Today I had my MRI of the left knee and saw the orthopedic immediately after. …I have a large bone bruise and an abnormal infusion (fluid)around my outer knee. .he said it’ll take a few months to heal and will have to stay off of it and lots of ice. Again I get another injury from doing absolutely nothing , just trying so hard to walk . .that means being in the wheelchair more , not my favorite. …using crutches are very hard on my degenerated shoulders, elbows, wrists and arthritic hands so he doesn’t want me to injure myself more…he put me on calcium and vitamin D because now that I’m having bone injuries I’m prone to fractures …I been short of breath with heart palpitations and chest pain since late week and it got much worse after my benlysta treatment Monday . This is how my flares begin. …fortunately my rheumatologist squeezed me in today too witch was totally awesome! she’s trying really hard to save me.
She was upset about my MRI and how rapid and out of control my lupus is… .I’ll start cytoxin November 5 followed by a check up appointment with her …she put me on a medrole pack for my lungs. she said my upper chest sounded very tight through the stethoscope, of course it feels tight and awful too…she gave me mobic to help my joint pain and fentanyl path instead of morphine …I’m hoping the fentanyl patch will give me relief with out the upper and lower digestive problems that morphine gives me. .so lots of changes !!Hopefully something will help slow down the progression of my diseases:(
Try some Canadian Crutches- they have forearm supports that help take pressure off your shoulders and wrists
Besides Benlysta what meds have you been on?? No prednisone?? Bone bruises are VERY painful - hope the fentanyl works
I don’t respond to prednisone long term. I just had 20 mlg in an IV on Monday with benlysta and I’m still flaring up! my Dr’s figured out a year ago I was gonna need the big guns. . .I’ve taken methotrexate, enbrel, celebrex, arava with no response. .I’m taking benlysta , plaquenil, baby asprin, cellcept, ibuprofen, gabapentin, tramadol, morphine, carafate, bystolic, (inhalers)tudorza, symbicort and ventolin .(as needed)tazandine, zofran… Cellcept is the only medication that use to help by improving my lung function but it’s not working as well anymore. .I’ll start cytotoxic in 12 days so we’ll see. .my rheumatologist is harassing John’s Hopkins everyday to get me in sooner! It’s very unsettling to see my very renowned specialist freaking out over me:/
Just wondering- 20 mg of prednisone is actually a fairly small dose. Pulse therapy is 1000mg each day times 3 and is used for catastrophic flares I was on 60 mg a day for 18 months and I am small framed- heavier people can go up to 80 mg. Many rheumies don't like to use prednisone long term because of side effects Maybe you will have better luck with the Cytoxan - it works miracles for some Hang in there!!!!!!!!!!
Oh Dawn,
I am so sorry for the additional trauma to your body and mind. You are in my prayers! Stay brave.
Dawn Celeste, I know you are struggling so much, and that you have great care. I admire you for staying strong and determined! Has anyone looked at the chance your particular combination of medications could be interacting and making you more unwell? Always worth considering. I think your doctor is a huge blessing, pushing to get you more help, improve your quality of life, and help you get back to doing what you wish to in life.
Please don't feel bad about having to use tools like the wheelchair for a time. If needed, they can have someone come to you to do home visits for physical therapy, who is well acquainted with your situation. You wouldn't lose muscle strength as much. Consider talking with your doctor please? And if your wheelchair must be turned by using your already painful and damaged hands and arms, it may be time for an upgrade if possible.
my heart is with you as you go through all of this.
hugs,
Louise
Louise,
Thankfully my rheumatologist doesn’t make me suffer staying on medications that have horrible side effects and don’t work. .The list of meds I’m not on any more were all taken for at least their minimum amount of time estimated to see patient improvement. I became progressively worse with unbearable side effects on all of them so she took me off and tried something else. .I had my 4th benlysta infusion Monday , still my joints and bones are suffering severe injuries and my lungs are swelling up again so I’m starting another flare yaaay! This all happening while on on this medication so its clearly it’s not slowing my disease or suppressing my immune system enough. . saw her yesterday and shes taking me off benlysta and starting me on cytotoxic November 5…Every patient situation is different, in my situation because I never plateau, have gotten so sick so fast,I’m declining at a lightning speed there’s no time to just keep me on therapies for weeks and months that will not help … between all of my awesome specialist they all agree I’ve got a very “rare” pathology… they all agree on my diagnoses so there’s no conflict in how I should be treated or what meds I should be on. .I’m just in a very precarious situation and the doctors know it. like I said cellcept helps my lung function. .sure I throw up more often on it but I know it’s helping my severe pleurisy pain and lung function and for that I’ll put up with puking once and a while:)