I was diagnosed with discoid lupus about 8 years ago.My scalp is full of bald patches and sores nothing works. I feel on my own with this.

[lol-lou]

started suffering severe joint pain, lethargic, fuzzy head, memory loss, insomnia. Gp's tested me for SLE which was normal, so they GP, and rhyme chaps says it's all in my head. This is driving me mad as live on3-4 hours sleep in24 hours finding it hard to cope.

[LupusAdmin3 LUPUS UK]

Hi lol-lou,

I'm sorry to read that you are finding things difficult at the moment. Can i ask what tests you have had done?

If you think it would be of benefit to you i can send you one of our information packs which explains more in depth about the symptoms and diagnosis of lupus. Just send me a quick private message or an email with your address and i will pop one in the post for you. [e-mail]

Obviously, please feel free to use this forum as much as you need, but if you would like somebody to talk to we have contacts living with lupus across the UK who i can happily put you in touch with, or you can speak to any of us here at the National Office on 01708 731251 for advice.

Best wishes,

Hayley

LUPUS UK

[lol-lou]

I have had 2 biopsies which confirmed it was discoid lupus. On Methotrexate. My dermatologist cant see me until June, by which time it's burnt out. The joint pain, fatigue, insomnia, muscle pain and foggy head they will no do any test for as normal SLE test. I have been wondering if St Thomas would help but not sure if I have to pay.

I spend most of my nights sat on sofa itching, with hot wheat bags on my joints to get some relief.

[SarahHeney]

It could be fibromyalgia which many of us lupies have in addition to our lupus. ItIis diagnosed by a rheumy checking 18 pressure points and comes with the symptoms you have mentioned. It is treated differently to lupus, often with amytripiline at night for pain relief and as a muscle relaxant, and nerve pain type meds. Please askvto be referred to rheumatology so they can make an accurate diagnosis if it is this and treat you accordingly. Mine was triggered by steroid withdrawel. I have had it ever since. Good luck xx

[lol-lou in reply to SarahHeney]

Thank you Sarah for your advice. My physio (at last) has today referred me to a rheumatologist who is the same person who said it was all in my head! Lets see what he says this time. I see a GP on Monday so am prepared to be assertive to ask for specialist advise. I am willing to save and go to a private clinic if that's what it takes. These joint pains started when I started some Anti-Malaria drugs and had a bad reaction to them. Every one just assumed I was going down with flu, but have felt like that ever since. At least after a year of seeing my physio today she actually realised the exercises I had been doing on a daily basis is actually making it worst. She talked about some steroid injections which I have had before in my scalp and foot but after 3 months it had no affect. I have been on steroid pills but ballooned in weight putting on over a stone in 6 weeks which I am trying to shed as that will help the joints. I shall have to play the waiting game and see who says what. I know the GP will not know much about the condition as I've had to explain to them what exactly it is and the dermatologist does not specialise in discoid lupus. It would just be nice to be pain free.

Thanks for your advice. Best wishes Claire x

[2dogs]

I hear you, I have had 9 biopsies ( 4 in the last few months); which gave me a negative for SLE, a yes, maybe, unsure and finally a positive. Depending on who is testing me, if I am in a flair or not, all the testing does is pretty much just cost me money. I have a bag under my vanity and there are so many drugs/ steroids, anti-inflammatory, creams, capsules, foams...what I can say the first time I lost all the hair on top of my head, luckily it grew back within a year. That was a very tough year. The last time I had a major flair up & lost it again, I used apple cider vinegar. Just a cotton ball soaked in the stuff & dabbed it on the angry red/ itchy blotches. It worked so well that I use it on my rashes; legs/arms/ chest. I admit it burns, at first, but the relief is so much worth it... I take apple cider vinegar tablets now too. My last rough flair up was November of last year. I still have days of not being up to par, but I will take that over any flair-up. Hence, the reason all those meds are under my vanity. Hope this helps someone.

[lol-lou in reply to 2dogs]

2dogs, thanks for the advice.

[madmagz]

Hi lol-lou

I can totally sympathise as I started off the same way as you almost twenty years ago and felt at the end of my tether, I got a referral to a dermatologist and once I saw her things improved hugely! I still lose my hair from time to time and get sores now and then but they give me something and it heals and my hair grows back. I would recommend that you ask for this quickly as I ended up with permanent scarring in some places where it got so bad as I had infections and various other nasties going on, act now before it gets to that stage, please?

All the best

Madmagz x

[lol-lou in reply to madmagz]

Hiya madmagz, thankyou for your reply. My dermatologist has tried steroid creams of various strengths, steroid injection in my scalp, various anti-malaria pills and for nearly a year I have been on methotrexate, which to be totally honest I have had more bad flare-ups on this drug! As it happens I have now had a reaction to this drug and had to come off it. My dermatologist has decided to fit me in for 5 minutes before clinic at the hospital on Wednesday as she has realised I've not seen her for a consultation for a year. I normally get to see the nurse who just gets blood test results and gives me more test forms to have bloods done every 2 weeks. The annoying thing is now my flare-up has settled but I do have a lot of hair loss. My son kindly took photos every 2 days or so since February so she can see exactly what has been going on. I am just full of the mad itches on all the scaring. My main problem now is my joint pain, muscle pain, fatigue, insomnia, a head like cotton wool, clumsiness and the feeling like I am walking on thick foam and lastly distorted vision.My rhyume chap told me it was all in my head a year ago even though this flu like feeling has been with me for nearly 5 years. Just because they see you are on antidepressants you are 'labelled' as a head case!

I have had a test for SLE which the receptionist told me was normal. One Dr did mention fibro but then uttered it can't be and then asked me why don't I go back to work.................I was signed off 15 years ago due to a breakdown(I was working 140 hours a week) then I developed epilepsy and was signed off. I would love to go back to work but it would be have to be with employers putting up with my complex health issues.

I do actually see a dr, at my village tomorrow and will have to forget my shyness and write down a list and try my best to be assertive to get something sorted. Nobody should have to put up with being dismayed for years on end and there is only so long you can survive on3-4 hours sleep a night then be in constant pain. I shall keep my fingers crossed and pray pleased Lord let someone take me seriously. I shall keep everyone posted as to how things go on Wednesday lol

[lol-lou in reply to madmagz]

Hiya madmagz

Well just spent half an hour with the Dr at my village surgery. What a waste of time that was. He would not refer me to St Thomas's and agreed with the rhyume that all my joint pain and the Discoid Lupus was most likely all in my mind and then to be told how wonderful Mrs Thatcher was running a country on 4 hours sleep a night and if she could do that I could manage on the little sleep I get each night, and also would I be better off getting a job........................................I could have cried while walking home. My only hope is to see what the dermatologist says on Wednesday. Her receptionist phoned me to tell me she would not have my notes and could only spend a couple of minutes with me.

I did asked this Dr should I have to put up with being in pain for so many years. He just told me to get on with life so that was that. Somehow I don't think the dermatologist will bring me any luck either. My son is of the same opinion about me getting a job as he supports people like me on benefits. Will let you know how Wednesday goes. Best wishes Claire

[madmagz in reply to lol-lou]

Oh you poor love, if it's any comfort to you it was my dermatologist that wrote my referal to St Thomas' as she had all the results of my biopsies to send with the letter. It is your rite to have your health sorted and to get a second opinion if you feel that your doctor is failing you contact your Primary Care Trust they will tell you who to contact. Nobody should have to be putting up with pain like that, I did and when I got a second opinion I was wheelchair bound and needed surgery. I now lead a reasonably full and active life and only use sticks occasionally. I had to make a nuisance of myself but it got results. I knew that I was not imagining the pain and the fact that my legs would not work was not in my head but very real. I will not comment on Mrs T I might get kicked off the site for being political! Anybody who judges someone for being on antidepressants should not be working in the health service as they obviously don't have any empathy and con not in that case deal with a person in a fair manner, if you are unable to work at the moment and have to claim benefits then so be it there are lots of us in that boat, they should thank their lucky stars they are able to work.

All the very best with you appointment on Wednesday I hope that it goes well and that you can be assertive enough to get what you want from it.

Madmagz x

[lol-lou in reply to madmagz]

Madmagz

Thank you for being so understanding. Yesterday I felt totally humiliated by what this Dr I saw said. I did explain to my son last night I saw a job I would like to apply for and would he help me to apply for it as only a novice on computers, he gave me a hug and said 'you can't work mum, look at you - you can't lift or turn things as you are in constant pain' That is the first time he has actually acknowledged what I am going through. That meant so much to me to actually have him believe me, perhaps I have been too down on him in the past.......He then told me the grass needed cutting! lol

My son got rather annoyed when he found out the Dr told me living on Imodium pills was my problem. Son I can say I do have a son who does listen, but does not like to discuss things much. I did think to myself last night was I ready to come off the antidepressants but I have never had chance to grieve over the death of my dear husband. So perhaps stay on them until I can get sorted out with counselling via cruise.

It's 2am and I have been up for an hour! Perhaps I should write to our dear David Cameron asking for his job as Mrs T can do it on little sleep so I could help him lol !!!!!!

Regards Claire

[madmagz in reply to lol-lou]

Oh Claire, firstly I have to applaud you for keeping your sense of humour going secondly my thoughts of what Cameron thinks of us "Little People" are best left unsaid - I am off today to the European Election Launch for the party I am standing for on May 22nd! Our children do see and understand more than we give them credit for really but they sometimes don't really know who to talk to about it - that is why I had mine attend a young carers group, as they were my carers from such a young age that way they had sombody they could turn to if they had worries, even now in their twenties they still get Christmas cards from them.

I am a great believer in having counselling before you can make progress in life so that you can deal with the demons in the past, I am so sorry to hear of your sad loss that must have been a terrible thing to go through and it sounds like bereavement counselling might be a good idea for you.

I would suggest before you try to get a job why don't you try volunteering a few hours a week in something you enjoy to see how the fatigue and pain affects you/ I am a volunteer worker and get a great deal of satisfaction out of it, I have gained loads of confidence and made lots of friends since I started doing it, the managers are very sympathetic to my health and tailored my shifts to suit me and if any time I can't make it I ring up and they know they don't have to get anybody to cover me as I am an extra pair of hands on top of the team of paid staff. It also keeps me in touch with my chosen career which I had to give up due to my health.

Keep your chin up and I hope you managed to get some sleep

Madmagz x

[madmagz]

Oh you poor love you certainly have been through a bad time with things, like myself. You don't say whether you took Folic Acid while on the Methotrexate I take both and while taking both I have had much more success, also methotrexate comes in more than one form it works better for some in injection form better than tablets. Have you had tests to see if you are photosensitive - this was a huge turning point for me. I found that any form of UV light was making me bad which includes low energy lighting and florescent lighting. I know that a lot of people have a very low opinion of taking steroids but I take a fairly low dose of prednisolone and it helps a great deal, if I flare I sometimes have IV steroids too and it does make a big difference. I do take calcium and vitamin D to look after my bone strength and have a bone density scan every four years I have my calcium and vit.D levels checked regularly too. As I am photosensitive I cover my skin with fabrics that will block UV rays and any exposed skin I apply at least a factor fifty sun cream and reapply during the day. I always wear gloves, scarf and something on my head. At the moment I use betnovate scalp aplication when my scalp starts getting itchy and Protopic ointment and Epaderm on dry patches. There is no one test for SLE it is a multitude of different things that tells if you have it. It is possible to work with epilepsy I have had it since childhood it is a matter of getting the drugs right some of the symptoms you mention may well be side effects of drugs to control seizures. I sincerely hope that you get some support and someone to listen to you soon love, keep your chin up and I look forward to getting up dates from you,

Madmagz x

[lol-lou in reply to madmagz]

Dear madmagz, gosh you were quick in replying!

I am still on high dose folic acid. I am very sun sensitive and normally spend sunny days hiding in doors out of the rays. Factor 50 is slapped on even in winter. I have had 2 bone scans and they have shown lots of bone thinning so on medication to prevent more thinning. I am always in gloves and granny vests as under garments as I really feel the cold. I did take prednisolone as a high dose tailoring off to a low dose for 6 weeks, but heck I put on weight. Other than that the only cream I now use is dermovate when raw during a flare-up and an excellent moisturiser QV cream which I can use on normal dry skin patches as well. That's about it cream wise. When the flare-up are in the corners of my eyes or lips I just have to put up with it. As my skin has always been very sensitive I do have to be careful. Nobody has ever offered me vitamin D or calcium nor had my levels checked. All I know is my sodium levels are low.

I will keep you posted.

Thanks again for your advice and support. Best wishes Claire AKA lou-lou

[madmagz in reply to lol-lou]

Hi Claire, we sound like two of a kind, I also had low sodium levels until they dropped so low that I could barely stand and I now take twelve 600mg slow sodium tablets a day, these have made a very big difference to the way I feel and the way I heal as sodium helps the body repair itself, it sounds like you could possibily benefit from this as well as having your calcium and vitamin D checked. Another thing that I have used since going to my dermatologist which may help you is a soap substitute instead of soap, as soap dries the skin out but this soap substitute (Dermol 500) does not. If you are very photosensitive it is possible to get filters for your windows to reduce the amount of UV entering your house.

I look forward to hearing from you again, stay positive

Madmagz x

[Whathappned in reply to lol-lou]

Hi

I can't believe what I have just read. What a dreadful GP. Are there no others in the practice, because you need to see someone else! They have no idea what your describing and have no right to expect you to live with these things. If they are the only one you need to move gp's. I think they have forgot what the G stands for general- they are not a specialist. Fingers crossed that the dermatologist will see things differently.

[lol-lou]

Hiya madmagz and whathappned,

Well I walked in to see the dermatologist in the consulting room only to find two students, I did say 'oh I see I have company', not once was I asked if I minded them being present (I would not mind, but nice to be asked all the same). She was shocked at how much the discoid lupus had spread. I did ask her if she could be referred to St Thomas's she bluntly said no. I did explain about the long standing joint/muscle pain etc etc she told me that was down to my GP to deal with she only dealt with skin. I did ask about various tests and was told there was no need for that. In the end she decided to inject the areas affected with steroids. That was that she said see you in 8 weeks, then continued chatting with the students.

In a foul mood back at home with my dear cats and dog to calm me I phoned my Dr's surgery and explained to the receptionist what had gone on with the Dr I saw Monday and today and told her it was no good I need to see someone who will take me seriously, amazingly she got me an appointment with another Dr for Friday. So here we go again. I have written a list of exactly what I would like answers to without being demanding.

I did do some research in to if I could change Dr's to a practice in town but as we have two surgeries in a small village they could not do that.

Anyhow lets wait until Friday and see how I go.

Thank you both for you care and understanding. Have a nice day x

[Whathappned]

Lets hope the next Gp is a bit more empathetic. As you say go with your list of symptoms. If they want to deal with them separately point out that you have come because you feel they are all connected. Don't be fobbed off. I find it unbelievable how the last one spoke to you. If there are 2 surgeries ask around see what people think and move if it sounds better.

GOOD LUCK

[juliekendell]

I am totally amazed at how you have been treated lol-lou by your GP and the specialist, the GP sounds as if he needs to retire and the specialist needs reporting to her clinical lead, they both have a duty of care towards you which they have failed to deliver. Have you phoned St Thomas to see if you can self-refer? In any case, I would advise you when you go to see your GP go in ready to state your case. Do your research, I have found this helps and does but you on a better footing with the GP. If need be write down points you want to put across, again use your research to back up what you are saying, normally once the GP sees you understand what you are stating they are more likely to agree with you. You must stay focused, I am sorry if this sounds harsh, but having worked in the NHS I learned how to address issues and get results.... I was always lucky, in that I knew who I needed to speak to before I went to see my GP, and then it was only to inform my GP whom I needed to be referred to. Good luck on Friday, I hope you have good news to report. I too have been diagnosed with Discoid lupus in April this year, I'm waiting to see a Rheumatoid specialist in July. Julie