Hello, anyone had anything similar to this photo please or any ideas?? Just been to urologist to try to get to bottom of blood and lots of ‘debris’ in urine and he said he was just there to rule out cancer and he’s done that but thought it was probably a ‘lupus thing’! However, he commented on the mess on my arms from being in hospital and having blood tests/ canulas and said that amount of bruising and bleeding wasn’t normal at all and said it looked like vasculitis and could also explain the bleeding from kidneys/ bladder too and some other issues. I had thought it was just the jnr drs being a bit haphazard with their needle skills (when I teased them, they denied it and said it might be a bleeding problem) but my whole wrist swelled up and went black/ green from just one blood test and this photo was after the canula was pulled out. Urologist said I have to see nephrology and vasculitis specialist and said rheumy needs to see photo but I feel it’s another unnecessary thing to add and probably just one of those weird lupus things that no one will find a cause for and will just resolve? Any ideas or experiences please?? Thank you!! X
Any ideas on secondary vasculitis? Rashes? - LUPUS UK
Any ideas on secondary vasculitis? Rashes?
No - even if that is what they decide in the end, for a start it must be looked at because there may be something that needs dealing with. Your urologist is right - and you need to follow it up if he doesn't.
Yes I think I’m just bored of being prodded and poked after spending the best part of the last 4 weeks in and out of hospital - and on full aggressive treatment regime of IV steroids, rituximab, MTX anyway so not sure what else they can throw at new things anyway?! The urologists seem very adept at insisting on correct referrals/ protocols and gaining patient compliance! I tried my best to get out of the cystoscopy (as I knew the bleeding wasn’t cancer) and he told me very definitely I would be having it and wrote to my GP and rheumy that I was trying to avoid it! 😬
Wouldn’t it be great to just have an easy disease and get quick easy answers for all our weird symptoms?! X
I really do understand - OH has been in and out of hospital over xmas and NY (because of bleeding) and the end isn't really in sight. Between us, we seem to have accrued a LOT of Hospital Xmas stories - maybe we should write a book 
But unfortunately you can't be 100% sure there isn't something nasty hiding behind the symptom you are sure is due to something longstanding and there really is a degree of comfort being told that that is so. It might not feel like it today - but it will down the line.
This is only a wild guess...& I would definitely follow up as your urologist suggested, .but I wonder if the bruising might be a side effect from Rtx? (I have RA not Lupus) I have recently had an anaesthetic & got a 4" bruise from the Canula, then a RTX infusion administered by a not too adept nurse & the same thing happened....both bruises lasted nearly 3 weeks.
I have never had bruising like that before & don't take any other RA drugs.
On a different occasion I have had a similar rash on my legs...my rheumatologist said it was "probably vasculitis" .....said he would "keep any eye on it"....I've had no further problems since - I do have regular blood tests kidney & liver tests are both OK.
I know having all these investigative tests is a boor, but better to get things sorted to confirm no special treatment needed.
Yes thanks I know I should get it all checked out and will show rheumy/ dermy but aware there’s so many weird things going on that I don’t want them to just be overloaded by my strange body 😬 especially in this case where it could be nothing.
I hadn’t thought about the actual effects of the drugs, more that it was just irritation and skin damage from bad blood tests/ canulas but that’s a good point. Although rituximab was in the other arm . I didn’t seem to manage to have many IVs in one canula place as I normally do (a well inserted canula has lasted me 4/5 days before of IV) as it normally badly bruised/ inflamed after one treatment so had lots of different sites. Maybe all the steroids with skin thinning etc is a cause for both of us?
How quickly do you find rituximab kicks in? Quicker the second time? X
Until my last pair of infusions I felt good within a couple of weeks, but after this last set on 3/17 December I'm still waiting to feel as well as I did before.
I don't know if it is the RTX for sure....it may just be a winter bug.
I'll give it a week or two......then get bloods done & see Rheumy.
Hope you get sorted OK.
Someone on here or the FB page said they were trying to give cheaper brands which weren’t working so well? I wasn’t well enough to check mine but I think it’s coming off patent so cheaper brands will be abundant soon 😬
I expect you checked yours though. Think mine was called rituxan last time - will check my infusion bag for infusion 2!
That does seem like early days to feel good though as you only had a month ago? - I think my pain and brain improved quite quickly last time but some of the other neuro issues and the severe fatigue didn’t lift for a few months. Although had started MTX by then too so always hard to figure out exactly what helps each part or what’s part of natural remission. I like to do it scientifically introducing one new drug at a time but obviously in a big flare they need to throw everything at once at you so hard to tell to make drug decisions for the next time. I keep thinking I want to try drug free but know that’s very unlikely to be a god decision based on previous experiences. Accepting the drug load has been harder than accepting the disease!
Hope yours kicks in soon. My sister in law has RA, quite badly with huge swellings. She’s just been to her rheumy who has said they are mostly stopping prescribing morphine, refused to give her more and said take paracetamol in her next flare?! Seems rather brutal...
X
Are you in UK? In UK we are told if Biosimilars are being introduced.
I have been on RTX (Mabthera) since 2016...& this is the first time I have felt ' iffy' after the infusions, which is why I wonder if it's just a bug & not the Rituximab....my Biologic nurses check thhe infusion is correct according to Rheumy scrip in front of me every time.I'm an ex nurse so I do keep a beady eye on things...I don't have Mtx with my infusion due to neuro side effects when on it previously.
Thankfully my Rheumy does not just keep adding on another drug. He is more likely to reduce dosage then build back up again....but all Rheumies have their own ideas don't they?
I had the same rash all over my body except on my face. I got it about 3 months before the Pain started and it lasted about 1 month before it went away. The Urgent care doctor put me on a week of steroids for the rash and itching, when that didn't help, he gave me a steroid injection, that didn't help so I went to my GP and he gave me another injection. It finally ran its own course and disappeared. When I got sick I mentioned this and they never connected it to my illness. Thank you for the picture, now I can show them what I had as they have not diagnosed it as yet. Have a great day!!! 😊💞
I’m not sure it offers huge clues though for either of us as I was in hospital when I got it and had various different views! The nurses thought infected, one dr thought an allergic reaction, another said ‘a bleeding issue’.
Have you had it again since?
X
I had it one other time before and it was when I had STRESS real bad. I do think it's connected. I'll let the doctors figure it out but wanted to thank you! 
🤷🏼♀️ I agree with PMRpro....medics must look into all this
😟 Looks a lot like one of the versions of rash my small vessel vasculitis gives me....when i talked to my GP about this recently she wanted me to show pics to my rheumy & discuss these ASAP + the other variations (lesions that heal ultra slowwwwwwwly etc)
Feeling VVVVVV concerned about you dear Melba 🤦🏼♀️. Can’t help relating to your ordeal on several levels (eg you already know my “infectious urinary tract disease” saga).
Take care...hope you’ll keep us posted ❤️🍀❤️🍀 Coco
Thank you! Yes we seem to have a lot of the same things 😬.
How was your small vessel vasculitis diagnosed please?
Please don’t worry about me, I am soooo much better, almost back to normal. I’m very lucky that my version of lupus is so quickly and almost completely responsive to steroids, especially high dose IV (and very lucky to have a great rheumy who works so hard to get to the bottom of my weird version - although I told him a lot of us on here are ‘atypical’ and gave your wise view we all have our own versions of autoimmunity and he responded with well I have a lot of typical lupus patients here too! (Implying politely that I was harder work I think!! 🙃)
Hope all your recent investigations have been as ok as possible and you’ve had lovely caring honest drs 🙂 I was very impressed with the urologist who gave his view but said, very honestly, he was a cancer expert, he didn’t know that much about lupus but he’d read up before he sees me next and it’s best to be honest. I said definitely!!! I’ve now had multiple drs all admit the limits of their knowledge and be honest yet try so hard to help - what more can we ask for?? 🙂
Xx
😘😏👍👍👍👍 THAT’S SO GREAT you’re A LOT better...and cancer guy was SO HONEST 👏👏👏👏
🤦🏼♀️ i know you are in really good hands + you’re one of our most brave + experienced patients, but i can’t help feeling concerned cause this sort of illness is such a rollercoaster & no matter how good our team, it’s still hair-raising for all involved: us, family, friends, colleagues, medics, pets 🤷🏼♀️...like being in a war zone non-stop....
🗣The small vessel vasculitis was initially diagnosed clinically by my GP : i was gobsmacked, but now i know the rashes were severe + totally characteristic...and this happened right after my infant onset lupus diagnosis was recovered & corroborated...so his eyes were wide open...+ the rashes responded to the right/indicated treatment. Shortly afterwards my rheumy agreed with this diagnosis, and since then has referred to my small vessel vasculitis at clinic appoints re various dermatology manifestations including those associated with my scourge ie simultaneous raynauds & erythromelalgia.
As with several of my diagnoses, my luous clinic chief rheumy & i have agreed the small vessel vasculitis diagnosis can remain clinical until signs & symptoms stop responding so positively to treatment, so when we need to know more about my version of this SVV stuff, we’ll look at it harder (🤷🏼♀️ Am i too old & cynical: typical NHS, time & cost come first when deciding whether a patient’s manifestations require greater “investment”). Which is ok with me cause my lupus clinic is actually an international leading vasculitis & lupus clinic...so if my signs & symptoms get spookier i’m already under the right rheumatology team 😉
Thanks for asking‼️. Will message you asap re where the ENT/immunology investigations are now...l covered this recently here in one of suzanna’s threads and probably shouldn’t bulk your thread up with it + inflict it on readers yet again. Now am squaring up to another 2 series of parallel appts in feb: gastroenterology dept clinics re the Intestinal Failure etc + Neurosurgery & pain consultant & physio re the latest re the chonic spine stuff becoming more severe...it’s 🥳 FUN FUN FUN...
✊✌️💃❤️🍀
Gosh you do have it tough 🙁
That’s useful information to know vasculitis wise, I have to be honest I feel total immune to any worries about my health which is probably not healthy but at least relaxing!
I just like to know what something is and am amazed by how little is known about our weird lupus bodies 🙄😂 xxx
Oh yes, me too: 😏 immune to those sort of worries‼️
🤣🤣🤣🤣 what worries ME is how to get the health system not to stonewall, gaslight & Occam's razor me: after 40 years of THAT happening... with all sorts of ghastly health stuff getting worse & worse all over my bod and being called NORMAL 🤪 (inc some trying its best to do me in) i know i don’t need to worry about my health...🤷🏼♀️ clearly my bod is determined to survive.....
And I worry the same way for everyone here & all those out there unaware of support organisations like Lupus UK...🤦🏼♀️...it’s the system letting us all down that ‘gets’ me worrying most
BUT 🤔 saying that, i gotta admit the health system stepped up when my life needed saving, and EVENTUALLY 🤩 parts of of it have gone beyond my wildest expectations to figure out my bizarre brand of 3 infant onset simultaneous immune dysfunction & connective tissue disorder primary illnesses, including immunodeficiency disease as well as autoimmune disease
👍👍👍👍👏👏👏👏🍀❤️🍀❤️
Hi Mel. I agree with others and say it’s probably a small vessel Vasculitis thing secondary to your Lupus and related infections and also to all the canulas and tape.
I had a very similar time in 2015 with succession of hospital stays. The last one brought a very similar rash and massive bruising all over my arms plus phlebitis (swelling and pain).
My GP was appalled when I discharged myself from hospital and he came to look at how the open wound in my naval was healing. My arms were a sight for sore eyes and he suddenly “got” why I had discharged myself. All the comments on discharge sheets said “possible vasculitis?” But my delicate tissue and veins don’t take kindly to being mannhandled by bossy doctors or nurses inserting many canulas!
I think my connective tissue is very hypermobile / stretchy and this needs thought not brute force as the last junior doctor decided on!
But by the time my rheum no 1 saw them the rashes were long gone and he just said that it was probably just all the IV meds.
Similarly when I last saw my rheum no.3 five months ago and showed her the spots all over my feet - she said “just the UTI antibiotics”.
I tried to ask about IgA Vasculitis but she said this only affects children.
It’s hard for me because, unlike your rheum - mine discounts most things for me and has decided that it’s all just functional and damage is done and dusted and my Sjögren’s isn’t very active now. She thinks other stuff is just an unlucky coincidence. At least I’m anticipating this is what she will say next week.
I think you should ask your excellent rheum because deciding on what is Lupus or Vasculitis related is his bread and butter and, unlike my rheum, yours will take you seriously. X
Thanks twitchy, I so hope your rheumy comes up trumps next week and isn’t dismissive.
I don’t think mine is very interested in the smaller things like rashes and joint pain etc, just shrugs really but he’s so good with the bigger things I don’t like to add too many symptoms and be a moaner 😬 and actually no new symptom worries me these days - I just like to know the science and a cause, but that usually remains elusive with us ‘atypicals’ doesn’t it? 🙄
As the urologist told me my bleeding was clearly not normal but then he sort of laughed and said but then I expect you’re used to things not being normal?! X
Hi. I definitely recognise this rash. I get it it in response to sun or when my Antiphospholipid levels go up. I have lupus, Antiphospholipid syndrome and Sjögrens. You should most definitely discuss with Rheumatology. Wishing you well x
Hello Melba1,
Like Barnclown, I would say this looks a lot like one of my rashes (which does repeat), minus the beating up you've had by the cannula (good gracious!). And like klaroche, the first time it happened I was treated with steroids of sorts -- just the betnovate steroid cream, which did absolutely nothing. It used to be the itchiest rash ever, but now when it appears it is taking on a combination of itch and then a bit of stingy-ness.
My Rheumy referred me to Dermatology for a biopsy based on a picture. Of course this took months to happen, but eventually we got the biopsy. I'm still awaiting a full pathology histology (again months later), since the Dermatologist said it had a unique profile that he didn't understand and so needed to meet with the pathologist. It was indicating urticarial vasculitis, but not entirely. So one day they will get back to me and I will report. But it is helpful for the consultants to have as much information about your particular condition as they can because of the way it can creep into various parts of your body. And treatment for Lupus or connective tissue disease is not entirely the same as for vasculitis.
It's possible these rash issues are induced by something without you realising it (perhaps cannulas? or latex gloves the nurses might have been wearing while setting the cannula??). Mine seem to repeat after I wear marigolds. But then I can wear them to clean the house 10 times in a row and all is fine. But the 11th time, whoosh -- rash-land. The dermy and rheumy did not seem to care about this potential inducement when I suggested it and said I'd read about it, they just cared that it needed attention. It could bring into question the state of your main condition, and if you are in a flare as you're speaking about above. Plus there are plenty of other reasons for vasculitis that could be quite serious.
OR it could be none of the above, but checking it out is definitely warranted as PMRpro says.
Aside from hydroxychloroquine and mycophenolate, I'm on Mast cell stabilisers-- a regime of antihistamines and Montelukast. The mast cell treatment did not seem to make a difference for some 6 months, but now 8 months on, I've had fewer rashes and when I do rash, they are significantly smaller and less angry.
All the very best with all of this. It's a lot to deal with and it does seem to keep on giving...
Panda x
Thanks very much, very useful to hear other experiences.
Yes I’m inclined to think it’s just a dodgy skin reaction partly from slightly clumsy jnr drs but partly from lots of different drugs being IVed and being on so high steroids has probably made me bruise and bleed easily.
Can’t believe yours has taken so long to get results but things are rarely straightforward with our disease are they?!
I’ll show rheumy mine but the thought of going to another consultant for another dodgy part of me is not appealing after being put (unnecessarily I knew because it was all strange lupus things!) on the urgent cancer protocol for various areas - multiple appts, multiple shaken heads and pity at not having answers but my body is just ‘weird’. Want to stick with mostly just seeing and listening rheumy for everything because he’s so good but I suppose the nature of our disease is that we need multiple specialist input! And actually my dermatologist is excellent so I have just realised I could ask her! 🙄 Brain 🧠 clearly not recovered... 😂
Xx
I know the weariness one gets when we have to keep attending to every little and big thing that comes along; and then how we feel like we're whinging all the time and sometimes to the wrong consultants. And we want to get the most out of each appt and 'be a good patient' at the same time. And more often than all of that, we don't want to be in their trajectory at all! However, we are...
I really hadn't understood for some months, that even though we are under the lead care of a Rheumatologist, the other consultant's opinions (such as neurology and dermatology, etc) are extremely pertinent and helpful for our overall treatment and monitoring. My Rheumy has commented on input from both of these fields as being helpful and allowing her to look at me in a way she would not have seen herself. They are supposed to work together, so that is a great idea -- take the rash to your Dermatologist. Dermy's are far more in tune with the whole body concept and connective tissue diseases than I ever imagined.
It's possible, if the rash never recurs, that it was a reaction to something on the day. However, that could still merit attention, since you've never had that kind of reaction before, no?
All best with all of it!
Px
Not what you're looking for?
You may also like...
Any ideas with worsening weird rash please?
Strange rash. ANY IDEAS?
Blood results... Any ideas?
Anyone have any idea?
Any Advice Please - Raynaud's, Vasculitis and Dr. Appt.
Blood clots and urticarial vasculitis syndrome
Ouch! Painful feet and legs - any ideas? Is this part of lupus or something else?
Help! Any ideas on good travel insurance companies in the UK that insure for Lupus?
vasculitis
