New meds : Hey! Anyone else taking... - The Australian Sj...

The Australian Sjögren's Syndrome Association

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New meds

Angellealea1 profile image
13 Replies

Hey! Anyone else taking Hydroxychlorquine for Sjogren's? I'm starting the new med in 2 weeks, at one a day & will be increasing meds as I go.

Will be interesting to hear feedback..

Many thanks

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Angellealea1 profile image
Angellealea1
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13 Replies
ChristaM profile image
ChristaM

Hiya! I’ve been taking it for 3 years now. First year 2 a day since 2 years reduced to 1 a day. It has made all the difference for me. I’m no longer as tired and stiff. My hair did fall out quite a bit in the beginning but its ok now. I do also take vit D supplement and in general feel quite good. I do eat a healthy diet and exercise regularly. Hope this helps 😊

leapingmonkey profile image
leapingmonkey

I’m on one a day, it has helped to control migraines & locking of finger/thumb joints. I have regular eye examinations & blood tests

25clai profile image
25clai

I’m on max dose, have been for 18 months . I had to build up my dose v slowly , as my stomach was so bad. I’ve had improvements in various parts of my body since taking it. Stomach, aches and pains in fingers, arms , Legs and pelvis. No more uti s. I also have more energy. It’s a slow build drug, so don’t expect results immediately.

Good luck!

Bettyboop71345 profile image
Bettyboop71345 in reply to 25clai

What is the max dose ? I'm currently on 300mg daily...

HollyHeski profile image
HollyHeski in reply to Bettyboop71345

I'm on 400mg daily and been on this dose now for over 10 years. Did try and reduce once and symptoms immediately came back, took ages to get back to no pain.

They do advise yearly eye checks for retina disease.

Bettyboop71345 profile image
Bettyboop71345 in reply to HollyHeski

Yes, I am now on 400mg. and I see an Opthamologist next week. They called it a Plaquenil Evaluation...

25clai profile image
25clai in reply to Bettyboop71345

My understanding is that it is 400mg per day

rosserk profile image
rosserk

Hi I am hoping my consultant will start me on this medication. I’m suffering really badly with dry burning mouth which is becoming intolerable. Have you had problems with the same? If so would be interested to know if the meds help 💐

25clai profile image
25clai in reply to rosserk

Hydroxychloroquine definitely helped with dry mouth/ throat and eye problems.

rosserk profile image
rosserk in reply to 25clai

I really hope so thank you for the positive reply I’m so desperate I’m in so much discomfort not sure how much more I can take x

25clai profile image
25clai in reply to rosserk

Hang on in there...meds should help with dryness too. Every step I took was painful before the meds, but it’s helped. Are you trying throat sprays and moisture sprays? I found them helpful, not a fix , but may give you some relief.

rosserk profile image
rosserk in reply to 25clai

Hi thank you! Yes I’ve tried everything! I’ve got an appointment with my consultant on the 25th October so I’m hoping to hold out till then. 😭

Angellealea1 profile image
Angellealea1

Thank you all so much for replying, I really appreciate your time, I'm starting meds this week, just had bloods done today, so I'll keep you posted with my journey guys x

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