Newly diagnosed

[Dobermanndale]

Hi all

I have just got back from my consultant appointment and it now seems i have been diagnosed with either Lupus or Sjögren’s syndrome consultant said its doesnt really matter which one as they both are treated the same i will be put on Hydroxychoroquine shortly has anyone else been on this medication

[scarlettyork]

I was put on thst but had bad side effects but sum people are ok on it think this one you have to get regular eye checks o

[Dobermanndale in reply to scarlettyork]

Thank you i will arrange an eye test today thanks again amd fingers crossed i am ok on the medication once i start it

[pixie66]

Hi

I was diagnosed with lupus almost 18 years ago and have been taking Hydroxychloroquine pretty much the whole of that time with very little problems. Maybe a little bit of an upset tummy, nausea, lightheadedness in the very early days but nothing major.And its seems with me that each time a new drug is introduced side effects may occur initially and can then settle.I remember having 'special'eye checks early on too but these phased out as no issues detected and my eyes just checked during regular spectacle and contact lens checks where I always make my optometrist aware of my medications,lupus and more recently about a year ago my additional diagnosis of sjogrens syndrome. And like you my consultant advised me that both conditions treated similarly. Hydroxychloroquine helped keep me ticking over for many years.Hope this helps. Good luck

[Dobermanndale]

Thanks for your reply and the comments about side effects i am hoping all will be ok ince i start taking it

[Manju-Manu]

Hi..I was diagnosed wih lupus three years ago..since then am on hydroxycholoquine..no side effects till now..does ee checkup on every six months..on long term use of this medicine, u will get relived fron your joint pains..do not discontinue the medicine suddenly or without ur doctors advice..

Regards

Manju

[Dobermanndale in reply to Manju-Manu]

Thank you i am just waiting to start it now! Not sure how ling i will have to wait

[Hidden]

I have been on hydroxychloroquine since I was so diagnosed,certainly does help with pain and fatique,but always have a yearly eye check and retinal screen also with my doctors approval take a daily multivitamin including lutein,bilberry etc especially for eye health.

[Dobermanndale in reply to Hidden]

Thanks for your reply i am hoping it will help with the pain and fatigue i haveno life in me i dont sleep much up most nights and the so tired in the day

[Hidden]

I was originally diagnosed by the rheumatologist with Sjogren's/lupus overlap, then told at the Lupus clinic I had "mild lupus", then told by them I didn't have lupus but have Sjogren's. Ultimately, it doesn't matter what name they give the condition as long as they treat it. I am on 400mg hydroxyc. a day and it has been a wonder drug for me. All my aches, pains and stiffness have all but disappeared and my hair stopped falling out and has grown back. I still have very dry eyes and mouth, however. I have since developed Raynaud's syndrome, which hydroxyc. seems to have no impact on. I am also on immunosuppressants for autoimmune hepatitis, so I am not sure what impact these have on the connective tissue disorder (whatever it is).

Good luck with the hydroxychloroquine, it really works for me.

[Footygirl in reply to Hidden]

Hi Bitternwatcher

Saw that you have AI Hepatitis. I have not met anyone with AIiHep since I was diagnosed in 2001. How are your blood results? Stable at the moment I hope, like me. Did you have multiple episodes of Hep with no diagnosis. I had to suggest Lupus to my Specialist who did the blood test and then I was diagnosed. I am on Azathioprine 75mg. My LFTs last summer went off but increasing to 75 did the trick.

Keep as well as you can, regards x

[Paul_Howard Partner LUPUS UK]

Hi Dobermanndale,

Would you like one of our information packs about lupus? They have a lot of useful info for people like yourself who are newly diagnosed. Just send me a private message or email [e-mail] with your name and address and I will send one out for you.

[Fighting]

I have been on the medication for 28 years. Hydroxychloriquine is also called Plaquenil. It's primary side effect is accumulation, over time, in the eyes. I have a careful Optometrist who has been monitoring and, this year, he didn't like what he saw. I was referred to an Ophthalmologist who confirmed cataracts in both eyes. There is another woman in my family who is on it for RA. I was diagnosed age 23 and she was diagnosed age 18. She is now in her 50s. The doctors know cataracts are treatable so they feel it is a safe medication. They also state the dosages are much lower than when it was given for malaria in the 60s and 70s. I believe then it "caused blindness". When this drug wasn't enough to do the job, steroids were added. One more comment for you to consider.