Hand issues

[Ophelia1]

Hello all

I've had a diagnosis of lupus for nearly three years. I tried hydroxychloroquine first and then methotrexate, but the side effects were terrible and I stopped taking them both. I'm feeling quite unwell at the moment and glad to be seeing my rheumatologist soon. I've had raynauds for a couple of years now, and I often wake up during the night with tingly stiff hands, but recently I've noticed something new, which tends to happen mostly at night. I attach a photo. You will see the blotchiness and general redness to the hands. Has anybody experienced anything similar and if so, what is it? I don't think it's related to the raynauds because my hands tend to be quite warm when this happens, but it's uncomfortable. My hands feel a bit swollen when they get this redness. I must stress also that the photo does not really show quite how red the redder sort of striped bits are but you will also see how white the skin below my hand is. So, basically the hands go very red, with redder parts i.e. where the three sort of striped areas running up to my fingers are.. Thanks

[Boeingbabe]

Would u get checked for scleroderma just incase ? Could be a mast cell activation response too or indeed a pots symptom ......

[Ophelia1 in reply to Boeingbabe]

Many thanks for your reply. Food for thought.

[Bailey1004]

Mine go red for no reason and itch and burn I could scratch my hands off sometimes I have been diagnosed with raynaurds waiting to be diagnosed with lupus

[Ophelia1 in reply to Bailey1004]

Thanks for this. Best of luck with your lupus diagnosis. All the best.

[dg70]

I often get bright red, sometimes blotchy underside of hands and feet. When I'm cold or hot. It lasts no longer than half an hour at a time. I don't get swelling like you. I get pins and needles quite often and purple feet if I'm in one position too long. I was told it was peripheral neuropathy from GP and Rheumy.

[Ophelia1 in reply to dg70]

Hi dg70 - Yes, I also get the tingling. Such a weird and horrible feeling.

[Florence91]

Sorry about all that Ophelia1. You need to speak to your rheumatologist. I have not had a prob with hydroxy so long as taken with food. MTX is different and I felt wretched but it did some good. I had to take in divided doses in the end and then went on steroids and continue with pred and hydroxy 15 years on. Not for us to speculate on what is happening in your hands at the moment. Wishing you better days and that appt soon.

[Ophelia1 in reply to Florence91]

Thanks for this Florence 91. This disease is so frustrating. Always something new !

[Gardenpots]

Hi Ophelia so sorry to hear you’re struggling and feeling so uncomfortable. I’ve been taking Hydroxychloroqine for over 10 years now for my Sjorgens syndrome. I had side effects of upset stomach etc for a few weeks but this soon settled down. Before taking it my hands and feet were frequently hot and red and a little swollen, mainly when waking up. This too settled down, I have Raynauds but take no other medication at present but wear wrist warmers and gloves, using hand warmers if I’m out longer especially when it’s cold. I hope your consultation with your rheumatologist will help you feel more comfortable and reassured as they are best to plan with you where to go next.

[Ophelia1 in reply to Gardenpots]

Hi Gardenpots - Thnaks for your reply. I think I'll try the Hydroxychloroquine again. I'm tired of all the symptoms and they're definitely getting worse!

[lwowkwin]

I sometimes get the same symptoms. I have been diagnosed with lupus because i meet acr criteria for it with enough symptoms and positive labs meaning ANA positive but not specifically for anti- DS or any others like smith, rnp etc. but I have always suspected something else as primary or at least in addition to lupus because of this. The hydroxychloroquine may have helped, maybe not, either way not remarkable enough a difference for me to tell. I see functional medicine as well and they believed it was related to MCAS or mast cell activation syndrome and/or histamine intolerance. honestly the lifestyle changes and meds they have had me on have made the biggest difference ie taking antimicrobials for methanogenic overgrowth of my gut, going gluten free, trying to work on mindfulness/stress relief, gentle exercise like yoga (heavy exercise or elevated temperatures and heat make it worse), more sleep, supplements for nutrient deficiencies on labs, mold remediation and avoidance of other common mold exposures/toxins etc. take ketotifen ie mast cell stabilizer, low dose naltrexone and synapsin which have made a noticeable differnce for this in addition to other symptoms. still have no clue what causes it, all seems random when it happens. may be related to some sort of estrogen dominance situation as iv also been diagnosed with that via dutch testing which reveals my metabolism of estrogen stinks basically. thinking maybe exposure to hormone or endocrine disruptors exacerbates it but those seem to be ubiquitous in our environment today so hard to pin down one thing as the source of that sort of thing. anyway hope that helps. im still on the hunt for answers too if anyone has anything to add in this department. sorry for all the rambling, if all this werent enough I also have raging ADHD lol 😂

hand swelling, erythema/redness, most pronounced on the palms of the hands.

[EG74]

Hi, my hands used to get like this and still happens time to time. Look for erythromelalgia. I also have this problem with my face after I do any exercise, yoga, gym, etc