[blue fairy]

Hi, It all started last year with countless ulcers in my mouth and a crusty itchy rash over my face and ears. First of all they said it was roseasha but the creams they gave me just didnt work. By the time I got to see a dermatologist the ulcers had gone and I just had a bad rash. They have decided I have discoid lupus. Gave me creams and sent me on my way.
I am constantly tired but cant sleep, no I can go to sleep as soon as my head hits the pillow but I am up and down through the night and am up at 6 most mornings and give up.
I suffer from major bouts of depression which I am on high dosage for which just leaves me glazed for most of the day.
A couple of months ago I felt like my body had just given up, I found it hard to do anything, to walk upstairs I had to sleep for an hour to recover. I couldnt even peel an orange for my daughter.
The most frustrating thing was that inside I was me. I felt fine but it just wasnt happening.
I went to my gp who took the usual bloods and it showed some inflamation.
When I finally got in to see a rhumatoidologist I felt fine and they basically said it was nothing to do with Lupus I just had tense muscles.
I would just like to know if this kind of thing has happened to anyone else and how they dealt with it. I suppose I am scared as if it is Lupus connected what if it happens again? When will it happen again? I have 3 children to look after and I am geting little or no help from the people who are supposed to give me answers.
I would really appreciate it if someone would get back to me as I feel im in limbo. I would rather know either way than carry on like this.

 

[Katharine]

Hello there,

From what you have described this clearly needs chasing. If you have been diagnosed with discoid lupus, were you not started on any medication alongside the creams? I would have thought that you would have been put on plaquenil which is used both for discoid and systemic lupus and which could provide you with huge relief. I might be wrong but that's what I thought is usually done...

Personally, if you don't feel comfortable with your current rheumy I would see if there is a way to get a second opinion.

As to the question "has anyone else experienced similar problems?" Yes! So so many people have experienced problems with diagnosis and docs taking things seriously. The most important thing is to remember that you DO know your body and you need to find answers to your problems.

I hope someone more "knowledgeable" people will be along soon,
Don't give up, hugs :hug:

Katharine

 

[LolaLola]

Hello, I am no more knowledgeable than anyone else but I do agree you need support. Could I just point out to you that many Rheumatologists are not specialised in Lupus. There are things that will help the skin. Mine was dreadful before treatment. Where in the country are you?
x Lola

 

[Clare.T]

Welcome to the forum bluefairy

I'm writing as somebody who went for 26 years being told that my 'discoid' lupus was limited to skin and neither the crushing fatigue I experienced from time to time nor the joint aches and pains had anything to do with it.
It's not generally realised that skin lupus can be accompanied by a variety of other symptoms even when there is no blood work or enough criteria to support a formal SLE diagnosis.

These days a medicine called Plaquenil is often prescribed from the get go to get the lupus under control as fast as possible. Skin lupus doesn't kill or handicap but it can have profound psychosocial effects and ruin lives.
Rheumatologists rarely know or care much about skin problems.

Plaquenil is very effective for the skin but it is an important disease modifier too so often deals with aches and pains as well as fatigue. It reduces flares and spread of disease. Steroid creams should only be used very sparingly for short periods of time, like a band aid.

I suggest you find a doctor who knows something about lupus skin and its proper management, probably a dermatologist. People with skin lupus need to be aware of changes that could herald worsening disease and usually have regular check ups for hidden signs of developing disease, blood tests and urine.
Fatigue can be due to many things such as anemia, diabetes or thryoid problems so see your PC first for a complete blood count and urine test.
Depression can also cause immense fatigue and there are few things more depressing than suffering skin lupus and the sort of helpless feelings you are experiencing They will usually do an ANA test too. Start getting copies of test results and learning their possible significance

How is your skin these days? I hope you know that you need to take care with UV exposure.

I urge you to seek good medical care at once - you can ask here for good doctors in your area or try your local lupus suport organisation. We'll help you all we can towards better health and a quality of life so just ask for any further information.

Bye for now
Clare

 

[blue fairy]

Thank you

Thank you to everyone who has got back to me and given me some useful information. I am already on planqenil and am having toup my dose as it doesnt seem to be clearing at the moment. I have it over my head aswell in my scalp - is this common?
As for the steroid cream - I am not on any as such they have prescibed me bactoban which I am using every night - is there something else I could be using.
I am sick of being tired all the time and I think my husband is getting fed up aswell.
I am so glad I have found somewhere that I can talk to people who have first hand experiences. Reading through what some people say I feel silly for complaining about what I have as it is nothing compared to them but Im not vain or anything like that but I never liked make up and never wore it until this started. I hate the fact that to go out the door I have to now sit and paint my face for 20 mins before I feel comfortable.
I would really like to find people to stay in touch with and chat to about things especially when they are geting bad. Is this the best place to do it from or are there other areas on this site that I can go to?
I am in the Cheshire area and would like to know if there are groups around here.

Thanks again,
Blue fairy
xx

 

[Katharine]

Hello again Blue Fairy,

You can post anywhere on these boards when you feel the need to. depending on what the problem is you may choose one or other section.

There is also a very good chat room if you feel the need to talk "live" to someone. Sometimes there's no-one in there but if you go in and sit around for a while someone usually comes in (that can depend on the time of day). Evening times (US and UK) are usually the busiest.

speak soon
Katharine

 

[sueeld]

Like You I Am New To This Site I Have Been Diagnosed With Dle For 12 Years. Iam A Mother To 4 Sons. It Is Very Scary Because You Dont Know What To Expect In The Future. You May Need To Apply A Sun Block To Your Face,ears And Neck, And Protect The Rest Of Your Body With Sun Cream Or Loose Clothes If You Are Sun Sensitive.steroid Creams Such As Dermavate And Betnovate Can Help But Can Thin The Skin. Bio Oil Helps With Scarring .all Can Be Got On Prescription..plaquinil Helps A Lot, But If Your On It Any Length Of Time And Notice A Change In Your Eyes Tell Your Dermatoligist.other Meds Are Mepacrine , Cyclosporin,( These Also Help With The Pains) And Acitretin. You Have To Try To Learn To Manage Your Lupus. If You Need Rest Then Rest. I Think Once Your Family Understand More They Will Realise At Times You May Need Their Support. Best Wishes ....sue

 

[Clare.T]

Hello again Blue Fairy

Here is a link to the Lancashire and Cheshire branch of LupusUK

http://www.lclupus.co.uk/

If you have been on Plaquenil for over two months and there's no sign of improvement at all it is time to start you on another medecine. Plaquenil shouldn't be used over 400mgs a day for any length of time because higher doses increase the risk of retinal damage. A much better option is to add Mepacrine ( US Quinacrine) to the Plaquenil. This is another anti malarial which works together with the Plaquenil, each enhancing the effects of the other. The combination can bring about a dramatic improvement in the skin and also in other lupus related problems such as joint aches and pains.

Please, please don't ever diminish your concerns by talking about "vanity" or not being as bad as other people ! Each person's lupus is 100% to them Appearance is very important to us and to the rest of our world, quite honestly. I sometimes think it's got to be easier to get a sex change operation than effective treatment for skin disease especially lupus skin because there are still doctors who will tell you count yourself lucky. So don't play into that game. If they can get your lupus under control you will feel a heap happier and less depressed.

I think Bactroban is an antiseptic which could be useful against infection.

There are two sorts of creams which can help. The most usual are cortisone creams. They should only be used short term and sparingly like a sticking plaster because they can damage the skin with overuse. Another sort less often prescribed are Elidel and Procrit, non steroidal so damage the skin less. They have to be used with care because they increase photosensitivity

There are other drugs that can be usefully tried if the anti malarial combination isn't enough. All the drugs that are used in SLE in fact plus some like Thalidomide and the acitretin that Sue mentioned

I can't comment usefully on the 'tense muscles' remark. Just that it doesn't convince me and sounds plain daft, but maybe it really isn't lupus related.
I hope they did the full range of lupus tests ?

You can post on any other section of the forum as suitable. If there's a question about meds, post there, symptoms in symptoms section.

Keep in touch and let us know how you let on - I have the strong impression your doctors could be doing more for you . If they are any good at all they should know about the Mepacrine. With enough information you will be able to push for the best for yourself which is your right.

Hugs
Clare