Lupus and weganers: I have lupus,iv had... - Vasculitis UK

Vasculitis UK
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Lupus and weganers

I have lupus,iv had 5 sinus ops,got last op in aug,had tubes stitched in to flush sinuses out for 7 days,was a specislist who done last op,however it hasnt worked,im on 4 x500mg flucloxacillin all time as i have staphycocolus in sinuses,next step is to obliterate sinuses,they are still questioning weganers,has anyone had similar problem

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Hi Jeff,

Sinus problems are very common with Wegners which is now called GPA.

When you say they are questioning Wegners is that a Rheumatologist? If it is Wegners then repeated operations will make no difference as it has to be treated with immunosupressants.

You really need to see a Consultant with experience in diagnosing and treating Vasculitis to get a definitive diagnosis. You are welcome to phone or e mail the VUK Helpline and we can point you in the direction of an appropriate Dr.

The phone no. is 0300 365 0075 or I can be e mailed on lynn@vasculitis.org.uk.

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Im on 17.5mg methotrexate injections weekly,400mg of hydroxychloroquine a day,im under rheumatologist,see her on wed,lupus was picked up thru sinus ops not workn,ENT surgeon said it was my immune system,anca levels very high+,at that point was referred to rheumy,all my symtoms related to lupus but at begining she did question weganers and since last op on sinuses which was awful,was sent to different ent surgeon,but said they prob need obliterated as so badly damaged,i will tell rheumy this on wed,but without these antibiotics evday,infection and crusting starts in sinuses,other drugs for my lupus helping but feel need mtx increased as joints get sore after 4th day iv done my jab.

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Jeff, if you have sinus inflamation and high ANCA levels then I think you need to question whether the Lupus diagnosis is correct. If it is Wegners then Methotrexate and hydroxychlorquiline isn't going to control it. ENT Dr's are surgeons and there are relatively few that are experienced in Vasculitis.

Whereabouts in the UK are you? I suspect you need a second opinion from a more experienced Consultant before you have any more potentially unnecessary sinus surgery.

I don't mean to alarm you but what you have told me makes me very concerned about your treatment to date. Have they been dipsticking your urine to check that your kidneys are ok?

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Done dip stick test once,few year ago,always get blood viles done when i see rheumy,also my gp checks bloods ev month for the mtx,i do get extremely tired and sore joints,flu like symtoms,at beginning before i was diagnosed,they had multidisiplinary meeting,said was most likely lupus but this problem in sinuses awful,i work in a hosp too and also at a school,i live in scotland

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Hi Jeff,

I live in Scotland as well. Doing your bloods aren't enough as kidney damage will show up first as blood and protein in the urine. This is why a urine dipstick is so important especially as Wegners is still a rule out.

What part of Scotland are you in?

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Near edinburgh

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There is a Dr David Kluth at NERI who runs the Vasculitis and Lupus Clinic there

cir.ed.ac.uk/investigator/D...

I would be asking for a second opinion on your diagnosis. If it is Vasculitis then the fear is it will eat away the cartiledge in your nose and cause it to collapse. The meds you are on won't stop that happening. Were you ANA positive as well as ANCA positive?

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Im sure it was anca positive +,blew down massive lump of stuff tonight,feel it affecting my eyesight,headaches terrible,went thru all these ops for nothing and now consultant said last option is to obliterate them,felt awful all day,staphococolos aureas?,keeps showing up in mucus.

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Thanku so much for your help,i will have lot of questions to ask reumy on wed.

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I have looked up,vasculitus consultant not far from me,i had my last op in dundee,4 before were in larbert,my reumy based at forth valley royal in larb,i will ask her all about this on wed.

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I attend Forth Valley Royal in Larbertas well. Who do you see?

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Dr strann

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Rosalind and belinda are her secretary,dr strang or strann,cant remember was off for while .

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It's Dr Strang.

I would just be very honest about how awful you are feeling and that you are afraid you have Wegnersbecause of the high ANCA and sinus problems.

Dr Sara Else is very good, she is a Rheumy there.

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Ahh yes i was meant to see her this time,but now that dr strang back,im seeing her,iam getting anxious whats wrong,all my ops were done by dr newton in larb,he referred me to his colleague in ninewells,i see him on 30th oct to decide whether to get sinuses obliterated,i work full time,but lost lot time off work thru my health,been in same job 14yr,was nev like this.

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You need a second opinion if Dr Strang isn't going to take this seriously. Get them to explain why they think it's Lupus and not Vasculitisespecially with your symptoms and high ANCA.

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I will,you have been great help,i will know better how to explain myself and ask questions,think because i wear makeup to work and look ok,maybe masks a lot,but there are days it is re visible to my sons and friends i look so drained,i will let you know how i get on.

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Feel free to phone or e mail the helpline if you want to talk things over.

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Thankyou i appreciate that.

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Thankyou so much for your help,just feel something else going on with me apart from lupus.

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Hello Jeffscott...I was glad to see your post on the LUK forum. And am so glad you've got these great replies here. Your discussion is helping me too...maybe my story has something useful in it: I attend a UK univ hospital lupus & vasculitis clinic, and understand my combo of vascular ehlers danlos syndrome & infant onset lupus + early onset (pre immunosuppression treatments) primary immunodeficiency (chronic hypogammaglobulinaemia G,A,M + lymphopenia) mean I'm being watched for vasculitis by both immunology & rheumatology. Sinus issues have been my lot from childhood. Daily combined therapy treatment for lupus only began 5 years ago when the probs underlying my lifetime of dodgy health finally began to be recognised. I'm 63 and am feeling relatively better generally than I have since my 20s thanks to my collection of multisystem clinics.

I hope you'll keep us posted

๐Ÿ€๐Ÿ€๐Ÿ€๐Ÿ€ coco

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Thankyou,im seeing reumy tomorrow,lot of questions to ask her,im 47 and struggling bit the now with my health,i worry whats ahead as i get older,this forum is so good for help.

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Yes: not sure I could've benefitted as much as I have from NHS investigations & treatments without my HU forums.

Courage...the more you & your medics figure out about your version of immune dysfunction the better you'll manage it. Keep logging your symtoms & asking questions

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The tiredness is so debilitating.

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Sadly extreme fatigue is often part of the vasculitis picture Jeff. Lynn has provided you with good reasons to question your existing diagnosis and why you need to be seen by someone more able to meet your needs.

If possible, go armed with your questions written down and take someone with you who will act as a second pair of ears and maybe write down what's said. The more informed you can be about your condition, the better placed you'll be to ensure you get a correct diagnosis and appropriate treatment.

Please let us know how your appointment goes.

Healthy wishes.

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Thankyou,i just hope she listens to me and doesnt think im hypocondriac,but i know there something more,the fact they want to obliterate sinuse a major thing,but cant stand the fatigue,my memory is terrible and only 47,it embarrasing at times.

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Sometimes it's necessary to be assertive and use what ever it takes to make them see sense. You know yourself better than any clinician and there's a wealth of experience here that will back you up if you need it.

Obliterating your sinuses won't fix your vasculitis and it's the last fm thing you need to recover from when immunosuppressed. Don't worry about what they think.

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Im seeing rheumy this morn,she doesnt know bout last sinus op and what they want to do mext,i know something no quite right,should i ask to see a consultant that deals with vasculitus.

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Hi,saw rheumy today,i have very high ana and anca levels,told her bout sinuses,said my symtoms are lupus,not aware of lupus causing problems in sinuses,took 4 viles of blood,getting antibodies checked again,to get a biopsy done on sinuses,sed im a complicated case,she going to have multidisciplinary with her colleagues,to discuss me,try find out more.

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Good...hang on in there! And please give us news ๐Ÿ€๐Ÿ€๐Ÿ€๐Ÿ€

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Thankyou,.

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I know this post was started quite a while ago but your symptoms sound similar to mine however, I've been diagnosed as having Sarcoidosis. It may be an idea to as your consultant about that. Can I ask if the fluxacillin helped with the staph in your nose or is this still on ongoing? I hope you found a way to feel better.

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It helps for a bit but then when i stop it,infection constantly there๐Ÿค”,i see ent consultant next week,last time i saw him,he suggested stripping sinuses out,bit invasive procedure,no sure whether to just get booked in and get them washed out again.

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I'd say that's a very sensible move. If you let us know where you're currently seen we can suggest the nearest hospital with a specialist centre but if all else fails ask for a referral to the vasculitis and lupus clinic at Addenbrookes, Cambridge.

Let us know how you get on too.

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I get seen at forth valley hospital regarding my lupus and see ent in dundee.

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