Lupus "but mild !"

Been on hydrocloxaquine for 2 to 3 yrs now due to extremely painful cramp like pains all over my body .

Just recently been but on to aziophrine in June cranked dose up to 125mg daily but nxt month going to it it up again to 150mg .is this a high dose to be takening for mild lupus ??

Wondering if hydrocloxaquine has been masking me being properly with lupus earlier and may be my symptoms would be worse .ie my lupus would be strongly positive for the disorder?

I seem to be confused as I only found out in a copy that st Thomas sent to my gp yesterday that I had lupus mild

Up to know have only been told I had lupus like syndrome!!!

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  • It is good you are at St Thomas' and recommend you ask to speak with Dr David D'Cruz and don't let them bully you into not speaking with him, probably after you see whatever doctor you are given. Since appointments can be up to 18 months, you are entitled to speak to a consultant.

    A diagnosis of SLE takes along time, unless you have a positive ANA, malar rash and lupus nephritis, which most do not. There is no single blood test for lupus and even with a consultant ie lupus specialist, it can take several years. It matters not. What matters is the correct treatment.

    Most, if not all lupus patients, will be prescribed hydroxychloroquine. Sometimes, this is all that is necessary. If not, depending on your symptoms, you will be prescribed other medication. The dose will be aimed as low as possible, which means having to increase the medication if the doctor feels the dose is not correct for you. It can be trial and error. It is because SLE can affect any body function, that more than one drug may be necessary. Generally, doctors hate giving more than one drug, but in SLE, depending on what symptoms you have and the organs involved, will depend what is prescribed.

    "Mild" is a relative term. You should ask the specialist what this means. I would "guess" this refers to your NOT have severe organ attacks. It does not mean you are free from symptoms.

    Aziathiaprine starts at 50mg tablets but the amount depends on the individual. You will need regular blood tests to ensure the drug agrees with you and I assume this is the case. It also depends whether this is to treat a "flare" or a maintenance dose. Here is an example - I am NOT a medical doctor and I am NOT suggesting this is right for YOU! This is purely as an example:

    Dosage of this medication depends on the disease being treated. The initial dose for rheumatoid arthritis is approximately 1 milligram/kilogram (mg/kg) of body weight, or approximately 50 to 100 mg given as a single dose or twice daily. This can be increased every 1-2 months, up to a maximum dose of 2.5 mg/kg of body weight, or approximately 75 to 150 mg given twice a day.

    Thus, 150mgs may be right for you. These are the questions you need to ask your lupus specialist.

    With good wishes,

    Ros

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