I have a hospital appointment on Monday to find out more information.
I was been tested for a recent miscarriage and this was one of the test they was testing for. When I found out the results i started to do my own research and was very surprised when I started to see most off the symptoms, I have been getting a lot of back pain, feel tried all time and I have a skin rash. The back pain have been so painfully.
I had been to A&E the week before with the amount of pain I was in and they sent me home with pain killers.
Am a little worried but I have a great support network around me.
Is there anything I can do to help myself?
Written by
Joanne1427
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Hello. Sorry to hear about your diagnosis (but sometimes it's good to have a label, right?).
I was in a similar situation recently and faced a long wait for a referral, so went to a private consult at the London Bridge Lupus Clinic (about £230) where they reviewed all my blood tests (pretty conclusive) and wrote a prescription for hydroxy and advised me to go on a prednisolone taper too, which I did. They also advised me to have other tests, which my GP did some of. I then got referred to Guys.
It was a big shock to be diagnosed with this as I had no idea about it. Once I started to read some of the sites it makes you relate to symptoms and makes you question why wasn't it picked up before... I do feel a little mad and worried as I don't know how bad I have it yet.
We have lost 4 babies due to this, and if It wasn't for me pushing at my GP for more test to find out why I don't think I would of found out.
Am hoping on Monday I might have more information.
Totally sympathise and losing four pregnancies is terribly traumatic (and I've had experience of this too but then got lucky after 6 years).
The failure to diagnose is a very common story on here I've seen. You present with an array of symptoms that may be autoimmune and they don't test you for them. And it just gets worse until someone thinks to do it. By that time, for many, damage has been done. And then most of us lack the energy to do any complaining. Sigh.
Welcome to the forum , lupus uk have a lot of leaflets and info about coping with the illness you may find helpful. The website is good to look at. It must be quite a shock to get this diagnosis so lots of TLC and time needed to process it so be kind to yourself. Good luck for Monday, you'll learn lots more and hopefully will start treatment. Let us know how you get on and keep posting. X
This is a great site with lots of friendly & helpful advice. Welcome.
Really, really, sorry to hear that you have lost 4 babies. I know there are others here who have gone on to have successful pregnancies once their Lupus is under control.
It sounds like you are doing the right things. Keep a list of the symptoms & photograph any rashes or other visible signs. My advice is that if something seems wrong or unusual it probably is.
My tip would be not to get too hung up on getting a "definitive" diagnosis and sub-diagnoses. My impression is that very few people get a single diagnosis at the outset and then keep it from then on! So long as you are confident in the general direction that your medics are taking, that may be all you can expect, at least at first, and in any case, the primary treatments are often the same regardless.
My other "self help" recommendation would be to stay active on this forum. For me, it has made a huge difference to be in touch with people who understand the complexities of a range of conditions that few lay people understand - especially when it involves long periods of uncertainty and worry. x
Hi Joanne, I'm so sorry for your loss. But at least they have got conclusive testing to go on. I hope you don't give up. I was a OB triage nurse for many years and with treatment and close monitoring we had patients with lupus have successful pregnancies. It is hard to wrap your head around this diagnosis. It takes a while to sink in and realize what it means for your life. Everyone is different in this journey too, so my struggles may be different from yours and yours from the next person. I would say take it one day at a time. Keep a list of your symptoms, be good to yourself and rest when you need to. You will get it all figured out. This forum is very helpful. Keep us informed on how you are doing. Xo Nan
I am so sorry for your losses. I also had multiple miscarriages...i thankfully was able to have a successful pregnancy in the middle that gave me my beautiful son. Sending big hugs to you.
You are smart to gather questions. I would definitely inquire about anti phospholipids....many of us with lupus are positive for these antibodies. They cause "sticky blood". I take a low dose aspirin and when I went through fertility I was on lovanex for it.
Usually when recurrent losses they look for causes and one major one can be Antiphospholipid syndrome also known as Hughes. One of the antibodies for this is called the lupus anticoagulant.
The name is a bit of a misnomer as it was originally found In People with lupus but that is found in people without lupus too. So people get confused and feel they have lupus, whereas they actually have APS.
When you go back ask them to clarify exactly what test and antibodies they are talking about. Also there is a forum here called the sticky blood Hughes syndrome. Which may be beneficial to join as well while you are waiting formal diagnosis.
Hope your appointment goes well, here is some info.
Welcome to the community forum. I hope that you find this a useful place for information and support. If you would like 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....
There are some things that you can do to help yourself. Part of the management of lupus is about avoiding known triggers for flares. These can include exposure to UV light, physical and emotional stress and viruses. It is important to keep a healthy, balanced diet and maintain regular physical activity. You can find loads of self-management tips in our series of blog articles at lupusuk.org.uk/category/blog/
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