Newbie here.

[Aleish]

I’m on the GCA/PMR site for two years and on prednisone all that time. Was not getting rid of pain and now possible diagnosed Sjögren’s/Lupus. However all tests are positive abnormal and my symptoms are obvious. Don’t know why they are not as sure as I am about the diagnosis. I also receive monthly IVIG fir CVID. Was started on Plaquinil yesterday. How long does it take for Plaquinil to start working?

[Lupiknits]

Welcome Aleish! Plaquinil ( which we often shorten here to “hydroxy” in reference to the generic name) takes, in general some 3 to 6 months to show effect, though some have found it helps sooner. Unfortunately that takes some patience, but it’s worth it.

You may have some early side effects of an upset stomach and/or very itchy skin, but that passes quickly.

[Krazykat26]

Hi Aleish n welcome to this forum 💐🤗

What a lovely picture!!!

Hydroxy does take a while to get into your system..so persevere with it..it gave me heartburn at first so I take all my meds with milk..it helps!!

It can make u photosensitive if your not already..so wear sunscreen factor 50+ and cover up in the sun..hat, shades,long sleeves n trousers. Also it can affect the eyes so u should get them tested to check general eye health..once a year is recommended at the start. Xx

[Djlr in reply to Krazykat26]

All Lupus 'Patients should wear sunscreen everyday – I don't think it's the Hydroxychloroquine that makes us sensitive to the sun- that is a symptom of Lupus.

lupus.org/resources/uv-expo...

It is interesting though, if you read the side effects of hydroxychloroquine it does indicate sun sensitivity, The doctors really recommend hydroxychloroquine for lupus patients who have sun sensitivity before they start the drug.

If you read the article above, it indicates how "it is prescribed for the sun sensitivity in lupus patients" to help us - since it is a problem for lupus patients from the UVA/UVB rays from sunlight or ultraviolet lights inside stores, doctors offices, homes, offices, etc.

Anyway, we do stay covered up -long sleeves, hats, sunscreen all over the body, sun, cloudy days, just walking to your car, all of these can be just enough to make you have a "reaction to the sun due to lupus sensitivity" and that does not mean just a rash, it can affect any of the organs in your body if you have sun sensitivity. It Can induce a large flare lupus, if we are not careful.

Our "new norm" is a learning process from day to day, and the better informed we are the more "we can be proactive" in helping take care of our bodies with our doctors.

[miccika1]

For me it took about a couple of weeks. Specifically it reduced my small joint pain. I wasn't able to hold a cup or open a jar but w plaquanil i just feel a little pain if i squeeze my fingers or make them like a tiger posee

[Aleish in reply to miccika1]

Miccika, that is fast and I’m hopeful I too will see an improvement in all my symptoms.

[Djlr in reply to Aleish]

That is fast – but you're right, it helped with the "joint pain", I can't tell how it's affecting the other parts of my body. But hopefully it's stopping it from becoming worse as I age 😳🙄💜

I have friends who had to stop at due to the toxicity in their eyes, and there Lupus is getting way out of control in their entire bodies. One of my friends says I am so lucky because I get to stay on it, because ever since she came off all of her organs affected by lupus really struggle. 😥

[nanleighh]

Hi Aleish, Welcome to the forum. I am now, and was diagnosed with us so we in 2014. It took eight months for the hydroxychloroquine to kick in for me. So don’t give up if you don’t get immediate results because it is quite a miraculous drug. It has helped with my joint pain, muscle weakness, and fatigue. I wish you the best of luck in your journey. XO Nan

[Djlr]

Hydroxychloroquine is really great lupus pain, I was on an NSAID and it never did anything for my pain – nonsteroidal anti-inflammatory drug.

When they finally added Hydroxychloroquine, within 4 to 6 months the pain in my joints became intermittent versus steady and constant all the time.

Some people will feel the effects sooner but it took every bit of the 4 to 6 months before the pain was lessened quite a bit. I had to make the doctors let me come off of the NSAID, I told him it was not working and it was messing with my stomach. I came off myself, and absolutely it did not make any change in my pain by coming off The NSAID.

So give it time, and I believe it should help you.

One thing to watch out for is the change of the seasons, or drops in the barometric pressure, will cause excessive joint pain due to the synovial fluid within the joints that expand and contract causing pain. Just like a wooden door expands and contracts with the moisture outside, so do our joints. My rheumatologist said the best thing for this would be to get into a bathtub and float in the water to adjust the barometric pressure with your body . ( you might add some Epson salt's to help take toxins out of your body as you soak in a warm tub )

But many times we just have to wait the storms out as they pass, and a lot of us feel the storm is coming two days before and when they get here, a lot of times, we're a lot better.

I bring this up because a lot of people don't relate the weather and their joint pain with Lupus. But if you sit down and look at it you probably will see that there is a correlation.

Best of luck to you, and the prednisone is not a good way to go – so bad for your body.

If someone is on prednisone regularly, it should be 5 mg or less per day as a maintenance drug. That should be your goal, unless you can completely come off of it which would be best.

I'm's glad you're starting the Hydroxychloroquine. My doctor did not start me right away either but that was almost 18 years ago. It is supposed to be like the first line of defense for lupus patients because it is such an easy medicine on the body if you can tolerate it, which 95% of the people can.

Just make sure you see your eye doctor once a year to check on your peripheral vision.

Have a wonderful day 💜🌷🌸

[Aleish]

So far and only 3 days on Plaquinil and I see a difference. Headaches are almost not noticeable. Also as long as I stay grain and sugar free the all over pain is down from 10 to 2. I had cheated with rye crisp crackers yesterday and stomach and back pain came back but still not dealing with awful headaches. All this is 3 days is amazing.. Back on strict diet today. Seems like this will be a winner medication for me.

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Leaflet from BSSA, BRITISH SJÖGREN’S SYDROME ASSOCIATION,

bssa.uk.net/pdfs/informatio...