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Posted By : Sashamae - 10/30/2016 3:19 PM
Hi, My name is Sashamae and I just joined this forum. I'm hoping to get some answers to some problems I've been having. I have had SLE Lupus since before 2000; but 2000 is when they identified it. I was have the spots on some joints, the slight butterfly rash, and the awful mood swings which turned out to be peri-menopause that started on me at age 39. I am 61 now and have tried everything from Vioxx to Prednisone. Many of the drugs I was put on are now pulled by the FDA as too dangerous. I now have a leaky heart valve I believe came from being on Vioxx for years. So, I guess you will understand when I say I am very skeptical that there is any medication out there that will help without hurting you. My Dr. wanted me to try the new Wonder Drug for Lupus-Benlysta. I resisted for awhile; but the methotrexate I've been taken was making me more bald by the minute, so I agreed. We backed the methotrexate down from 5 per week to 3 per week and I started the Benlysta Infusion in February, 2016. The first four or so months I couldn't tell it was doing anything good or bad. Then in July, I began to have slight back pain and pain in my right hip. I had had some pain there before, so didn't think to much of it until a couple months after that. It started to get much worse in my right hip and leg. I get regular shots every three months in the bursa sacs surrounding the hip but this was more in the large muscle in my leg-the upper thigh. I have a hard time walking on that leg and the shots don't help. Has anyone else out there experienced leg pain from taking the infusion Benlysta and if so, how does it feel to you? I would really appreciate any feedback. I go back to my Dr. on Nov. 10 and would like to be able to let him know that it is a real symptom, that its not just me. Thanks and God Bless Everyone.

Posted By : couchtater - 10/30/2016 6:22 PM
I've never been on it, but I would definitely tell the doctor about the leg pain. it could be a serious problem.
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, diabetes, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Posted By : Sashamae - 10/31/2016 8:47 AM
Thank you , I plan to do that. I just wonder if others have had the same problem.
Sashamae

Posted By : Butterflake - 10/31/2016 6:32 PM
Welcome to our forum sashamae. I have been getting Benlysta infusions every month for about two years. I see a very good rheumatologist, but I have argued with him more than once. He allowed me to stop the Benlysta for two months, but my lupus symptoms became worse and I asked to have the infusions resumed. Benlysta often makes the long bones in my legs hurt, but the pain doesn't last long and pain in the long bones is a known side effect.

I'm 59 y/o and have had lupus for ten years. I was also diagnosed with osteoporosis recently. I had my first cortisone injection in the bursa of my right hip and my right knee. The shots really helped my pain and walking. I would like to hear how your rheumatologist appointment turns out and I hope you find something that gives you pain relief. Love, Butterflake
SLE '05, Sjogren's, Fibro, Raynaud's, major depressive disorder, CVID (Common Variable Immunodeficiency), Hypertension, Osteoporosis, CNS problems, GERD, angina, 1st stage kidney disease. Many meds: better living through chemistry

Posted By : Sashamae - 11/1/2016 11:35 AM
Thank you Butterflake, I will certainly let you know. I really need to find a solution for this leg pain. It seems to be more in the muscle. It feels almost like tendinitis, but in the muscle not the tendon if that makes any sense. I live on a farm and my everyday chores are a struggle when you can't seem to lift your leg up to take normal steps. I've had my ups and downs with lupus; but nothing has knocked me down as bad as this has. Even normal housework is suffering to get done. Something has to give. I hope I will have good news on the 10th in the form of some pain relief. Maybe this will help others someday also.Thank you so much.
Sashamae

Posted By : Butterflake - 11/3/2016 6:56 AM
Hi Sashamae. I've been thinking about your pain problem. I occasionally take prescription Flexeril (cyclobemzaprine) for muscle pain. It's a muscle relaxer. It may make you feel tired, but that's better than pain. Often if I can get my pain under control I can tolerate the fatigue. Also being an advocate of prescription mess included in my arsenal are Tramadol 100mg that I take with Arthritis Tylenol, Limbrel, and Nucynta (a narcotic). I can't take NSAIDS because of a stomach ulcer, but when I could I also took Exceeding. I can and often do rub Voltaren gel into my muscles. It's the only NSAID I am allowed. Lidoderm patches placed on the painful area at night makes the area feel numb so that's good too. Don't forget the Epsom salts bath.
I'm so sorry that your farm chores are such a struggle. Is there anyone you can ask for help? I feed a feral cat daily and I feel so badly when I'm too sick to feed him. I know how much your farm relies on you. Please let us know how you're doing. And be sure to tell your doc how difficult it is to do your chores. Love, Butterflake
SLE '05, Sjogren's, Fibro, Raynaud's, major depressive disorder, CVID (Common Variable Immunodeficiency), Hypertension, Osteoporosis, CNS problems, GERD, angina, 1st stage kidney disease. Many meds: better living through chemistry

Posted By : Sashamae - 11/5/2016 3:11 PM
Thank you Butterflake. My husband has COPD, so between the two of us-we are a mess! I have leased most of the farm out to a larger operation because we just cannot do it anymore. We still have a few farm animals that we regard as mostly pets. When they do pass away, we won't be getting any more to replace them. They make me forget the pain sometimes, just spending time with them. Animals can really enrich your life if you let them. I had another sleepless night last night. I think it was the worst yet. I plan to get some Icey Hot for pain relief when I go to the drug store and see if than helps also. I too take a muscle relaxer and you are so right-when the pain is gone or subsided, I can handle the fatigue pretty good. Its the two together that really knock you down. Wish me luck Wednesday and I do hope you are doing well. Thanks for all your advice. I really appreciate it.
Sashamae
Sashamae

Posted By : couchtater - 11/5/2016 9:05 PM
I prefer Salonpas gel to icy hot for my muscle rubs.
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, diabetes, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Posted By : Sashamae - 11/6/2016 3:38 PM
Thanks Joy. I have tried those before and I can't really tell any difference in the pain. I guess its different for everyone; but I do appreciate your suggestion. Let me know if you think of anything else. I hope you are doing well and I like your statement about lemons. That is soooo true!! :)
Sashamae

Posted By : Butterflake - 11/11/2016 11:07 AM
Hi Sashamae. How was your visit with your doc?
SLE '05, Sjogren's, Fibro, Raynaud's, major depressive disorder, CVID (Common Variable Immunodeficiency), Hypertension, Osteoporosis, CNS problems, GERD, angina, 1st stage kidney disease. Many meds: better living through chemistry

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