Recently diagnosed looking for some advice please

Hoping someone on here can give me some guidance.

I’m 26 and have recently been diagnosed with Lupus, my Rheumatologist has not yet put me on any medication as I was only diagnosed in January. I’m really struggling to accept I have this condition and living with the symptoms is becoming depressing and putting pressure on my relationship and work life.

I constantly suffer with fatigue and have no get up and go! I ache head to toe and feel about 90 years old, some days even just walking up the stairs is an effort. My joints ache and are painful especially my knees, hips and ankles.

I also have regular flare ups of huge mouth ulcers, mostly on my tongue or inside cheeks. I haven’t yet found anything that helps the pain or reduces the size of the ulcer, I have been using Bonjela and Corsidil mouthwash which helps relieve the pain for a very short period but does reduce them.

Another symptom I’m having which I would say is the worst one for me, is my lips swell to 5 times the size they should be and are burning hot and itchy at the same time my toes also swell and are hot and itchy. I went to see an immunologist in March who thought its sounds like Angioedema and I was told to take Antihistamines (Loradine 10mg) daily and to double the dose if I felt a flare coming on. Well I did this last night and have still woke up with huge sore lips and toes! Once the swelling has gone down on my lips they blister and crack, the last time I had this in March I used a coldsore cream to relieve the dryness and cracking, well today I was told by the pharmacist that I should not be using these creams if I have Lupus and that I should go to the walk in centre to get a steroid cream. I also have itchy skin all over and rashes on legs (look like red pimples).

Every 4-6 months I also get what I think is thrush, not sure if this is related to any of the above.

I’m getting married end of September and am really worried that I’ll wake up on the morning of the wedding with a trout pout! I went to see my GP earlier this week and she advised she could not prescribe me any medication until she has spoken to my Rheumatologist and also because I’m hoping to conceive after our wedding they don’t want to put me on any strong medications.

Can anyone relate to this and offer any advice please?

Thank you xx

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7 Replies

  • Hi LoveHopeFaith,

    First of all welcome to the LUPUS UK community here on HealthUnlocked, i hope that you will find this forum useful.

    If you think it would be beneficial to you, i can offer to send you an information pack which has a few booklets and leaflets on the condition along with a copy of our 'News & Views' magazine which features a list of contacts across the UK who are living with lupus and are available as somebody to talk to. Also inside the pack is a list of factsheets and publication that we have available that you may want to order for more information. Just send me a quick private message or an email with your address and i will arrange for one to be posted out to you.

    If there is anything else i can do for you please let me know.

    Best wishes,



  • Hi

    I am really sorry to hear of all the problems you are experiencing at the moment. Reading up on literature available with lupus uk will I'm sure be helpful - it helped me get understanding when I was first diagnosed. That was nearly 22 years ago.

    There are medication regimes that can help get symptoms and lupus activity under control and make you feel human again. In my case a combination of hydroxychloroquine and NSAIs worked well for me, but there are other drugs and combinations.

    Does your rheumatologist have a help line or nurse practitioner you can contact to discuss your symptoms/ treatment?

    If it helps to know, I felt much like you until I got onto a medication regime which suited me but since then I have worked full time for the last 21 years and other than a few flares from time to time have enjoyed a pretty normal life.

    I hope you get the help you need quickly and wish you well for the wedding. My advice would be to read up on the lupus literature ... And go back to your rheumatologist!

  • I can't believe that you've been diagnosed and not put on medication immediately after! Get your GP/rheumatologist to start you on proper treatment, no wonder you're suffering! As for the lips - lupus is weird and unpredictable, so I'm not surprised anymore of its manifestations. Steroids would resolve that, so do go back to the rheumatologist and ask for treatment. If you're put on steroids and hydroxycloroquine (which has effect after 6-8 weeks), then you'll have the symptoms under control hopefully in time for the wedding :).

  • Hi, I am 67 next month and have been through most things Before they found out what the 'problem' was, sort of been there, done that and have the scars. The Best advice I can give you is 'Listen to your body', if it says Sleep, let it. For the joints I have always had a hot Bath in a morning to get me going and one at night to help with sleep. I took up swimming and YES it hurts at first, but it does ease up after a few lengths. A case of Helpful pain. Join LUPUS UK. and get the free leaflets for your Family and Friends, then they can at least try to understand and help. Glad you came on this site, you will get loads of help. Think Positive and try to get a few days off work Before your wedding and Rest as much as you can. Your Doctor can get a book from Lupus UK specially for Doctors and I bought a book for the surgery advice book shelf. It is still sadly a case of WE have to educate the Doctors. Don't know where you live, I live just on the border of Derbyshire and I go to the Sheffield Lupus group where there are young and old, we have a Laugh and help each other, see if there is one near you. Good luck. Luck Hope and Faith. You have made a good start asking for help. Hope you have a great wedding day. Just had my 46th wedding and hope you get as far as me. Gentle Hugs and all my

  • Having had lupus from age 9 ! Ive been dealing with this for over 32 years now, far far too long. Ive Learned that it does what it wants to when it wants to ! When you are having a good day take note and do what you can, on a bad day listen to your body. I live buy the words, The more I do the more i am able to do for longer.

    Alas we wont beat this, not in our lifetimes, but please dont forget you are not alone, you CAN and you WILL find the strength you need when its needed. Im married and have a son, a lovely garden and we go caravanning - anything is possible.

    Stay strong and positive, keep friends and family close to support you. have small goals and smile everyday, yeah I know sounds mad but give it a go.

  • Dear LoveHopeFaith

    Sorry to hear you're suffering, definitely push to see your Rheumy & get on some medication. Hopefully you will find the right combination that works for you soon. Steroids work well for me when having a flare up (which sounds like you might be experiencing right now) & the hydroxycloroquine keeps everything settled & helps me live as normal a life as possible.

    Once your symptoms are under control, you will be able to deal with everything else like work & relationships & accepting living with lupus. I know it's very hard, I was diagnosed when I was 25 (now 28) & it can take time to learn how to readjust but there is plenty of support out there. I found it really helped to read as much as I could & always listen to what my body is telling me

  • I'm really surprised that you weren't started on medication straight away! I'd definitely be pushing your rheumy to start you on something asap. Hopefully then it'll be under control for your wedding. Xx

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