Recently diagnosed with SLE: Hi all , I am very new... - LUPUS UK


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Recently diagnosed with SLE

tinkslupus profile image
20 Replies

Hi all , I am very new to this was diagnosed a month ago and have seen the rheumy 2 days before Christmas . I am uncertain as to what will happen now , I have been given Hydroxychloroquine and the dr said regular blood /urine tests etc will be carried out at regular intervals . Is this arranged through the specialist or my GP ?

20 Replies
ShirleyGard86 profile image

It will be arranged by your rheumatologist

tinkslupus profile image
tinkslupus in reply to ShirleyGard86

Thank you for your reply.

Shann07 profile image

Hi! Welcome to the forum! I find this forum an invaluble source of comfort and reassuarance in the lonely world of lupus. I dont post very often but I read everyone's posts every morning and I can relate to every one of them. Its just like ive written the posts myself! Im diagnosed 5 years now & lets just say its been a rollercoaster journey of weird & wonderful symptoms! Wishing you all the best on your lupus journey 😊

tinkslupus profile image
tinkslupus in reply to Shann07

Thank you Lupielass for your reply , its been a comfort to talk and listen to other peoples symptoms and troubles , I feel like I've been going mad the last few years but finally after being diagnosed it has all fell into place . I'ts early days but I still feel some of my close family and friends don't get it , they look at me and don't see anything wrong its so hard to explain and to be honest on bad days I can't even be bothered to try and help them understand . All the best and Happy New Year :)

lupyjue profile image

Hi Tinks lupus

My doctor does mine.i have been taking hydroxy chlorine for 20 yrs just takes a while for your body to get used to it.esp tummy.if I don't take it I can not use my hands they get so painful. Good luck julie.

tinkslupus profile image
tinkslupus in reply to lupyjue

Hi Julie , I have a question about some symptoms I have been having over the last year . I have never fainted in my life until this year and it has happened twice one whilst a way in Turkey and the 2nd time at home about 2 months later . I go extremely hot all over and feel the need to lie on a cold surface , I felt sick and have been sick both times and then passed out , the first time found by my mother the 2nd my husband . I have had the same hot feeling several times over the last 6mths but remained conscious . Is this a symptom of SLE or just a virus ? .It happens usually first thing in the morning and its nothing like a hot flush I feel extremely sick feel like I will faint .

Cal66 profile image
Cal66 in reply to tinkslupus

It could be very low blood pressure, my mum suffers from it, she can be okay when sitting, but after standing 1 min, she feels like you as her blood pressure drops rapidly. You must make an urgent appointment with your GP to get it checked out as it may not be what I have suggested as it could be something or nothing, I don't think that it's connected to Lupus, but it's better to be safe than sorry.

tinkslupus profile image
tinkslupus in reply to Cal66

Thanks Cal66 ,I do have low blood pressure , so maybe its fallen to low on the odd occasion .I will see the dr tho as you suggest .

Cal66 profile image
Cal66 in reply to lupyjue

I hope that you don't mind, but what kind of problems do you have with your hands? The reason that I am asking is that I too have problems with mine due to a serious flair 19 yrs ago. I couldn't use them at all, as they swelled, stiffened & were very painful, I couldn't even scratch my nose, they are still not great, but they are improving very slowly almost as slow as a snail, but any improvement is better than none you just have to find ways around them.

tinkslupus profile image
tinkslupus in reply to Cal66

No i don"t mind at all when i have a flair my hands burn initially and then i have pain usually in my wrist and thumbs it is usually only one hand at anytime but occasionally both .I can't use them at all and it hurts to even to touch them.

tinkslupus profile image

Thank you Julie , I hope it kicks in soon so fed up of pain and tiredness, I got 2 more apts in the post this morning for dr and rheumatologist so they seem to be on the ball . Infact they have been brilliant. This forum has been great too helpful and able to talk to other people who understand . Take care x

Hollydebs profile image

Welcome to the forum Tinkslupus! This is a great forum. People will help you, advise you & share similar experiences it's been a lifesaver to me and has helped pick me up when needed!

Hydroxychloroquine can take a good 6 months to start taking effect in fact it took more like 8 months for me but does help with some of the aches & pains but is by no means a miracle worker so over time you made find you need additional pain meds. At the beginning you usually see the specialist every 4-6 months depending on your condition level etc. the specialist usually does all the blood & urine tests while you are there so that saves time as well. Don't be afraid to ask your specialist questions. Sometimes it's easier to jot them down before you go as if you're anything like me I tend to forget half of what I was going to say once there!

Good luck & happy new year to you!

tinkslupus profile image
tinkslupus in reply to Hollydebs

Hi Hollydebs Happy new year , I've found it really comforting already in the last few days had some great advice .Thank you for that info Christmas has took its toll Already not had a good day today but I'm hoping that with the right meds that will improve on the long run .

Cal66 profile image

Thanks tinkslupus for your reply, I also take Hydroxychloroquine but I find that it works best along with antinflamatories & those help control both the pain & burning. Do you have problems holding cup handles, glasses or using kettles, I do? I am very lucky because without my mum pushing me to do physio all the time, but I may have never got as far as I am now, even though she used to give me the dirty potatoes to put in the bag & now I tell her to do it her self.

Lupus does these strange things to people don't they? life is very unpredictable since I had lupus you never know what is going to happen to you the next day or even some times on the same day.

tinkslupus profile image
tinkslupus in reply to Cal66

Yes I do , holding a pan opening bottles etc i struggle with most things using my hands .. Physio sounds like my next step I see the specialist next week ..I'm armed with a list so that will be on it .No day is ever the same thats true its so hard to explain to someone fortunately I have an understanding husband . Thank you for all your advise I hope we continue to stay in touch .

Cal66 profile image

The best thing you can do is to keep them moving as much as possible, I couldn't at the time as they were too swollen & I was in hospital for 6 weeks. I still can't lift a kettle to make a hot drink, lift bottles of milk & when I am out I need to use a straw to drink with as I can't pick up cups, so I know how you are feeling & what you are going through.

Get a stress ball, tennis ball or it may sound silly, but use play Doo as it soft & pliable, they are good at keeping your muscles & joints moving. I have had this problem for almost 20 years, I still have set backs but every now & then I have a break through such as I can now lift & pore half a bottle of coke, which I couldn't do 6 weeks ago. It's been a long frustrating time for my family and I, but as I say things are improving & I am very lucky that I still live with my mum, sister & young nephew, mind you I'm not too sure if it's a blessing or a curse.

Keep in touch, let me know how you get on with your Consultant, if you just want too have a moan your more than welcome, I would give you my email address, but I don't know if I am allowed to in this site.

Paul_Howard profile image

Hi tinkslupus,

Welcome to our community. I hope that you find this site a useful source of support and information. If you would like more information about lupus, we have a free info pack that you can request or download at

If you need anything else please just let us know. Keep us updated with how you are doing.

tinkslupus profile image
tinkslupus in reply to Paul_Howard

Hi Paul , thank you for this , not had a great time over Christmas , exhausted , with the festivities . Happy New Year .

Paul_Howard profile image
Paul_HowardPartner in reply to tinkslupus

I'm sorry to hear that. I hope that you'll get a chance to rest and recover a bit now that the festivities are over.

Kirstie2009 profile image

I am on the same medication, I was diagnosed with sle about 3and a half yrs ago, they will probs do a full blood test and check white blood cells, red blood cells and that also they maybe do one for liver function x

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