[Surferboy]

Hi again All

Well, another showing of how different opinions are from specialists relating to Lupus and it's symptoms!

A few weeks ago I went to The London Lupus Centre where the rhumy I saw said that my skin condition was definitely discoid lupus. He was in no doubt what-so-ever to the point where he made it official in writing.

Then today I went to see my NHS dermatologist who having just looked at my back said it was NOT discoid lupus but was in fact a flare of my eczema. Also, regarding sun exposure and photosensitivity, the dermatologist said that the only way to tell if the sun will bring on a Lupus Flare is ONLY IF you come up with a rash anywhere on the exposed skin. If you DON'T come up with a rash then you ARE NOT photosensitive. He also mentioned that you only need to use sunblock on areas not covered with clothing. So, if you are wearing a t-shirt you only need to apply block to the uncovered parts of the arms. These opinions obviously differs to what a lot, if not most, people on here experience when being in the sun - covered or uncovered!

The worrying thing about all this is why are there so many blatantly differing opinions on these things!

It is so worrying to think that one dr will say a certain symptom is nothing to worry about... and he may be totally wrong!!

In our case, and in cases of everyone who suffers such illnesses as ours, who do we believe?!?!?!?!?

I will be going for a biopsy of the skin as soon as an appt comes through. But in the mean time I've been advised to apply steroid creams to the affected areas and to take antihistamines. Is it actually safe for us Lupus sufferers to take antihistamines?

So so worried and confused. After my Pleurisy scare this was all I needed

 

[Katharine]

Hello again,

I think that we have all found that opinions can be very different.

Some things the dermatologist said are probably quite right. First off, photosensitivity does mean, by its very nature, that you react (visibly) to the sun. That does not mean that the sun cannot, at the same time be causing invisible harm elsewhere - that is something that you will "feel" for yourself if it affects joints, causes fatigue, headaches etc. It is wise for the "hidden" element of the harm to avoid sun and keep covered.

It is also true that applying sunscreen on covered parts of your body is rather excessive for most people. He did not say that you didn't need sunblock, just that you didn't need it everywhere!

I presume that he is not questioning your SLE diagnosis, he is simply stating that he believes that you have a flare up of eczema right now? Did the other doctor say that what was going on on your back was discoid?

And yes, you can apply steroid creams -for short periods of time. They tend to be seen as a kind of "band aid" in case of need. They are not a longterm solution. Anti-histamines are also taken by many here as I already said in my other post. The treatment certainly won't do you any harm so long as you are not constantly on steroid creams, so it is worth trying isn't it?

Basically, as to who to believe well...

We all have to basically chose to put faith in our doctors. Thay have studied a number of years (far more than us) and are therefore, one would hope, far more competent than us. Opinions often differ. If they didn't, many would never find treatment or diagnosis for their problems.

You have to find a doctor with whom you have a good rapport, who expplains things well, who inspires confidence. Then you have to TRUST that doctor!! Don't go shopping around every five minutes for a new opinion. Many things in medecine are trial and error. If, after a while on treatment advised by a doc, it isn't working, he/she will naturaly reevaluate. You are also free to question "could it not be...?" (though I wonder if I should encourage you to ask more questions).

Katharine

 

[Surferboy]

Hi Katherine, thanks for the reply.

What I meant to say was that my private rhumy categorically said the rash on my back and scalp WAS Discoid Lupus. Whereas my NHS dermatologist [pretty much] categorically said the rash was eczema and not Discoid Lupus. He does though agree that i do have SLE.

Regarding the sensitivity matter. The dermatologist said that he doubts very much that the sun would cause joint pains etc. He reckons that the sun would only bring about rash's on the skin. And only if I have sensitivity should I use sunblock on a daily basis.

Oh, and LOL at encouraging me to ask questions

 

[cath]

Surferboy,

Can I sugest one way of deciding for yourself what the best "facts"on an issue are?

Google the key words, then read a lot. First, ignore any site that is primarily blog or opinion. Also ignore sites run by anyone trying to sell anything. Go for sites run by teaching hospitals, universities and professional academic journals. Once you have read everything you can find on the topic you'll begin to see trends occuring in what is said - ie a sort of consensus. You'll also notice if there seems to be "schools " of thought - ie conflicting ideas held by different groups.

When medical professionals are learining and keeping up to date they typically do a lierature review. This is an exhaustive search of all professional level literature on a specific topic. After reading all that and critically evaluating it they begin to have a good idea about the state of current evidence. Then they can do more research to try and expand the knowledge base.

In practice, not all professionals are as up to date with the latest research or have read deeply about every single condition they see. There is SO much to read, learn and think about, and even more to discover. And doctors see common things a lot, and uncommon things unfrequently. Especially GPs know a little bit about most things, and everything about nothing. Don't be too hard on them - they are only human too, and only get 24 hours per day.

Do your own research, then you can begin to make an assessment about what you can trust and when you need to seek a second opinion.

Probably the best source to start is Cochrane reviews. They do literature reviews on many subjects and publish a summary of the conclusions in everyday language.


Cheers,

X C X

 

[Raglet]

Surferboy - you will work out over time where you sit on the scale of photosensitivity. Personally I would skip googling it, as I think that would likely make you more anxious, not less.

If you notice over time that your rashes flare after exposure to sun, or you get general malaise etc, then likely you are sun sensitive.

Otherwise, you're not.

So exercise good sun sense, slop on that sun block to all exposed skin, as that is the safest thing to do whether or not you are photosensitive.


hth

raglet