Hi Belinda

Sorry I haven't responded before but it's been one of those weeks!

Thank goodness you have an understanding consultant who takes on board your thoughts and acts accordingly.

The hydroxy will defo help with Sjorgrens - mine has been much less severe since I started to take it. I haven't had any problems at all, although very, very occasionally it can affect the retina in the back of the eye. It is so rare, however, that my optician said that in ten years of dealing with people on hydroxy, he had never come across it. You should have an eye test before you go onto it and every year thereafter.

Take care

Love Jean xxx

Hi Belinds
I've taken hydoxy for 5 years without a break in combo with other medicines and i have to say i've never had any problems or side effects with it.
Hope they work as well for you
Take care
Julie x

Hello Jenni

I quoted to him what you said to me in my last post Jenni, when you said "no point in saying 6 out of 10 patients get infections when I have been one of the 6".... he agreed with you, so I am glad I pinched it from you hehe...

Thank you jenni, and lots and lots of good vibes coming you way for when you go into hospital tomorrow. I hope you find some relief from all the pain you are in. You are amazing and an inspiration.

Love to you and your wonderful family.

Love
Belinda
xx

Hi Belinda,

Well done for having the courage to tell the consultant what you want and don't want!
Hope this is the right way forward for you now.

Doreen xx

Dear Belinda,
I have had R.A and Sjogrens syndrome for almost 17 years. Diagnosed at 37 or so years old.
The only drug I take is Hydroxychloroquine.
It is one of the safest and one of the oldest drugs available for the treatment
of R.A.
When I first visited the Rheumatologist I asked him for the oldest and most tried and tested
(on other people), drug that he could offer me!
I had a complete horror of the newer drugs and it actually took me literally months to
pluck up the courage to take the Hydroxychloroquine.
It gave me so much less stiffness and pain. (It took 6 months to work.) After 4 months the Rheumatologist wanted me to give up on it.
Recently, my Rheumatologist suggested that I cut down to one tablet a day as my inflamation
levels had been within normal limits at my last blood test.
I did so for 5 weeks, as the levels slowly came down of the drug in my system.
But had to put my dose back up again because I was finding the stiffness and pain
returning!
Good luck with the Hydroxychloroquine and I hope it works as well for you as it has for me.
(I use Viscotears eye drops regularly all day and Lacrilube at night for the dry eyes. Dry mouth has, as yet,
not been truobling me, but I do drink endless cups of tea all day!)

Hello Fiona

I am amazed how many of us have sjogrens alongside our RA. As much as I wish you did not, it is nice to know I am not alone.

I have the viscotears for my eyes and oral balance for the dry mouth and lots and lots of water. I also use a sea salt spray for my nose to help with the sinuses drying out. Sjogrens is drying all my body out.

It really is lovely to hear that this drug has really helped you and I can honestly say I am feeling very positive. Never thought I would say that about any drug lol.

Thank you again

Love
Belinda
xxx