AS much info as possible on the below conditions please

My partner is really starting to panic about my health, it seems to be deteriorating. I'm currently on hydroxycloroquine 200mg for suspected lupus and rheumatic arthritis, adalat 1 large tablet twice a day, asprin once a day and lansoprazole once a day for APS, plus tramadol if the pain is bad or morphine if I need something to work immediately. My rheumatolgist said She wants to put me On immue suppressants after my bloods come back, I had countless arguments with my idiot doctors each one of them acted like I was confused because and I quote "your already on them" well I told one of my rheumatolgists What they said and they confirmed I was right and I do need new tablets and they did send a report telling them that, my stupid baby face makes ppl treat me like a kid!! Anyways I don't know much about all this and my pain seems to be getting worse daily, iv read that lupus can kill if untreated, How? And will the conditions get worse despite treatment? He's freakin out that one day he will have to quit his job :( I Tell him not to worry but iv read all your stories, did you all keep having problems that put you in hospital even tho you were being treated? What can I expect? Any info will help me so much I just want to Tell him more than to stop worrying. Also I'm getting married this year How can I prevent a flare on my big day?? IF possible?? XXxx

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  • Hi,

    aww sympathy for you and your partner. I also have sle and Aps, but very much in control. Your condition can be in control if you are on the right meds. there is a video on you tube about Lupus. watch it with your partner. There is a link on this website but not sure how to get it.

    Good luck with the wedding.

    Shaheda

  • Thank you :) wedding is on the 7th of december and it feels like time is slipping away lol. Xxx

  • Hiya,

    Would you like me to send you one of our information packs about lupus? If you would, please send me a private message or email paul@lupusuk.org.uk with your name and address. We also have a DVD and handbook for those that are recently diagnosed. You can find out more about that here - lupusuk.org.uk/latest-news/dvd

  • I already have a pack but it didn't shed much light on What to expect in the future, I'd kinda like to know What I could expect, What others have had happen even though they have had treatment. XXx

  • The reason there isn't really anything on that in the pack is because it's pretty much impossible to say for one person I'm afraid. Lupus varies so widely from one person to another that it would be hard to give a balanced account.

    The booklet that comes with the DVD may be the best guide for what to expect and how best to manage your condition.

  • It was more of a personal experience thingy if you know What I mean, kind of How others have found the conditions effect them and What they had Done also if they were receiving treatment whilst these things happend. I'm not thinking it will happen to me or anything like that I'd just like to know How others have been effected really, I get so many facts thrown at me daily but nothing means more than hearing it from those I speak to daily Who are suffering like me, and maybe if I know What happened to lead up to that point for them then I Might spot something going on and get seen quicker to prevent more damage. I'm Still learning tbh and I like hearing How others cope and warnings to look out for. Without Sher and the others warning me about their problem regarding lupus psycosis I wouldn't of taken my symptoms seriously and probably would of ignored it. If that makes sense lol xxx

  • Hi Loubielou,

    Bless you. Just to confirm that I too was on the hydroxy (placquenil) like you 400 mg daily which was sufficient for up to about a year until the flare ups were coming too often and I was in pain. My rheumatologist recommended methotrexate and whilst I know each individual is different it has made such a positive difference to me so far. If the rheumatologist has mentioned using immune suppressants it will be for a reason. Please don;t be fearful of asking questions about each immune suppressant - and if you do start them they will counsel you prior to you starting them to talk about side effects. There are a lot of people on this site who have experienced lupus for a long time and they will also be able to contribute to this post. But for me personally I think that if my flare ups (which are the worse symptoms to cope with) are being kept at bay then I can live my life betIter. For me if the flare ups are being kept at bay then I hope there will be less damage to any internal organs too.

    I think it is about taking a holistic approach - so finding the right meds for you (which can be trial and error and different for each of us), healthy diet with foods that will not ght aggrivate/inflame our immune system, light exercise and pacing ourselves - oh and avoid stress as this makes things worse.

    I found that listening to my body has paid off in the fact that I knew hydroxycloroquine was not sufficient in isolation and the best thing I have done is getting the immune suppressants too. A bit like your partner I also have moments when I worry about what will happen next - but for now things are controlled, I am enjoying life and trying to live every moment - my philosophy is why worry because that will just cause me more stress and more harm.

    If your partner does want to read about the condition it is benefical to do so from a reputable site like Lupus UK which has leaflets that you can read. Like you I was fearful but

    I am now realising that a lot of medications have improved in the past 10 years or so, and there are things I can do to be proactive that will help me manage this. If you need physio then you can request it, if one lot of meds don;t work then ask to try another. I think it takes time to adjust to it all and your worries are natural. I would love to hear how you get on if you start any new meds - all the best xx

  • Hydroxy is a low grade immunosuppressant so theoretically, u're Doc (although he may very well b a buffoon) is kind of correct, BUT I reiterate, it is a LOW GRADE 1 & generally, not used as an immunosuppress, more 2 help with fatigue & joint pain etc so Rheumy will very likely stick u on something that IS a ';proper' immunosuppress.

    The thing is honey, it doesn't affect us all the same way & isn't 'text book'. I went 16 years relatively problem free, with just a little blip here & there, then had a massive flare that lasted 2 years. Worrying about what MAY happen is time wasted & not exactly ideal 4 u're health, the added stress of 'ifs' & 'buts' can sometimes b enough 2 make everything kick off.

    Don't get me wrong, I'm not saying we SHOULDN'T think of the future, but if u spend too much time worrying about it, it can make the present less enjoyable (I know what I mean even if any1 else doesn't lol!).

    I truly believe a lupoids frame of mind is important in tackling this illness ;) x

  • It's my baby face it gets me treated like a kid lol. He's freakin out that although I'm getting treatment I'm going to get worse and I can't console him because I don't know lol. It doesn't faze me tbh, take the bad with the good, I just Thought if I could Tell him what's happened with a few of You (good and bad) he may find solace in that and not panic so much? He can't come to the rheumatolgist with me because of work so he struggles a bit to understand what's really happening to me. We've been together 5 years and he's watched me in and out of hospital always going home with paractamol and no answers so now we have them he's finding it hard to take it all in. I hate not being able to Tell him I'm going to be ok :/ xxx

  • All of the doctors at my practice are morons lol there's 2 of them that I like and they Never have appointments free (probably because they do their job). They treat me like a fool, I even took the booklet off Paul at lupus uk down to show them they use hydroxy and immue suppressants aswell but that made no difference, he just said no your wrong. I said Why would they Tell me I couldn't have them until I was cleared of aids and then give me them anyway? He just shook his head and again told me I had everything I need. I'd change doctors but my other one is a bus ride so it would be hard to go, this one is walking distance. You would think after all the mistakes the gps have made over 5 years where I knew something was wrong and they said it wasn't that they would maybe start listening, but obviously patients don't know their bodies and a gp with no experience of autoimmune disorders can Tell me that I'm wrong when I have the facts in my hand. IT boils my blood! I would complain but while they are my primary source of care until I get repeat prescriptions I need to keep quiet. Plus I know if I start complaining I will go mad. THe receptionist thinks she's god, told me that my son showing signs of whooping cough wasn't an emergeny and the doctors would call me if they had time!! My son is 2. THe doctor rang me immediately and shouted at the receptionist infront of me lol she's had it in for me after that :P xxx

  • Hi , i read your post with interest, as I have so many similar experiences. I just wondered what APS was though? Sorry to answer a question with a question!

  • Antiphilispholid i think that's What its Called, commonly refered to as Hughes or sticky blood, basicly makes your blood clot (to my knowledge I'm Still learning). It's a mouthful so we shorten it. What do you suffer from and when did you get diagnosed if you don't mind me asking? XXx

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