Well, had Lupus/Connective Tissue Disease for 6 years now and was relatively settled on Methotrexate until last November when I started having breathing problems. Got told to stop the Methotrexate as they probably wouldn't help. The problem - found out eventually - was due to deep infection on my lung which, although visiting the GP almost weekly, had been missed until I could hardly draw breath, even began to think my time had come, no joke.
The end result is my lung partially collapsed and now due to scarring I am unlikely to get the use of the bottom half of my right lung back, so I am still having problems if I do ANY exertion whatsoever.
My Rheumatologist put me on 30mg day steroids to help me with my breathing and they have helped but I've also blown up, it's ok having a 'cheeky round face' when you're two but not such fun when you get to my age, I've also put on some weight but have really tried hard not to over eat.
Got referred to a Respiratory Consultant - ha, what a laugh, think he got his qualification out of a luck bag. I'm only just calming down from my appointment last week. Apparently there is nothing wrong with me, I just weigh too much and must go away and lose 6 stone then all my breathing problems will be over............ should have a sign on his door saying 'Welcome to the Twilight Zone' went in hoping to get some answers on my breathing/lungs came out thinking I had been at Weightwatchers!!!
Lost no time getting to see my GP, who nearly fell off his chair when I related everything to him, and am now waiting for a referal to a different hospital.
Feels better to get that off my chest!
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AngelaW
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i dont think i can beat that one but after having several blood test over 10 months and finally been referred to a rheumatologist by anather gp (not my main one) the specialist rheumatologist said i have lupus sle..when i went to my gp to get some medication she laughed out loud and said that she does not think i have it and the diagnosis is wrong! der!
i dont know wht knocked me back more my diagnosis or my gp's attitude.
Hi there,my daughter has been unwell for years since a small child,shes 26 and finally dxd with sle in Nov 2011,she had seen many,many g.p's ,consultants, as a child and as an adult,I would say at least 20 plus people,and finally it was by pure luck that she had to visit our local walking center,where a doc she had never seen before told her that she had lupus.she found out this week after seeing a renal consultant,that she needs multiple biopsies of different parts of her body,as he feels she also has a multi system vasculitis,as she has soooooooooo! many symptoms,also scans of heart,brain etc point to it.so she has definatley had the docs from same BAD luck bag that you have had.Sandy
Hi Sandy, your daughters story is so sad, it can be hard to battle the system when you aren't getting anywhere. Hopefully now your daughter has a diagnosis she will get the right treatment. I wish you both well, and send your daughter a big hug
Thank you so much for your kind reply Angela,so many people. seem to battle with the nhs for treatment,its so tiring for lupus sufferers,without the added stress.Take care Sandy
Hi Tintin, amazing isn't it, the arrogance of some of the doctors we see. I would start asking to see the other GP and drop your usual one, though you've probably already done that! I've also found the specialist nurses at the hospital to be good and on a couple of occasions when I've have a question that my GP can't answer then I've ring my consultants secretary. Good luck with getting settled on your medication and I hope you've found yourself a good rheumatologist! Take care, Angela xx
I have also got lupus SLE which has now damaged my lungs. My consultant has tried different medications along with steroids but my breathing continues to be a problem and of course putting on weight did not help my breathing.
I was given cyclophosphamide iv (chemotherapy) and had to have an infusion of steroid the day before to help with my immune system. This extra infusion of steroid caused me to blow up and my face looking like the moon.
As soon as this treatment was finished I put my self on a diet which was very difficult because I just wanted to eat.
My Rheumatologist has now decreased the amount of steroid I am on and now I am down to 10mg and because I have lost weight along with the chemo I am not breathless whilst sitting down and I can even walk around my home with easy breathing.
I have also got vasculitis of the blood vessels in my brain but I am thanking God for my consultant and the doctors at my GP surgery.
Thanks for sharing your experience. I'm slowly starting to come to terms with my lungs! I've just started on Mycophenolate and have to increase my dose fortnightly over 6 weeks and I've started to reduce the steroids - I'm on 20mg daily at the moment. I could probably do with losing some weight but I certainly don't envisage it will solve all my problems as the respiratory consultant seems to think it will, I assume he is just ignorant of the problems relating to SLE/CTD. I'm waiting for an appointment to the Liverpool chest hospital now and hope to get a few more answers there. Take care, Angela xx
I too was on Mycophenolate but it did nothing for me except it made me feel very fuzzy headed. Since coming off the Mycophenolate I feel a lot clear headed and for me loosing weight has helped a long with the Chemo that I had (I still get breathless and cannot rush about or walk far).
Please remember that with lupus what works for one person does not always work for another.
I Think your consultants should be reminded that each lupus patient respond differently so they should be looking at what is suitable for your needs and not worry about the cost because most of our treatment is down to cost.
A year ago I was told I had Lupus. That was it . No explanation just medication. Since then my Hospital appointments have been cancelled three times as the clinic is so busy.. If I have any problems I have to go back to the Doctor who does not appear to have a clue about Lupus. I get the feeling that because they cannot cure me I am out on my own.I feel really isolated and alone as very few people have heard of this illness. My friends do not understand that I cannot last on a day out so I do not get asked out any more.This leads to continual isolation as I cannot work .The only way I have gained any knowledge about Lupus is from the net.Where could I get some help to find out more about myself? Are there any private clinics that would help as the National Health system has really let me down.
Hi Freelander, I'm really sorry you've had such a negative experience. Being told you have Lupus can be frightening, I know I went into denial for a good 4 years then just started having sneaky peaks at the web to learn a little more bit by bit - it was the only way I could cope with it! I understand about the friends, I've lost a couple but then they couldn't have been such good friends afterall. Not that that helps.
I go to Wrightington Hospital to see a Rheumatologist, it isn't my local hospital, I drive about 1 hour to get there but they are brilliant. My consultant is great and we discuss my condition and medication together, if don't feel something is right for me it isn't just forced on me like I don't have a say in anything. Since I've had the problem with my lung they have been great and they have seen me every 4-6 weeks.
I've been looking on the internet and after seeing my GP I'm waiting for a referral to the Liverpool chest hospital, it'll take a good two hours drive but I feel it will be worth it to get to a good hospital.
If you are able to travel then try to find a good hospital on the internet and ask your GP to refer you. The NHS does seem a bit hit and miss from what I've read of this site, if you can afford private then go for it, if not then do please try another hospital.
Hi. Thank you so much for your reply. I feel really lost. I am going to investigate the private route just to get a good medical understanding of Lupus and how it is affecting me.
Freelander, the NHS "Choose and Book" system was designed to let you choose a different hospital/specialist to go to, based on personal preference, reports of good care, closer to family for support etc. If you have a supportive GP, they will help you with a referral to a hospital and consultant of your choice, even if you have to travel. I would try this NHS route first before going private. I am very lucky as my employer pays for private health insurance so that I am seen quickly - but my consultant is an NHS specialist - so I could see him either route, and will continue to do so even if I can no longer get private care - and my GP will support this as it is my choice. Obviously, I have a supportive and knoweldgeable GP which helps immensly. have a look at this link: nhs.uk/choiceintheNHS/Yourc...
LupusUK might be able to advise you on consultants??
Hi Freelander sorry to hear youre having a bad time after only just finding out about this scary disease which hospital do you go i go st thomas's they are sorta ok but yes very busy local gp not so good but then they only spend something like 2-5% of their training on things like this but usually at each gp practise there is atleast one doc who is a bit more of an expert in theses areas or atleast has a bit more of an interest in this areas, try to find out who that person is at your docs. I wouldnt reccommend too much web sufin for info though as i found it to be scaremongering and too much info can be harmful. try to deal with the symptoms you have right now rather than finding out what 'could' be round the corner as this just made me more depressed just deal with today, one thing at a time xx
Hi. I have now found I can go to my local surgery for advice any Thursday at 12 noon. when someone will be there that knows about Lupus! I have scared myself on the net so I am not going on there any more. I am going to concentrate on trying to deal with the tiredness only and see how I get on.I am trying to eat a healthy diet to give me more energy to get though the day.
Sounds like you have a plan already, good for you! Try to keep that kind of attitude to it in mind, you will learn to cope with this in time by finding youre own ways of living that your body needs specific to your Lupus XX
Hi there Freelander....I really feel for you, and empathise with the feeling of isolation. Have you sent off for the free DVD from Lupus UK yet? I've found that to be really helpful in answering the questions we need answers to....I wish that GPs would take the time to watch it!!! Real friends would also be prepared to watch this, and understand your predicament better.
Another source of help is the American Lupus site...although they DO bombard me with too much information....they seem to be years ahead of the UK, both in funding research and treatments.
This BLOG site has been a massive help - it is all about personal management (and that includes being assertive with the Medics...) Because it is such a multi-symptom condition, all they can offer is "trial and error" until they hit on something which suits each individual patient.
You do not say if you live on your own...it must be much harder to cope with if you are. Have you applied for DLA? I know money is not a cure, but it may go towards obtaining some care help, walking aids, or whatever you need. There are lots of voluntary groups also - so contact your local CVS to see if there is a befriending scheme in your area - just so you have someone to be a "sounding board" when life is tough!
Thank you for all this info. I am now getting help and advice from this site and beginning to realize that I am not so alone. I will work through all your suggestions.
hi angelaw many many thanks for your kind words. i am now just waiting for the meds to kick in so that i can regain as much energy as i can to try and live a normal life.
my gp's are ignorant regarding lupus sle. i dont look ill. i dont yet have any skin problems or hair loss. i am tall and look fit and healthy. this makes it difficult for people to understand that i am in constant pain and extremely tired.
you made me lol when you said you just look up bits on the computer to try to digest all the info. thats what i do!
its a great help to talk to people in the same shoes as me.
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