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Lupus

Lupus

Hi. I was diagnosed with suspected lupus in April. Being confirmed this coming Wednesday. My eyes feel tired all the time. I don't have any get up and go. Aching all over. Yesterday my hand became stiff. Couldn't hardly move two of my fingers. My arms feel like lead weights if raised up for long. I have been getting pins and needles in my hands. I was put on prednisone for a month after my first visit to rheumatologist. I felt like a new woman. After coming off them my symptoms came back. Been so depressed ever since. I wasn't given anything else after the month of steroids. I feel really low and hope I get some joy and help on Wednesday at my appointment.

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Poor you it's very difficult to bear the idea of all this I know. I'm into my 7th year of being diagnosed with a rheumatic disease and it does get easier to accept or become more resigned to at least - and also much easier to self manage/ pace, research and understand once you are properly diagnosed.

Treatments can be very effective too for many.

Best of luck with your coming appointment.

Twitchy

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thank you.

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Welcome to our lovely Support Group. I hope you find this site as welcoming, helpful and supportive as I have. I'm sorry to hear you have been so unwell and currently have no treatment. It's a difficult process to go through. The average diagnosis takes something like 7.5 years. Please let us know how you get on on Wednesday. Can I ask what area you are in? Only lupus UK can help with information re recognised lupus experts, your nearest Centre of Excellence and any Lupus Support groups meeting in your area. Stay in touch. Oh and this site has a very useful search facility. You can search your symptoms etc and previous posts are helpful re preparing for hospital appts etc. Best wishes. Wendy

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Northamptonshire. thank you. I think I have had symptoms for years thinking about it.

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Yes, I know what you mean. I was diagnosed in 2013 but with hindsight the birth of my 3rd child in 2008, 5 years previously kicked my lupus symptoms off. Lupus UK staff will be back in the office tomorrow and I am sure someone will help with specialist in your area. The Lupus UK website has some great information too.

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Hi Wendy, you've said that the average time it takes to diagnose Lupus is approx 7.5 years - I've had 3 blood tests over the last 3 -4 years and they all came back as "normal" but still I'm having symptoms - I'm beginning to think it's all in my head - how should I proceed in the meantime - I don't want to come across as neurotic - but this is driving me to distraction - any advice would be welcome. Warm regards Loraine x

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Hello. Looking back, with hindsight, I'd had Lupus from the birth of my 3rd child and wasn't diagnosed until 5.5 years later. And then the diagnosis was wrong. I hadn't heard of lupus until my initial diagnosis, so was very much in the dark. I have had a lot to learn and still do. I would say, educate yourself as much as possible. Read posts here. Read the info on the Lupus UK website. I ordered some books from them and they helped a lot. Keep a symptom diary. Note all symptoms and how you are feeling every day. Lupus UK can tell you where your nearest lupus uk recognised Rheumatologist is or where their nearest Centre of Excellence is. You can ask your GP to refer you then. If your GP isn't helpful consider seeing another GP at your surgery or changing surgery. If you want more specific advice either post and I will reply, or message me direct. I'm not medically qualified but am happy to help, as are a lot of our lovely members here. Wendy

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Thank you I will x

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thanks.

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I hope you get a clear answer on Wednesday. They can then start you on a course that will suit all your symptoms. Unfortunately that can be the way with steroids. Great when youre on them and then you can slip back unless there is some thing to take over. As has been said check out the info on this site. Let us know how you get on.

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thank you and yes I will let you know. this is a good site with nice informative people who care.

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For me it was hydroxychloraquine that was a break through drug. It took about 12 weeks to work but really helped me. Maybe your rheumatologist will start you.

It's important that you tell them that the steroids worked as this points to an inflammatory process going on of some description.

Let us know how it goes.

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Yes it did say in my last appointment letter that hydroxychloraqui e would be considered. 12 weeks is a long time for something to work. I can't go on like this for another 12 weeks. I hope he may put me on a course of steroids aswell when I see him Wednesday.

ThankYou for replying and I will say about the steroids being fantastic. X

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It probably started working after a couple of months, maybe 10 weeks? It does seem a long time but it does go by, and at least you feel like you're DOING something.

He may try more steroids in the interim.

Hope it goes well. 🤗

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thank you. x

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I was given a steroid injection yesterday and starting the hydro next week when prescription comes through.

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That sounds like good news.

Take it with food as it can cause reflux/heartburn.

Be patient and hopefully it will help.

Take care

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Yes, soootired is right. Hydroxy gave me a very noisey rumbling tummy for about 3 weeks. You need to take with food and/or glass of milk. I take mine after breakfast & evening meal, with a small glass of milk. My stomach did get used to it and I don't have the tummy issues taking it now.

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ok. thanks.

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Hi MandyPandy...I too am new to Lupus. I was put on prednisone for my gosh awful rash, and Hydro..sp?.(Malaria drug)..Prednisone makes me feel normal..ish. BUT, I want off as soon as possible(side effects long term use).....My Autoimune Blood work does point to Lupus...AND I am being tested for Dermatomyostosis (skin and muscle) I am really hoping that I do not have that!! ...Well, Here's to all of us getting on the right course!!

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yeah definitely. I felt like a new woman on prednisone. since being off them I have got so depressed and symptoms are back with a vengeance. not capable of doing much at all. my eyes so heavy and tired. I don't feel with it

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Yes..so tired...I should have known that my rash was more than a rash..I was SOOOo tired... I HAD to take naps, or fall on my face..so un like me...

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I haven't got any rashes. just aching, dry mouth, loss of appetite and tiredness all the time. my eyes don't feel full open and I don't have much concentration in anything at all. start something and leave it etc. I also get out of breath quite quickly walking up stairs/uphill anywhere. feel like a rag doll.

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This is exactly how I feel and I have primary Sjögren's.

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What's that?

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I have a very dry mouth, always have had for years. Don't know if the tiredness in my eyes is due to dry eyes, no idea.

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Well it's good to know a bit about the possible diseases you might have - but Sjögren's is the most underdiagnosed as a primary disease. I joined a Sjögren's FB forum with over 9000 members and the majority of users seem to be young women - all officially diagnosed. This is despite most of the informationsaying that it mostly affects women over 40. It's hard to find up to date, reliable informationon UK sites.

I was misdiagnosed with RA for five years by 2 different rheumatologists. One GP even told me it didn't exist as a primary disease! I guess it only affects 1 in 10,000 so it's actually quite rare. Now GPs just call it "your connective tissue disease" - but between me and my rheum and neurologist and oral consultant they are certainly learning much more lol!

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Ok lol. I must admit I have been driving myself mad looking stuff up. Be so glad to have my mind put at rest. All I know is that my esr is very very high which means inflammation.

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I know - it's so preoccupying trying to anticipate what might be wrong isn't it? I only suggested Sjögren's so that, if you do have it either as a primary or secondary disease, you at least know a bit about it.

My ESR has been very high since day 1 of getting my bloods done 7 years ago. 2 weeks ago it was explained to me that, with my disease, it would never be normal range because of my Sjögren's.

Here is an extract from Arthritis ResearchUK's Sjögren's pages to explain:

"Blood tests – People with Sjögren’s syndrome often have high levels of antibodies in their blood. These can be measured with blood tests. High antibody levels can make your blood thicker than usual, and this is measured by an erythrocyte sedimentation rate (ESR) test. The ESR measures how fast the cells in a tube of blood settle. The thicker your blood, the faster the cells settle and the higher the ESR.

People with Sjögren’s syndrome often have very high ESR levels regardless of whether they feel well or ill. In Sjögren’s syndrome, the ESR or other measurements of inflammation such as C-reactive protein (CRP) aren't very useful in assessing how active the condition is – unlike in lupus or rheumatoid arthritis."

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thank you. x

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i also have cyclothimia, a mild form of bipolar which isn't helping. I have got so depressed and looking up symptom after symptom isn't helping but I am addicted to looking stuff up.

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Hey you won't be the first or last to use Dr Google obsessively - it is highly addictive! As long as you use reputable sites such as Lupus UK, NRAS and the British Sjögren's Syndrome Association and Arthritis Research UK, Oxford Rheumatology, John Hopkins (Sjögren's) and other leading charities you won't go wrong. But if you Google without discrimation you might get misinformed so be wary.

I got very depressed at first and sometimes still do. But I've learnt that being a rheumatology nerd can help me manage my symptoms better. Coming here to share and support and get support from others really helps. Xxx

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once I get the diagnosis confirmed and put on the medicmedicationwhich was mentioned in my 2nd appointment letter, I think my depression will lift. I just hope he gives me a course of steroids to control the aching muscles and tiredness. xx

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my g.p. thinks I am a hypochondriac and neurotic as I kept running to g.p. when my symptoms started coming back when I got to 5mg of prednisone. he gave me stuff to make me even more tired. beta blockers and ametrytptoline. took beta blockers for 3 weeks, felt worse. took 1 of the others after another appointment and they made me feel well out of it. stopped them both. really have tied myself up in knots. personal life hasn't helped things either. xx

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Autoimmunity thrives on stress and anxiety so do see if you can GI d a GP who doesn't make you feel like a hypochondriac and helps keep you calm by being reassuring instead. Things will be better when you have a diagnosis in sure.

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Yes I think so too. G.p.s just give you stuff to shut you up especially when you get tearful uncontrollably. No understanding whatsoever.

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I know we shouldn't have to - but I have learnt that GPs are best treated like business people rather than counsellors.

These days I go in - smile, make eye contact and then get out my ten minute consultation list and tell them what I'm hoping to get from this consultation. They generally look quite surprised and pleased. This way I get what I want - which may be referrals or medications or explanations or copies of letters and bloods. Or several of these!

I try to make them smile at the start so that they don't think I'm suffering from health related anxiety. Once I've got what I want from them and if they have been kind - I do sometimes tell them how bad things really are and they then they don't blank me because they know I'm not going to expect more from them than they have time for. The priority stuff has been dealt with and there's space for some sympathy if I feel I need it.

If they say something annoying then I try to avoid them. For instance I asked one new gp for a referral to gastro and she said no in a patronising manner so I've never been back. I have had some terrible experiences of GPs and hospital doctors and nurses along the way and they can see copies of my letters of complaint - all upheld - and know that I can deal with unprofessional doctors pretty ruthlessly if they read my notes!

But so far I've found my new GP Practice has been really good and I think this is partly because I'm under good consultants and serious immunesupressant meds but also because they know I won't bother them if they treat me properly.

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My Husband was Dx'd with Sjogren's about 5 =/- years...in his mid 50's.....I can tell he has flares but doesn't get it checked out...Dry Eyes and mouth are bothersome to him...and now me with Cutaneous Lupus.....I worry for our daughters.. along for us

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yes I bet you do. nobody in my family have had it as far as I know but a lot of arthritis in the family.

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Hey love...it's not easy getting off of the predisone, my Dr have been trying to take me off slowly but he can't cause when he lower the dose symptoms comes back with a vengeance, so he have me on 5gm once daily..hang I there love

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Hi Mandypandy1969,

Welcome to the LUPUS UK community forum. I hope that you find this a helpful place for information and support.

Good luck with your rheumatology appointment tomorrow. I hope that they are able to confirm some answers and provide a treatment plan to help alleviate your symptoms. 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 need more information about lupus and how it is diagnosed, we have a free pack which you can request or download from our website at lupusuk.org.uk/request-info...

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thank you so much for the important information. very helpful. I will keep you informed on how things go tomorrow. x

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hi Paul. got my diagnosis of lupus today. I have had a steroid injection and put on hydroxychloroquine. hope this helps me as I am so depressed and can't cope with the tiredness and achiness.

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Hello. Thanks for the update. Do you feel relieved you have a diagnosis? Sounds odd to be relieved to have a Lupus diagnosis but for me I just thought yes, I'm not going mad, I'll get some help now and hopefully feel better. I REALLY hope the steroid injection and hydroxy work quickly for you. I found the depression and anxiety also gets better with treatment as they are just another symptom of lupus that needs treating. Plus feeling crap all the time would get anyone' down. Best wishes for a good response for you now.

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thank you. x

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It will honey, hang in there

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Hi Mandypandy1969,

I hope that the steroid injection helps to alleviate your symptoms whilst the hydroxychloroquine starts to take effect. Hydroxychloroquine can take around 3-6 months before it kicks-in so be patient with it.

Keep us updated with how you are getting on.

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that's a long time. how long will the steroid injection last.

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I think it can vary a lot between people so it is difficult to give a reliable answer. Hopefully some people here can share their experiences with them to give you an idea? It may be worth putting a new post up asking people?

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ok. Will do. thanks.

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Sorry to hear what you going through love..iv been diagnosed from 2013 and honey not easy at all to cope with, the pain is unbearable at times don't want to come out of bed😔😔😔 pray love God will give the the strength to cope with it....take it easy and God bless

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thank you. you too. x

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