[Mary Barnes]

I am new to this site and would like to compare notes about my Lupus. I am 58 and diagnosed with Lupus Discoid 6 years ago. I have been going along fine with medication -plaquenil and skin lotions and all is under control. I know lupus discoid only affects the skin but I feel sometimes symptons cross over. I get really tired at times and my joints really ache making me feel a bit down. I feel I am having a flare at the moment. We have recently had a break in Spain-I upped my medication in prep and stayed out of the sun as much as possible. My skin did erupt a bit but not as much as expected. That was 4 weeks ago and this week I feel as tho I have been hit by a truck-although I do feel brighter to-day.
I am retired now and lead a busy life especially with my beautiful little grand-daughter and family but I have learnt to listen to my body.
I also have an under active thyroid and osteoporosis so I get a bit confused when I get what I call a flare as lupus discoid only affects the skin !!!
Nice speaking to you-would be interested to hear how other discoid sufferers feel.

 

[Pink Pearl]

Hi Mary,
Welcome to the board. I have systemic le, not dle. However, dle and sle can both be present, so it seems time to revisit your rheumy and have the sle bloods done again. I've known a few people who had both, so it is possible. Not as common, but possible.
Good luck,
Sally

 

[Mary Barnes]

Thanks Sally-worth a try.

Mary

 

[Katharine]

Hello there,

I agree that it is always worth keeping an eye on things to make sure that you don't have some systemic involvement as well. You also need to keep a close eye on thyroid levels as that would also make you feel similarly flattened. Do you have a good endocrinologist and rheumatologist?

Another thing is - with plaquenil, upping it for a holiday may not be very effective as it is a very long acting med and it might take three months for the effects of the increase to be felt.

There are a few possibilities that could be looked into of this kind of tiredness and aching joints goes on but the first step is to get in to those two docs and make sure all the tests are done to know what you're dealing with.

Bye for now,
Katharine

 

[debatat]

Hi and welcome to the site. It is a great place to find info and support. The others have given you excellent advice. I hope the docs manage to get things sorted.

Take care

Deb

 

[Primrose1960]

Hi Mary,

I also was diagnosed with Discoid Lupus and I have an underactive thyroid and fibromyalgia.
I have suffered in the past with joint pain, painfull feet and hands and it has taken 1 and a half years for the plaquinel to kick in and seems to be working very well.
I feel that although I have only been diagnosed on paper with Discoid that there must be some sort of SLE, one of the rheumatologist did say that if I am experiencing joint pain then there must be some SLE.

It is important that you get regular blood tests anyway and tell them how you are feeling.

Best of luck with things.

 

[countrylass]

Hi Welcome to lupus site its very very good made such difference to me

My father had discoid lupus or known as dle.

do u know that low thryoid can cause joint pain and extreme tiredness my best friends both have it and both suffer what u describe im wondering what u taking for the low thryoid as they awaiting diagnosis and will be prescribes something to redcue those sypmtoms.

also to keep diary maybe of what u suffering with to discuss with your consultant.

im newish and awaiting lupus diagnosis already diagnosed with sero negative rheumatoid arthritis,which is now being queired and on methotrextae amongst lot medication for my illness.

take care gentle hugs countrylass

 

[Mary Barnes]

Thanks to all for advice-I appreciate it.

Regards

Mary