Lupus diagnosis : After 2 and a half years of... - LUPUS UK

LUPUS UK

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Lupus diagnosis

Jmcb123
Jmcb123

After 2 and a half years of feeling like I was going mad with all sorts of strange symptoms I received a definite lupus (SLE) diagnosis last week, prescribed 400mg hydroxychloroquine. Feeling upset and confused about the prospect of living with a disease that will attack my own body and internal organs, looking for any advise or help from those in a similar situation xxx

16 Replies

Hi i know the feeling 2 newly diagnosed thought i was goin in sane & being told by my Gp that it was all in my head hopefully you will get alot of support on here im glad in joined & its been helpfull i know they only words but they are helpfull but at the moment & time we are looking at a miracle we are all in the same boat so your not alone we are all goin through similar experiences just how we & our bodies deals with it tkc xxx

Jmcb123
Jmcb123 in reply to Naz2005

Thank you for your reply Naz2005, I was continually getting told by GP that my symptoms were down to anxiety which I knew they weren’t as I had been 100% healthy until summer 2016. Have you been put on medication and has it helped? My main symptoms are weak and sore muscles, tiredness and a lot of tingling and pins and needles. Recently been having a lot of chest pain too which is a worry. Just trying to carry on being a busy working mum but it’s hard work! Xxx

Naz2005
Naz2005 in reply to Jmcb123

aw bless you its hard with young kids all the best xxx

Welcome Jmcb123

For some of us, this might be the first time we realise that we have an illness that isn't going to disappear for good after a short course of treatment. That's a big adjustment to have to make. But other than that, there's a wide diversity of roads that people travel. Some seem to get over the initial symptoms and have nothing other than minor problems thereafter. Others have a series of ongoing and serious problems. It's impossible to know what your future will hold. At least you are now on course to treat some of the problems you've been struggling with.

This forum is a really good place to share experiences and questions, as it is pretty active, and you can usually find someone with experience that matches your own.

Hope everything goes well x

Jmcb123
Jmcb123 in reply to whisperit

Thank you so much for your reply, very wise words and it is great to speak to others with same condition. Have you had lupus for a while? How do you keep generally if you don’t mind me asking? X

whisperit
whisperit in reply to Jmcb123

As you might know, there are a range of closely related systemic auto-immune conditions. Lupus/SLE is the best known, but lots of people in this group have related diagnoses, like Sjogrens Syndrome, Mixed Connective Tissue Disease etc. I have Undifferentiated Connective Tissue Disease, and when first diagnosed, about 4 years ago, I had significant breathing problems and painful hand and arm joints. These almost completely disappeared after about 4 months of treatment with hydroxychloroquine and steroids. Unfortunately, I've since developed fibromyalgia, myositis and adrenal insufficiency, so my life has changed radically. I've had to take ill health retirement and am now largely housebound. But please don't think I am typical, or that others don't get back to a normal or near-normal life after treatment. One of the things about groups like this is that people who post here tend to do so because they have run into problems - people who get healthy kind of vanish! x

Hi Jmcb123, I was diagnosed with SLE in 2015 after 8 or 18 years of symptoms, the most crushing one being fatigue. Hydroxychloroquine gives me the stranger spectrum of side effects...400mg seems a lot...5mg per kilo of 'lean' (ie optimal) body weight is recommended. Have you had a baseline eye test?

I'm a SACQ - 'serologically active clinically quiescent' - that means my dsDNA goes up and down without much to show in the way of symptoms so far. There seems to be a consensus here that there's always a bit of chuntering going outside flares, some background fatigue, brain fog, rash etc

Keep posting and keep reading...there's lots of very helpful info on the Lupus UK website. xxx

Paul_Howard
Paul_HowardAdministrator

Hi Jmcb123,

Welcome to the LUPUS UK Community Forum. I hope that you'll find this a helpful place for information and support. I'm really pleased to see you've already had some great comments from other members.

If you would like some more information about lupus and LUPUS UK, we have a free pack which you can request or download from our website at lupusuk.org.uk/request-info...

We also have a DVD and booklet which are aimed at people who have been recently diagnosed. You can learn more about these at lupusuk.org.uk/newly-diagno...

If you'd like to learn more about the support available through our charity, a good place to look is towards the end of our article here - lupusuk.org.uk/getting-diag...

If you need anything else, please let me know and I will do my best to be of assistance.

Jmcb123
Jmcb123 in reply to Paul_Howard

Thank so much, definitely helps talking and hearing from people in sane situation, thank you.

Do you know of any suppport groups that meet up in Scotland at all? X

Paul_Howard
Paul_HowardAdministrator in reply to Jmcb123

Yes, there are a few groups that meet regularly in various parts of Scotland. Whereabouts are you based? I'd be happy to provide you with information for your nearest group.

It is a confusing time and a confusing disease. I don’t know if this will be helpful, but I think you should ask your rheumatologist if there is a reason to be optimistic about your future. If, after two and half years, you do not have internal organ involvement, that may be viewed as a good sign. It is unpredictable, of course, but a patient who presents with widespread inflammation and kidney and brain involvement is different from you. The fact that you were not immediately put on steroids makes me think your symptoms are mild. They can also have clues based on lab tests. Again, there is no certainty in an uncertain illness. But do reach out to your doctor for reassurance. My cousin has lupus with episodic lung issues but has never progressed (works full-time) and I have UCTD and and my doctor’s prediction that I would do well has proved correct. I hope you contact your doctor to discuss your concerns. Wishing you well!

Jmcb123
Jmcb123 in reply to KayHimm

Thank you so much KayHimm, that is very reassuring to hear.... I think I was just reading too much and upsetting myself. Feeling a bit more positive now and rheumatologist is arranging for some chest X-rays and heart and kidney tests so hoping that may be re-assuring if they come back ok. I really appreciate your positive response, thank you x

KayHimm
KayHimm in reply to Jmcb123

So glad I was helpful. Remember you and your doctor are a team. Part of the job of your doctor is to get to know you, your fears, your symptoms and help you. Keep us posted. Good luck with your tests. Of course, you were reading « too much. ». Who wouldn’t when diagnosed with a chronic illness? Your doctor will totally understand that. But there is no substitute for the doctor’s perspective.

Jmcb123
Jmcb123 in reply to KayHimm

Thank you, yes, my GP has been really good. Do you take medication if you don’t mind me asking? X

KayHimm
KayHimm in reply to Jmcb123

I am fortunate that I have never had to be on immunosuppression. I take Topamax and Effexor for low level neurological stuff and aspirin. I take salt tablets and have made lifestyle adaptations for autonomic dysfunction. Very glad you have a good GP. And he/she must feel really pleased to have picked up on possible lupus and had it confirmed. Nonetheless, nearly three years is such a long time to not know what is happening. Really hard for you. Thinking of you!

Jmcb123
Jmcb123 in reply to KayHimm

Thank you! Xxx

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