Disease progression??!! Let's share our experiences, it might be helpful for all to know what to expect in the future!

I am 37 with Lupus. Doctors never told me whether it is mild or severe, cutaneous or not, and how it will evolve but i really want to know…

Every time an ulcer or a symptom occurs, i am full of fears of how might this might evolve in the future…

For example now, again with my spring flare, i had totally different symptoms from the previous years: while previous years were full of photosensitivity, difficulty to digest, some very localised and minor arthritis, general discomfort and anxiety and mouth ulcers, this year i have totally different symptoms: they concern my veins and vessels as well as my tendons, bursas and joints.

For the first time i am "crunching" all over, my knees, my elbow, my wrist, they produce this annoying noise. The skin next to my joints is as if it is empty (i guess bursitis) and my bones look as if they are popping out. I have difficulties to walk for more than 10 mins and have difficulties when using my hands. I have also signs of bad circulation: vessels all over my feet seem to burst, i had sudden and severe pains in my leg-veins and i am full of some white circular bumps, especially in the legs. However, i have much less photosensitivity and digestive issues.

What does this mean? how will the disease progress? will i need to replace joints with a surgery in some years' time or sooner or is it something that will disappear soon?

I would be happy to find out your stories about disease' progression, change of its characteristics with time as there is limited information on that over the internet and limited research in google scholar.

(Btw, i got lupus when i was 27 - had a wonderful remission period of 3 years - it was when i fell deeply in love with the most important person in my life, my partner - i was so happy, i could fly! i wish i could fall in love again with him from the beginning!)

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  • Hi

    I am in the same boat and I'm desperate for answers on how this disease progresses and what my outcome is. My symptoms started 10 years ago, I had this period of really bad joint pain and was referred to rheumatoid specialist who at the time said I had a very borderline case of syrgion (think I've spelt it wrong) disease and was given anti inflammatory and that's it, nothing else was explained.

    The symptom disappeared and even through I had periods of extreme tiredness I put it down to having a low blood iron count. I was never monitored and just left alone.

    May 2014 was when things went peared shaped, when I started to notice extreme swelling in my anckles, pains in my joints and difficulty with my breathing. I went to A&E and was admitted to hospital when they final diagnosed lupus nephritis, resulting in kidney damage.

    I've under gone 6 sessions of chemotherapy using cyclophosphimide, on 40mg of prednisone and this has not worked so undergoing another 6 sessions.

    But I have felt worse now then I ever did before, up to now I never was photosensitive but now as soon as I go out my skin feels like it's on fire, my eyes are constantly blood shot, sore and painful and they look like they have a ulcer in them. I have high blood pressure which I've never had before

    but when ever I have a appointment with my consultant nothing is explained poperly or how this disease will effect your life or what you can do to help or if there are any alternatives.

    they send you home with a bag full of pill, tell you to keep an eye on this in case it off sets this and that's all.

    I just want to know how bad will it get, when people talk about flare ups what do they mean. when my joints are hurting and I'm having problem with my breathing is that I flare up.

    I just want my life back, be able to get back to work full time, be able to go to the gym and not be sitting at home looking at four walls cus its so painfull to go out in the sun

    ajanjua x

  • Hi Ajanjua,

    i can understand your frustration…

    I obtained severe photosensitivity a year back and while i was about to take a bag of cortisone pills (as per my doctors' advice), i thought of trying homeopathy (although i did not quit from plaque nil). The situation with photosensitivity was so bad that i couldn't stand the sun for more than a minute, i was hiding in the dark all summer long and had even problems with the lights in my house. After 2 weeks of homeopathy this photosensitivity decreased dramatically! I could again go out but of course with caution (no tanning or extreme exposure). However, it was a huge step for me. I am not advising homeopathy for everyone here, but i am just writing down my experience (also, homeopaths differ from each other in terms of their ability to recommend the right pill). Anyway, this year, my annual flare up is different: no photosensitivity but a wealth of other symptoms especially with joints and veins - i am not sure what caused this because this year has not been a very stressful year for me. However, there are two elements that might have caused it:

    1. i quit plaquenil as per my homeopath's advice - he doesn't want to hear of any pills such as plaquenil and much more corticosteroids which in his opinion bring worst results in the long run even if they provide you with a short term relief)

    2. i leave in the uk the past 12 months and it might be that the climate is not helping a lot (i originally come from Greece) - humidity, precipitation and strong winds which according to academic research are likely to worsen your situation. Also, in Greece food is generally more natural while in the uk many foods are processed.

    Anyway, now i am back on plaquenil and considering moving back to Greece.

    I also found helpful to have sessions of reflexology, acupuncture and massage. Also, meditation, stress avoidance, positive thinking and pilates (when i can stand on my feet).

    It is also important to find a doctor who you trust, who can explain as much as possible, so i keep searching for that.

    We all live and hope to get over it but it seems pretty hard for most of us…At least there are sites such as this one which help us express ourselves, find people who fully understand us and get valuable information.

    However, the topic of disease progression is still a mystery to me. Ok, there is no treatment to this awful disease but is there any way to find out roughly what to expect and why?

    I guess, only through stories others one can understand a bit more about evolution, progress and crucial signs along the way of this terrible disease. Unfortunately the doctors i have seen (although they have an experience with at least hundreds of patients, and, thus, a good statistical sample, will not provide you with this valuable information….mine said when i was diagnosed: god be with you! this was the only information i got about my future, prognosis, progression etc)…

    I wish you luck with everything and above all keep looking for a good doctor.

    xx

  • I am also confused about lupus and find it hard to manage symptoms of the disease and side effects from the treatments, i have mild sle, whatever that means and have taken hydro for just over a year, i feel i always have lupus and have a permanent nose rash and am not experiencing flares that come and go. i manage the fatigue and the joint and muscle pain by resting and know if i don't plan every detail of my day i'll struggle, i own and live in a pub, the hours are very long and it's hard work, i also employ people which really can set the stress off. i don't feel confidence with the dr's or there willingness to throw more pills at me and have really had my fill of them (also hypo thyroid and take tamoxifen for 2nd lot of breast cancer) I do visit a very understanding oestopath if my pains persist. I have already stopped wheat and diary and try to eat an organic mediterranean/paleo diet, still feel crap most days. so my next step today is i have decided to take a break from hydro and tamoxifen and support my body with vitamins/nutrition supplements to see if symptoms get any better.

    worked as a chef for ever and gave it up last year realising i really needed to look after my own health as i have to live with it! didn't realise the influence the strip lights had on me until i got out the kitchen. still do the gardening just in long sleeves and a hat. am nervous of the hot weather and hot flushes but fed up with feeling freeezing cold and being purple all the time.

    i think alot is down to how we progress, never thought about how the illness might progress. i'm looking to stop it in it's tracks (terrified of getting another autoimmune label)

    take care x

  • I don't think you will find any rule book about disease progression. We are all individuals, so are our diseases. Lifestyle may well affect how the disease behaves and how able your body is to withstand it. Hormones, stress, illness etc can all contribute - I was lucky enough to stop work at 35 when and the reduction in my stress levels has undoubtedly made things more manageable.

    As a general rule, Lupus does not cause irreversible joint damage - I have had bad flares with joint pain and swelling for 25 years and my joints are as good as anyone else's. Joint replacement isn't particularly likely.

    Try not to worry. C x

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