I was diagnosed with SLE and Morphea in 2004. I take Prednisolone and Methotrexate. I have developed cataracts as the result of taking the Prednisolone which the rheumatologist seems to think is not a big deal. It is to me! Despite the fact that I am on toxic drugs I only see him once a year as my appointments are always cancelled. I think he regards SLE as not very interesting! My GP always tells me that I know more about the disease than any doctor as they don't see it very often. The most frustrating thing is that our local hospital has a specialist Lupus Clinic where the doctors probably do know more about my condition than I do but I was never referred there. My GP says he had never heard of it. The only way I found out about it was when I was admitted to hospital with chest pains and my daughter went to get a drink and passed a room marked Lupus Clinic. I just hope that I don't get any worse and the drugs don't kill me!
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I was diagnosed with SLE in 1992. The best advise that I can give you is go to see a Holistic Dr. If the disease itself doesn't kill you some of the medications will.
I am turning 50 at the end of the month and was diagnosed with SLE at the end of 2003. I had a minor stroke at age 35 but affected me little but as I have worked in the Offshore oil industry I used to exercise a lot and sit in the sun at lunch time but since 2000 I would go red and develop slight rashes, I thought were a heat rash and then my knees and elbows started to flare up and I was always tired as I am male my Doctor never even suspected LUPUS but after 3 years of the depression and pain he checked the full blood spectrum and found i had Lupus,to cut a long story short, MIR and every test known to man..No pun intended, they found my brian saturated with the Lupids and basically threw everything into the exercise even saying that I had possibly 6 months to live but still going
I also stopped going to the specialist as it falls under Rheumatology and only 3 doctors who specialize in this in C.T. I do not think much effort is put into the disease, especially for young woman as this used to be a silent killer in young woman for years before they put a name to it.
I have been on the same treatment for the last 11 years...Cortisone, Methatrexhate, Niviquine and now on depression tablets and plenty of headache tablets and keep going although working 12 hour shifts for 28 days a month is slowly taking it's toll on me.
LUPUS.."Wolf disease" I just wish they would put more effort into this as I tried to volenteer my services to any trail they had going in South Africa..No trails??
I now know when an attack is coming and up my Cortisone and learned a lot in a really good hospital in Rio, one of the remedies was to take double the dosage of antibiotics supplied for a "normal" person IE: 4 day course, take a 8 days of tablets.I did in fact go to a person in C.T. who has SLE and a really good approach, completely natural remedies and really helped as they take a pin prick of blood and monitor it on a Computer and you can in fact see the the results, works on your PH levels and you can actually see the abnormal cells moving from a cluster, if you are interested google sevenpointseven if I remember correctly and must give him another go when I get home, Have to go but looking forward to a reply or a chat from the forum
Hope all works out for you and all the other sufferers
Peter
Sorry the site to google I gave as sevenpointseven, should be sevenpointfive!!
Apologies