I was diagnosed with lupus about four years ago. Have spent a lot of time in the hospital since then. Lupus has remained under control with prednisone and hydrochloroquine and such, but it led to interstitial lung disease and lymphoma marginal B cell lung cancer in me. I currently have only about 30 percent of lung capacity remaining. My doctors were able to rid me of the cancer, however.
The prednisone also led to four fractured vertebrae, which have caused me troublesome back pain on and off for last two years. No fun, to say the least. I have also been diagnosed with bipolar disorder, though medicine appears to be working fairly well. Still, it is difficult to deal with so many ailments.
I formerly enjoyed running and weight lifting and fly fishing in beautiful river settings. I am now limited to some fishing opportunities due to lung problems. I cannot do any meaningful exercise as I did before.
My unpleasant experiences over the years have included colitis and renal failure caused by chemo for cancer. Renal failure was a b****. Almost killed me. I currently have up-and-down days and am able to do basic things like grocery shopping and such most of the time.
I started benlysta with first session two weeks ago. My doctor hopes it will help lungs as well as the lupus.
I will let you know how it goes. I have had just one treatment. I will take treatments once every two weeks. They say several treatments are needed to see whether there will be a positive impact. Wish me luck.
Paul
purplebutterfly said:
Hello Paul
I also have lung problems and am starting benlysta in a couple of weeks. I am glad you shared your story please keep us updated on how you are doing.
I have a question for you Thomas. Did the strong symptoms come upon you suddenly or did they happen to you a little at a time. I ask you this because my symptoms seem to be happening quickly, like with in the last 8 months. I too had been very active in my life with running/hiking, martial arts student/teacher, , fishing, and shooting guns, volunteer work with my church and community. And now these things have dwindled down to almost nothing in the past two years. I have been taking Plaquinil for almost four weeks now. I know that it takes from four to eight months before a patient starts to see any benefits, so I am waiting. And thanks for your post.
Hi Paul, so happy to hear you are cancer free. I can empathize with the bone fractures from the prednisone...I have been off the prednisone for almost 8 years, because my feet and ankles kept breaking. It's been rough, because I also had to go off the plaquinil because it effected the retina of my eyes. I was off all meds that could help for almost 5 years,(because of medical allergies) and was living in pure hell, until the Benlysta about 11 months ago. I think we all have our own stories to tell about the trials of Lupus, and how it affects us. I also had to scale back on all my favorite 'outside' activities...I also used to run, walk and 'stroll' on the beach. Play with the kids, fish with my husband, etc. Now I can barely go outside without getting sick, sometimes even using all protection 'gear'!!! I find that you need to find new things that keep you interested 'in life'.....Good luck with the Benlysta, I hope it helps you as much as it seems to be helping me. Have a great week-end, and feel better.
I would say the lupus symptoms did not come on suddenly, but when they did hit they hit hard. About six months after I was diagnosed they discovered I had lung cancer they feel was caused by the lupus. I beat that with six months of chemo, but then got interstitial lung disease, again caused by lupus. I am not beating it. Rheumatologist now has me on benlysta, which I just started. While designed to help the lupus, he hopes it will also help the lung problem. We will see. I seem to have the lupus symptoms pretty well under control. Hope that helps.
ptpsr said:
I have a question for you Thomas. Did the strong symptoms come upon you suddenly or did they happen to you a little at a time. I ask you this because my symptoms seem to be happening quickly, like with in the last 8 months. I too had been very active in my life with running/hiking, martial arts student/teacher, , fishing, and shooting guns, volunteer work with my church and community. And now these things have dwindled down to almost nothing in the past two years. I have been taking Plaquinil for almost four weeks now. I know that it takes from four to eight months before a patient starts to see any benefits, so I am waiting. And thanks for your post.
Thanks, and good luck to you too. You just have to keep fighting and hoping and live life as fully as possible.
Paul
bak said:
Hi Paul, so happy to hear you are cancer free. I can empathize with the bone fractures from the prednisone...I have been off the prednisone for almost 8 years, because my feet and ankles kept breaking. It's been rough, because I also had to go off the plaquinil because it effected the retina of my eyes. I was off all meds that could help for almost 5 years,(because of medical allergies) and was living in pure hell, until the Benlysta about 11 months ago. I think we all have our own stories to tell about the trials of Lupus, and how it affects us. I also had to scale back on all my favorite 'outside' activities...I also used to run, walk and 'stroll' on the beach. Play with the kids, fish with my husband, etc. Now I can barely go outside without getting sick, sometimes even using all protection 'gear'!!! I find that you need to find new things that keep you interested 'in life'.....Good luck with the Benlysta, I hope it helps you as much as it seems to be helping me. Have a great week-end, and feel better.
Hey Paul, and welcome! I too was like you. I worked 2 jobs, hiked, mountain biked, ran, gardened, played with my dogs, and did all the stuff it takes to take care of a home and family. I would be sick sometimes, but they always said it was from my heart, which I have had a problem with since I was a child. At a few times in my twenties, the doctor said I might have Lupus, but then the tests always came back negative and I didn't have all the symptoms on the list yet. I now have 9 of the 11 on the list. It wasn't until I had a stroke, my second, after spending 10 days in the Florida sun on vacation, that I was diagnosed. That was in 2008. I had to quit my second job, then my main job in 2011 and go on SSDI and LTD. I can't even mow my own lawn now and some days I can't even get out of bed. I totally understand how you feel Paul. I would say though that the most important part of life is not health, it is how we handle it and who you have as your support system. I have God mainly, whom I can talk to in the late hours. Then I have a wonderful wife and family who are so supportive and help me all the time. Our church family is pretty helpful too. However, when nobody knows what I'm going through, or I have a question about one of my many illnesses related to my Lupus, I come here. Everyone here is always so nice and knowledgable. I have learned a lot about my illness reading posts on this site, and have been able to help others myself. I am so happy you were able to kick the cancer and I pray that the Benlysta works for you. My wife has Bipolar disorder too, and is on SSDI for it. So if you have any questions about that, feel free to ask me. God bless and I'm glad you found this site.
Sorry you have had so many bad experiences as a result of lupus. It is difficult to cope with as you slowly are forced to abandon the things in life you enjoyed due to this crippling disease. I just try to enjoy doing the things I still am able to do and hope for improvement over time. Fighting the depression, which comes and goes, is the toughest part for me. The medicine seems to be helping some, however.