Lupus pain

Brain freeze headaches and I felt like bugs were crawling on my face. I had to stop the Plaquinel. I use Restasis for dry eye twice a day and Systane Complete. I also had punctum plugs put in by the doctor back in May and they have been a life saver. I hope this helps. Blessings...

Hi @twinkle23
I was diagnosed with MCTD back in 2002. I used to be in a lot of pain in those days. Dr started me on Hydroxychloroquine. Because I had Scaladerma more so than Lupus, they had me on an infusion called Cytotoxic (I could be spelling it wrong) Got a reaction from it so they then put me on Rituxin which I have now stopped this year as it is giving me too many upper respiratory infections.
What I will tell you is that once I quit working thus lowering my stress and starting warm water therapy at a local gym did wonders to my pain. These days I hardly have Lupus flair ups. And please talk about your pain with other people. It really helps! I hope you find a medicine that works for you. Maybe time to change your Dr? I am lucky I have a Dr who is great and open to receiving emails from me 24/7. Praying for you. 🙏

I’m familiar with Cytoxin and Rituxin. What will you replace them with? Is your scleroderma controlled now? I was treated with Benlysta for five years but kept having infusion reactions so was taken off it. I was then prescribed Methotrexate which gave me sores in my mouth and nose. It’s been quite a ride. I love my doctor so won’t be changing him, just meds. I may suggest the injectible form of Benlysta. I felt the best when I was on that, minus the infusion reactions.

Hi
I will probably replace with tocilizumab (Actemra).I had Methotrexate lung when I took Methotrexate, so can’t take that. For lupus I am also on leflumide (Arava). It’s hard to tell if scleroderma is under control because it’s internal. It’s mostly effecting my lungs. What is Benlysta for?

Benlysta is a biologic for SLE without kidney involvement. It’s now available in a self injection but when I took it, only by infusion. You said your scleroderma is internal. How did they diagnose it? I thought it affected the skin.

It is a skin hardening disease. I have a lot of scarring on my lungs. It sounds like crackling of glass. They do Chest Ctscan to monitor the lungs. My esophagus is involved also. I have an appointment with the rheumatologist. Need to discuss a lot of things. Coming to an end of 2 years of using Tymlos for my osteoporosis. Not taking Rituxin for lungs so need to discuss replacement. It’s never ending. Lol

I’m giving you a big hug 🫂. I have an idea how hard it must be. You are in my prayers.
I’m interested in what you’ve experienced with osteoporosis. Last dexa, 2 years ago, I was diagnosed. I’m not happy with taking a drug that increases my bone because my spine xray shows bone spurs from my c-2 to s-2.

I hear you about the massage. I think it still helps, but it's no longer a pleasant experience. It hurts. 😔

Hi, I had 4 episodes of ITP which “can possibly” be a precursor to SLE; however no Dx for that, yet. Hopefully never. But I do have 2 knee replacements, enthesitis in foot joints (fusion recommended), body aches & stiffness, low back pain with 3 episodes of Myofascial P.T. I get some relief from water exercise classes & the hot tub next to the pool; but I have to be consistent. Also, I’ve tried Feldenkrais exercises in the past (can see on you-tube) for Neuroplasticity connection, nerves to brain; they are small & gentle movements. I used to do Pilates but got too stiff. Maybe if I go to more water classes, got lazy over the holidays & family issues. Good luck!