Hello. I am new to all this and find this site very helpful, I too have been having probs for ages mainly joint ache and fatigued,

It all came to a head end Nov last year when I was in so much pain with my right knee I could not walk, went to the Docs who was new to practise (mine retired) I was sent for x ray and blood test, came back with arthri of knee and hands also Lupus or Sle, I had never heard of it before and am still coming to terms with it, my Doc has me on Cocodimal at the moment and each month the dosage gets increased, what I am uncertain of, some days feel reasonably pain free but other days, feel as if I have had a battering in boxing ring and am very low and easily tired, is this normal or as I have always thought just getting older, am in my 60s, I cannot take anti inflammatory drugs as they bring on asthma, and I also have hiatus hernia which I take 1 losartan tab a day. Would appreciate any ones input.I would add I have always had a good diet with lots of veg daily and the nearest I get to processed food is frozen fish in breadcrumbs

Last edited by

8 Replies

oldestnewest
  • Hi bodyache, love the name by the way. Your Dr you refer to is your GP ? If so then ask for a referral to see a rheumatologist. If it is lupus, you cannot control it on co codamol. These are just painkillers and you need drugs to dampen your immune system. Yes you can be well one day and not the next, lupus is very random. It is a lot to take in, but first get a definite diagnosis.

  • Many thanks, yes my GP confirmed I have SLE Lupus and a rheumatologist was mentioned but to be honest I was so shell shocked thought that was for the arthritis in my knee and hands, but I am seeing GP next week so will discuss all these problems, at least you have given me hope that it may be able to control and it is not age related I hope!!!

  • As I said it is a lot to take in but please don't read our problems on here, thinking you will have all of these issues. We are all at varying degrees, and mostly controlled. Unless there are health reasons you will probably start on hydroxy chloroquine. This seems to be the backbone for lupus sufferers. Steroids sometimes are prescribed, but I'm sure you are familiar with these, re asthma. Sort out rheumatologist with GP, it is important. You will be asked lots of questions, have a physical exam, and be sent for more blood tests. Sometimes it can take 6 months for drugs to kick in. I'm sure when you are asked questions, you will think,yes, I do have that problem. Fatigue is a big problem for most. Bet you thought it was just old age. Haha. 60 is not old nowadays, at least I hope not, I'm 52 !!!! Anyway write down any problems you have had, even if you think it's not relevant. Let us know how you get on , and just post when you are worried or just want someone to talk to.

  • Hi bodyache,

    First of all welcome to the site and the community, i hope you are settling in OK.

    If you would like i can send you an information pack which helps explain about the condition including the symptoms and diagnosis of lupus which is perfect for the newly diagnosed. We also have contacts living with lupus across the UK who can give advice or just be somebody to talk to, all of which are featured in a copy of our 'Niews & Views' magazines which is also included in the pack.

    If you would like me to pop one of our information packs in the post for you, just send me a private message or an email with your address and i will arrange for one to be sent out to you. hayley@lupusuk.org.uk

    Please do not hesitate to get in touch with us here at the National Office if you require anything at all. You can reach us on 01708 731251.

    Best wishes,

    Hayley

    LUPUS UK

  • Many thanks for the replies, all very helpful and am now going to wait until I see my GP next week, almost wish it was today as am having a bad day, think I over done it yesterday in the greenhouse, my hand and knee are quite swollen and am extremely tired, but hay ho no good feeling sorry for myself, am much better than others!

  • Hi, Bodyache,

    Not a lot to add to what 6161's said (always so sensible!), except that to say however daunting it feels having a big label like 'lupus' on you, it's also much more useful to know it's not age or your imagination, and that there are treatments to help - and who knows, one day they'll find a cure and it might even be soon enough to help some of us on this forum.

    Don't be afraid to just vent, either: sometimes you just need to know that someone who understands what you're going through is listening to you. And it's incredibly useful, if you're starting a new drug or treatment, to find out how it affects anyone else - though you must also remember to use other people's experiences as guidelines, not gospel, because we all react in different ways. That's one of the 'joys' of lupus: there are so many different ways it affects people! (For my part, every post I read makes me so thankful that I don't have that symptom or that one . . . we may all have the same diagnosis (and often a load of other related conditions too, like arthritis and connective tissue disorder and Sjorgens (very dry eyes and possibly other bits too!) and Reynaud's) and it can be easy to read some of the posts and think: 'Oh heavens, is that's what's going to happen next?' - but that's not necessarily the case. Best of lucky getting to a rheumatologist quickly - and when you do, lots of us find it helpful to go armed with a list of all the things you suffer from - fatigue, aching joints, dry eyes, rashes, itching, etc etc - and what makes them worse, because it's very easy to forget things when you're faced with a crowded waiting room and an overworked medic.

    The Lupus UK leaflets are also very useful for explaining your condition to family and friends - we've all discovered that although lupus is nowhere near as rare as people might think, it's still something very few people know anything about.

    Personally, I long for the day when the effects of lupus are as well known as diabetes - think how different it would be if you didn't have to explain to people who tell you how much better you must be doing 'because you look so well'!

  • Oh, and Happy Easter, Lupies all!

  • Agree with other posts. Seeing a rheumatologist who can advise on proper treatment for the lupus is the first step. As others have said, lupus affects each of us to differing degrees so don't assume you will have everything that may feature in the posts. I have had lupus 21 years and have had few flares or upsets once I got onto the right treatment plan and have been able to work full time and bring up two children. Information was very important in helping me understand the condition and manage it.

    The coproxamol prescribed by your GP may be ok for helping with pain in your arthritic knee but there are other options for managing and controlling lupus. Hydroxychloroquine may be a first line drug that a rheumatologist could discuss with you.

    I wish you well

You may also like...