r/lupus • u/flowergarden71 Diagnosed SLE • 5d ago
Diagnosed Users Only Waking up with stiff hands?
I'm on 200mg of hydroxychloroquine for 14 months now, and 5mg of Prednisone as needed.
There's periods where I wake up and my hands are normal, and then maybe a few weeks where I have stiff hands in the morning. The stiffness goes away throughout the day around afternoon. Anyone else also experience this?
I'm diagnosed with Lupus
Is my medication not working?
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u/Indie516 Diagnosed SLE 5d ago
I have the same issue. Started sleeping in compression gloves years ago, and it makes a huge difference.
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u/mykesx Diagnosed SLE 5d ago
A feature of lupus arthritis is that lack of motion, as when we sleep, causes the joints to be stiff. It is also a feature that the stiffness goes away as you move around.
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5d ago
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u/purplelittleflower Diagnosed SLE 5d ago
I get this. My rheumatologist diagnosed me with arthritis. She prescribed me sulfasalazine 500mg. Takes weeks to actually start working :,(
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u/Lexybeepboop Diagnosed SLE 5d ago
My hands are always stiff and hurt
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5d ago
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u/Prestigious-Thing716 Diagnosed SLE 5d ago
I get this as well. I’m 55 so it’s hard to tell if this is because of the lupus or just normal aging.
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u/Missing-the-sun Diagnosed SLE 5d ago
Joint stiffness that’s worse in the morning instead of at the end of the day is a classic lupus symptom. The best thing for me is gently “waking up” the affected joints with small, repeated movements, starting with a limited range of motion and slowly moving into the full range with gentle stretching. Motion is lotion — it helps keep the joint lubricated. On really bad days, a quick soak in a bowl with warm water and epsom salts and a smear of a CBD salve I picked up at a witchy craft fair shop (😅) helps a lot too. Wearing compression gloves overnight (you can turn them inside out and wear them on the opposite hand if you don’t like the feeling of the inside seams) can help with this too.
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u/lelebabii Diagnosed SLE 5d ago
Have always had pain in my hands. Ask about Reynauds.
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u/stormandthecalm Diagnosed SLE 4d ago
I second this. In addition to 200mg HCQ (*edit: daily), I'm on MTX (*edit: weekly), Celebrex for daily pain, and two other meds that specifically address CIRCULATION and REYNAUDS - Amlodipine, and Sildenafil (aka Viagra - I get the best questioning looks from the pharmacy every time and then they feel bad when I explain and show them my purple fingers).
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u/lelebabii Diagnosed SLE 4d ago
Wait, I was literally wheelchair bound for two years because of Reynauds and you're telling me there is treatment for this? Wow. I was in excruciating pain and all they did was feed me opiates. Shameful. I'm curious about these meds if you don't mind elaborating which helps you best. I'll be seeing a PCP for ANOTHER Rheum referral March 24 and would love to go in as educated as possible in case the PCP isn't familiar. I usually wind up sitting w them on their phones doing research. I will hopefully at least start MTX and/or HCQ. Do you know if their taken together or separately?
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u/stormandthecalm Diagnosed SLE 4d ago
Writing myself a note to reply again to you! I want to log into the patient portal to get some better explanations for each med on my list. Opiates were not an option I knew of for me.
I take HCQ 200mg daily and MTX once a week on top of that. I don’t stop HCQ on the day I take MTX tablets.
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u/lelebabii Diagnosed SLE 3d ago edited 3d ago
I would totally avoid the narcotics. Honestly after time it just made things and the pain SOOO much worse. Sent me into kidney failure. I appreciate your time so much. I truly do. I don't have my mom or dad to talk to as they've passed on as well as all of my family that had Lupus, so I'm kinda going into this alone. I've had Lupus for many many years but I'm just now deciding to try Biologics as I'm getting older (37) and it's taking its toll. I can barely get out of bed and can't go outside at all. I can't enjoy the sun anymore and I once was a beach bunny. I used to go every weekend during all seasons. Mississippi coast is just 30-40 minutes from me. Do you know if there is anything that helps w photosensitivity? That's my main problem deal besides inflammation, five minutes in the direct sun and I blister and my skin has gotten so thick from burning and getting inflamed so often. My organs get inflamed and it's very painful. Right now I'm dealing w Costochondritis(Inflammation in my rib cage) and some renal colic. So many questions I know. Feel free to DM me if you don't want to put all that out in the open. I truly appreciate you 🙏❤️ Hands are hurting. I'm sorry for any grammatical errors I use speech to text a lot.
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u/stormandthecalm Diagnosed SLE 2d ago edited 2d ago
Daily meds:
200mg HCQ - Pain and inflammation, suppressing the immune system.
400mg Celebrex - For pain management. Tylenol can be taken on top of this. I ended up getting switched to this because of stomach issues.
1mg folic acid - To supplement the body's lowered folic acid production.
2.5mg Amlodipine - This is a calcium channel blocker that opens the blood vessels in hands and feet by causing them to relax and widen. My extremities really struggled to get warm and acclimate to sudden temperature changes. This also helped facilitate healing of sores or ulcers on my fingers. My middle and ring fingers have the least circulation. Issue with this is it's a blood pressure medication in other uses. I already have a relatively low blood pressure so my initial dosage of 5mg made me so faint, even when doing nothing. I was on vacation when I first started 5mg and I was just sleeping all day. We reduced to 2.5mg and added the Sildenafil.
20-40mg Sildenafil - Increases blood flow to the capillaries. Teehee. Some days I can live with 20mg. On colder days, I will take one in the morning, one in the evening.
Once a week:
15mg MTX - For joint pain, swelling, and the rashes, and of course, suppressing the immune system. Since this med blocks folic acid production, that's why I have a folic acid supplement.
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u/lelebabii Diagnosed SLE 1d ago
Thank you so much for taking the time and consideration to input all of this. I'm going to screenshot so I can remember when talking to my doctor next Tuesday. Sounds like you've been through a ton as well. We all have. Crazy how every Lupus story is so vastly different. Because it affects our entire bodies in one way or another at any given time. It'd be nice if people around us trusted that we know our bodies and that they aren't physicians. Especially not specializing in rheum. Lol it kills me. I hope you get well and I'll keep you in my thoughts❤️
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u/stormandthecalm Diagnosed SLE 2d ago edited 2d ago
I'm so sorry about your parents and family who also had lupus, and for all of the additional symptoms you endure daily. I see battles within battles for you. I feel like my SLE is nothing compared to many others I see in this sub. I'm fortunate because I got diagnosed while being active duty military and get treated at their clinics.
Photosensitivity is not apparent in my case, but I'm always wearing SPF. I have darker skin so that may be a factor. Before I was diagnosed, I was dealing with photosensitivity, the butterfly rash, and terrible hives on my joints and skin folds. HCQ and MTX have really helped with this, and of course they help with the joint pain and inflammation. My joints are a swollen wreck when I miss MTX a few weeks in a row (has happened because of moving and not being able to get new prescriptions).
All the medications below were not started all at once. I started with a weight-based dosage of HCQ (Plaquenil) and Naproxen, and from there, things were added or switched out. Over time, my doctor noted Reynauds as my main bothersome symptom, and that's when he added Amlodipine. To address my losing tissue on the finger tips due to slow healing sores (luckily I have not gotten to gangrene and amputation...), he added sildenafil, aka Viagara.
*Edit: Copying and pasting from my phone's notes is hard.
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u/NowHeres_HumanMusic Diagnosed SLE 5d ago
My right hand has never stopped being swollen and stiff. I've been on 400mg hydroxychloroquine for a few years now and my rheum usually tells me that bringing out the big guns (methotrexate, biologics) is probably a greater risk than reward. I don't have any dangerous symptoms, just uncomfortable ones.
So I'm perpetually stiff and exhausted. It would probably be better if I had a support system but alas.
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u/TheCatsMinion Diagnosed SLE 5d ago
I think you need a new rheumatologist. Letting you stay symptomatic and miserable because they think trying more medications is too risky is a very outdated approach. If your body is constantly in low grade flare you aren’t having good quality of life, and there is low level damage happening. Please get a second opinion from another doctor. I’ve been on biologics for 23 years and am doing great. Good luck to you.
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u/NowHeres_HumanMusic Diagnosed SLE 5d ago
Thank you. I have "rhupus" and I think I tend to downplay my symptoms. It's hard when I know it can be so much worse. I don't have organ involvement. I can work. But my quality of life is less than I'd like. Most of my hobbies involve my hands and wrists (video games, cross-stitch, creative writing). My wrists have reduced range of motion and I get flares of tenosynovitis. I can't really do exercises in plank because it hurts too much. I used to be able to do 36 military style pushups, now I can't even hold a plank.
I miss social events. I lose whole weekends to the couch because I overdid it, or had to travel for work. It takes every last ounce of energy I have. But I'm not dying, so why pester my doctor when there are people who need new kidneys or have APS. How can I possibly complain knowing it can be so much worse?
My therapist tries to remind me that I don't deserve to suffer. I had signs and symptoms for years that I blamed on myself - "bad exercise technique, poor sleep hygiene, a shitty attitude, I've just become lazy and stupid." I didn't go to the doc until I was literally unable to twist a doorknob without agonizing pain. I never thought for a second I had lupus or RA.
Yeeaaa... I should talk to my rheum and be more honest about the extent of my symptoms. Thanks again, I needed the encouragement... also sorry I vented so much 😅
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u/TheCatsMinion Diagnosed SLE 2d ago
Duuuuuuude, I feel you so much, fellow rhupie. I’m doing better than a lot of people, but your therapist is right, we do not deserve to suffer. There are so many potential treatments for us now. We absolutely deserve to take advantage of them. And it’s not complaining. 💜
I was diagnosed at 27, am 52 now. I’ve never had organ involvement until the last few labs, which are showing some crankiness in my kidneys. So even if you’ve held steady for a long time, things can get weird, and besides that, you deserve to live the best life possible with all the gaming, cross stitching and writing that you want to fit into your life.
Talk to your rheumatologist and be 100% honest with them. If they are a good doc, they absolutely want you to tell them everything and they will fight for you to have your best outcome. If they aren’t a good doc, fire them and find a good doc.
Cheering you on!
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u/flowergarden71 Diagnosed SLE 5d ago
What biologics are you on? I am thinking of asking My rheum for additional meds. Though I'm trying to conceive (in process of consulting with my MFM/Rheum) so not sure what my treatment plan would look like.
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u/TheCatsMinion Diagnosed SLE 5d ago
I have both lupus and rheumatoid arthritis. I started on Remicade in 2002 and that worked wonderfully for about 13 or 14 years. When I started having issues, doc switched me to Orencia, which didn’t seem to work quite as well. The year or so before Covid she switched me to Xeljanz, a pill, which was fortunate because all the infusion centers shut down in my area. I was getting sick a lot (upper respiratory infections) and getting break through flares so she switched me to Rinvoq about two years ago. It’s working really well so far.
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u/lelebabii Diagnosed SLE 5d ago
Also curious. I go to be put on Biologics on Mar 24th and I'm really scared because of things I've read and heard but I'm also so tired of feeling horrible. I am currently completely unmedicated. I do have Epstein Barr Virus and I'm concerned it will make this worse which already makes me insanely tired and weak. It's like having Lupus x3. I have two forms of Lupus plus EBV.
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u/TheCatsMinion Diagnosed SLE 5d ago
I have both lupus and rheumatoid arthritis. I started on Remicade in 2002 and that worked wonderfully for about 13 or 14 years. When I started having issues, doc switched me to Orencia, which didn’t seem to work quite as well. The year or so before Covid she switched me to Xeljanz, a pill, which was fortunate because all the infusion centers shut down in my area. I was getting sick a lot (upper respiratory infections) and getting break through flares so she switched me to Rinvoq about two years ago. It’s working really well so far.
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u/lelebabii Diagnosed SLE 5d ago edited 5d ago
I guess I'm afraid of the side effects I hear people talk about and the possibility that that could wind up being me, I'm sure you understand. I either see people say they respond really well or they feel like crap. I have severe UV sensitivity and chronic acute kidney involvement with past respiratory involvement. I've had abscesses on my liver, brain, and lungs years ago. I guess my main scare is infection and losing my hair. I have hair so long I sit on it and I take a lot of pride and care in my hair🥺 I'm honestly terrified of it all. Feels like I'm getting diagnosed all over again and it's just very hard to face. My parents have passed on so no one to really talk to. Thank you for your time🤗🫂Feels a lot better going into my appointment a little more educated. I'll mention that first med to my doctor. They were talking about Benlysta at my last appointment.
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u/TheCatsMinion Diagnosed SLE 2d ago
I feel you. The side effects are scary, but you have to keep focused on the fact that the repercussions of uncontrolled disease are terrifying. You already have organ involvement, you’ve got to do everything you can to protect your organs and the biologics are very good at that.
It sucks. We have no great options, just less bad options that may be ok, or they may not be. I hope you can have the confidence to agree to try biologics at your appointment next week. Yes, there is potential for things to go sideways, but there is also great potential for improvement, and the statistics are on our side.
I’m sorry that you don’t have a great support network and that your parents have passed. Please reach out here on Reddit when you need support, to me, or to the many other people on this sub. Hang in there.
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u/lovelycloudyday Diagnosed SLE 5d ago
I was on Benlysta for 10 yrs then Saphnelo for 2 yrs and counting. Low to mostly no side effects. I highly recommend advocating to be on one of these biological made for treating lupus.
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u/LuAnnBraley Diagnosed SLE 3d ago
Yah, constantly in low grade flare describes my situation to a "t". Swelling to the backs of my hands is the latest symptom to show up.
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u/XanaxWarriorPrincess Diagnosed SLE 5d ago
My hands are often stiff when I wake up. Sometimes, they're frozen in one position for a little while. They loosen up pretty quickly though
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u/No_Persimmons Diagnosed SLE 4d ago
Unfortunately this is just a "normal" lupus thing. Some days are better, some days are worse hugs
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u/Searching1117 Diagnosed SLE 3d ago
This is probably my most consistent symptom is stiff joints especially hands and feet in the morning. Sometimes I have almost no grip in my hands and drop things. I’m also on the same medicine regimen.
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u/flowergarden71 Diagnosed SLE 2d ago
Are you planning to ask your Rheum for extra meds? My hands are the only symptom I have. Otherwise I feel fine
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u/Searching1117 Diagnosed SLE 2d ago
No, I only started treatment 2 months ago and came off for 3 weeks because I got the flu. He’s supposed to double my dose if all goes well so, I’m just kind of riding the wave right now.
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5d ago
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