A Measure of Health with SLE Lupus

[UKMoss]

Am a 64 year old female diagnosed with SLE Lupus in the June 2000 at age 43, after 2 years of marriage. It affected my left lung (pulmonary fibrosis--doctors were preparing me for a lung transplant but refused it). At this time I was being treated with cyclosporine in preparation for the transplant. (Did not want to live with that quality of life). Along with this lung issue, there were lesions on my finger and elbow joints oozing with pus; a web-shaped designed covered my stomach (dermatomyositis) and had daily painful joints. I lived with sustained oxygen for 4 years before weaning myself of it. Have not walked around with a tank since then.

Initially, I was treated with 60 mg of prednisone for months. It made me overweight, but it brought relief. I never came off prednisone. Presently am taking a daily dose of 15 mg. This has keep me stable for years until recently. Lupus went into remission in 2003. My meds also included plaquenil and immuran (added in 2004 after retention of fluid in the feet). These work perfectly for me.

Being in The Bahamas, and in this pandemic, I can't travel to see a rheumatologist in the USA, so I adjust my steroids when necessary.

Never had a real flare until now due to a stressful condition. As a result, an internist put me on 40 mg of prednisone to combat the inflammation in my body. It's working. It is hoped that the flare will go away soon in order to take the first dose of the Pfizer vaccine.

My experience shows that there is "light at the end of the tunnel" for you and others who are battling the most severe form of this disease. You can have a measure of health with Lupus. It will take some time. Follow doctor's orders, and accept the support of your wife and friends. Be conscious of what your body is telling you, and adjust your activities accordingly.

[Cowsaresweet]

Thanks for sharing this. Having had the diagnosis finally this year it is wonderful to hear how despite being very ill you have managed to find a way forward. I am finding the rollercoaster of Lupus hard to take, each morning I wake up with anticipation as to what that day will bring. However overall l am improving, l can walk short distances with trek poles but as before l was climbing mountains it is hard. Yesterday we went to a NT house and I got the buggy down and back to the entrance, then just managed to get around the house with a few rests on chairs. This year all our walking plans were ditched, but reading your post gives me hope that this might not be 'it' and perhaps in the future l might get back to at least doing some walking. So thank you👍

[LalSD]

Well done and thank you for sharing. It is true, I think we can get a stable life, and yes it takes time but we get there. Much love, L x

[stiff19]

Great informative,hopeful, positive post. Best wishes

[MusicalFurbaby]

Hi UKMoss, welcome and thanks for sharing here! It is refreshing to hear your good news story. Often I get so problem-saturated I forget that sometimes treatment works and some people manage to live quite well with lupus. Thank you!