New to Lupus: Hi This is the first time iv posted... - LUPUS UK


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New to Lupus



This is the first time iv posted about lupus.

I was diagnosed with Sjogrens about 6 years ago and it vanished within months but recently about 3 months ago I was so unwell with joint pains and fever like symptoms but without the temperature and had some

Chest discomfort went to the doc and was told just to relax and have a blood test I was then told I needed to see a rheumatologist and straight away I knew it was lupus it all came back with how I felt with Sjogrens but this time so much worse. I have to wait 2 months for an app.

Dr put me onto hydroxychloroquine and I started to get more unwell like I had a constant fever, more aches. I developed a dry mouth and eyes. My mouth and throat are sore. I had chest pain which am awaiting to hear if its plueritis or not. I now have a rash little red spots over my neck, arm and shoulders which itch bad. I spoke to the rheumy nurse today and she's told me to stop the meds and will get back to me tomorrow.

I feel alone and confused I have no idea who to turn to the GP try's to help but has no clue about lupus and they hardly have any apps to see me, the hospital just see me as a number. I feel like no one cares. I have 2 girls to take care of bless my hubby is a gem but it's hard feeling ill all the time, I try to be positive but something new happens to me every few days and I'm stuck as I don't know what's going on. I just feel like an emotional reck. Iv tried to see if there is any local lupus group I can try but can't find anything!!

I'm sorry I just had to share it with someone who may understand what I am going through xxx

12 Replies

hydroxyl does not suit everyone but most people feel better taking it. usually it takes several months to kick in. and is the least toxic treatment with less side effects. does not suit me makes me feel very achy so finally drs have agreed to me not taking it after 2 years. I would try and stay with it if you can.good luck all the people on here are really supportive you are in the right place

AnnieKhan your situation sounds similar to what I experienced when I was first diagnosed with Lupus. All the symptoms you described were the same as mines. I was also placed on Hydroxychloroquine and felt unwell at first... but after a few months I felt better. I can assure you it does get better. You will soon figure out how to balance your flares.. it seems like too much to bear but it will get better. The dry mouth, dry eyes, sore throat and chest pains do eventually go away after some time.

I hope you feel better soon.

Anniesa x

Bless you. Know exactly how you feel, seems endless. New symptoms and feeling awful, sounds exactly like me, been on hydroxy for 5 months, helped me a lot with skin problems and daily fatigue but still getting flare ups. Trying to come off of steroids at the moment which I have been on for a year, finding it very tough! Had new symptoms of dry mouth and sore throat and terribly sore sinus's. So horrible! I really hope your appointment comes through very quickly, the hydroxy has definitely taken the edge off for me and hope it does for you too. Stay strong. There will be good days around the corner very soon.

My rheumatologist told me the hydroxychloriquine can take 6 months to work so maybe the nurse should have kept you on them? But can understand her concern. I was told the tablets make you more sensitive in the sun and that I would come out in a rash which was very itchy! This hasn't happened to me but maybe that is what your rash is? have you been out in the sun?

I'm sorry you are feeling so unwell, I really hope you get that appointment soon! In the meantime I would keep on at your GP because if he realises how poorly you feel he might rush your appointment through, you never know! xxxx

hi zebedee the hdydro in time will help and reduce the sun sencetivity

ooh really? I don't seem to have a problem with the sun at the moment, apart from burning easily, but was told I must wear factor 50+ while on this drug xx

Hi AnnieKhan, It is all really daunting at first. If after a period of time you consider that the rheumatologist does not give you the support/medication/rheumy nurse helpline etc then you can ask to change. If you go on the Lupus UK website/or St Thomas Lupus Hospital one they can give you a list of experienced lupus rheumatologists. I had to do this after the hydroxy alone was not enough and I was in too much pain. After a early morning visit to A&E I thought enough is enough and I have to deal with this myself. So back to GP and very calmly with two good rheumy names on my paper I asked to see one of them. It was as easy as that. Where do you live? If you message Paul on here too he will let you know if there are any support groups in your area....hopefully there will be:) Stick with it, this condition can be managed but it takes effort, a change of your normal routine to pacing yourself and a good support network. With the right meds it can help. At first though it does seem as though you are on your own....I felt this but now have a good rheumatologist, good support group and family understand (as much as they can.....but that's ok).

It is a struggle at first .........but hang on in should also have access to a rheumatology nurse whom you can ring if you are in a flare up and they will advise. I have had to do this once sofar and it was invaluable in that they advised me to go to GP who verified a flare up. It is also worth getting the flare ups recorded by GP too as it will all form a pattern if you need it.

Thinking of you and wishing you lots of internal strength x

Ahh thank you all for your lovely supportive messages I really appreciate it.

Iv been to the docs this morning and he has prescribed me a cream for the rash he thinks its a reaction to the hydroxy. Iv never had skin problems before and am always fully clothes and there has been no sun but rain recently!

I am not wondering if I should carry on with the hydroxy as you all have mentioned. Am waiting for the rheumy nurse to call today which I hope she does and see what she says.

I live in Reading I would love to know if there are any support groups around.

I will try and be positive now that there will be good days to come soon :)

Paul_HowardAdministrator in reply to AnnieKhan

Hi Annie,

The Thames Valley Lupus Group previously covered the Reading area, but they had to disband earlier this year. I believe one of our volunteers is still holding the fort in the area, but I'm not sure if there are any meetings planned. I can send you her contact details if you'd like to speak with her?

Hi thanks Paul I have emailed Thames valley group hopefully they can get in touch.

Hi, im sorry your having such a rough time, I too have sygeonss syndrome, and was diagnosed about four years ago with mctd, mixed connective tissue disease, which has now manifested itself as lupus. The pains you experience in your chest is what I have I have costacondritis which is inflammation of the muscles and joints between the ribs, it can be very painful! I have ended up in A& E before as they thought I was having a heart attack. I now have been take prednisolone for nearly a year, this has given me my life back! I too take hydrochlorocquine, I have for 4 years now, I also take azathioprine which is an immune suppressant. The two combined have made a big difference. The sweats are common in a flare, as are drug reactions. I now take a pile of vitamins which I feel has improved my health also. I started off on methotrexate but it made my white blood cell count too low and generally made me quite ill, I know for a lot of people it can make a difference. I have joined a mctd group on facebook where we can talk to others it is with people all over the world its interesting because it discusses diet, and anything that we feel that can make a difference. My Name is Lara McDonald I live in Cambridge, there is a local lupus group which is fantastic, yet again you can talk to others that understand what you are going through. Do keep a diary, do take photo's and more importantly hold your ground! good luck! look me up on face book and I will send you the link for the lupus group.( If you have more than one autoimmune disorder it is called mctd. I have other things which also involve mctd, ie migraines, degenerative disc disease, raynaulds etc. ) Do buy yourself a sun umbrella its factor 50 and it is the best money I spent this year as the sun makes the lupus worse. ( I used to be a podiatrist and my specialty was Rheumatoid)

Thank you so much for your response Lara. Bless you I am sorry your going through a lot of pain. I wish we all could wake up well. You are right the doc told me it's my muscle inflamed in between the rib joint.

My rheumy couldn't get back to me so have to wait for Monday. The doctor seems to think the itchy rash is not connected to lupus but instead some kind of reaction. I am so unsure at the moment just wish I knew what's going on and what to do.

On the positive note am going to try and enjoy my weekend with my girls no matter what!

Thanks again x

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