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Discussion Starter · #1 ·
I was diagnosed as having Lupus 3 years ago through blood tests and a skin biopsy (I was sent to Dermatology after a rash on my face didn't clear up after a year). At the time it only appeared to affect my skin and my general health was good. I took Planquenil and wore sunblock which cleared most of the rash.

Before diagnosis however and while I had the rash I was diagnosed with Otosclerosis (conductive deafness in both ears). This diagnosis came about after a hearing test and likelyhood (my age, female etc). I wear hearing aids which help although I get really bad tinnitus.

I also had a rash on my left breast (like burst blood vessels) and excrutiating pain and burning on contact. The doctor checked for breast lumps (none) and said it was likely that I had shingles. My breast got better on its own in time.

Twice I had a very itchy rash on my legs. I was given a stronger anti histamine and Steroid cream. The rash eventually went away. My doctor said it may be an allergy, I dont know what to or if it'll come back.

Recently the rash has been getting worse on my face (both sides but the pattern isn't symmetrical). The Planquenil doesn't seem to be clearing it up.

I recently got diagnosed via X Ray of having cervical spondilisis, its very advanced for my age (42). Doctor doesn't know if its Lupus related.

I then had really swollen knees and one day was so bad I couldn't walk or straighten my legs. I had steroid injections in my kneecaps, this has helped. The consultant said the SLE was present in my blood but said "we expected that anyway". He X Rayed my hands (I also had pain in a couple of fingers).

I have to keep taking the Planquenil and go back in a month "as we haven't seen the last of this".

He said the swollen knees, like my neck can be wear and tear, he isn't sure.

My ankles and lower legs were badly swollen while on holiday earlier in the year.

I feel like a hypochondriac and I feel elderly. I am only 42 and have an active job but its one trivial but niggly thing after another. I am tired, my neck crackles like **** when I move it and I feel my doctor is putting it down to getting older. I don't look elderly, I am active, slightly overweight, I eat lots of Fruit and Veg and pulses.

I guess I just have to be patient.
 

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Hi Fiona,

I guess time will tell if this is down to disease activity (things can change - Lupus is rarely static) or whether some of it is just co-incidental.

Are you finding that you have profound fatigue with all of this? Like someone has pulled the rug out from under your feet and you just can't take it and have to go lie down? If so then that would really point to it being increased disease activity. How about mouth or nose ulcers?

It might be an idea to revisit the Dermy in regards to these rashes, to determine just what they are.

I hope they manage to sort this out soon for you and get you on some meds to help you feel better.

Are you taking 400mg Plaquenil? That's our normal dosage unless you are very tiny. Do you take an anti-inflammatory? Many of us do and that helps along with the Plaquenil for joint pain etc.

I hope the Rheumy is checking urinalysis, especially in regard to those swollen ankles and lower legs during your holiday. Sometimes that can be a sign of kidney issues. How is your blood pressure?

love
Lily
 

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Hi Fiona and welcome to the site. It is a great place to find inofrmation and support, the members are very friendly. It sounds as though you are having a hard time of things at the moment. I have cervical spondylosis and know how painful it can be. Have you had any steroids? Steroids have been a lifesaver for me with my joints. I hope they manage to get your treatment sorted soon, quality of life is so important. When is your next rheumy appt?

Take care

Deb
 

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Discussion Starter · #4 ·
Hi,

Thanks for your responses. I am tired and lethargic but was putting that down to work, recently though I have felt sick with tiredness and drink a lot of coffee to get through the day. I came home early today cos I felt light headed and naseous (probably the caffeine). Its an interesting point with regards to mouth ulcers, I get them a few times a year and I also get them on my tongue.

Anyway, I have another appointment in a few weeks.

I wouldn't say I was really ill and from what I have read some folks are really suffering by comparson. Im just worried that its starting to get worse.

Im on 200mg Planquenil twice a day and have Dicoflex for pain and inflammation.

This site is really useful and helps me keep things in perspective. Thanks for taking time to respond,

Fiona xx
 
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