Rheumatoid Arthritis & Discoid Lupus ...

[RachelD1972]

Hi everyone, hope you are all doing ok? I have had RA for 8 years and have recently been diagnosed with Discoid Lupus. I am currently on Leflunomide, Xathioprine & Abatacept (biologic) for my RA. My RA has been difficult to control and I have worked my way through at least 4 drugs so far. As the DLE diagnosis was a surprise my Rheumy has had a load of blood taken with a view to putting me on hydroxycholoroquine and removing Leflunomide. I have been asked to go back to discuss my blood results which is unusual as if I've had any previous blood issues I would normally just get a phone call or an email. My main worry is Systemic Lupus. I have noticed this year in the warmer weather I feel, putting it bluntly crap. Very fluey and my joints are going nuts. Is this an issue those of you with Lupus have? I have been sun sensitive since a teenager and my joint problems started when I was 8. I was not diagnosed with RA until I was 38. Up until now Summer was my respite from my RA but I am starting to hate it! Having an auto immune condition is like the gift that keeps on giving! x

[_jenc_]

Hi RachelD1972

I am so sorry you're having such a rotten time of it and you've got so much going on at the moment. I hope you are okay!

With 're to Lupus and summer/heat, it definitely affects me badly at this time of year. I always say I like spring or autumn best as winter isn't nice but neither is the summer weather. It does make me feel fluey, with my joints hurting a lot and generally makes me feel like crap! I really do hope your appointment with your Rheumy goes as well as possible and that you get some answers and some assistance/relief from medication that he/she may be able to prescribe. You've got us on this site for support as and when you need it too! Sending you a hug and wishing you all the best. Take care x

[RachelD1972 in reply to _jenc_]

Thanks for taking the time to reply. It's so hard to gauge what is going on when all these conditions slightly overlap and side effects from the meds can also be sun sensitivity. The discoid lupus is responding well to a strong steroid cream at the moment and as long as I wear between factor 30-50 and keep in the shade most of the time it isn't causing my skin to be worse. It is just my joints that are unbearable. I will have to be patient and wait until the 28th for my app to find out what is going on. Thanks again x

[leslieliesel]

I was Dx'd with subucate(sp) lupus..skin joints fatigue..not systemic..I can not let the sun touch my unprotected skin...and the heat is horrible for me now....I do take hydroxychloraquine..that clear up my joint pain...not fatigue...I'm sorry you got your new AI DX....I hate this also

[RachelD1972 in reply to leslieliesel]

Hi, thank you for taking the time to reply. I have been fairly sensible in the sun up until now as a side effect of my meds has been sun sensitivity. Although being ultra careful now. The discoid lupus is responding well to a strong steroid cream and I will have to wait until the 28th to see if my Rheumy will start me off on hydroxy. None of my meds have ever removed all RA pain and I get it daily so I have given up on a miracle drug. Thanks again for replying x

[leslieliesel in reply to RachelD1972]

I don't have RA, but before Hydroxy I had daily pain....ok rather that expecting a miracle we can hope Xx

[Chanpreet_Walia LUPUS UK]

Hi RachelD1972,

Light sensitivity is common in people with lupus; many people experience a flare of their symptoms when exposed to UV light. The most common symptoms are skin rashes, nausea, joint pains, headaches and tender/swollen joints. We published a blog article on ‘coping with light sensitivity’ which you may like to read here: lupusuk.org.uk/coping-with-...

Please keep us updated, wishing you all the best.

[RachelD1972]

Hi all, just to update, I tested negative for systemic lupus which is a relief. I have been weaned off leflunomide and have now started hydroxychloroquine. I am hoping this will help as I now how other discoid patches appearing. I did however get an eye test prior to starting hydroxychloroquine and they now suspect glaucoma. Happy days. Its one thing after another. Hope everyone is coping as best they can in the current UK heat xx