new to lupus

Hi there I will try to keep this short I have been suffering for some years with painful swelling in my joints, extreme sun sensitivity, rashes, stiffness, constant fever, headaches etc the list goes on. After seeing a new GP 3 months ago I was found to have ESR of 69 & positive ANA, she then emailed a reumatologist who told her to refer me urgently & do more antibody blood tests. I was also send for kidney & liver ultrasounds & a chest xray. I saw the rheumatologist this morning and he diagnosed me instantly with SLE & Raynauds and sent me home with a prescription for hydroxychloroquine 400mg. This is all a bit of a shock as I didnt expect to be diagnosed on my first visit. I have been lurking on the website for a while but did not want to post until I knew for sure what was wrong with me. I understand I am very lucky to have been diagnosed so quickly but am struggling with the shock of it all moving so fast

polly xxx

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13 Replies

  • Hi pollymum40, I understand the shock from it all I was told back in April (over the phone) I had lupus sle now I'm on around 25 pills a day trying to keep the pain an flare ups under control, took a cortisone shot about a week ago with no help from it what so ever,been having really really bad headaches that made my teeth hurt and my vision blurry dr told me yesterday I have a really bad sinus infection an she put me on a antibiotic and a steroid to take for 2 weeks! Been loosing my hair (looked that up well it can be a side effect of lupus an or the lupus meds) all this is a lot for me being 33! I never thought 33 would feel like 80! I have never known anyone with lupus so Google has been my best friend lol! Hope you start feeling better now that you are on some medicine! 😀

  • Hi 1TeiaMarie

    Thankyou so much for your reply it is a huge shock isnt it he asked me today if I had any questions but I was so in shock he just said take your time & go over it all then when you come back we can answer any questions. Wow 25 pills a day is a lot is that 25 seperate medications . I am pretty scared at the moment as it is already really bad & im scard of getting worse.

    polly xxx

  • Pollymum40

    #1 pill in the morning for a under active thyroid,#2 soma 350 mg 2times a day,#3 bupropion 150mg 2 times a day, #4 meloxicam 7.5mg 2 times a day,#5 Xanax 0.5 up to 4times a day/ as needed,#6 albuterol 90mcg inhaler every 4 hrs/ as needed,#7 levothyroxine 75 mg 2 times a day ($90.60 for 60 tablets),#8 hydroxychloroquine 200 mg 2 times a day #9 quetiapine 25 mg at bed time for bipolar an to sleep,#10 nexium 22.3 mg 1 time a day,#11 omega 3 300 mg 2 times a day,#12 women's multivitamin 1time a day,#13 biotin 5,000 mcg 1time a day,#14 vitamin d 5,000 iu 2 times a day,extra strength Tylenol 2 pills every 4 hrs,#15 Advil 1 pill every 6 hrs,#16 miralax 17 grams every other day,#17 prednisone 10 mg 2 times a day, and an other steroid an antibiotic I'm picking up today for a really bad sinuous infection! Wow it was a lot more than I thought after I got all the bottles out! Didn't feel like that much! But I don't take the inhaler as often as I'm supposed to an I try not to take but 1 or 2 Xanax a day! All depends on how bad I'm hurting! The Drs have been trying for 3 or 4 months to get a flair up under control with all the meds an a cortisone shot an still in a flair an a lot of pain in all my joints an most time in my bones too an once or twice a month my skin hurts for a sheet to touch! An buying sulfur free shampoo an conditioner an a hair mask to try an help with all the hair fall out! And an appointment with my rheumatologist Thursday at 7:30 am for more test an blood work an what ever else he wants done.Hope you don't have to go through all I do an take as much as I do!

  • Hi Polly,

    Welcome to the LUPUS UK community here on HealthUnlocked.

    Would you like to receive one of our free information packs? Inside the pack are a few useful booklets and pieces of information which may help you understand about the condition a little more. Just send me either a private message or an email with your address and i will pop one in the post for you.

    Best wishes,



  • Hi Hayley

    Thankyou so much that would be great as I am pretty clueless at the moment. I will message with the adress details

    polly xxx

  • Best advice I can give is listen to your body. Keep a journal and record all your symptoms. No two of us lupies are alike. Dont be afraid to try a new medication and if your doctor wont listen to you find one who will. This site will be a godsend for information. Keep Learning, keep your chin up and have faith this will work out eventually. You are very lucky with the quick diagnosis.

  • Hi abby1649

    Thank you so much for the great advice. I have to say so far the GP & the rheumatologist have been so supportive of me & I had more or less an instant diagnosis. I don't know what I would do if they did not listen to me because im not a forceful person. The main issue I am having at the moment is accepting that I am ill as I am a very independant person & like to look after others. The diary idea is great that is something the GP encouraged me to do before my hospital appointment & was repeated by the consultant today. Also they said I must be more open with my symptoms instead of trying to pretend I am well when I am not. The consultant has told me to wear high factor sun cream & rest whether I want to or not so I will of course take his advice. My youngest child is only 10 and is a very active boy so this is difficult lol.

    polly xxx

  • Oh Polly. I wish you well. I too have a hard time accepting help and admitting when I dont feel so great. Just know you are not alone and we are great sounding boards because we know what you are dealing with. Sounds like you have a good medical team and that is 1/2 the battle.

  • Hi and happy you got quick diagnosis and prescribed some meds that will hopefully help.Hydroxy can take a few months for full affects but you might just about caught up with yourself from the shock of it all.Good advice from your other replies so not much more I can add except thinking of you and hoping you get all the help you need.


  • Hi Pollymum

    I was diagnosed in 2010 when my son was 11. It is a big shock at the start so just take your time as it sinks in. Don't Google, but get your reliable info from Lupus UK, LFA, The Lupus Encyclopedia is also a good book to order. The Rheumatologist will check your bloods before deciding on any further treatment required. We do tend to end up on quite a few meds, but the best advice I can give you is that life does not have to end with a lupus diagnosis. Yes, it will be different and there will be adjustments to be made. In my case I eventually had to stop working and my hobby performing in musical theatre. However it is still perfectly possible to have a happy life, quality time with your son and find new friends as well in the Lupus community and in new interests. I joined a community choir! So, it is not the end of the world but the start of a new and different life. Allow yourself to go through the grief cycle and then, rather than accepting lupus, just learn to tolerate it ;-). Good luck xx

  • Interesting how more and more people are being diagnosed with lupus as the western world and way of life becomes more and more technological, toxic and polluted!

  • I agree caan!

  • I too,was shocked with my diagnosis! Came out of the blue!Funny,with me my first bloods with my GP said yes...then went to a rheumy that told me no! Then another Rheumy with blood work came up positive.

    I wanted 2 specialist opinions. I knew something was off with me.

    The horrid hand/ wrist pain,losing hair and no energy!

    I am on Plaquenil, too.It took a long time to kick in.

    When first diagnosed by my GP,I started predisone, but I have spine issues,and was told I can't stay on them for long.20 mgs day.I was weened off them slowly.Just on Plaquenil now.

    I was told I have a " mild " form of Lupus.Is there really such a thing??!!

    My lungs became involved when I came down with pneumonia. I was coughing up blood.A CT was ordered and it showed spots in my lungs.

    I was told to wait 3 months and redo the CT scan.I did.This time with a contrast dye.Luckily instead if growing,they subsided!

    My lungs feel better now.I couldn't even go up a flight of stairs at the time,and they hurt so!

    As we luppies know ,infections come easy to us!

    No more lung pain! My rheumy told me Inflammation sometimes hits us luppies in our lungs.

    Now I am still in hand / wrist pain,Spasms... And throughout my body.

    I have the common mottled purple Lupus rash on my right thigh,and pimple like sores on my scalp!

    I see my Rheumy this coming Monday, and he will draw blood and I will tell him of my newest problem,the scalp sores.

    If only this Lupus arthritis can be controlled!!

    Yes,I was shocked,too!In my craziest dreams did I expect I feel your pain.

    I have Raynards, too!My hands,the oalms and fingers turn white and sometimes purple from the cold!Now they look normal in color,but if I touch something real cold,well they change!They say these auto immune diseases usually if you have the one,well you have the two.

    How are you feeling?

    I too kurked around the site just reading.

    When I came to your post,I thought I'd reply as it sounds all to familiar! Dunkxxc

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