It's official - some sort of diagnosis!

[Tryfan]

Hi all,

I've been to see the Rheumatologist today and he has written down 'Connective Tissue Disease with clinical features of Sjogrens, AP antibodies and possible features of Lupus'!  So, it's sort of official but a bit of mixed bag.  Suits me somehow to be a 'mixed bag'!!

Anyway, I've been prescribed Plaquenil and double dose aspirin (i.e. 150mg).  I'm relieved in a way although I've never been one for taking medication.  I do think Plaquenil is worth a shot as I've been flaring recently and have had terrific pain and aches in all parts of the body.   I know it is generally thought that Plaquenil takes time to work but what is everyone's experience of this?  Six months?

Also, I've been referred to a neurologist (MRI first), cardiologist (echocardiogram - have had a heart murmur all my life) and a Lupus specialist in London.  I suppose it helps to empower yourself and cover all bases!

Anyway, the funny thing about it all is that I've really noticed the dry mouth suddenly!  My mouth is sticking to my teeth a lot and my eyes are hurting much more, particularly in the shower when I get them wet!  I have hypromellose drops handy but I have nothing for the mouth....is biotene the thing to get?  I see the GP on Monday and wondered if I could ask him for something...let me know what works...am in the UK so things may have different names. 

Thanks everyone...

'Mary Mixed Bag'!x

[Katybarstool]

Hi Mary Mixed BAg!

Yes, Biotene is good - and it can be prescribed for Sjogren's and people who have dry mouth due to cancer treatment. If your GP says it can't be prescribed, suggest she read the Biritish National Formulary. I thinks it's a relatively new edition to the formulary, and neither my GP nor dentist knew.

Good luck with the appointments and tests.

Kathyx

[harrigan]

My GP prescribed Glanosane spray, lemony flavour that feels quite natural. Glad that you are starting treatment.  I begun Plaquenil in March and can't really say I notice a vast difference yet but it hasn't been 6 months yet.  I know the mixed diagnosis is a bit confusing but at least it sounds like you are getting a thorough check up.  

Hope you are feeling ok about it all - it can hit you and catch you off guard when you think you have adjusted to it all.  Thinking of you XX Ailsa

[DragonflyC]

I also have Mixed Connective Tissue Disease, Sjogren's, Hashimoto's, and Raynaud's.  My rheum says the distinction from lupus, in his opinion, is really about splitting hairs with these types of illnesses; he sees them more as existing as different manifestations of a spectrum disorder, though he thinks that they'd be ranked differently on the spectrum based on the person (e.g., he said that he thinks that a severe case of Sjogren's can be more debilitating than a mild case of lupus).

Water has always bothered my eyes, but I now realize that I've probably had Sjogren's for decades.  Like you, my dry mouth got suddenly much worse around the time that I was diagnosed w/ Sjogren's.  I think that was for a variety of reasons: 1) I was seeking help because I was having what I now know was a flare; EVERYTHING was getting worse and 2) I found the process of going from doctor to doctor, worrying about what might be wrong, very stressful; stress + autoimmune disease = bad. 

Plaquenil only took a few weeks to kick in for me, though it sounds like it offers some people more relief than others (I think I fall in the middle).  I also take Evoxac for dry mouth and find it helps a little with my eyes; the effect comes within about twenty minutes, but it doesn't last very long.  Sugarless gum is good, though I feel like a kid chewing it.  Having a bottle of water on hand is key.  I may have to resort to the Biotene rinses and sprays eventually, but I find them pretty yucky and am trying to put it off as long as possible. 

I wear contacts, which actually makes things better when I'm not having a flare (can't tolerate them during flares, but my optometrist thinks they irritate my eyes into tearing more the rest of the time).  I use Bausch and Lomb Sensitive Eye Drops when I wear my contacts and Thera Tears (preservative free on contact) when I don't; of course, I'm not sure what's available near you.  Some people get longer lasting relief from gel eye drops, but they really bother my eyes and end up making them feel worse. 

Hope that helps! Best wishes for your appointment on Monday.

[Tryfan]

I agree about the Biotene not being very nice, DragonflyC.  I bought some over the counter to try it and it's like putting mashed up banana in your mouth.  The Glanosane sounds much more appealing...I like lemon.  Thanks so much for the advice....no doubt the GP will have his own agenda on it...just wanted to be prepared.

Ailsa, it was so understanding of you to say that all this might have knocked me 'off guard'.  I went in to the Rheumatologist knowing that I had all those conditions and so none of it was any real shock but I was still shocked nonetheless.  I think you spend so much energy either waiting for appointments or tackling symptoms that the emotional side gets put on a back burner.  Anyway, just wanted to say thank you...it's made me feel hopeful funnily enough.

Mx

[harrigan]

Good - glad you feel supported.  It's the amazing thing about this site: we are never really alone as between us all, somebody will either have had it, tried it or be worried about it!  Post often Tryfan and good luck with getting used to Plaquenil.  There's lots of info to fing on search about adjusting to the dose.  Hope you are managing XX Ailsa

[Chickpea]

Hi Mary

'Mixed bag' would be a good nickname for a Sjoggie, wouldn't it?!  It's good to hear that you've got a diagnosis and some treatment.  There's lots of good information here about adjusting to Plaquenil: staggering the dose, taking it with food especially yogurt etc etc.  Most people find some relief after 3-6 months, and for many it's the only medication they need. 

Let us know how the visit to the neurologist goes.  How are you feeling about having an MRI?  Lots of us have had them so do post with any queries you have.  Do you know what the neuro is looking for?

I also have heart murmurs so I'd be interested to hear what the cardiologist says to you about possibly connection with AIs, especially SjS.  Are you having the full heart echo or an ECG?  Either way I'm happy to answer any questions because I have both regularly.

Give yourself time to adjust to this diagnosis.  Expect a rollercoaster of emotions from relief to fear, and everything in between.  There's also a sense of grieving for the life that might have been, which will be different now.  Not necessarily worse, just different.

Post lots and tell us how you are feeling.

Thinking of you - Chickpea