11 year path to diagnoses

[Honeybee]

Well I finally recieved my letter from the rheumatologist I had seen in the UK,  and following a second lip biopsy it showed mononuclear antibodies consistent with sjogrens. I have actually been unwell for decades bjt the severe eye mouth issues surfaced 11 years ago.
I have all four plugged cauterised etc and take pilocarpine orally.
I have now been offered azathioprine if I want it and am wondering whom on this board takes it and have had they found it useful in reducing eye symptoms? I have been battling ever increasing symptoms in relation to IC which was diagnosed in 2003 and in addition I have the mere hint of auto immune hep as there is a smooth muscle antibody present. Not getting too bothered about that but I do hope to be able to wrestle my eyes into submission, unlikely but must keep trying. Moorfields helpful and possibility of serum now.
Am a self employed textile artist which is awkward at times but need to keep employed in some capacity. Do not watch TV or visit uncontrolled enviroments, are'nt I fun? Do like audiobooks though, thankfully.
I am also antiphopholipid positive.
Things slightly unpleasant at the mo as I have aquired a head trauma due to falling onto concrete whilst rescuing my elderly cat from the mouths of two horrid staffordshire's who decided to attack him. Was hoping the black eyes would divert my attention away from the dryness, the length one goes too..........
Not a frequent poster as quite a private girl but thought I would update the previos info.
Blessings to all. Honeybeex

[Deb 27]

 Isn't it unreal that it can take 10 years to get diagnosed? I've heard that it takes an average of 10 years. I don't take azothiaprine, just plaquenil. Are you seronegative, i.e.. your blood tests for Sjogrens were negative but lip biopsy positive??

Sorry about your fall.  I hope things heal quickly.

Keep us posted about your  experience with azothiaprine. My docs have never offered any immunosuppressants to me.  Maybe my symptoms don't require it.....

[Carolina]

Welcome, Honeybee,

I think I was 'unwell for most of life' due to the general misery of my Disordered Immune System.  I never really had much energy and had to push myself to live a fairly normal life.

However, when my dry eyes/mouth suddenly appeared and I began treating with Salagen and Restasis, and anti-inflammatory medications, plus drops and sprays, I started my downward spiral.

I also have IC, and I take D-Mannose every single day, I have for five years, and I have not had ONE UTI in that time.   Before that I had chronic UTIs, so I highly recommend D-Mannose, which in the US is OTC (over the counter, retail, not by RX).

I had to look up azathioprine.  I don't take it.  I'm including the link for others who may not know the generic name:

https://en.wikipedia.org/wiki/Azathioprine

Also, I don't have Antiphospholipid Syndrome, but it sounds scary and serious and is another autoimmune syndrome.

https://en.wikipedia.org/wiki/Antiphospholipid_syndrome

For eye/mouth dryness is use all the regular things:  humidifier, eye spray, Salagen (helps eyes a bit, too), Mucinex, etc.

Welcome again, honeybee.

Regards,  Elaine

[happylife]

Hi Honeybee,

Sorry to hear this.

1. For dry eyes, are you not taking restasis?
2. Are you on Salagen, which i heard will increase saliva and eye tears?

If not, check with your rheumatologist, if these two medications can help you.

Thanks

[Honeybee]

Yes I am on ciclosporin ointment for the past 8 years and I do take salagen tablets. We do not have restasis but the stronger dog ointment licensed for use. Salagen at least means I can swallow food........Some idiot thought it might be a good idea to bring out an ointment free version of restasis called Ikervis, unfortunately they decided to add cetrimide as a preservative, which is pretty similiar to a BAC in its molecular structure, hence very irritating to sjogrens dryness........
Thanks for the replies chaps.
Honeybee x