Lupus,sinus problems and terrible itch.

[Jeffscott69]

Hi all,im going for another op on sinuses in ninewells dundee,my rheumy in larbert wants biopsy done when im getn the 5th op on sinuses,ent said on examination,there signs of damaged tissue and granulmatosis?,iv been awake all night itch in my legs cracking me up and also my hands,has anyone else had this,i have lups and they suspect something else going on,i said to my rheumy about itch,she didnt seem too concetned,iv had awful night,really cant stand it.

[Barnclown]

Am so glad of this update, thanks v much JS👍

Sounds as if your medics are well & truly concentrating on figuring out your ENT issues & also what's going on generally. You've had a really dreadful time & been v brave about everything...courage: my feeling is that you're close to cracking all this. From an early age, my life has been plagued by constant sinusitis....but FINALLY my immunology clinic has helped me lots. So I'm v much relating to your case

Could these leg symptoms be partly due to Restless Legs Syndrome? Here is a link

nhs.uk/conditions/Restless-...

A suggestion: if you don't get the replies you need, maybe post again with a subject heading something like this:

Help - dreadful itching restless legs & hands, can't sleep

Take care

🍀🍀🍀🍀 coco

[Jeffscott69 in reply to Barnclown]

Thankyou

[Barnclown in reply to Jeffscott69]

Hello again...and you're v welcome...I had remembered your v popular post & long discussion 2 months ago on our vasculitis uk forum...so I didn't mention vasculitis in my reply to this post now.

am v glad PMRpro, twitchy & keyes are mentioning vasculitis

I do still wish you could somehow be referred to the Lupus & Vasculitis clinic at addenbrookes in cambridge...even if only for a second opinion

Wishing you all the very best

🍀🍀🍀🍀

[PMRpro]

Has anyone suggested you may have some form of vasculitis? It is also autoimmune and causes inflammation in blood vessels. There are some sorts that can affect sinuses. Though if you are at Ninewells I'm sure someone will think about it. Vasculitis can sometimes cause leg problems. There is a VasculitisUK forum on here too and they are very helpful - they know the right people to ask to see if they do decide that is what it might be.

How come N/W for a patient in Larbert? Forth Valley is a bit small - but wouldn't Glasgow be more convenient? Just being nosey!!!

[Hidden in reply to PMRpro]

I agree with PMRpro re possible Vasculitis, which could also explain the very itchy skin as well as the sinus issues and granulamatosis you mentioned. If things get any worse with itching then please do go to an A&E where there's also rheumatology and mention Vasculitis as it's really not something they should drag their heels over, if you do have it. Some types are very rare so doctors may need to have this flagged up, e.g.: nhs.uk/conditions/wegeners-...

Ps Ninewells should be able to identify most forms of Vasculitis but the Scottish Vasculitis expert is actually up in Aberdeen, so if you feel you aren't getting the expertise you need you might contact him to ask : abdn.ac.uk/ims/profiles/nei...

[Jeffscott69 in reply to Hidden]

Thankyou so much,if i started the least bit scratching again,ano it would flare up,iv put in some night of it.

[PMRpro in reply to Jeffscott69]

Have you tried taking an antihistamine to ease the itching? Most supermarkets will sell loratidine (even Lidl which is where I stock up!) and it should be perfectly safe and worth trying.

[Jeffscott69 in reply to PMRpro]

Yeh on antihistimine all time,gona mention when in ninewells aboit vasculitus

[Jeffscott69 in reply to PMRpro]

My ent consultant from larb trained with dr white from ninewells and im now under him,my rheumy is dr strang in larbert,so fed up,i know there something else going on in my body but wish i knew what it was,fed up.

[Hidden in reply to Jeffscott69]

Please do read the links I've posted for you and ask on Vasculitis UK about this. I hope Keyes, one of the members of both HU communities, will see this post and respond.

I don't know much about Larbet apart from for RA and my son goes there from Stirling for scans etc. You don't say when your sinus biopsy is scheduled for but they are obviously thinking along these lines I am guessing. Vasculitis often affects the skin very badly causing very itchy rashes. It is another form of connective tissue autoimmune disease. I'm under rheumatology at NW and previously Kirkcaldy and first off Aberdeen. I am sure your rheumy is on the right tracks but maybe there's more urgency if your rash is causing you this much distress. Perhaps your sinus op needs expidating?

[Jeffscott69 in reply to Hidden]

My op be in jan but not got date yet.

[Hidden]

Hi,

The problem is that sinus biopsies aren't great for Vasculitis as the quality of tissue they yield is poor. I know you are ANCA positive as well and your symptoms aren't well controlled. Have your Rheumy and ENT spoke to each other? ENT Consultants are surgeons and not great with auto immune disease.

Have you had kidney and liver function blood tests recently as deranged levels of those can both cause itching, especially if there is no rash.

You really need a hospital with a multi disciplinary approach. I am not sure that Dr Strang ( who I know ) has the experience to work this out. Personally I would ask for a second opinion or at least get her to discuss your case with Dr Else.

[Jeffscott69 in reply to Hidden]

Do you think i should tell dr strang about my awful weekend and ask to be referred to dr elise?,just dont want dr strang offended but feel she missing something,ano my own body.

[Hidden in reply to Jeffscott69]

You should absolutely tell Dr Strang about how unwell you feel. If you don't do it at the beginning of next week then you will miss your chance as Christmas will be here.

You can get a secondary Vasculitis associated with Lupus, blood tests aren't everything as symptoms are important as well.

Please don't think I am saying you have Vasculitis, you obviously have lots of concerns and your care isn't joined up as ENT and Rheumatology don't appear to be communicating.

No one will care about your health as much as you do, you are the one living with these awful symptoms. Making Dr's aware of your symptoms, distress and asking if they can discuss you with their colleagues is reasonable. If a Dr objects to that then you have to question how understanding they are and whether you want to be treated by them. I am not saying it's easy but what's the alternative?

[Jeffscott69]

I just dont know which way to turn,another sinus op,wake up wi cathetar tubes stitched into nose for a wk,i open cap and flush them out,rheumy said she spoke to other colleagues,there sumfing not specifically showing up its vasculitus?,have double stranded binding antibodies?,ent and dr sttang feel dont communicate properly,just somefing feel they missing,been so low,signed off work,getn sinus op in ninewells jan,dreadn these tubes again,i really need to reduce hrs at work,im a female of 47,glad boys are grown up,but no copeing with health.

[Hidden in reply to Jeffscott69]

If I were you i would either phone rheumatology and explain exactly how awful things are or see your GP on Monday as an urgent patient and tell them what you have told us and also ask about vasculitis. They can't expect you to go through Christmas and New Year like this and you need your liver and kidney function tested at the very least.

You must tell these people exactly how it is for you and make them communicate with each other ASAP and your GP should be able to help. Tell them exactly how much you dread another sinus op and say that the cause of the problem needs to be found now not just keep operating on your sinus over and over.

This is what I would do but only you can make the decision.

Please don't fret about your rheumy thinking badly of you. She needs to pull her finger out for you and speak to the Ninewells or refer you to someone with vasculitis expertise if she doesn't know enough herself. Failing that you need a second opinion ASAP. Best of luck.

[Jeffscott69 in reply to Hidden]

Im going to call mon morn,GP doesnt really know much about all these blood results,i will call dr strang secretary and tell her i cant cope with itch and way im feeling,also all these sinus ops terrible,wonder if they reaĺly worth it,ent said left sinus not functioning and rheumy said lupus doesnt damage sinuses.

[Hidden in reply to Jeffscott69]

I suggested GP because they are like the gate keepers and can maybe coordinate your care better by bringing your specialists together. They don't need to understand bloods for this. And they can test your bloods for liver and kidney function and give you stronger antihistamines for the itch. Your rheumy can't really do that so I suggest you phone rheumy and see GP.

I did post a link to a rare type of vasculitis that can cause sinus problems of the kind you are describing. The treatments are generally more aggressive than Lupus treatments, but are pretty much the same family so if you are treated for this type of vasculitis then you may not need another sinus op. Please do read the link I posted so you can ask the rheumy if this could be what is causing your problems and push hard for treatment if so. nhs.uk/conditions/wegeners-...

[Jeffscott69 in reply to Hidden]

Very useful information thankyou,im on mtx also 2000 flucloxacillin for months as staphococus in sinuses,i have all symtoms relating to weganers but rheumy said there something not in my blood thats a key indicator to diagnose weg,really feel and want refered to someone that deal with vasculitus.

[Hidden in reply to Jeffscott69]

Oh that's good that you know about it already. I don't know what bloods would confirm it as I would have thought it had to be diagnosed by symptoms or biopsy rather than bloods? The chap who's name I posted you above, Professor Neil Basu, is a Vasculitis specialist and you could ask for a referral to see him as he's in Aberdeen. I saw him once for a second opinion and he was very nice and helpful - although he didn't get it completely right with me- but it was a forgivable error and he at least wasn't a rigid thinker or ruled by bloods as my rheumy no.2 was!

You could ask your rheumy to contact him on your behalf so this would avoid upsetting her if that really concerns you?

Either way I would definitely see your GP re the itching and report this awful night to your rheumy and ask about Wegeners again. Hope it helps to have talked it through. Best of luck.

[Hidden in reply to Hidden]

Hi Twitchy,

Dr Basu is on sabbatical in the USA till next year unfortunately.

[Hidden in reply to Hidden]

Oh right that shouldn't surprise me with his high international profile!

[Jeffscott69 in reply to Hidden]

Thankyou so much,slept most of day,feel exhausted and very low,im gona ask for referral to vasculitus doc,crusting in nose bad,joints agony,and getn another op in ninewells in jan,will have these catheter tubes stitched in for week,as i open caps and flush sinuses out,just had same op in aug,hope im no gong thru all this for nothing?,after all im just another patient but mentally its starting to affect me,just know something not right and now this bloody itching.

[Hidden in reply to Jeffscott69]

You can have negative bloods and have Vasculitis. The sinuses are very prone to Inflamation in lots of auto immune disease. Have you ever had your immunoglobulins checked to make sure immunodeficiency isn't causing the problem with repeated infections?

[Hidden in reply to Hidden]

Sjogrens can cause chronic sinusitis too and is often associated with liver and kidney problems too and of course, with Lupus.

I had much crusting and bleeding when on Methotrexate and still suffer from nasal sores. I know it's not a patch on what you are suffering just now with your sinuses but there are degrees of severity in very autoimmune disease and Sjogren's is no exception sjogrens.org/files/brochure...

And re liver manifestations (which can cause severe itch everywhere as Keyes has said)

bssa.uk.net/live/documents/...

[Jeffscott69 in reply to Hidden]

No i dont think so,but im gona ask,get bloods checked for various different things and cant remember what they all are at times