[Katharine]

Hello Karol and welcome,

It sounds like you have everything well under control on the doctor side of things and that you have a good GP. Some people do get an MS diagnosis and then find that it is actually lupus. Lupus is the great imitator and can be a very hard disease to diagnose.

If it does turn out to be lupus do please come out of that denial and take the disease modifying meds that can make a huge difference to life. You can then indulge in denial as much as you want but without putting yourself at risk :lol: we all do it to some extent or the other.

bye for now,
Katharine

 

[Katharine]

Hi Karol

Plaquenil is the baseline medication given to most people with lupus and some other auto-immune diseases. Originally an anti-malarial it is a disease moifying drug that reduces the frequency and severity of flares. On the whole it is very well tolerated and has very few, if any, side effects. Its "down" side is that it takes a few months to start working. There are also other anti-malarials used in some cases if plaquenil doesn't suit or to improve other symptoms.

Other commonmy used drugs include immunosuppressants which basically stop the immune system working quite so hard and can be very beneficial for people with more serious maifestations of the disease or organ involvement.

Prednisolone is also used for some people mainly to try and control flares before other drugs can work but for some people they may stay on a maintenance dose for one reason or other. It is not, however, the "main" treatment and if docs can avoid steroid use they will.

Aspirin is used by some people who have a blood clotting disorder as well as lupus but it is just one choice among many.

Basically treatment for lupus can be pretty varied and has to be tailored to suit the patient as it is a very individual disease. This tailoring can take some time and can be frustrating but leads to the best results with the fewest side effects. The most important drug of choice is a disease modifying one like plaquenil as that is what will stop the disease progressing or being so severe in its manifestations.

Katharine

 

[Katharine]

Hahaha, I don't think anyone knows enough about this disease but I'm of a curious nature and have learnt a lot over the years (My Mum has dermtomyositis and lupus) and through this site.

I have lupus with a myositis overlap, possible APS (I take aspirin preventatively but have never had a real clotting incident) and hashimotos (underactive thyroid) so yep, we learn but actually I'm not all that good at the techy bits. There are far better than me around!!

Katharine