hydroxychloroquine for Sjorens

[GardenGladness23]

Hi all, I have recently (finally) been diagnosed with Sjorens and Sub cutaneous lupus. My main unmanageable symptoms currently are fatigue as in sleepy tiredness fatigue, brain fog and muscle tiredness and aches / feeling slow and creaky in my body.

I have been prescribed hydroxychloroquine, what are people's experiences of this?

Currently I am put off because I am reading that it can effect your white blood cell count and make you more susceptible to illness. I already feel like I have a rubbish immune system full stop and currently have a 6 yo who thanks to lockdowns still hasn't stopped bringing home a new virus every 4-6 weeks, which when I get I struggle to shake.

I can't see the point in taking a medication that whilst it may alleviate the Sjorens will have me picking up every virus going and feeling no better than I do anyway 🤪.

It’s good with few side effects

but for me it didn’t work… I’m try methotrexate

Currently I am put off because I am reading that it can effect your white blood cell count and make you more susceptible to illness

Honestly, I hate to be the bearer of bad news but all the treatments for autoimmune disease do exactly the same thing with your immune system, however, hydroxychloroquine is probably the least troublesome and the usual starter drug.

Edited to say like PP I also started on this but it wasn’t enough to control my symptoms.

I had a horrible allergic reaction to it and was plastered In the reddest itchiest hives that all joined up so I became one big red itchy mess. It was so bad I was hospitalised. But that could happen with any medication.

I've taken it for about 8 years. It's done a good job.

Your diagnosis is an auto immune disease. All drugs for autoimmune will increase your susceptability to infection. They are called DMARDs. You have regular blood tests to check and you are more susceptable to infection. I try not to worry about that too much but covid was a worry.

HCQ is one of the milder ones.
The dosage is weight dependant, I found out after 5 years that I had been taking too much. No issues though.
It can affect your eyes and for that reason I have extra eye checks, my rheumatologist referred me to opthalmology.
It also takes about three months to start working so you must give it time. It also takes about three months to get out of your system which I discovered when I had to stop it for chemotherapy for breast cancer.
After my chemo the HCQ wasn't enough on it's own so I also take sulphasalazine which is another milder drug but I had more problemss with that.

@Boope nailed it. I was on 200mg per day and it stopped me incessantly micro napping and the cognitive fog & had no ill effects. Rheumatologist said it helps mostly with tiredness and joint pain. (Venus Williams has Sjogrens and takes hydroxychloroquine aka Plaquenil btw!). I read in a USA study that a vegan diet can help with inflammation apparently. I tried it & my markers came down & saliva came back. Eyes weren't so dry. Lupus and Sjogrens are sister diseases with commonalities and overlaps. Methotrexate another common DMARD rheumatology drug can affect fertility.

I also have Sub cutaneous lupus and was prescribed hydroxychloroquine. It gave me horrendous indigestion so I had to stop taking it.

Can I ask were you diagnosed via blood tests?