[amanda lloyd]

Hi I'm 47yrs old, I was very 'young' and fit for my age until 2 yrs ago. Last year I was diagnosed with SCLE. Since then my health has gone bazzzzurck! My Doctor trys to assure me that SCLE is only a skin problem, so I must have many other health problems aswell! Last year I had an operation on my knee to remove cartilages, after the op. I was told that my knee was so bad with arthritis that I have to have a replacement knee! 8 months ago I developed a trapped nerve in my arm which disabled me..An MRI scan showed a prolapsed disc and several vertibreas disintigrated in my neck... At the moment I have the use back in my arm, but my neck is awful. Yesterday out of the blue my wrist is causing my so much pain and agony. Can any of these problems be caused by Lupus? Can SCLE be more than just a skin problem.. I also suffer from servere muscle weakness and pain and I'm very weak and tired all the time. Any advice, help would be appreciated cos I'm desparate to know whats going wrong with me!

 

[Maia]

SCLE does tend to spare serious internal organ involvement, but many will also fulfill the criteria for SLE but are usually spared kidney and CNS effects. The joint pain, fatigue and trapped arm nerve could very well be partially due to lupus, but lupus in any form does tend to spare the back. There are exceptions (they don't call lupus the disease of 1000 faces for nothing!).

The most important question now is what medication are you on and has it helped any of these symptoms? Do you see a rheumatologist or a dermatologist or just a GP?

I would recommend getting a referral to a rheumatologist (or get a second opinion if you already go to one) to assess the full set of symptoms the last few years, and see if any changes to medication are in order. Some people with lupus do have lupus and other problems including other autoimmune problems. For your muscle weakness, have they investigated the possibility of myositis through blood testing at all?

As a general answer to your question I would think that many of your additional symptoms are likely due to lupus itself, although you may have some other separate issues going on as well. The knee having that much arthritis is probably not due to lupus because it tends to not visibly damage the joint on x-ray/cause arthritis for example! Likewise your spine symptoms are likely to be unrelated but the other symptoms could very well be related.

Good luck - let us know how you get on!

 

[LolaLola]

Dear Amanda, I don't know very much about SCLE but I am sure others here will help you. Welcome to the site. I hope things improve for you.
x Lola

 

[LolaLola]

Thanks Maia, I am so glad you answered. We must both have been posting at the same time.
x Lola

 

[amanda lloyd]

stepping stone

A dermatologist diagnosed SCLE with a biopsy. A Rhumatologist gave me Plaquenil 6 months ago but I reacted very badly and developed Guttate Psoriasis which I am trying to get over still!. Thank you so much for replying to me. Do you think that the awful pain that has appeared in my wrist is Lupus? Sorry but I am so confused.

 

[Raglet]

hi there

I would ask your doctor what type of arthritis your knee has. There are many different types, so knowing what type of arthritis you have in your knee would be helpful. The arthritis of lupus is symmetrical (ie occurs on both sides of the body, though one side may be worse than the othe), and usually involves the hands / feet as well as the knees, wrists etc.

Nerve entrapment can be part of lupus, but it can also occur in people who don't have lupus.

I would ask for more information about the arthritis - if it is an inflammatory arthritis what would support a lupus dx, but if it is an osteoarthritis that wouldn't support a lupus dx etc. Lupus tends not to affect the back, though many people with lupus will have back problems like the rest of the population do (ie caused by other things).

I would definitely zero in on that knee, and ask the doctors for more information. They should be able to tell you if it is an inflammatory arthritis or osteoarthritis. The arthritis of lupus tends to be non-deforming, so it is unusual to need a replacement joint due to lupus. Those of us who do have joint deformities which require joint replacement tend to have an overlap with RA.

Just throwing some ideas around here as I know every little about SCLE. Hope whatever is going on settles down soon, it is a pity you couldn't tolerate the plaq as it can be useful for joints as well as skin

cheers

raglet

 

[Clare.T]

Hello Amanda

Your doctors are wrong to say that SCLE is skin only although it might be in your case. However it is very often accompanied by 'mild' lupus, meaning as Maia says no organ involvement. But even that is possible, so as with any sort of skin lupus, checks should be done periodically to see if there are any signs of more serious systemic disease.

Sometimes SCLE is skin only or skin mainly but even when there is no blood work to support and SLE diagnosis SCLE patients are more likely to ahve a variety of lupus problems. As with SLE it can be a problem to distinguish between what is being caused by lupus or caused by unrelated problems.

It's a pity about the Plaquenil causing this guttate psoriasis. I really must contact my friendly lupus dermatologist to ask if Mepacrine, the alternative to Plaquenil is also likely to also cause new skin problems.

As it is, you are not being treated at all for the skin lupus An option might be azathioprine or methotrexate or even MMF/ Cellcept which has proved useful for some cases of skin lupus.
There are several autheticated reports of the first sign of SLE being 'carpel tunnel' so make sure you have had all blood tests and urine tested.

All the best
Clare