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LUPUS UK
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Just been told that I have tested positive to S.L.E.

I have tested positive to Lupus recently and am feeling very nervous. It's hard at home because I feel so tired and exhausted and talking about my symptoms all the time to family members tires them as well. Glad I have joined this group where I can write about my concerns and read a lot of other people's experience as well. I want to know what happens once I test positive to lupus. I am told that I will have to see a rhumotologist soon but how soon does that appointment has to be done. Off lately I am getting very dry lips and I do feel very tired and exhausted all the time. Don't know what I am in for but I am very scared and worried at moment😒

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I've just joined the forum too. I think there's lots of support here to help you cope. Hopefully once rheumatology receive your referral, which I assume your ZgP will send off promptly (you can always ask you surgery if it's been done), you should receive a 'ring and book' letter, which you make an appointment through (some areas may just send the appointment out direct to you). Either way, the GP will be looking for confirmation of the diagnosis, which a rheumatologist will do, and hopefully that will be weeks rather than months.

Depending on your symptoms and if it's affecting any vital organs will dictate any medication offered. I was put on hydroxochloroquine (an antimalarial that helps with joint and muscle pains and fatigue) years ago, but have now had to start an immunosuppressive medication and steroids.

Lupus uk website is fantastic, so really have a good read.

Poor you, but at least you know what's causing your problems: Better the devil you know! Good luck. I'm sure others will post too. Keep talking, it'll help you get to grips with this. Try not to be scared. It's challenging for many, but not insurmountable.

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Thank you Rowan for getting back. i really appreciate the fact that I can talk to someone about it without sounding like I have gone nuts. I am seeing my GP today and as he gave me my diognosis of lupus over the phone. From what I understand from you is that a rheumatologist will confirm whether I have lupus or not.... but my blood test is saying that I have tested positive to S.L.E. Does the rheumatologist do some further tests to confirm lupus? Did the antimalarial medicine help with your fatigue and tiredness.? Did it have any side effects? How long have you had lupus for? I agree this is a great site as one can connect with people. Hoping I will have a clearer picture when we see my GP today. .

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It sounds like it's all in hand. The rheumatologist may want to do some more tests just in case your symptoms suggest any additional or alternative diagnosis. These autoimmune diseases seem tricky to diagnose and sometimes it can be a mixed picture.

I've been ill since my 20's but went through the neurology team with Neuro stuff happening and rheumatology for the last 19 years. Things took a turn last year, so my actual diagnosis came then. I was put on hydroxochloroquine in 2005. I think it's different for everyone. Hydroxochloroquine did help within 4 wks with good results at three months. Taking it with food minimised bowel rush issues! It held things at bay for a long time.

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Just got back from GP. He has referred me to a rheumatologist but said that it could be an incidental finding. The GP himself was not sure what he was talking and said i did not have any skin symptoms but showed other signs which may be due to lupus. I insisted to see a rheumatologist because I don't want to take chances. What I did not like about my GP was on one hand he was saying it's serious and on the other hand he was saying go on and live your life!! Am more confused now and hopefully will get some answers when I see a rheumatologist 😥.

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Hi Alka,

Reading your post took me back 8 years to when I first received the diagnosis of Lupus and how afraid I was and all the questions I had. I found this site right away even though I live in the United States, this was a life line for me back at that time. It was the only place I found people who knew and understood what I was going through.

The Rheumatologist will probably confirm the blood work and diagnoses but they are the specialist that help you control your disease. When you have Lupus or any connective tissue disease they are your go to person. These days many people are put on hydroxychloroquine and the good news is that it is usually well tolerated and has few side effects for most people, it also seems to help many control their disease. I have been on it for 8 years and am now well controlled though not completely symptom free, I am very thankful for this medication but the down side is it can take awhile for the medication to work. I was given steroid shots for 6 months or longer after starting hydroxychloroquine.

I know how it is to have friends and family that do not understand and seem to get tired of us talking about being tired and not feeling well but you have found a wonderful place with many members willing to listen and share their experiences.

I try to come on this site as often as I can to help others out that maybe new and afraid and let them know while it is not always a pleasant journey and there is no cure at this time, there are great treatment options and many are having their disease controlled quite well. I have learned to work closely with my doctors and also the things I can do for myself such as a healthy diet, plenty of rest, appropriate exercise and learning healthy ways to handle stress have all been helpful.

You are not alone in this. I also have very dry skin, lips and sometimes eyes and mouth.

Hugs Tammy

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Thank you Tammy. So nice to be able to get so much information and most important of all the assurance that it will be all good. Will love to stay connected and will post here whatever I get to know further. Hugs and love to you all wonderful people out here.

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Hi Alka there's nothing to stress abt the more you stress the worse you'll feel. My appt didn't come for 6months was finally given meds and told to go home was given a leaflet to read that was abt it. My symptoms were tongue swelling headaches the sun fatigue along with fingers and toes hurting. I went to see a herbalist who explained everything in more detail basically your energy levels are around 2hrs you do anything more than that that's when the symptoms kick in I learnt to rest in between work. Was full time work had to drop to part time to get it under control. When you feel a little tired rest half an hour then carry on its about what feels best for you only you can decide. My family was the same it's because you look fine a a on outside but it's the inside they can't see it finally hit them when they saw how bad it can get so now they are very supportive. Take it easy and rest when you can and try not to stress diet is also a big factor. Hope you feel better soon and take care.

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Thanks for all the information. I have understood today that it is a long process to even confirm the diagnosis. I will have to just wait and watch and I do feel that 2 hours is maximum I can work at a stretch. I guess the key is to take more rest breaks in between. Will do that and see how I go. thanks for your support. Appreciate it a lot🙂

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Hi I've been diagnosed with SLE just last Thursday. It took me from last august til now to get a confirmed diagnosis as I also have hypothyroidism so the symptoms overlapped making it difficult to diagnose by rheumatology. I'm awaiting another lung and heart X-ray and have been put on hydroxy.

I've been quite sick for 14 months now and this just feels like another blow. I feel like no one understands and I'm forever moaning about how ill I feel but that's because I feel really dreadful! But this forum is amazing for support. I'm new on here but have been on Thyroid UK for over a year and it's been a huge help.

I'm under rheumy but it's difficult to even get in for my next 3 month appt so keep on at them if your feeling sick and push for your appts. It's taken me 8 months to get treatment which is frustrating but to get a proper diagnosis (and expect lots of blood tests & X-rays) takes time so patience helps.

But least we know what we're dealing with and it's the one thing I've not googled as I don't want to scare myself I'm just going by my symptoms now and hope the new meds help good luck x

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Thanks for the information. My situation is similiar to yours. I have hypothyroidism as well and from August last year to Jan this year the doctors felt it was my thyroid was playing up as my thyroid medicines were increased but now inspite of my thyroid being normal I feel tired and fatigued. Just hoping I find some answers to my fatigue and exhaustion.

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Hey well least we're not alone! I'm totally exhausted and thyroid is still not right my Endo says I've evolving thyroiditis which basically means he can't do anything to prevent it! I've got T3 privately but Endo is supporting me so did begin to feel better then got a Lupus flare so feel battered but I'm supplementing and got so many drugs to take I've got to start using my pill box haha at 43 never thought I'd say that! Have you cut out gluten? I've tried but know I've got to start being stricter with my diet x

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No I have not cut out gluten but will read about it. I am a vegetarian, no meat seafood or fish for me so it kind of makes it difficult for me to cut out carbs but I guess I have to do more research in to it and def do something about my diet. It's great being here and knowing that I am not alone going thru this horrible mess at 43.

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Hi Alka.

Sorry you are having a tough time. It's good that your GP is referring you to a Rhuematologist. GPs don't really know much about lupus and they aren't allowed to diagnose it which is probably why they started being cagey and confused you.

It can take a number of weeks to see a Rhuematologist so make the most of your time by compiling a list of symptoms in bullet points. Usually the first appointment can be overwhelming and you may come out feeling like you didn't get the chance to say anything.

I took the opportunity to think back and when I did I realised how photosensitive I had been for well over 15 years but didn't think anything of what was happening at the time. So things started clicking into place.

Just so you don't build your hopes on the first appointment you probably won't receive an immediate diagnosis from the Rhuematologist, as they will want to do further testing first, although they may start medication.

If you look up ACR criteria for SLE, that is the old criteria that is used for diagnosing SLE (you need 4 of 11 criteria) and now you have the SLICC criteria which is a different way of diagnosing now.

This forum is a great support for people like us. I find that no matter how understanding my family and friends try to be, I can see their patience on some thing wearing thin 😭. The lovely people here have been great.

Try not to worry in the meantime, although it's easier said than done. We are here if you have any more questions.

All the best

L xx 😀

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Thank you for your support🙂

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I could see were you are nervous I was too. I got diagnosed last May. Hang in there take you meds. I will pray for you.

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Hi Alka74,

Welcome to the community forum. If you need more information about lupus we have a free pack which you can request or download from our website at lupusuk.org.uk/request-info...

How quickly you are seen by rheumatology will depend upon the waiting lists at that specific hospital and whether you were given an urgent/emergency referral or not. If you need any tips on preparing for your appointment you may be interested in our blog article here - lupusuk.org.uk/getting-the-...

If you want to learn more about lupus fatigue and get tips for managing it, please take a look at our article here - lupusuk.org.uk/managing-fat...

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