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Discussion Starter #1
Doing a test for this next week!

Has anyone else had this done?

Lesley
 

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Hi

Hello,
No I havent had the test, but i have been prescribed sunscreen and told to wear it daily and to minimise sun exposure. What has lead your doctor to run this test? Im confused why I wasnt offered it!?
Hope it all goes well for you, what does the test consist of?
Best wishes, Pip
 

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Didn't even know there was a test for it since I never had one.
My neurologist send a letter to my GP saying I have a fotofobie.
Let us know how the test went.
 

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These tests are rarely performed and certainly not part of routine. Probably because there are not many specialist centres and it costs. I think they only do it as part of studies or in certain cases when they need to find out the exact cause of a skin problem. But that is my speculation.
I think Lesley's doctor must have a very special interest and also she is investigating the possibility of Lesley having prophyria so maybe the phototesting has special relevance for that illness.
Perahps Lesley will have the chance to ask the doctor exactly why and why it isn't more often done for lupus:)
It would be interesting to know !

:)
Clare
 

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The relevance to Lupus for the test at present is that I'm worse using Plaquenil than I was before taking as to having sun sensitivity/rashes! If people do have Porphyria then alot of drugs are not acceptable to use one being Plaquenil.

Well I've done the test and will wait for results - not sure how long they take as I forgot to ask.

Apparently there are treatments/meds available specific to photo/sunsensitivity that are different to those that are used for Lupus. These treatments/meds can be used alongside Lupus meds.

Lesley

Will post again when I here more!
 

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Discussion Starter #6
**** Update ****

Yippe!

I can report back that I dont have porphyria - thats one good thing!

My Dermatologist is still referring me to St Thom's Photobiology Unit (Dr Sarkany) - to get to the bottom of which lights I am indeed sensitive for better treatment to be offered!

Lesley
 

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greenhaggis;518351 said:
Yippe!

I can report back that I dont have porphyria - thats one good thing!

My Dermatologist is still referring me to St Thom's Photobiology Unit (Dr Sarkany) - to get to the bottom of which lights I am indeed sensitive for better treatment to be offered!

Lesley
Greenie,

Great news but I am curious as to how the test is performed?
 

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Discussion Starter #8
Three samples!

Urine 24hour sample - light proof container
Faeces - foil covered container
Bloods - foil covered vial

None of these samples ust see light (damages results).
 

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Discussion Starter #9
Info For Claire

Clare.T;512342 said:
These tests are rarely performed and certainly not part of routine. Probably because there are not many specialist centres and it costs. I think they only do it as part of studies or in certain cases when they need to find out the exact cause of a skin problem. But that is my speculation.
I think Lesley's doctor must have a very special interest and also she is investigating the possibility of Lesley having prophyria so maybe the phototesting has special relevance for that illness.
Perahps Lesley will have the chance to ask the doctor exactly why and why it isn't more often done for lupus:)
It would be interesting to know !

:)
Clare

I did ask and she did not know why she always want her patients to know whats causing something!

Although I see an NHS Dermatologist she is a Lt Col RAMC - perhaps being usued to Military ways of spending helps me with my treatment!

Lesley
 

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greenhaggis;518354 said:
Three samples!

Urine 24hour sample - light proof container
Faeces - foil covered container
Bloods - foil covered vial

None of these samples ust see light (damages results).
Interesting and so darn happy you do not have another thing to add to your list of illnesses.:wink2::wink2::wink2:
 

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Hello Lesley :)

One thing less to worry about, jolly good ! :) I wonder if she is doing some research. I am very curious what practical difference it might make.

All the best
Clare
 

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They do phototesting at my local hospital too, but are reluctant to do it because of the cost.

My dermie, after 2 years of dithering, referred me to the specialist as I am incredibly photosensitive to both sunlight and UV. I had a chat with the doc who said that doing the phototesting would be a waste of time and money as he could see just from looking at my skin that the sun and me don't mix. He then wrote to my GP with a diagnosis of SCLE without thinking it important to tell me!

It makes me laugh and quite mad at the same time that at a hospital with such a 'reputable' dermatology department that they can't even diagnose Lupus!

Good luck with your appointment and let us know what's discovered...

Sammy
 

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Well I have appointment scheduled for the 28th October with Dr Sarkany (Dermatology St. Thoms) - will post if anything useful comes to light that will be of interest to anyone else!

Lesley
 

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Well off I go today for this appointment!

Will try to find out (and remember) why I really need this appointment - perhaps they do want to use me as a Guinnea Pig 'who knows'.

Anyways, if I do find out something ineresting I will post back.

Lesley
 

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I hope the trip goes well, no rail hold ups, Lesley and look forward to hearing what you find out about the purpose of the whole exercise and how it will help you.

I am really sorry I can't get up to town today.
Cheers
Clare
 

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Good luck Lesley.

Please let us know how you make out.

I do hope the rail lines are kind to you.

Sending warm thoughts your way.:wink2:
 

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Discussion Starter #17
Well I got to London okay with no delays!

Wont trust google directions again though! St Thoms only a short walk from Waterloo, but google directions took me the very dodgy way:eek:!

Dr Sarkany and his team (saw them all:)), were all very lovely and thorough. Gave them my photo's of skin erruptions :eek:, which were laid out for all to see :blush:.

Thoughts of all medical staff were - rashes are either lupus (which I already have diagnoses of based on symptoms and bloods confirming)/ vasculitis of some sort / or a rarer option a side effect of Plaquenil OR a mix :rolleyes: of all three. Although they did say that because my skin feels prickly and burny when hot or in sun more likely to be vasculitis activity of some sort, but I never hold my breath with any assumptions or diagnoses as there are always exceptions to rule :lol:.

Outcome was a biopsy of skin on neck area and results and follow-up consultation in 3 weeks (already booked).

Bye for now!

Lesley
 

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Hi Lesley

Jusst read your appt details . . ..sounds all very promising . . .. I hope the biopsy comes back with something sensible on it and you can then get the correct diganosis and treatment. . . .. . I AM glad tho' that you wer treated well by the department and hospital, . . . ..

Take care

love Cathy x
 

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Glad you made it there ok.

Gee, 3 weeks must be a favorite time line with skin biopsies.:rotfl::rotfl::rotfl:

That is how long I am waiting too.;)

Keep us posted as to how the results come back.

Fingers crossed for you Lesley.:wink2:
 

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Glad things went well for you today Lesley. It certainly will be interesting to hear the outcome of the biopsy.

Take good care
Luv n stuff
Joan:rose:
 
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