Saw my rhuemy today..I had a long list of issues to go over with her because I've been ina flare since I saw her last month. Her game plan is 2 more cytoxin infusions as long as I keep showing signs of improvement neurologically and pulmonary function but we'll have to see if this flare will resolve it self??next will be rituxan infusions indefinitely for my joints and bone issues. She dose agree i probably have a form of homocystin disease but agin the no cure and can only possibly be a pacified with b vitamins and folic acid witch I'm already on. The polycondritus effected my ear agin during my flare, it's now too uncomfortable to wear my glasses so time for contacts:) she didn't tell me but I noticed on my discharge paperwork that she changed my diagnosis from SLE to Unspecified Diffuse connective tissue disease. I totally feel at this point that is a correct diagnosis more so than just lupus. Unfortunately i have several systemic afflictions going on at once and its already been confirmed that genetics play a big role in my diseases. She also prescribed nucenta to help with my break though pain. If anyone has tried it or is on it now I'd love to know if it actually helped. Im on a 25mg fentanyl patch every 72 hours and tramadol for pain but my every since my kneecap dislocated ive be in excruciating pain with it.i had an mri last night and hopefully the report will be ready tomorrow. My poor knee is such a mess:(i finally had to ditch my cane for a walker because I need more support when I'm walking, its been soooooo hard to walk but my orthopedic said I gotta do it.
She changed my cytoxin schedule too. I was supposed to go March 10th but now its the 3rd and I have to go again the 31st! And of course I have more drs appointments in between all of this, I need a vacation or a cure lol! We spoke about how I really have nothing left besides cytoxin to put my diseases in check but she did say that other(experimental)treatments are out there and she would "spin" whatever criteria needed to qualify in ordered to save me, love her! The thought of not having cytoxin or any other options is terrifying:/ ive been so unresponsive to so many medications and have continously declined
so fast , it has been a tremendous up hill battle. I haven't really put much though into this gastro appointment on Tuesday. Hopefully it doesn't open a new can of worms.. i mean I already know my liver is swollen , painful and looks weird in film but my functions are fine. But who knows what the rest of my surrounding organs are up to?? Just gotta take everything one day at a time:)
Sorry, you are going through so much, but, its nice to see you are so positive. I too, was diagnosed with a similar co-occurring genetic disorder called Mixed connective Tissues disorder. It definitely impacts how I walk and when my legs feel like jello. Its interesting that you say "genetics is a big role in your illnesses", I always was told Lupus is a genetic pre-disposed illness. Do you have any information to the contrary?
some info about the fentanyl patch...even though most say for 3 days, 72 hours, most pain specialist only prescribe them for 2 days, 48 hours. Reason is...last day there is hardly any helping. So to keep pain relief level up they have you change every two days.
You might consider asking her about this. Also you might ask about motrin as tramadol is opiate weak one but still one and it is not good to mix narcotics. Or you can just try ibuprofen, motrin, now and see if it helps. I found that it helps with especially that kind of pain a lot more than vicodin would. Just eat before taking.
I am very sorry....MRI should help i hope. The fact she says she do what she must to help you...is all you can ask and i want in a doctor. You are lucky to have her. You did show her about liver because other organs near there that can cause swelling...or even possibly your ribs are inflamed.
hey not sure where you live...but i give a lot to have a doctor who cared that much! i keep trying to find a decent one but without any luck. in norther calif...if any where near...i go to bay area if she was there! you take care, you have great out look but what else can you do? ...but still you are positive and that does help with pain and other things. so best to you.
ask her about the patch..she just might be open to asking a pain doctor and finding out how they do it two days instead of 3. good luck
Thanks friends! We are all going though such struggles but to be able to give and share support with this group is some of the best medicine:) my dear friend is dying quickly of ALS, hes only 41 and very handsome. His finance is one of my best girlfriends an my general practitioner. I spent some time with him yesterday, every time is so special to me because he won't be he much sooner.... his speech is almost gone and its very labor intense for him to say even a few words and can't walk anymore.... so I just cuddle up next to his wheelchair, holding his hand and giving him lots of kisses on the cheek and we cry.... he was a supper buff, body builder lifestyle, always busy an very successful.... now he's so frail but still handsom :) he really helps keep how I feel about my diseases in check. Yes im suffering but he's dying right before our eye's! When im with him all my issues disappear... I guess it's the mother, nurturing part of me that wants to make him better and could care less if I'm hurting or uncomfortable at that moment . I didn't want him to feel like he had to talk but I did ask if he was in pain and thank goodness he's not, its the only blessing in his tragedy... I've always been a caregivers of sorts my entire life , when my loved ones are struggling or suffering i jump right in to hopefully take some of the load off.. any time I get too down about my situation I immediately think of him and his family to keep everything in perspective.