[Vickie Lampkin]

I am 29 and was diagnosed with Lupus after about 2 years of symptoms, unlike many sufferers i did not get the rash, instead my syptoms started with extreme fatigue and joint pain which seemed to spread through the muscles and all over my body, some nights i would feel paralysed from the waste down which caused problems when needing to go to the loo.....

After many random diets of no wheat, dairy, caffine etc the specialist stuck me on steriods without much of an answer to why. Two years later my hair started falling out, i kept getting reoccuring kidney infections and the migranes increased not to mention the flare ups with my joint pain and fatigue. The specialist finally mentioned Lupus, which although was worrying was such a relief that my illness finally had a title.

They want to put me on Methatrexate but have told me that if i want a family i should not go ahead, i am now starting to wonder if i should just go ahead, afterall living a life in pain and a haze so i can have kids one day all seems a bit pointless if i can't have a life to actually have kids if you know what i mean.

The high level of steriods i am currently on have added 2 stone in weight to me in the last month alone, the depression is getting worse and the ability to carry out my job which is one of great power and responsibility is diminishing. I know people reccomend resting when in a flare up but taking time off work really is not an option for me unless i want to get in a huge amount of debt. Friends and family try to understand but they simply can't relate, they think i exagerate or am just a light weight, mum has RA and gets angry when i get depessed, mainly i think as she does understand but copes so well with the RA and can't bare to see me the way she was in the beginnng. I don't see any light ahead just a life of pain, work and sleep. Maybe oneday things will change, who knows.......

 

[Katharine]

Hello Vickie and :welcome:

First and foremost, yes, there is definitely hope!

I am slightly concerned by the "treatment" that you have been offered. Maybe there are some things that you haven't mentioned... But, has your specialist never put you on plaquenil? It's the baseline treatment for lupus and, although it takes a good while to reach full effectiveness, it is a very safe drug - so safe that you can stay on it throughout pregnancy.

Another option that could be considered before trying methotrexate would be imuran which is now also maintained during pregnancy in many cases. Obviously, if people can come off it, docs prefer but it's good to know there's an option.

As I say, I would be very concerned about such long-term steroid treatment without the aim of replacing the steroids with steroid sparing drugs (plaquenil and/or immunosuppressants - including imuran, methotrexate...).

Bye for now and hope you enjoy the site and find plenty of support here

Katharine

 

[Katharine]

Another important thing to realise, and again your specialist (rheumatologist?) should be aware of this, is that your depression might be part of your disease activity. Some of us get depressed as a reaction to what we're going through (and who'd be surprised by that?) while others will actually be depressed due to the disease's effect on the brain itself.

It is sometimes worth considering that the depression may also need treating. It is hard enough to deal with having a chronic disease day in day out without having depression on top. I would certainly discuss this and the options with your GP or specialist (someone you trust and feel comfortable with).

hugs :hug:

Katharine

 

[Kyphi]

Hi Vickie, I was diagnosed in May so relatively new to all of this. I too didnt have the rash that so many people suffer from, however this did develop on my chest when I went into a my first REAL flare. I also felt that there wasnt any hope, I too became very very low. My mother and older sister also have RA and though some symptoms are similar I do think lupus is much more complicated and symptoms are more widespread. So trying to compare the two conditions may not be a idea.

I thought I'd never get better, I thought my life had finished. My children are in their early teens and my husband an I were planning our life all over again as they became more independant. After my diagnosis and the horrible illness that followed I felt my life as I knew it was finished; but it wasnt.

As Katherine said, the first treatment my Rheumatologist put me on was Plaquenil. Fortunately for me it didnt take long to take effect, I started feeling much better and less low. Now he is considering imuran (my GP mentioned methotrexate, but I wasnt happy with that as my mum and sister are on it and I had learned from this forum about Imuran).
Things do get better, but I will say this:- learn from this site. I have the best GP in the world but he didnt have a clue about lupus (I told him about Plaquenil) so dont be afraid to ask questions and if your not happy challenge decisions. As you will find from this forum not everyone gets a great rheumatologist, if your not happy see another one.
Your young with a good life ahead of you. Take it by the scruff of the neck and get what YOU need to live it to the full :lol:
Lots of hope Vikie, look at my sign in name - thats how I felt when I joined - not any more!
Take care x