Health

Lupus – the incurable immune system illness

Lupus is an incurable immune system illness, mainly suffered by females and it can affect any part of the body.

Lupus affects over 5,000,000 people worldwide and it can be confused with other conditions as our contributor for today explains.

The symptoms of Lupus are:

  • Joint and muscle pain
  • Extreme tiredness
  • Rashes
  • Depression
  • Anaemia
  • Feverishness
  • Headaches
  • Possible hair loss
  • Mouth ulcers

Another issue that Lupus can be responsible for is, is sadly – a miscarriage. That doesn’t mean to say that if you have Lupus you will struggle to have a baby as revealed by my guest.

Melanie

I would like to introduce the lovely Melanie. Melanie is in her 40s, leads a normal life and has a lovely family.

Her symptoms of Lupus began when she was 27 years old and she is going to answer some questions. We hope you find this information useful.

Melanie, how old were you when you developed Lupus and what were your symptoms?

I was 27 years old when I started to have symptoms. At first, I was diagnosed with Rheumatoid Arthritis because the symptoms are very similar.

How has it affected your day-to-day life?

I think it’s best to break down my condition into two phases.

In the early days, I was getting crippling joint pain in my knees and hands. Some nights I would wake up in tears because the pain was so intense. This was when I was referred to a Rheumatologist and then diagnosed with Rheumatoid Arthritis. Some days even doing the simplest of tasks was painful. I got quite depressed as I thought this was a condition for the elderly, not a woman in her twenties.

During my pregnancy, when I was 29, the symptoms stopped. I was told to expect this. I had been put onto a different medication that wouldn’t harm my baby. I had some complications during labour and this is when Lupus anticoagulant was picked up in the blood tests they performed.

When I returned to my Rheumatologist, he told me that sometimes one illness can mutate to another. Or I had been misdiagnosed in the first place.

Is Lupus and Rheumatoid Arthritis hereditary?

I’m not aware that it is. It hasn’t been mentioned to me.

What medication do you need to take and are there side effects?

When I was diagnosed with Rheumatoid Arthritis, I was put onto Methotrexate and a course of steroids. This eased the symptoms, to begin with, but the side effects can be quite nasty. For Lupus, I am on Hydroxychloroquine. It’s actually an anti-malarial. There are rare side effects and I have to have regular eye tests to rule out any eye damage but luckily I’m not suffering any side effects. I’ve been on this drug for 15 years now.

Did the Lupus cause problems when you wanted to have a baby?

My doctor said because I was on Methotrexate my body needed to be clear of the drug for 3 months before I should plan to conceive. I managed to conceive 5 months after stopping Methotrexate.

What about the future, do you know if there a better medication on the horizon?

I’m not sure about my future or new medication available. Hydroxychloroquine is working well for me so far.

Did you try alternative remedies for the illness?

I tried alternative remedies but they didn’t work for me.

Has having Lupus affected you mentally?

In the early days, it did affect me mentally. I was very upset and tearful about everything. I was fearful for my future and worried about losing my mobility and living in constant pain. Now I have a much brighter outlook. My Lupus doesn’t affect my day to day living and I don’t really think about it. I’m careful not to read into my condition.

I honestly believe that a positive mental attitude has worked in my favour and as naive as it may sound, ignorance is bliss.

I have been for my 6 monthly checkups and the consultant is really happy with my progress and my checkups are annual now.

Does exercise help you?

Exercise had been really beneficial. It’s things like gardening which affect me and slow me down the following day.

Does your diet make a difference?

My diet doesn’t make any difference.

What tips and advice would you give someone who has just been diagnosed with Lupus?

Don’t let your condition define you. Take the advice of your consultant and take your medicine regularly. Don’t be afraid to exercise and get on with your life.

Thank you so much Melanie for sharing your story.

If you want to find out more about Lupus, visit LUPUS UK.

Do you have Lupus? Would you like to tell us your story?

Contact us today, we’d love to hear from you.

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** The content on this site should not be used as medical advice, we are giving our readers information and insights. If you are concerned about your health or need medical advice please see your doctor. If you are struggling with any issues please talk to someone – don’t suffer in silence. **

 

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