A question asked by telephone today. In addition to Vasculitis does anyone suffer from the following?

[John_Mills]

Sjogrens (dry eyes and dry mouth) or Thyroid deficiency?

[lisa-ranyell Vasculitis UK Volunteer]

Yes I started suffering with all the symptoms of Sjogrens last year, I.e. dry eyes, dry mouth, dry cough and dry skin. I have to constantly use drops for eyes. My consultant tested for Sjogrens but says it was negative. Also I appear to have symptoms of under active thyroid but tests show it to be ok. With the thyroid though all of the symptoms I have could be related to other things. Hope this helps.

[John_Mills Volunteer in reply to lisa-ranyell]

Thank you Lisa can you tell us what eye drops you have please x

[braindamage]

I was diagnosed with Sjogrens in early 2008, about two years after the initial WG diagnosis. It's one of the most difficult things to live with. Constant dry mouth, throat, nose and eyes. The only thing that brings temporary relief is a 'nasal wash'

I was also prescribed 'Carmize' ( carmellose Sodium 0.5%) in 2011 after my eyeballs started to bleed. Apart from giving temporary relief from 'dry eyes' i still have problems occasionally.

[John_Mills Volunteer in reply to braindamage]

Thank you for sharing this with us... it must be difficult to cope with at the best of times. take care Susan

[lisa-ranyell Vasculitis UK Volunteer]

I use lacrilube at night which is like Vaseline! In the day I use Liquifilm Tears which can be used with contact lenses as well as without. I don't wear my lenses much now though even though eyes are more comfortable with them than without

[Ayla Volunteer]

Yes, to both! However, my test for Sjorgrens was also negative. I have all the dry areas except the mouth and I need to use a lubricating gel in the eyes. The best one I have found is Clinitas lubricating gel.

I have had an underactive thyroid for 40 years and take levothyroxine daily.

[PatriciaAnn]

I was diagnosed with under active thyroid (mixodema) about 20 years ago - 10 years before being diagnosed with WG. I also take levothyroxine daily. At the moment 100mcg is just too high but 75mcg is too low. So for six weeks I'm doing an alternate daily dose - 75mcg one day, 100mcg the next.

PatriciaAnn

[runnerwithwg]

Hello, I have WG and for years suffered with all of those symptoms (and more of course!). Rheumatologist has tested for Sjogrens but says it was negative, other doctors have done Thyroid tests but say negative, although one admitted that the normal range does not fit everyone and as no one knows what my normal level was before I became ill, this makes it difficult. He did tell me that he may experiment with some Thyroxine, but this has been delayed due to some other tests.

[Dbis22]

I have had WG for 24 years and have all the symptoms of Sjogrens. I had attributed this to my use of the drug Acitretin (for warts / verrucae) but have taken this for years. I have suffered a very dry mouth for years but have, only recently, suffered dry / gritty eyes. I have raised it with my GP and have an appointment booked for a comprehensive eye examination with my optician. I intend to raise it when I next see my Rheumatologist.I find it a real nuisances as it is extremely uncomfortable.

[StephanieDiane]

Hi , I've suffered with blood red eyes,and I also suffer with a dry mouth. I was diagnosed with an under active Thyroid 17 years ago, 15 years before I was diagnosed with Vasculitis MPA and take 125mcg Ievothyroxine

per day,

[milliewin]

yes I suffer terribly with dry eyes, mouth skin, also with my Cerebral Vasculitis and some sort of inflammatory arthritis. As far as I know my thyroid is ok? I have just had my tear duct blocked to try and keep any tears from draining away, I use the 1% Carmellose drops regularly in the day and Simple eye ointment at night. What does anyone use for a dry mouth?

Sarah

[lisa-ranyell Vasculitis UK Volunteer]

I am amazed by all the answers to this, as my GP and consultant both seem to think these things are unusual in WG patients. Clearly not! Milliewin, my dry mouth not too bad but I find sipping water regularly and chewing sugar free gum both help

[John_Mills Volunteer]

Thank you for all the replies we will be able to phone this lady back today with lots of advice and some suggestions. As Lisa says maybe this problem is more common than medical profession think it is.

[hamble99b Volunteer]

I take 50mg thyroxin daily. I've not been tested for Sjorgens , I have wegeners.

I use liquid tears or carbomer gel for dry eyes. As the bridge of my nose collapsed,{saddle nose] I mouth breahe so my mouth is constantly dry.

My thyroid level was only slightly lower but significant - once treatment with thyroxin began the difference was instant.

[stuartw]

hi i was diagnosed with vasculitis last october i saw the rhumy in february and after 2 months of tests diagnosed with sjogrens, rhumatoid arthritis austioarthritis and i have raunards the dry mouth nose and eyes are no fun

[leedsnel]

I have primary sjogrens, no other auto immune diseases I have been diagnosed 2 1/2 years (had it 4 years before that) and on hydroxcoloquine for 2 years. I have been told there are 2 forms one only affecting mucous membranes and one systemical I have the second sort

[AndrewT]

Yes to occasional itchy/dry eyes, doesn't everyone? I don't know about 'Sjogens' as, to be honest, I don't know what it is! This is probably somewhat 'remiss' of me, and I'll be going to bed without any tea because of it, but can you tell me what it is john?

Once again sorry for the ignorance, love to Susan please.

AndrewT