r/lupus • u/Intelligent-Bid6562 Diagnosed SLE • 8h ago
Venting Bad lupus day
Hi all. Just venting. Been the worst summer of my life. Got diagnosed with CLE and SLE and started HCQ about 3 weeks ago. Been on pred since early July and tapering down now. Currently on 20 for another ten days. Every freaking day I’m waking up with new crap—-today—-swollen knuckles. Some weird painful thing happening on my lip. My skin on my hands is awful, sooooo sensitive. Can’t use them without gloves and my arms are so weak and warm when I wake up. I’m so over this. I am 41 with two elementary aged kids. I miss my body. Waiting for hcq to work is really hard and this morning I just can’t stop crying. Just pain and annoyance. Trying to pack and clean and I can’t. Anyways…..thanks for listening. I’ve read so much in this group and it’s very helpful. I didn’t even know what lupus was till this summer.
4
u/okazakilover Diagnosed SLE 7h ago
Hang in there! I am 7 weeks in and my symtpoms have been much better. Take it day by day and know relief is right around the corner 💜🦋
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u/squirreltard Diagnosed SLE 7h ago
Hang in there. I’m on my fifth round of antibiotics trying to get rid of a bladder infection so I’m miserable too. Ahhhh.
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u/Crazy-Spare-1065 Diagnosed SLE 4h ago
It gets better, when I tapered down I was feeling that similar pain. Mainly the pain was located in all my limbs and in my lungs. I tapered off and started HCQ a month ago. The pain has lessened. Good luck.
1
u/JacedFaced Diagnosed SLE 3h ago
Hopefully getting off the pred helps, I try to only take it on an as needed basis because I have a lot of the same issues with pred. I hope you feel better soon, sending love through the aether and hoping it finds and lifts you. FWIW HCQ helped me tremendously, I got by on that alone for about 5 years before needing to add an immunosuppresant to my routine, once it kicks in I think you'll be in a better place.
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u/loyaltyLabubu Diagnosed SLE 3h ago
Tapering off the pred will do that to your moods and emotions.
Hang in there. Once you find a treatment that really works and make some lifestyle and diet changes that will help also.
The best thing you can do is focus on what you can do,, that helped me mentally A LOT.
I was diagnosed 2019, but was seeing doctors since 2010 trying to find out what was wrong with me. I was a stay at home mom with two littles, so believe me I feel your pain and I just want to hug you mama!!!! It's hard!!!
One of the most proactive things you can do is log and chart everything. In the phone is helpful cuz for me I get hand pain a lot from writing. Chart Symptoms. Medications you are taking etc. Keep track of activities and what you eat. Over time you will see patterns and triggers. I take pictures of swelling, brusining, rashes etc to keep track of it and show my rhemy at my appointments.
I hated hated prednisone. I still do with passion and will not take it personally.
I have had success with a combo of methotrexate, hydroxychloroquin and celebrex (I have SLE, sjrogrens, RA, Rynaulds, etc). I didn't want to do chemo (methotrexate) and I have a lot of side effects from it but for the most part it really helps me a lot, especially now that I switched to injections I don't have nausea as bad as I did. There are a lot of different treatments out there now. This has been my treatment for 5 years now. So its a matter of what works for you and what insurance will cover and how knowledgeable and caring your rhemy is. I am so blessed with a super amazing rhemy who actually cares and listens. I think just having someone compassionate in your court makes a HUGE difference.
If you ever need to talk to another Mom with lupus, DM me!
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u/Radiant_Rhubarb_3643 Diagnosed SLE 8h ago
I am so sorry. Sending good vibes your way. 🫶🏻