As I’ve mentioned in my previous ‘newbie’ post I’m in limbo somewhat as I have what feels like an ever growing list of CTD signs but I’m waiting on my latest blood results and dates for various investigations my rheumatologist has requested.
Yet another oddity has appeared on my thigh and I’m worried it’s purpura. I have erythromelalgia and it’s been particularly bad today - hence I’m not sure if this bruise/rash is the erythromelalgia or if it is something I should speak to my doctor about? My ankles, knees and hands seem slightly puffy too in recent days. Is purpura a lupus thing in anyone’s experience? I have attached a pic.
Thanks ever so much..
Frances
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Winter_night
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Hello WinterNight. It appears in your picture to be a simple bruise. Purpura presents very differently as reddish and purple plaques usually in groups on skin. It is a good thing to take pictures of your skin symptoms. It helps Doctors make a solid diagnosis. Best, Titters
Thank you Titters. It has almost completely faded overnight, phew! I’m definitely anxious at the moment, questioning everything. I have no idea how I managed to bump it and not notice but I am insanely clumsy at the moment too 😁 All the best X
Thank you Spanielmadlady, it has faded overnight thankfully. I had a rough day yesterday and was definitely in catastrophe mode! 😆 I have had some seemingly random bruises too but I know from my bloods there’s nothing sinister. More likely chronic clumsiness. All the best X
I go into what I call clatter mode .....my favourite is bruises on forearms from door handles 🙄 .don't stress about an increasing list of symptoms...we've all got one as long as our arms.keep smiling xx
Change of subject but didn’t want to forget to tell you that a big study came out of Sweden on comparing RA patients on long term 5 mg prednisone (with other immunosuppressants in some) and those without. Damage was significantly less in those on prednisone and side effects negligible. This goes against current recommendations and apparently will be a big shift. The article said many rheumatologists ignored the recommendations and kept their patients on low dose prednisone anyway.
I know that there are rheumies using the "old-fashoned" recommendation of low dose pred for RA, usually 10mg. Be interesting how they adjust - they keep telling us that ANY rheumy would choose methotrexate over pred.
Well, I think the patients did better when on 5 mg prednisone plus the DMRD. The recommendation has been to keep patients off steroids if I read it right.
These studies keep adapting, then re-adapting. I don’t have arthritis so it is not an issue in my case. I believe it was a Medscape article that came in my email.
I just read Humira has been successful in some patients with dysautonomia. No chance I would be given this off-label, though. Too expensive and not enough evidence.
Doesn't surprise me to be honest - DMARDs may do some things well, there are problems they don't address that relate even more to QOL where pred does help. I've been on far too much pred for far too long for comfort but I haven't had any concerning adverse effects to date that I know of but I have had 13 years of pretty decent life all things considered and have been able to function which was the main thing.
The quality of life issue is huge! I brought this up to my rheumatologist last time I was in. That risk/ benefit ratio has to be more carefully considered and adjusted with age and new illnesses that may limit life expectancy. He agreed. He did insist on getting copies of the last bone density, though, since I had had radiation to the pelvic region. I was lucky - no additional loss from it.
Happy you have done well with no major side effects. This new study may result in a shift regarding prednisone use.
Our local osteoporosis guru insisted on getting my dexascan results - only sent to me by the private clinic that provides the service. Her face was a picture - she'd never seen results like them in a patient on pred! Just keep on what you are doing she said
Are you saying that the pred has not hurt your bones? That is good news. I have been treated for osteoporosis for years before being on pred. The standard meds have not been very affective. My doctors are pushing me to go the Prolia route and I have been very hesitant. The endocrinologist in my last virtual appt. really was making a case. I am worried about the side affects being locked in my body for 6 months. I had been on Forteo at one point and was sicker all the time. I have had broken bones, but from falls. And yes, by dexa scans continue to get worse. Unfortunately, I have other contributing factors toward bone loss, lupus, hyperparathyroidism, deficient Vit. D, pred, , who knows what else. I wish I wasn't being so skeptical and chicken about Prolia. Glad to think that maybe the pred isn't so bad. Like I said, I was already diagnosed with it before the pred. Glad you brought this up.
Thank you for your response. They won't treat the hyperparathyroidism unless the calcium is high. My Dexa scan scores from a year ago April were : Bone Density Scan dexa (4/21) - rt hip tscore (-3.6), lt hip tscore (-3.2), forearm tscore (-2.5) - osteoporosis. I am really trying to do the right thing, but it isn't so easy.
Yes, you seem to really be able to counteract the prednisone side effects. 💃🏻 I have starting eating yogurt - have never been consistent with calcium pills - and hoping to not go into the osteoporosis range. The low carb is important too. You are right about that. I am back on the program! Hope A1c is better in six months.
Hi Kay, Hope you can lower your AC1. I am showing pre diabetes since I had Covid in Nov. 2020. Not sure if that is the cause or not. Glad your bones are working to stay healthy. My last scan results were - Bone Density Scan dexa (4/21) - rt hip tscore (-3.6), lt hip tscore (-3.2), forearm tscore (-2.5) - osteoporosis.
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Negative ANA Test & New Rash (photo) 
👣👣👣👣👣👣👣👣👣👣👣👣Barefoot with a new Rash👣👣👣👣👣👣👣👣👣👣👣👣👣👣
New to lupus - bad facial rash
is this a lupus rash? 
Is this a butterfly rash? 
