Does it get worse?

[cathylou]

is lupus an illness that generally worsens over time? I know there will be exceptions but i mean as a general rule.

[andi43]

I have had lupus for 12 years and at 47 and going through the menopause I do believe my symptoms have improved. The rheaumatologist said this might happen however got fibromyalgia through stress so instead of flares I live with this daily. Hope it helps x

[Shorthouse in reply to andi43]

Menopause triggerd mine so we are all different x glad you are better x

[Paul_Howard Partner LUPUS UK]

Hi cathylou ,

I think with lupus there isn't really such a thing as a general rule. It really does present and behave differently in everyone. What I can say is that outcomes have definitely improved over the last few decades, not just because more treatments have become available, but because doctors know how to use the treatments better! In the past the treatment of lupus generally involved large doses of steroids which over time would cause lots of lasting side effects which could deteriorate overall health over time - this is much less likely to happen now that consultants are very careful in prescribing steroids.

[cathylou in reply to Paul_Howard]

I just wish i could know what to expect a little bit.

[Paul_Howard Partner LUPUS UK in reply to cathylou]

Have you discussed your prognosis with your consultant? Lupus is unpredictable, but they would be the best equipped to say how they think you may get on based on your presentation and disease activity.

[cathylou in reply to Paul_Howard]

No, because i had no obvious signs of inflammation at my appointment aside from not being able to move my neck he didn't know whether to diagnose lupus or undifferentiated connective tissue disease.

I thought my GP referred me about arthritis so i was taken back. Mixed in I had terrible brain fog and didn't answer his questions very well. He ordered a tonne of bloods and an MRI and referred me to a neurologist - facial palsy.

i lost my job a week later due to my issues/potential diagnosis so i rang to see if any blood results were in.

i said 'i don't even know what's wrong with me and I'm sleeping my life away' and he replied ' well you tested positive for lupus so its mild lupus'. He then said he'd leave a prescription with his secretary to collect and to read the leaflet carefully and get an eye test. It was for hydroxy. That was it! My MRI is next week so I'm hoping he'll want to see me when he gets the results of that.

While at hospital for uti the dr there commented one of the blood results was abnormal - beta something? But he didn't know what it was for! I googled it and i think it's to do with aps. I had to take aspirin through 2 pregnancies so it woukd make sense! If i have it i need to make some huge lifestyle changes but don't want to stress myself too much if its not!

[cathylou in reply to cathylou]

at my appointment he said the MRI was to look for lesions - surely if that is his suspicion or is actually the case it can't be mild lupus?

[Paul_Howard Partner LUPUS UK in reply to cathylou]

Hi cathylou ,

You are at a very early stage of diagnosis and I think you are right that your doctor will want to see you again once they have all the test results back. Once they have this information they will hopefully be able to provide a robust diagnosis and answer any questions you have about your prognosis for the future.

If you need any advice and tips for preparing and getting the most out of your consultation, please take a look at our articler here - lupusuk.org.uk/getting-the-...

[Dalilatm]

Hi!! Hope you're well!

I've officially had lupus for almost 20 years. From my point of view there's no straight answer to this.

At the beginning it was very difficult, agressive lupus, I dind't understand my body nor my lupus at all, all treatments were new for me so I didn't know how my body would react. So those were difficult years. Nowadays, I know my lupus so well, I've learnt so much about it and my body! This is essential. If you want to have a better quality of life, learn how your body reacts to pills, sun, food, drinks, walks, rest, sadness, happiness (emotions), etc. Your whole lifestyle... Start checking what works for you. You can even keep a journal. On the other side, more organs have been involved through time, more parts of my body affected. And I don't have the same energy than before, no matter how much I try. The good news is that I can recognise when I'm starting to have a flare and I can go straight to the doctor, and I already know what works for me and what doesn't.

You can also feel fed up with the new lupus lifestyle and care. That's normal. But, I insist, get to know yourself and your lupus!

x

[nita57 in reply to Dalilatm]

I like what you say I have really studied chemicals added stuff sweeteners they a no no for sure. I plod when I can and rest when I can't do much. Its a way of life I think what can I do .. Not what can't I do!!!!! Same with foods etc. Its a case of just plodding the best way you can x