Based on another members question, I would like to know how sufferers are fairing, long term. Has medicine advancement made you better than you were in the beginning, or has your lupus got worse over the years. If you are worse, is it the lupus,or side effects of the meds that have caused this.
Thanks in advance to anyone who is willing to share their details.
I was diagnosed 30 years ago at age 12. I struggled through puberty then went into remission and was drug and virtually symptom free for 20 years. I even questioned the diagnosis. I flared with childbirth and breastfeeding and now for eight years have struggled more with active lupus (also went through early menopause). I am on prednisone low dosage, hydroxicloriquine and now mycophenolate and since starting myco last July feel much much better again.
Thanks for reply, Shannon B. Seems to be a common problem with childbirth. Glad you are feeling better.
I have had lupus for 15 yrs and after a period of stability on minimal medication, ie ibuprofen I have steadily deteriorated since then. I have been on lots of medication since, some successful for a while but eventually becoming of little benefit. Unfortunately as a result of drug damage I now suffer from a severe osteoporosis, gastritis and stomach damage which means I can only eat minute amounts of food and drink at a time. Consequently I am extremely underweight and find it difficult at times to manage.
I would love someone to wave a magic wand and create a cure for us.
Hi moo1234, thanks for reply, although you sound in a bad way. This is the sort of worry I had about the use of meds longterm. I also have probs but not as bad as you yet. It must be horrendous to say the least, and if I find that magic wand, I'll give it a little wave, to you.
Hi I have had lupus for almost twenty years, was first diagnosed with discoid but unfortunately it became systemic, I have had periods of remission but my periods of active flare in latter years have been much easier to cope with thanks to the introduction of methotrexate and folic acid. Also I think that the doctors and nurses having more knowledge has mad them more sympathetic and able to cope and treat this charming condition more easily and the introduction of electronic communication between hospitals has certainly improved treatment. One of my hospitals does not have a dermatology department so when I have regularly been an in patient and been taken to dermatology by ambulance letters have been sent electronically the same day by email which has made things much quicker. I personally applaud the doctors who look after me as this is such an awkward condition to look after and so much of the treatment in the past has been trial and error, anybody being newly diagnosed now is definitely at an advantage with the advantages in medical sciences and all the research that has gone on up to now.
I personally have not had too many side effects from drugs and would definitely say modern medicines have improved it and that doctors are much more aware of what to look for if things do start to go wrong.
I hope this has helped to answer your question
Madmagz x
Thank you madmagz, so refreshing to hear positives about the NHS. Unfortunately for some, it's still hard to get recognised as being ill, and it can leave a negative attitude to all staff. Metho was stopped for me due to liver and lung damage, but I know it helps a lot of sufferers. Keep on,'keeping well', and thanks again.
I was diagnosed nearly 20 years ago and have had various drug treatments alongside regular courses of steroids. I have times when flares are long and constant and times when I manage pretty well. I gave up working again 20 months ago and find things easier again. I find the stress of working makes the flares more common and worse. Otherwise I think I have improved or deteriorated significantly.
Thanks helenfirebird for your reply. It seems that working does become harder for a lot of sufferers over time. I cannot work anymore either, but I'm glad after 20 years, you are still coping in a fashion that keeps you going.
I am 74 years old and have had discoid lupus since I was 13 (diagnosed at 17). Many ups and downs over this time but generally condition improved as I aged - after all, still here!, and in reasonable health. I sort of pay very little attention to lupus but am careful to pace myself
Hope this helps
I alsopay little attention but worry when I have different symptoms. Had sle 15 years
Thanks miacat, I guess it depends on how many symptoms you can ignore, but I do agree that we should not analyse ourselves too much. Glad metho is working for you now and you can be symptom free again.
I'm so grateful for your reply, foxglove. It is really inspiring to hear from someone that is still doing well, after all these years. Bet we could learn a lot from you, starting with your positive attitude. Lupus definitely doesn't 'own you'. Take care and keep well.
Lovely understanding reply, 6161, and appreciate your kind wishes- you too take care and keep well!
Hello 6161
I have been ill for 26 years and still not got a confirmed diagnosis apart from UCTD . I could well be Lupus Overlap but have taken a lot of immuno-suppressives and currently on long- term steroids and have been fortunate not getting side effects. This is due to advances in medicine Coming up with bone-strengthening drugs. Over the years it's been my illness getting worse rather than bad effects of medicines. Monitoring is so much better these days. I hope I've answered your good question ok and your keeping as well as possible.X
Hi misty14, yes you have helped as it seems the meds would have been the same for lupus. I'm sorry that you are not improving and 26 years is a long time to suffer. I have had bad side effects to meds, but also active lupus too. At least I don't have the added burden of being 'in limbo'. It must add to the stress that we are supposed to avoid!!!
Hi 6161
Thank you for your lovely reply. Being in diagnosis limbo does add to the stress but like so many on here I've learn't to live with it and do the best I can. Take CareX
Hi
I have been diagnosed 20 years now i am on a lot of medication but its not working, i have learnt just to try and get on with things the best i can.
Hi lupus, thank you so much for replying and so sorry for your continued suffering. I must admit to having that attitude now, but it is hard.
Hi 6161. I've battled SLE for 30 years. It was triggered by pregnancy. I managed it really well for the first 20 with high doses of aspirin, which was the only NSAID that worked for me. That said, the aspirin had to be carefully managed with other drugs in order to protect my stomach. When that became an ineffective control, I switched to long-lasting steroid injections (of Depo-Medrone). My medical professionals said the SLE would get much better after the menopause, and I had a very early one as my ovaries were the first organs attacked/destroyed, but that proved quite untrue. The disease is becoming increasingly vicious with advancing years and the corticosteroids now cause me life-threatening problems. Ironically, it seems likely the corticosteroids will see me off rather than the SLE but I'd be permanently bedridden without them. In all my years battling this disease there's not been a single new drug formulated specifically for SLE. We still have to make do with drugs formulated for other conditions. I'm quite aware miracles can't be performed but, honestly, since there are apparently more of us with SLE than MS, why not???!!!
Hi tigerlily4, thanks for sharing your views to which I agree. I think when they unlock the key to proper diagnosis,( and quicker than the normal 5 years or more), this may help towards identifying a cure. I am now on the depo road, which I know is a necessary evil, but all else has failed for me. I do have some organ involvement as well as bone issues, so no telling what the end the end will be for me. But remember what our Nan's used to say, " you could get run over by a bus tomorrow", so let's make the most of today, and let tomorrow take care of its self.
Wise words indeed from your Nan and I don't give the future or disease much thought all, preferring to deal with things as and when they arise. You'd drive yourself insane otherwise!
My Lupus was diagnosed after menopause, after a 10 year flight to get this diagnosed and only a year after that, did it rear it's ugly head in a full on flare up complete with vile body rash, so it seems the older we get the less IMMUNITY. So what the 'professionals' told you was complete cobblers!
I hope you are well.
Hx
i was dignosed over 15 years ago aged 19 . when i was first dignosed i was told id never have kids or live pass 50 . the advances in medicine are amazing and i wouldnt be here with out them due to a rare complication with the lupus but i have a daughter and im reaching for that goal of 50 and intend to kick it out of the park . however when the lupus flares theres little still that can be done and i find it so frustrating that despite all the advances we have made at the end of the day lupus is still as uncurable today as it was 15 years ago and still most people that i talk to havnt heard of it or dont understand it
Hi purplepancakes, you go and kick that ball !!! Glad you defied the odds that were cruelly stacked against you. Yes I do agree that lupus is still an unknown condition, with a lot of ignorance to our suffering. Keep your positivity going, don't let the disease get that too. Thanks so much for your reply.
I've only been diagnosed for 2 years but wanted to say thanks for a very good question. Although we understand that we are all different, it is good to get an idea of how things progress as we get on in this disease. The responses are priceless, thank you all for sharing!
Yes I echo that. A bit of a mixed bag at the mo, but I will give it a couple of days before properly thanking everyone.
Hi, I have had lupus for 15years my medication has remained the same but I seem to have collected more diagnoses related to lupus and I definitely feel worse as I'm getting older
Thanks for replying, Maximillian, I too have unwanted ' add ons', but my meds have been changed a lot over the years.
I should have shared my own views as I do qualify 15 years. I was diagnosed 9 years ago, but had lupus 6 years previous. I was very ill in the beginning, but meds helped to calm things down. I've never been in remission or drug free, but I have had easier days, as I like to call it. 15 years on, I have not seen my lupus improve. My mobility is poor now, and I am paying the price for all the steroids. I have other health issues now that are caused by medication for lupus. Overall, I have deteriorated due to meds and disease.
Thank u all for sharing as I have only been recently diagnosed at age 50. I may have had symptoms before, but it seems it only started 14 years ago after the birth of my first daughter. Muscle weakness increased over the years and second daughter, but decided to exercise every day and take vitamins to combat what I didn't even know was going on. Symptoms seemed to progress through peri menopause. Thought everything was related to that. I am nearly in menopause and retaining water up and down. Have slight hypothyroidism, and nodules, some kidney scarring, still muscle weakness, headaches, dizziness... Started cutting out preservatives and chemicals out of my food 11 yrs ago...started gluten free eating, anti inflammatory meals, herbs and such and feel pretty good. Still have nasty hot flashes, joint pain, but hoping movement and exercise, nutrition and supplements will keep me off meds. My plan is to live long enough to see my children grow up and see my grandchildren hell or high water, as they say....keep on fighting everyone!!!! Don't give up!!
Oh, and I am not working because I get tired easily and I am finally taking care of myself. My entire life I worked hard and pushed myself. I rest now when I feel tired and I don't do too much. I take it easy. If I push, I don't feel well. Take care all.
Hi natura, thanks for your comments, although I think from the replies so far, it seems that not all is lost yet on this disease. I asked the question for this reason as we don't have access to this sort of information, and I would rather hear of real suffers opinions, than read a load of medical jargon in a book. I admire your determination to do everything possible to help yourself. I can't say that I do.
The good thing about this question and the responses to it in particular, is that they give us, those "barely" diagnosed, hope that we can survive this. Granted, the quality of life will be affected but at least we will be alive.
I was diagnosed in 2012 and for the first year or so my symptoms were so unpredictable and so alien that on many occasions I thought I will die. I can't tell you how many times I went to A&E during that period and how terrified I was. I remember sobbing to my poor mum, who lives abroad and only visits me once a year, and telling her that I'm scared and that I'm going to die. The poor woman was in such anguish hearing me so desolate and in pain. Neither the Internet nor the doctors provided the level of information I needed, everywhere I turned I got the message that bad things can happen but no one knows how, or when, or even if they happen at all.
This forum has been such an invaluable resource and has provided unfailing support - we should congratulate all of us for contributing to it and we should thank everyone for sharing their experiences. Through that knowledge we have been able to withstand flares and bad days and are now able to look to the future and hope.
Thank you all.
I agree purpletop...I look on this site often when I get scared and feel really bad...invaluable support...
Thanks again purpletop, yes we all should realise how important this site is. There are people who are clearly, really Unwell, yet still have the time to help someone else on here. Not even our nearest and dearest, can support us like other members do on here. I'm only sorry that I was a dinosaur for so long, not getting the internet until last October. I would have got through the hard times so much easier. Now I am trying to help members with problems I had years ago, and hoping I get the same help for my ' newer'problems now. I didn't want to scare anyone with this post, and I hope I have not. I think like you, it's good to see that we are battling through it everyday, and still surviving. Isn't it wonderful how so many faceless, nameless, strangers, can be so caring. Take care.
I had a lupus last 26 years ago when i was 16 years old n since then i m taking medicines n uptil now its wont go in remission ...i was in stiroids for many years n now in myfortic ...but it now manageable now
Thank you sazeela for replying. So glad you are managing now, it is so hard sometimes. I keep hearing good about myfortic, and also myco. I'm going to ask about this. Take care.
Hi I've had lupus 15 year.i was fine with steroids then had a flair up all joints hurting had to have bed rest and they put me on injections methotrexate stopped joints hurting made me ill for a couple days
Hi
I was diagnosed in 1986 at the age of 26. The medication that I was given at that time Steroids hydroxclorquine has caused many of my problems. I still take them and now have to take methotrexate. Saying that I would say that my lupus is under control but I have all the problems from the drugs over the years like osteoporosis plus fibromyalgia and now I have myositis. So while yes the lupus is under control all the symptoms still cause as much of a problem as when it's active. The worse thing for me is I had lupus with cns involvement and that has caused the most problems memory lost mood swings and anxiety like you wouldn't believe.Sorry sounds more like a moan then a constructive information sharing.
Hi angus50, thanks for your very helpful reply. It seems you also have gathered extra conditions over the years. The cns must be awful. I read about it on here often. In my simple 'lay men's' way, I feel that if the lupus is controlled, then you wouldn't develop all the other secondary conditions. Maybe I am ignorant about lupus, but I also have lots of secondary others!!! Control the lupus,.....THE RING LEADER...... And the other bullies will go away too. I have been on meds for years now also, and those problems are hard to seperate from active disease. Your answer is very helpful, and thanks for taking the time to share.
Had lupus 45 years,!! holy moly must be getting older!! since teenager with sun sensitivity. Had pericarditis painfully, for near 8 years, now ok with that, but joint pain, fatigue, etc. From my interest in vitality,health, lifestyle, wellness and celebrating living life, I'ave been 'lucky' in not needing medication, except pain relief,though it's been offered lots by medics ( but when put on the spot asked older GP would he take them in my situation, he said if I can cope without do that, as they can be less effective with time for some people.) Activily chosen to do what ever I can in lifestyle, food, herbs, attitude etc. Has the disease got worse through the years? Yes more variety of symptoms now and then, and slight increase in severity and no, times where it's 'mild as'. Interesting reading such a variety of experiences folk are having. Best wishes to all.
Thanks oak tree for your input. Fascinating info, no meds for 45 years!!!!! Your reply will assure many members, who are dealing with lupus through natural self help remedies. Long may you continue with your 'regime', I think your stamina to keep pain meds at bay, is remarkable. Thanks again.
Hi yes I have had it for 18 years but only recently diagnosed! I had parvovirus 18 years ago and it kicked it all of. As I live on a tiny island the rheumatology dept has not been that great at all and it was only when I pushed for second opinion that I finally got diagnosis! Luckily for me gp knew what it was all those years ago prescribed steroids for use when I needed them and generally supported me with it. Been on plaquenil now for four months and that is helping too. Do believe I wouldn't have half my issues now if I'd been diagnosed and treated sooner. Left me with high bp, hypothyroid, constant kidney infections and eye infections as well as sun provoked rashes mouth ulcers bad arthritis in right hand and knee inflammation in feet and jaw. All this was there but they kept on sitting on fence saying lupus like syndrome! Anyway at least I finally did get diagnosis! Advise would be ask for second opinion sooner if you feel your getting nowhere!
Hi manxie101, thanks for replying. I was diagnosed in 2005, and had to work hard to get it. Please don't think me ignorant, but I thought only dogs get parvovirus. You see, you learn something everyday on this forum. Yes, you will never know if hydroxy had been started sooner, you may not have had so many issues now. Thanks again for replying, hope you continue to get better.
I have had SLE for 23 years. As you can imagine my hospital file is very thick! Through that time I have had many ups and downs with the illness. For much of the time I was in denial. Even when I have been hospitalised for symptoms I was still convinced I didn't have it. I have had kidney damage, gastro intestinal problem, the usual rashes and joint pains to the point where I have been unable to turn over in bed. Throughout that time I often ignored what the doctors advised. I always took less meds than my consultant advised - just enough to keep me going! Worked full time as a teacher, constantly going for promotion. I think to prove to myself I didn't have lupus. Absolutely no sympathy required! It's funny really because it's only been in the last 3 years that I have succumbed to the illness. I am a deputy head teacher. I take my medications and listen to my body. I rest when I need to and I absolutely take all my medications. What made me give in? I think it's the times when I feel well. I realised that I wanted more times of feeling 'normal'. So I went to my consultant and said I am going to do what you suggest. I'm still going to ask lots of questions, I'm still going to challenge you about my doses of prednisolone and mycophenalate but if you say I need it I will take it. This I feel has led to my consultant really working hard on giving me the lowest doses of everything.
I would not advocate how I've lived my lupus life to anyone else but it has certainly helped me. I believe my life has been without limitations even though I have lupus. As I write this, I have just finished school for the Easter break. I have broken out in hives and some severe gastro pains. Probably going into flare. Hey that's lupus, I will survive this flare and even in the flare there will be precious moments and days for me, my children and my partner.
Hello shine44, thanks so much for your reply, and sorry you are beginning to flare. It is so very hard to control this disease by sheer will, alone. That was part of my reason for posting. In general, lupus does seem to get more active as the years pass, but also the meds, cause problems too. I do take my meds as like you, I want more 'good' days, but I realise for me, there is a price to pay. They are a necessary evil. !!! I often read posts from members who believe they can control their lupus the natural way. Good luck to them, each to their own, I say. The only thing that bothers me is that they are suffering everyday. They constantly post their ongoing symptoms, and I have to question their ethics. For various reasons I have stopped/started meds over the years. I know what works for me, and it isn't 'cold turkey'. Haha. Thanks again, I hope you get some quality time with your loved ones, for Easter.
Hi to all lupus suffers. I try to put it back of my mind but sometimes that doesn't work. Feeling tired of late and keep getting flare ups and feeling awful for a couple days
Ive had lupus for 18 years after my baby boy was born, I was nearly 17. I have to say there were times I wanted to die but now my lupus seems to calmed down and I'm seriously considering going back to work.
Thanks for such a positive answer...I wish you all the best, and hope your good health remains
i was diagnosed at 19, almost 15 years ago. I have had ups and downs (I have written at length about them) but generally everything is kept in check. I have more complications than most I think - I have a kidney transplant too - but the medication hasn't varied wildly (except immediately prior to dialysis).
I have been overmedicated and that has caused issues, and undermedicated and that has caused flare-ups (I think) but 90% of the time I have been undercontrol and able to live my life without others knowing what is going on!
I have to say that the NHS have been incredible and when I have had an issue with the drugs, they have tried to change to suit my lifestyle (I ride horses and so warfarin wasn't too good for me) as well as my health needs. talk concerns though with your doctors - I'm on steroids again at the moment but I don't want to have to stay on them as they can cause osteoperosis, so we'll have a chat about it.
The one thing I would like you to remember is that you can ask questions all the time even if it is "is there another drug that can do that?" and honestly, 90% of the time I look fine to the rest of the world.
Good luck
Tx xx
Hi tasch, thanks for your reply, I asked as I and others were interested about the long term effects. I too have had lupus 15 years, and for me, both the lupus and meds, have left their mark !!! My brother,(who does not have lupus), has had 5 kidney transplants, and now has home, haemo dialysis, so I sympathise with all that, entails. For me, I am visibly, worse, as well as on the inside. My mobility is poor now, and yes, all those steroids have not helped. You seem to have a good medical team, that does help. Am currently waiting for full liver biopsy results, which early signs are that the methotrexate has irreversibly damaged my liver. So in answer to my own post, the drugs are making me worse, not the lupus.
Thanks for taking the time to reply..V much appreciated.
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