[rainbowmum]

Hi - Im sure I posted somewhere on this site before and cant find it now

I was diagnosed with Discoid Lupus 3 weeks ago and am waiting on a referal appointment with a dermotologist.
My bloods came back that I dont have Systematic Lupus but when I reminded my gp of my symptoms of depression,pain and swollen jints she said she would put it in my dermotologist referal notes.

I now have an appointment with a locum gp again - she was great she was the one who arranged the biopsy after 12 years of itching sores on my chest and the other symptoms.
(In the 12 years I have tried steroid creams,antibiotics and told my rash was stress related etc - so it is now a certain relief to be pointed in the right direction
When I go back to the locum gp on Friday, I hope she also pays the same attentiion to my other symptoms as she did to the biopsy arrangements.

Could anyone advise me what the dermotologist might do in relation to the pain and extreme fatigue or should I push these symptoms with the gp appointment on Friday
Any advice would be greatly appreciated
Thanks x

 

[Clare.T]

Hello Rainbowmum

I am glad you have got some answer at last ! Many docs are far too slow to refer on when skin trouble doesn't clear up. Thank goodness for the locum taking some initiative.

Here are your previous posts. Anybody's previous posts can be found by clicking on their name in blue to the left of their posts or right up at the top right where it says Welcome followed by your name

Link to yours

http://www.thelupussite.com/forum/search.php?searchid=135021

I gather that you haven't already seen a dermatologist? If you have longstanding lupus skin problems you should be prescribed an antimalarial.
The one most often used is called hydroxychloroquine sulfate, known as Plaquenil. This is the first oral medicine for SLE and used as a base medicine even when others need to be added. It is especially good for skin, joints and fatigue but has important general disease modifying properties, slowing down activity and reducing flares.

It's hard to say whether a dermatologist might want to refer on to a rheumatologist when it is clear there are other likely lupus symptoms even if blood work is negative.

It would be a good idea to find out what tests have been done. Usually a GP would only do complete blood count and and ANA, & maybe a rheumatoid factor, RF. Ideally other lupus related tests should be done even if the ANA is negative. There's one antibody called anti- Ro that is often found in ANA negative lupus and is often associated with one of the sorts of lupus skin called subacutecutaneous, which in turn is most often on chest, back and arms. " Discoid " is sometimes used as a generic term for lupus specific skin that is not the malar rash that's associated with SCLE. You could have a look at the pictures links that are in the sticky post at the top of Symptoms section of the forum called "Lupus and the Skin".
I certainly think you should mention the fatigue and joint pains again to the locum and make sure it;s down in your notes. I don't know if she will consider you ought to see a rheumy or refer you for some imaging of the joints to see if there's any damage, if she is able to do that

She might give you some NSAIDs to help with the joint aches. Sometimes a short course of Prednisone is prescribed to help bring down general inflammation but each doctor has their own way of doing things.

Let us know how you get on please.

Good Luck!
Clare

 

[rainbowmum]

Thanks for that Clare
This is a great site and you have given me brilliant guidelines

I was told I might have Rhuematoid arthritis in one of my feet about 2 and a half years ago though nothing was ever done about it....I do think though that the diagnosis of my discoid lupus has given me a the encouragement to push this further to find out exactly what else is going on with me...I`ve been led to believe for so many years now that I had acne, strange pains and aches and was stressed as a result of my anxiety and depression ...now however I believe that this is all pointing to lupus affecting other parts of my body...part of me is a bit angry

I seen a dermo about 10 years ago for the rash on my chest and she said she never seen anything like it! then gave me a steroid cream (which works sometimes but not in all the flare-ups Ive had...I was also told a long time ago after patch tests that I had a nickel allergy and thats why the rash was there!

Im pretty well scarred now on my chest with what looks like pockmarks, but I got to a stage where I stoppped going and `troubling` the doctor and would lie in bed just this summer with ice and a flannel to cool down the itch and pain...I as nieve enough to sit ut in the sunshine with the kids and wonder why it wasnt clearing up my skin but making it worse

I was trying to think how I could explain my symptoms to the locum and all I can up with is four words `sick, sore and tired`...I think I`ll just go and approach it with thanking her for sending me for the biopsy and tell her ho miserable Ive been feeling - fingers crossed:wink2:
I would like to get a try at the Plaquenil eventually as I `ve read it can help with chronic fatigue

Will let yu know how I get on
Thanks again x

 

[rainbowmum]

Hi - just an update
The locum doc as great again and Im going on monday for blood tests for the rhuemetoid arthritis - she told me that I`ll more than likely get plaquenil when I go from my dermo appt which Im still waiting on.
Thanks again x

 

[pollianna]

Hi Rainbowmum, I think that Retin A would help get rid of the marks on your chest. if you google it you will see it's amazing stuff. I use it for reasons of vanity and it is known to be ok for lupus patients from what I have read but of course check it out

 

[Clare.T]

Hello Polliana

Can you give some reliable references for the use of Retin A in skin lupus?
I have never heard of this or had it suggested to me, although I have seen some top specialists, in fact I was told by one of the dermatologists who developed it that it had no use in skin lupus but that was many years ago.
It is pretty strong stuff and a medicament not a cosmetic. It also increases photosensitivity.

There are a number of creams or lotions available OTC that are supposed to reduce scarring that probably can do no harm although I believe they work best when the scarring is recent. Anyway I wouldn't use any medicinal product without medical advice unless it can be used without concern on a baby's skin.


Clare

 

[rainbowmum]

Hi again -
its been a while but I seem to be getting somewhere now (i hope)
I had my appointment yesterday at the hospital (dermatology)
The doctor was very attentive and prescribed me factor 50 suncream to wear if i go out of doors on any exposed areas (even in winter!)
I got my bloods taken for liver and kidney function and a full blood picture and go back in 6 weeks
Providing my bloods come back ok, I`l be given Plaquenil on my next appointment and have been signed up for the Optremist and camoflauge techniques.
Overall, I`m happy enough about that for now...and really hope the Plaquenil will make a difference
Just to add,sometimes I use Bio-oil on my scarring which is meant to help...though some of the scarring is very pock marked looking
Thanks for your replies so far and let me know what you think of whats happened so far! x

 

[onetay]

rain,
Sorry that is all I could remember when I went to advance :rotfl:. I am glad that things have seemed to move rather quick for you. Getting a dx and treatment as soon as possible it very important. It seems you are on the right road and getting good help finally.

The placqs could take up to 6 months to get in your system, hang in there it is a good med. If you are anything like me the sunscreen was a nice idea but I have found that nothing seems to help with the sun, but staying inside ( no fun at all :worried. I hope you have better luck with the sunscreen. If you wonder which doctor to turn to just start at the bottom and work your way through to the top of your doctor list :lol:. I hope you stay feeling better and hope to see you in chat to share with us.

 

[lazylegs]

Hi Rainbowmum,

It sounds as if you had a very positive appointment. I hope your blood tests show nothing wrong with either your kidneys or your liver.

Along with the sunscreen you should definitely limit your time in the sun. The hours between 10:00 and 4:00 are the worst for me. There are also a few clothing lines with sunscreen protection.

Keep us posted on how you are doing.

Take care,
Lazylegs

 

[rainbowmum]

Ahh thanks One (rain here lol) and lazy legs

Its great to have somewhere to compare notes - will keep up to date on whats happening - hope to get a better look around the site soon...I was suprised in a way that the hosp app went so well - in a way I maybe thought theyd say `yeah its awfull just stay outa the sun`

I know my other symptoms point to subacute or systematic lupus and was so pleased the doc didnt just `dismiss` me without taking note of all my problems - I could also have been in denial for a while there waitin on the appointment - which I know is something that happens

Well for now Ive got a lot to get on with - I also have an igenetic bleeding disorder HHT - and am trying to deal with that and thought it was enough to contend with - its also incurable - leave it to me -eh?
Either way these things just take a matter of time to get your head round (if you know what I mean)
Will stop rambling and be back soon.x