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I was diagnosed with SLE 3 weeks ago by telephone and told I was having a flare and if okay with me should start on some extra medication. I took Pred for 2 weeks, plus taking Plaquenil, NSAID (was already taking and still have to), plus some other medicine to help the heartburn. My next appointment with Immunlgist is not until end March (I made this appointment back in Sept 2007 before I was DX .:hehe:

How do I know whether I am still flaring and if so would I still need the steroids. Should I be seeing the Immunologist sooner than end of March.In the UK are we allowed to ask for and receive copies of all blood results?

I seem to live my medical life in a world of unorganised medical proffessionals.:eek:

I have really no idea what the next step should be - ideas anyone!:hehe:

Lesley
 

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Hi Lesley

Sad to say but welcome to the world of unorganised medical professionals:rolleyes:

On a serious note, how are you feeling at the moment? Thats probably a good barometer. Do you think the short course of steroids has helped? The short course may be enough to get your flare under control and the Plaquenil and NSAID's will continue to do their job over the coming months and help get better control of the disease. Most doctors will try and minimise the use of steroids as they can have serious side effects with long term use. Having said that, they are life savers at times so they are an extremely important part of the tools a doctor will use.

The Plaquenil will take much longer to kick in. Its a slow acting drug and may take anything from three to six months to reach full effect. Its usually very good for joint and skin problems.

Its very hard to know what to do, especially in the early stages of diagnosis. You have to go by your gut instinct on many occasions and over the coming years, you will get to know your body better than you ever thought you would.

Most newly diagnosed people seem to see their specialist every few months in the early stages of diagnosis. Of course this all depends on the severity of their disease. For example I was seeing my Rheumatologist every two months for the first year or so and then every three months and now its every six months.

I know you had a bad experience with your Rheumatologist and it was your Immunologist who diagnosed you but I wonder could you look for another referral to a different Rheumatologist? Maybe this is something you could discuss with your GP or certainly with your Immunologist in March?

For now I would say just go with your medical advice. Finish your course of steroids, continue on the medication and wait until your next appointment. Of course if you feel that you are still flaring badly and are just not functioning properly you should try and see if you can get an earlier appointment or see your GP. A good GP will be essential to you. I see my GP in between appointments and although he knows very little about Lupus he is very good at listening to what is going on with me and we can usually manage any symptoms in between specialist appointments. If he feels I might need some 'testing' in the interim period then he will order bloods or urine tests just to keep a check on things.

As far as getting your blood test records in the UK - Im afraid I dont know the actual system there but Im sure someone will be along soon to advise you. Here in Ireland I have discovered that I simply need to fill in a 'Routine Access Form' with the date my bloods were taken. I send this into the hospital with a copy of my passport for identification and they post out the results to me.

I hope you feel better soon
Take good care
Joan:rose:
 
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