Systemic lupus. HELP

Hey guy's.

I got diagnosed with lupus nearly 3 weeks ago now. Took them long enough as I've been in joint pain for 5-6 years. I am still finding out information about it. I am currently taking hydroxychloroquine but ain't seen any side effects as yet. Also are you guys taking any pain relief I am on co-codamol and naproxen also cinnarizine for my vertigo. I suffer with fitique high blood pressure and rash on my face. I would like to ask do lupus cause memory problems as I am always forgetting things. I could have a conversation and a few seconds after I can't remember what was said. I am taking steroid pumps for my asma but they not doing any good could it also effect your lungs. I am 22 and I should not be the way I am . Got no kids but apparently there is complications if I do catch.

Thanks guys. I also look after my mum who has got osteoporosis and other complications also my partner has got adhd and mental health problems which I try and help him with that as well which I find it hard to try and concentrate on myself as well as my loved ones. Sorry if I sound like I am moaning guys.

13 Replies

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  • Hello! Welcome to the madhouse! :)

    I was diagnosed in, I think, March after 14 years of being passed off as a hypochondriac. I am now on hydroxy, cimetidine, dapsone, meloxicam, amitriptyline, propranalol and iron supplements. But that's nothing - many people with lupus can open their own pharmacy!

    Yes, lupus does cause memory loss - we call it "brain fog". It's very annoying and can interrupt my speech patterns as I try to recall words but cannot find them and can also temporarily forget to use items I use every day! I also do what you do - I forget what I am talking about, as I am speaking. RAH!

    Coming to terms with the diagnosis is a long process, but I have just about learned to laugh at myself as humour is my medicine.

    We are a friendly bunch, here. Ask whatever you want and you will get a response. This site has become my bible - I can find answers to my questions and the support I need to cope.

    Also, one last thing - have you heard of The Spoon Theory? Google it! It'll come in handy for explaining to anyone who doesn't know what it's like to have lupus.

    Christine x

  • I used to take pain killers around the time I was diagnosed and for about half year afterwards until my lupus settled down a bit but I'm not taking any now on a regular basis, only as and when the pain gets bad. But this depends from person to person, so you'll just have to bring your lupus under control first with all the meds given, then hopefully you'll be able to slowly come off some of them.

    Memory issues are common - mine accentuate during the flares. But again, when the lupus is under control the memory issues go away in my case.

    One thing to remember is that we are all different and lupus affects us in different ways - you will read about other people's symptoms on this forum and how they are coping with them but that doesn't necessarily mean you will be the same. But this forum is a very useful tool nevertheless.

    Well done for being proactive with your illness and trying to find out more about it - being informed will help you in the long run.

  • Hello crissiij and purpletop. Thank you both doe your response I went down the doctors this morning wrote all my symptoms down and he don't know anything about lupus but going to write to my rheumatologist to find out and get my review appointment sooner as he is concerned about them. He also reckons I have anxiety and depression due to the lupus but don't know anymore about it. How useless. I will look up spoony theory thank you. And yea I do get mixed up in my words I even say things that don't make sense and I forgotten what I wanted 2 say. Also I don't know about you guys but it is hard to express or say what you want to in an argument and get panic attacks.

    Thank you guys I really appreciate it it's nice to talk to people who know what it is like to go through this horrible illness.

  • Yep, I am useless in an argument because I can never find the words or emotions. Unfortunately, my other half uses this against me occasionally.

  • I agree with you there. It's frustrating that they don't understand what it is like or how we feel about it.

  • Its always the same they do take ages to diagnose this condition and often you will find you will get a second 'extra' diagnosis also of perhaps sjorens syndrome or something like that as they often go together. Yes most people take plaquenil or hydrochlocochlorine(sp) (generic name) and an anti-inflammatory - Naproxyn proved to be a bad choice for me and indeed it has been banned in USA as it does cause stomach ulcers. They tend to be cluster ulcers from the pill and are easily removed with intravenous antibiotics, but to avoid this predicament and discomfort I recommend you ask your doctor for Meloxacam which is every bit as good and does not have this side affect. They dont seem to offer this alternative, perhaps its more expensive but in either case you should also take something to protect your stomach so I would speak to your Rheumatologist about this. It takes at least 3 months to find the benefit from all these drugs and i have not had any side affects from plaquenil at all. You must get your eyes tested twice a year and for the optician to look into the backs of your eyes. This is really just a precaution as there has been some small reports of damage to the eyes

    You dont say how old you are but i think i suffered lupus all my life and can look back and tie symptoms and events up with it now.

    I hope you get on alright but dont let lupus own you , you can lead a perfectly good and happy life with it and just learn to pace yourself in life, dont do anything to the extreme, rest plenty, get plenty sleep, eat well and do a little exercise and you will be find

    Ann lister

  • Thank you for your reply annlister. My doctor is going to see if he can move my review appointment with my rheumatologist due to all my symptoms as my doc don't know much about lupus. I am 22 been suffering with pain for 5-6 years but only got diagnosed. Nearly 3 weeks ago. I look after my mam who got osteoporosis and other complications. She is also due to have a operation in 2 weeks. I also look after my partner who has got adhd and mental health Problems which can be very stressful situation.

  • Hi as everyone has already said we are all different but the one thing that's very commn with all luppies is stress and flares! Stress is not good for any of us, so try to get help for your family if you can while you get your meds sorted and your lupus under control. You will get there it just might take some time. Good luck with your rheumy.

    Try to take care of yourself as well as your family. June xx

  • I have got this theory I have had for years and that's to put others before myself. I think that's why I was so indinial about myself for so long. I would rather see other people well before myself. But now I have got no choice but to look after myself now as well as others. Guys I have learned the hard way. Thank you all for your support like I said in passed messages it's amazing to talk to others who understand what it is like. I hope you are all doing well and trying to live a normal life.

  • Dear blonde You must be so relieved to at last have a "tag"to all your ails .I know I was albeit 30 odd years ago when the outcome was not so good Or so they thought Heh I'm still here . All I can say is read all you can about lupus . Go on an elimination diet I can assure you that certain foods you are eating are aggravating our symptoms, This is a long and tedious process but well worth it Everyone is different what triggers your fatigue , pain , headaches are not the same for everyone ,although Luppies cannot have MSG Soya Mung Beans or nightshade foods these are classic . And if avoided will help with some of your pain. I was able to get out of a wheelchair by just altering my diet , my hydroxychlorequine was my life saver although I did have lots of other drugs. I managed to continue working until 10 years ago when lupus affected my heart, I am glad that you realise you must put yourself first I went through a phase when I kept telling everyone I am now selfish I come first cause if I don't then I won't be able to look after you .It seems to have worked as everyone is more appreciative of what I do for them and I know when to say No sorry cant do that for you at the moment but when I feel better it is not a problem . Hope you made sense of what I am trying to say to help you . Take care and be selfish Lupus rears its head in weird and unusual places x

  • Hello voutton. I have fatigue all day everyday. It don't go away. I could be relaxing in the afternoon and just drift off without realising. With food I rarely eat anything with fat always cooked on the stove or in the oven. I also take multivitamins with iron everyday along with feeling like a pharmacy. I do read up nearly everyday trying to learn more about lupus. Well done for coming as far as you have I really do admire you for your strength and courage to be normal even though how hard it is. You are a strong person and please carry on being strong you admire me as so you will with others. Be proud.

  • Hydroxychloroquine (Plaquenil) takes 4 to 6 months to reach therapeutic levels in the blood.

  • Thank you for your reply gazorpf I didn't know that I thought it took a few weeks.

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