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I was diagnosed with SLE, extreme photosensitivity and connective tissue disease. I also have liver hepatitis which has been ongoing since 2011. I am overwhelmed. My body is literally falling apart. My days are filled with doctor appointments, PT, and trying to control pain.  I take 400mg hydroxychloroquine and was taking Imuran as well but had to stop Imuran as i had a bad reaction: crying uncontrollably.  It’s as if my entire life has changed overnight. How do i prioritize? How do i self care? Will life get better? Suggestions are welcome.  

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  • Posted

    Hi sunnie

     it can be overwhelming... I've SLE too, 24 years and lupus nephritis just diagnosed this year...my advice is pace yourself, look at how you can make things easier for yourself. (I left a very demanding full time job 4 years ago now work from home part time) rest often and once they sort out exactly what's wrong and treatment us stable it should be keeping an eye on you. stress doesn't help this condition. 

    I've made some changes to lifestyle and feeling better!! 

    Hope u feel better soon 🙂

    • Posted

      Thank you for the reply; it's comforting to just know others can understand this disease. I will heed your advice. The pacing is a good point. I, too, had to leave a very demanding job and work very limited part-time from home and even that is a struggle. I know you're right: once things calm down and treatment stabilizes, things will get better. I'm staying positive and making every life style change possible.

      Thank you again for your input!

    • Posted

      Hi there

      yes it's very hard to keep down a full time job never mind a demanding one. 

      Ive inflammation in the kidneys, (lupus nephritis) mild but dangerous all the same. Lupus is causing extreme fatigue , muscle, joint pain , dry eyes etc...

      you are not alone!! 

      Just pace yourself, relax more, walking outdoors helps too...the midications really work and make a difference once your body adjusts. Steroids make a big difference if you can take them, I'm on those and mycrophylinate . It's worth checking your V B12, thyroid, and iron levels. Mine were all low. Now that I get treatment I'm not so tired. I went to a lot of appointments too but not just so many now. Ask lots of questions when you go. 

      all of the above is connected and everyone is different. 

      I hope you feel better soon. 


  • Posted

    I agree with lifestyle changes. I have Behcet's which is very similar. I was working in the media at time of diagnosis. I couldn't cope. I gave up my job and opened a small business. That can be demanding but is fkexible enough that I can have time when I need it.

    Re medication there are other thibgs you can try. I was not good on imuran but fine on mycophenolate. I also was great on interferon which I took for sone time and it brought a kind of remission from my very worst symptoms. I now only taje hydroxychlorequine because after stopping these meds joint pain kicked in and I had very very sore feet. This has worked amazingly.

    There are so many thinhs you can try to make your life better. And also great support networks. Particularly the facebook groups I use for Behcet's and vasculitis. They are very supportive and share many tips about what works well. This site too. But facebook has sites dedicated to particular conditions which is great.

    I hope you get some relief from your symptoms soon. X

    • Posted

      Thank you for your suggestions as well as sharing some of the medications you've taken. I can't comprehend how people work with this disease; I have been unable to work for 7 months after having major surgery in May. It was the surgery that opened the door to the underlying issue: Lupus. I see 5-7 different doctors a month right now as I have several organ issues. I'm beginning to realize this is a bit of trial and error in the beginning and must believe it will find a steady rhythm in time. I'll meet with my Rheumatologist in 2 weeks, he's considering Bio-Med infusion therapy. Have you heard of it? It's once a month. It is very expensive but my insurance will pay for it with authorization thank goodness but it, too, has side effects. Some days I wonder if the meds are worth it. Just venting here. I know I have to do this right now because my body is destroying itself one organ at a time. You mentioned you came off your other drugs and just take hydroxychloroquine now. Is that because you got better, meaning your numbers improved?

      Thank you Margaret!

    • Posted

      So we all have our different issues running alongside these illnesses which complicate things. So I was like you had 6 months off work completely. So had to take redundancy otherwise they would have had a right to dismiss me on the grounds of continued ill health so the best option was getting out and doing something else. 

      My very worst symptoms were neuro type symptoms. Headache from hell with symptoms of vestibular migraine dizziness and electric shock pain which would pop up in different places. Stroke like symptoms. My specialist believed the symptoms were caused by inflammation in the brain stem. So interferon treated me so successfully. Three rounds of it, the last being 3 years long, weekly injections. I was symptom free for a long time. Then I began to get peripheral neuropathy and also I had what looked like a growth on my kidney which was unrelated to my condition. 

      So I had to stop taking the meds and I was med free for almost a year successfully but then began to get bad pain in my feet along with neuropathy. My specialist considered it was the disease returning so I was given the hydroxychloroquine and so far am great. 

      Please take hope there are things which can work even quite long term. I don't know about your bio infusion but know of other Behcet's sufferers who are treated very successfully with infusions hope it works for you. 


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