Getting a second opinion on drug induced lupus

[cathie]

Hello. Some of you may remember that earlier I reported problems with my last rheumy appointment at the beginning of october when I was told out of the blue that I may be in remission and also might be developing drug induced lupus (on the basis of a sadly swollen red face from exposure to a bit of sunshine). I wasnt happy with this and got some really helpful advice from NRAS.

I arranged to see a dermatologist to clarify what was happening to my skin. He referred me to this marvellous unit at Ninewells Hospital that investigates light sensitivities of various kinds (including to lightbulbs). They did patch tests and shone light at me. ANyway the provisional verdict is that I do not have lupus. I may be allergic to some sunscreen and my usual Nivea Soft moisturiser especially when in contact with bright sunlight. My general condition is polymorphic light eruption.

I'm putting this up here because its strongly connected to getting anti-tnf treatment. Apparently they are not suitable - contraindicated for people with lupus. So if I had been diagnosed with lupus I would have been excluded from a lot of the biologic treatments - and the one I'm on - infliximab - has transformed my life.

Apparently the Dundee photobiology unit is about the only one in the UK. They are really thorough and incredibly helpful. I have one more day of test measurements to do and then that's it - I will get a report and so will my rheumy!

So there you are. A very positive experience of the NHS. Battle with the rheumy isnt over, but I'm much better informed now.

C

[Hidden]

I think if you look back at old blogs and questions re sun ans sunscreen I mentioned poly morphic like eruption before, good news for you lupus is nasty and hard to treat I think probably worse than RA .

[cathie]

Yes I think you did. I have been given lots of things I CAN put on my skin, including a wonderful concoction called Dundee Cream. Its a tinted reflective sun screen specially devised by pharmacists separate from the Dundee unit! Interesting to know about anyway. Cant try it until the spring as the sun is too weak.

[earthwitch]

I'm so glad you managed to fight for that second opinion. I know of the ninewells unit as I had a friend go there. I really hate to think of the implications if you hadn't gone there - you could easily have been denied a treatment that could keep on working amazingly for you.

If the Dundee cream doesn't work for you (I couldn't use it because of one of the filler ingredients of all things!) then remember that you can still do the "cover up" strategy - making a feature of big hats, long sleeves, etc.

[helixhelix]

That's great Cathie! And well done for getting to see someone relatively quickly. Hopefully this will make your rheumy think again about the best way to treat you. It is totally daft how much we each have to become our own experts in order to negotiate the NHS. But at least it exists! Polly

[cathie]

Thanks ! It's very empowering but quite hard work to find out about these things. But I'm no good at accepting any authority which helps!

[watson3]

Hi cathie

Sorry for the late reply.

I am glad to hear that you had positive response from your appt at Ninewells.

I admire your tenacity, it is a dreadful situation when each and everyone of us has the need to fight for the correct diagnosis and treatment.

Well done my friend.

Love & light

Carole

[Hidden]

Hi Cathie - rock on Ninewells Hospital Dundee and you too for fighting the good fight to stay on your anti-tnf! You're an inspiration!

I'm sitting I'm the dining deck of the big ship in Aberdeen harbour watching the snow coming down!

Had a fine overnight sailing although I overdid it going to Christmas openings last night and stupidly had a cigarette with a drunk woman in a moment of reckless abandon. This meant that by the time I boarded the ferry I was incredibly sick as I don't smoke but just felt like doing something naughty while all around me were socking back the mulled wine?

Apart from that our pup arrives here at the ferry terminal at 3pm - she's coming up from Dundee. We have good friends who have just moved there - largely I suspect because of the Ninewells as the man is very old and often unwell. It's a famous hospital and if ever my RA worsens again I have thought it might be a good place to move to - our middle son is probably going to uni there as well.

I would dearly love to be a fly on the wall when your rheumy receives that dermatologist's letter!! Tilda xxxx

[cathie]

Tilda, I hope your puppy is as lovely as it sounds. We've finished at Dundee now and I'm feeling so relieved, though I still have to meet the rheumy to talk about reinstating my anti-tnf. I thought it might be interesting to anyone who has reactions to sunlight to know that my problem (not necessarily yours of course) was due to photoallergic contact dermatitis. Mainly to perfumes which are in most commercial creams. I havent tried these sunscreens yet but they have recommended Lavera or Lovea neutral face creams.

I'll blog about all this again in the new year after my due appointment with the rheumy. Although I am planning to talk to my GP about this experience. Maybe I should consider asking to see someone else who is less headstrong.

Hope you're all well today

XX

[minka]

they just dont get their facts right this must have been a big shock cos you belive what they say dont you

[cathie]

Hi minka. My father had just died so i wasnt really able to react as well as i would normally. What i didnt expect was for her to fling out an idea i couldnt check there and then. I did argue with her and got her to postpone the change in meds. but in future i will try to get drs to explain everything. The problem is when they come out with jargon. I think its important to know your rights and ask for a second opinion - its your right. And to remember that by making sure they get it right you may be saving the nhs money in the long run