Need answers

hello guys. I have been diagnosed with sle but the last week I have been feeling much worse than usual my tablets are not helping as they have done. I am unable to see the doctor to find out if I'm having a flare as they don't know nothing about lupus I can't get hold of my rheumatologist no his receptionist they never pick up the phone or when I leave a voice mail they never ring me back. I have sent a e-mail to my rheumatologist but still no reply. Anyone else have any idea's in what to do next? I am completely stuck need answers and don't know what to do next even tho he has said to contact him immediately if anything goes wrong.

29 Replies

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  • Hello Blondie

    It can be difficult at first as your GP may not have much experience with Lupus, but they normally get better.

    It can take a while for meds to really kick in, so don't give up on them.

    Flares can affect people in different ways. If it is pain, standard painkillers like Ibuproven or cocodamol can help. Another is that you just feel exhausted, and all you can really do about that is rest as much as possible. If you work, talk to your boss and to family so that they begin to understand about sle.

    Keep trying to contact your rheumie as they are the ones who need to know how it is affecting you. If they aren't getting back to you, try the main switchboard as they can try other numbers, but they don't work 24x7

    Best of luck


  • Thank you I am like a walking Chemist I am on two sets of pain relief it's co-codamol and naproxen. Also on hydrochloroquine sickness tabs acid tabs vertigo tabs on turbo halers. No one understands what it's like only my mam as she has been to my Appointments and suffering with all different things herself.

  • Hi,

    Would suggest that you insist on an appt with your GP. Lupus is not a disease to be messed with and if you are having a flare, he/she can contact your rheumatologist for advice. Your rheumy will probably respond yo a GP! Unfortunately with the NHS in the state it is, getting appts is becoming increasingly difficult. Many rheumys now have a dedicated nurse with their own contact number. It might be worth asking if your local dept operates this system? Good luck. Xxx

  • Hi rockhopper I could do but I'm fed up of them pushing me to one side. My gp toled me there he don't know anything but I have had a booklet on sle sent to him.

  • Oh that is frustrating, but your first port of call if not the rhumy, is your dr, so insist he sees you right away. But do give the meds some time to work, and try not to stress too much because that makes the lupus worse. good luck

  • Hi malteser. I know stress makes it worse. I got diagnosed 5 months ago now. It is frustrating and annoying. I think I will take all your advice and go to the doctor but it is doing my head in being pushed to one side by my doctor.

  • It seems to be an overall problem, not just with lupus patients, as my daughter is ill and she's having a mega time trying to see the appropriate specialist, even though she has private insurance. I know that the system is so different in the uk... and if that's where you live, I sympathize. It didn't use to be like that in my time, and I recoil to think I am moving back if the system doesn't improve, especially since I don't have private insurance, hard to get once Lupus has developed, because unfortunately, everything is blamed on lupus. I have been known to go straight to emergency when I felt I was being ignored, and I did get all my questions answered by kind nurses, but it shouldn't have to be this way, at all. You don't say what you mean by ''getting worse'' not that I am a dr, but I have had Lupus (sle) since I was 27 yrs old and I am 60 now, so if you have a specific question, ask it right here.

  • I have been feeling awful for the past week my muscles have become weaker I can't lift my arm without it hurting my bones are seesing more I can't walk a few steps without my legs and ankle and knee joints hurting. My fingers and writs are painfull. My fatigue has got worse I fall asleep during the days and early night without realising I am tired all the time. I am taking my pump more often as my chest is getting tighter more often. I get the shakes more often I feel like my whole body is vibrating. I have to force myself to do things otherwise I would be bed bound I am taking more tablets for the pain more sickness and vertigo tablets. The redness on my face is looking more prominent and I am getting in cold sweats.

  • In which case, I would head to the A&E... How many times a day are you taking the pump then, its not safe to do so more than every 6 - 8 hrs, and which would give you the shakes anyway. And likewise with the tablets, stick to the dose as hard as it may sound, otherwise, you are doing more harm than good. If you are in the UK, I would suggest you contact NHS direct now, and they will either send out the dr/ or/and may send you to the hospital, which personally that is what I would do, having read your reply. x

  • I will ring. Thank you. I'm taking my blue pump 3-4 times a day and my steroid pump in the morning and night. The shakes they blamed on anxiety but it's worse than it was

  • Yes, you should call them, and tell them the dose you are taking, because you are not meant to take more than 2 a day. I am not familiar with 'steroid pump' .. we don't have them here, I am in Malta. We take prednisone or other similar meds, but def., no pump. Interesting though. Well blondie, please call them, and eventually let us know how you fared.

  • The steroid pump you take in the morrning should last all day and the blue pump is there when you need it but shouldn't be that often that how it should work. With my pain killers I am taking y dosage but I was taking less but lately I have been taking the whole dosage. Thank you for your advice malteser

  • I appreciate the explanation of the pump, because we don't have them here but I will bring it up with my rheumy. I think as you are fairly new with this condition, it is best to follow your dosage intake according to what your rheumy and Dr's tell you. As for the pain killers you will eventually adjust them according to your needs. Trust you have by now contacted NHS direct and got the answers you needed to hear.

  • It's not a problem. Yes I will do Thanks again.

  • Hi blondie

    I also had the same problem with the rheumy never calling back ant my GP faced her and she ignored her too and I decided the best option was to move hospitals and I never looked back. Out if interest is it the royal free hospital?

    Best wishes


  • Hi Lesley-chard. I am in Swansea but have got to travel to Bridgend princess of wales hospital.

  • I just wondered if it was the same hospital. You need to be able to get help when things go wrong and I definately did the right thing changing hospitals

  • Hello Lesley isit the same one? I think I would be better off trying to change to my own Hospital,

  • If all else has failed send you specialist a letter. And point out how hard you have tried to get hold of him. This puts it as a matter of record. And is pretty much guaranteed to get you seen pretty quick.

  • Thaddeus I didn't think of that thank you I will do that thank you.

  • Hi. Ive found that going to local AE dept as there should always be a rheumatologist on call and they will always contact your gp and rheumy. I hope you dont have to resort to this but when needs must. Best wishes.

  • Thank you foreverfighter it is my last resort but I think that is what I will have to go there.

  • Hello, just a thought re: your inhalers -is it asthma you take them for,or are your breathing probs due to lung inflammation or pleurisy?it's just that a few years ago my husband, who suffers from asthma, was in your position ,taking his inhalers more and more, the steroid one wasn't doing its job and the 'relief' blue one didn't do anything to help.He made an apt to see our GP about this and was put on a different inhaler which transformed his life!He doesn't get all the chest infections he used to, can play football and go jogging without having an attack and has generally kept his asthma very well under control.I'm not saying you will be able to play football(!) but people can get left on the same medication which ceases to be effective, and it's always worth having a review from time to time as new drugs and formulations do come onto the market and medical conditions do improve or deteriorate.If your breathing difficulties could be eased you might feel a little better and more able to cope with your other issues. Even if your GP knows very little about lupus, he/she should be able to deal with inhalers! By the way, the inhaler is called 'Seretide 100' ,it contains fluticasone and salmeterol,which he takes once or twice a day, plus the salbutamol(blue) inhaler, which he will take only if he's doing something which causes extra exertion, such as running.

  • I do take them for asma but lately since feeling worse than usual my cheat is getting a lot tighter. I am on the red symbicort 200/60 and the blue bricanyl 0.5.

  • First things first, as some1 else has said, rest up as much as possible. What medication works 4 1 person doesn't always work 4 another & the same applies 2 different combinations of medications. Try and think whether there has been a change in u're meds recently, such as whether a new med has been added/changed or even if u've been prescribed a different BRAND as that too can make a difference. Also though, I'm sorry 2 b say, lupus has got a habit of making u feel crappy even when u're not flaring and have had everything under control. It's generous like that ;) In all honesty, SLE is different in all of us & affects us all differently so although I agree, u're GP should b more aware, it's a difficult disease 2 understand, especially if u have any other AI illnesses. I was diagnosed over 19 years ago & I am STILL learning new things. Hope u start perking up soon ;)

  • I am feeling better today I did have My Sunday rest it is hard to relax a. My mam needs help with her conditions and my partner has adhd and mental health issues that can make me stressed as it is hard for him to understand me and trying to relax is pretty hard I am always hiding what I'm feeling and putting a brave face on but since last week I just shut down. That's why I love this site just to talk to others the way I can't talk to my siblings.

  • Take care, I relate to you, I have a lovely GP but he admits that he doesn't know much about SLE. trying to get an appointment with my consultant only happens every 4 months, would like to see him when I'm in a bad way, the rest of the time he says "oh, you look well"

  • It's awful. What they don't really understand is you may look ok as make up can cover fatigue and discoid rash if you have one but you certainly don't feel it. My doctor toled me he dont know much about sle himself to. I see mine every 6 month's but you should have his work number to get hold of them direct rather than going through the system it is hard and frustrating when you need them the most they not there.

  • Hello guys just an update. My doctor didn't do anything about why I was feeling the way I was. I rung and e-mailed my rhuematologist but nothing so I e-mailed the nhs complaints department I mailed them last Friday had a letter on Wednesday and I got an appointment this Tuesday with him.

    If anyone is from the uk and need the nhs complaints e-mail and the company address please let me know and I will post it here. That's was the only way to get an answer also it got sorted quicker with them than me trying myself.

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