the time to get rid of it. if you don't have a good diet or exercise plan, now is the time to start looking at that and correcting it. I found lots of vitamins just fed the immune system, which directly feeds the lupus energy. until you are on the drugs to dumb down the lupus you may find supplements not doing as much as they could be

[Cookiecutter76]

Hi! I'm 39 and have been ill with something like lupus since I was 12 but was only diagnosed last year. I think it's a blessing to have been ill for so long without Dr intervention as it's given me the chance to learn how to live with the disease without medication and what's normal for my body. Since the Drs have been involved I've become very ill due to sensitivities to the medications and my first rheumatologist tried to make out it was a lupus flare and not the meds! Luckily I knew better and am gradually recovering now I've stopped the medications. I'm lucky not to have major organ involvement at the moment though and so have the luxury of being off meds without being too ill. I've found a better rheumatologist now and he keeps an eye on things getting worse. The thing with lupus is it's very unpredictable and the doctors don't understand it that well so no one can say whether it'll get worse or not. It could, but maybe not and there are medications and lifestyle changes that often help. The main thing is you're diagnosed so someone should be keeping an eye on things flaring.

Hopefully the medications will help you, but always remember that you know more about your body than they do and don't be afraid to challenge them or ask for a second opinion if you think they're wrong.

Best wishes!

x

[Paul_Howard Partner LUPUS UK]

Hi Deirdrequigley64,

As many of the other members have said, some of your questions will depend upon what type of lupus you may have been diagnosed with. Who diagnosed you, was it your GP or a consultant? Do you have another appointment coming up where you could discuss it in more depth with them?

It is important to bear in mind that lupus is a very variable condition that affects everybody differently. It is also unpredictable, so giving an accurate prognosis can be difficult. This will be likely to depend upon the type of lupus you have, the symptoms you have experienced (and their severity) and how well you respond to treatment.

If you would like more information about lupus we have a free pack that you can request or download at lupusuk.org.uk/contact-us/