Plaquenil withdrawal

[Musicteach]

Hi, Jules! I have just reinstated my full dose of plaquenil after six weeks of being put on half dose. The instant flaring I got in those six weeks was scary...my fingers "blew up" and my fatigue increased enormously. I have been back on the full dose for a few days and already am less tired, so I think you should go back to your GP and tell him how you are feeling.

Also, I have weakly positive ANA but not much else and my symptoms have lately been diagnosed as Undifferentiated Connective Tissue Disease (UCTD) , which you can google and see if it matches up with your symptoms. It is a mix of several disorders and I too get lupus rash...it seems to be strongly allied to lupus and is sometimes called latent lupus.

Hope this helps... I too am a teacher and it is that end of term time when you need all your strength and energy focus! Good luck and keep us posted.

[Jules_Essex]

Thanks for the reply I'm on 200mg of paquenil twice a day I think the main reason the consultant suggested stopping it for a month was because I probably came over quite wishy washy as to whether it was helping me or not and he basically said quite often the best way to tell how much it is helping is to stop it for a month and see if you feel worse which I the time I thought made sense?

I think he does think that I do have some kind of autoimmune connective tissue disorder going on but that as I'm antibody negative for everything it's quite hard to give a definite diagnosis? I've not heard of undifferentiated connective tissue disease so I'll have a look into that. The lupus rash is relatively new as it's only appeared in the last 3/4 months but as I'm fair skinned I feel like it's really noticeable and I need to try and cover it with makeup.

I've been hypothyroid since I was 21 (I'm now 39) and have been on thyroxine for nearly 20 years now. I tested positive for hashimotos about a year ago and since then I've had T3 as well as the thyroxine (not that either of those meds seem to help any with my symptoms :()

The rheumatologist did say that there is a strong link between Sjogren's and Hashi's and I think because I have so many Sjogren's symptoms - dry mouth, dry eyes etc that he has been leaning towards that as a diagnosis?

[Musicteach in reply to Jules_Essex]

Yes, I too have Sjogrens and overlap RA plus a few other things! And I gather that UCTD can carry quite a few overlaps, so it might prove helpful to look into it. You only need google the capital letters and it comes up with a lot of websites...I actually found the Jewish one the most helpful, but can't quite recall the name of the Dr who posted it.

I am now back on plaquenil 200 twice daily and methotrexate once a week, which has proved almost miraculous in keeping the flares down.

I do hope you have success in tracking down what it is you suffer from...it's the not knowing that is so hard to bear. I wish you all the best and please keep on posting re: the outcome.

[Jules_Essex]

Thanks - do you mind me asking how your sjogren's was diagnosed as I'm antibody negative apart from the hashimoto's the consultant has given a very tentative sjogren's diagnosis as a possibility rather than it being definite. You're right about the not known as I feel desperate for something concrete to show up on bloods

[Musicteach in reply to Jules_Essex]

Tried leaving a reply earlier, but it seems not to have got through...anyway, my Sjogrens was flagged up after the eye test for plaquenil suitability and confirmed by hospital eye consultant. I have Hylo Forte eye drops which help and for the rather more serious dry throat (I am a singing teacher!) I have Biotene gel prescribed, but I actually find Vocalzones, which you can buy at any chemist, and which taste rather as I imagine creosote would, better at lubricating for a decent interval of time. End of school year beckons, so I hope that you will be able to rest a bit and please let us know what happens. It took five years to my diagnosis...its a long, slow haul....hang on in there!

[nannyjude in reply to Jules_Essex]

I had a biopsy inside my bottom lip, to remove some glands and these proved i had sjogrens, also dry eyes, lack of saliva.