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Lupus Attacking Muscles

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Posted 9/12/2017 7:22 PM (GMT 0)
Hi, I was recently diagnosed with SLE lupus in March and was in the hospital for two months. the lupus is attacking my muscles and I wanted to find out from people on this website: has anyone undergone Cytoxan chemotherapy for the lupus? if you have did it work for you? what type of lupus do you have and what body parts are being affected? I also wanted to find out if anyone else who is having muscle attack (high CK or CPK level) and inflammation from their lupus is also having difficulty walking? if so what medication are you on and what have the doctors been saying about it since I'm new to this any help you can provide would be greatly appreciated. I've finished 12 weeks of Physical Therapy and I'm still having difficulty. I've been to several doctors and have had several MRIs which do not show any issues. I've also recently started soaking in tub and using a hand massage on both legs. The neurologists cannot find anything and the Rhematologists think it might be the Lupus, the medication, and/or both.

Just finished 6 rounds of Cytoxan and high dose steroids now being tapered...currently on 10mg per day and coming down soon. I supplement with Ginger, Turmeric, JustOne Multivitamin, FishOil with high Omega 3, and Magnessium (sometimes).
Posted 9/12/2017 7:54 PM (GMT 0)
While Lupus is often treated with Immunosuppressive Medications, rheumatologists most often stick with Imuran, Cellcept, and MTX (Methotrexate). We have had members who have been treated with Cytoxan but I don't think anyone who is currently active is being treated with it.

If you use the SEARCH function (to the right in the second blue line from the top) and look for Cytoxan you can find the older threads where members talked some about it.

Sorry I can't help you more, I really don't know much about it.
Best wishes,
Posted 9/12/2017 8:08 PM (GMT 0)
Thanks for your response. Do you have lupus? If so, what kind? What medications if any are you taking?
Posted 9/12/2017 8:41 PM (GMT 0)
As it says in my signature, I was diagnosed with Lupus & Sjogren's in 2000. While it never goes away, and was very, very bad at one time, my disease is currently "quiet". (That's the word rheumatologists use rather than saying "remission".)

I had severe joint & muscle pain & lack of function, significant brain involvement diagnosed by neuro-psych testing as being equivalent to an IQ loss of 15+ points, and many other symptoms.

Currently I am fairly symptom-free, as long as I pay attention to sleep, food, exercise and keeping low-stress. No regular medications, not even Plaquenil!!
Posted 9/12/2017 8:46 PM (GMT 0)
Ok
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