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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).
 

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Welcome LupusMuscleAttac.

Muscle weakness is one of my problems. Unlike you my CK levels are normal and always have been. The neurologist diagnosed it as Myelopathy. Cytoxan was a choice for me but I decided to try Rituxan as it seemed to have fewer side effects. I find it a constant battle to keep the muscles strong. There is a fine line between doing enough and overdoing. Different aides are invaluable for me.

Take care,
Lazylegs
 

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Thanks for your response Lazylegs. What's your dosage? How long have you been on it? Does it work for you- if so, how? Are both legs effected? Can you describe the feeling? What type of lupus do you have?
Thanks in advance for your help.
 

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Hiya, I lost 1.5 stone over a short period when my Lupus was actively attacking my muscles and lungs. My CK reached 1500.... I then had the option of Cytoxan or a trial drug....chose the trial drug and everything settled. My muscle biopsy done at that time was essentially normal (on steroids) but my liver levels increased a lot more than my usual. I have MCTD with Lupus predominating. I hope they can settle it down for you, that was a very tricky time for me :0( ..........Claire
 

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The Rituxan is administered by infusion in a 1000 mg dosage on one day followed by the same dosage two weeks later. After years of experimenting (I forget how many now) we found doing the infusions every 4 months is best for me. My legs are not all that are involved, my entire body is. The feeling is difficult to describe. The upper body is like being a limp noodle but the legs are more like when you empty the bath and all the energy swirls right out of the body. It almost always begins in the thighs. Rituxan has helped me but hasn't helped others I know.

My initial diagnosis is SLE. Since then neurological manifestations such as myelopathy and peripheral neuropathy have been added. Each year I am checked for MS but so far I test negatively.

Take care,
Lazylegs
 

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Thanks for the response LazyLegs and description. Rummy suggests Imuran (less risky than Cytoxan) for my heavy legs and to keep this thing at bay after the Cytoxan. I'm wondering if it'll work but I'm remaining very hopeful indeed.

How long did it take for Rituxan to work for you? 1 year, right?

I wonder if anyone else will chime in on this thread. I hope so!
 

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The time it takes for the medication to be effective varies depending on how bad my symptoms are going into the infusion. I do remember the very first one took 4 months but that is not the norm. Now in week or two I feel a difference.

Others on the site take Imuran. Maybe one of them will post their experience with it.

Take care,
Lazylegs
 

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Hiya... one and a half stone = 21lbs.

Sifalimumab made by astrazeneca.... was the trial drug but it didn't get taken into production as it was in competition with it's sister drug...which showed slightly better results.......hoping it gets to surface soon.
 

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No... the drug wasn't benlysta , it was more powerful.

I was deemed too sick to go onto benslysta so was put on the drug trial ...my only other choice was very cytotoxic drugs IV.....
 
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