Hi there!

I'm also a UCTD-er. It's a sort of an inbetween stage where they know that there's something wrong, but they aren't sure which way it's going to go (i.e go into permanent remission or develop into something).

I have some features of Lupus, Sjogren's, Scleroderma and RA, but my doctors have said they expect it to go into remission (wishful thinking or something?)

Plaquenil is what they prescribe for Lupus, Sjogren's and mild RA, so even though we aren't given the official diagnosis, we are treated the exact same.

Plaquenil has been amazing for me. It does take about 3 months to notice any improvement. I was sensitive to the sun before I started, I'm not sure if this has improved because I avoid the sun completely. I found the nausea was pretty bad at first, but it only lasted about a week-10 days. The eye problems are very rare, but your doctor should check them every 6-12 months.

My fatigue and joints have improvement, I still experience some symptoms but it's much better than before.

Many doctors say that you'll have to be on Plaquenil for the rest of your life. My doctor has suggested coming down to a lower dose in a few months, but we will see. You can decide to stop taking it, but I wouldn't!

Feel free to add me/message me if you'd like to talk!

Hi! I think you could actually get this info from your pharmacist or MD.and I would certainly ask. My experience with Plaquenil has been odd (to me). My Rheumatologist told me it would take more than six months to "kick in". I felt as bad after six months as I had in previous months. Then I went on steroids--prednisone. I can tell NOW when the Plaquinil kicks in and I can actually tell within an hour. I find it to be a very gentle drug and have NO side effects--other than a little sleepiness which goes away with a Diet Coke..As for your Dx; you have a serious dx NOW in my opinion. It can go either way but if it progresses in a negative way--it's not your fault. Eat a heathy diet, follow MD's instructions, low stress--etc. etc., You know the drill. For me, the hardest thing to give up was the sun. Best of wishes to you. xoxosummer

Thank you so much for the replies.

@summernow - Thanks for the support, advice and info on Plaquenil.. Glad it has proved to be effective in the end for you. I will definitely be making sure I follow a reasonable diet etc and do everything I can.
@Wabby - Thanks for the support and for sharing your info on UCTD. It's also great the you have found Plaquenil to be somewhat effective with this condition - so good to know that there is hope with getting some relief of symptoms!

Over the last few days, the diagnosis has really been 'sinking in'. A mix of emotions has come along with it really - sadness, relief and uncertainty about how things could progress. The fact that I may never really be 100% well again due to a connective tissue disease is a scary prospect as well. Although I know I have to try and remain positive, otherwise it could just take over completely.
Explaining to friends and family is always really difficult. I don't expect/want pity, just understanding when I need it. I have a close friend who I know will support me all the way, but even broaching the subject in the right way and openly, can be quite difficult.
If anyone has any tips/advice/experiences on how to deal with this aspect of things, it would be really appreciated.
Hope everyone is doing as well they can be at the moment :)

I'm on Plaquenell and I've found my hair loss has slowed down. It was horrible from the Lupus before I started it. I guess it just depends on the person.

Keep that positive attitude!
You will need it! Trust in the plaquenil..it effects everyone differently of course, but in my experience it has been most helpful in my UCTD treatment. I too was on pred for a looong time, thankfully I am off of it now and somewhat stable, so give the plaquenil a chance and keep smiling :)
((hugs))

I too had been diagnosed with UCTD, but now it looks like my new doctor is saying Lupus. I have been on plaquenil for over a year and it has really helped my joint pains and my fatigue. Good luck. I hope you feel better soon.

Hi, I'm 21. I was diagnosed at 20 with UCTD by the Mayo Clinic in FL..and I take 200mg daily. I felt nausea for about a month when I started the medication. After 6 months I felt like a huge fog had been lifted and I was seeing the world in a new light; I had been living in a fog of chronic pain that had completely taken everything from me.. my life, my personality, my joy ect. I have continued to improve, VERY SLOWLY. I spent 5 years undiagnosed and very sick, and spent most of the time in bed and the rest on the couch. I was functionally disabled- and was told it would take a few years for my body to recover from the trauma. If I miss one day I am so dizzy that I cannot walk around the house. DO NOT MISS ONE! I take other medications and I do have other medical issues- I sort of feel like nobody wants to treat me bc of my age. Its been a year and I still have not been able to return to college, get a job, I cannot commit to a schedule because I am still having flare ups and frequent bad days.. Always looking for research, clues, information, and anyone who can relate to UCTD

- doni.spiller@yahoo.com

I have inflammatory arthritis and lupus-like diagnosis (doc says I am an enigma) been taking placquenil for a few months, it has helped my level of pain quite a bit. I had a bit of nausea for a while and some hair loss, furthermore I recently went low carb to help with my blood sugar and my pain level went down even more :D