hi, after what feels like a lifetime, I was yesterday diagnosed with mild lupus by a rheumatologist.
He said he couldn’t understand why I’ve been left so long with debilitating symptoms just because my bloods were ‘too normal’
He took one look at my hands & said how swollen my fingers were, then checked my mouth which has ulcers, asked about my chillblans/ raynaurds & alopecia.
He’s started me on 200mg of hydroxychloroquine but advised to start one a day to begin with due to likelihood of nausea?
Any advice on first starting on these meds greatly received, thanks.
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Frenchfancy
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Hi Frenchfancy and welcome! Good on you for reaching out here, and congratulations on your diagnosis. Getting lupus diagnosed can be quite a shock, but for some of us (me included) getting the label was a huge relief. I hope the label will be helpful for you and give you clarity going forward.
I initially started hydroxy on 200mg like you, and it was primarily for rashes and chillblain-type sores (vasculitis). I did not experience any nausea, but I take it after food, and apparently this is a trick a lot of people use. After a couple of months and no benefits, I increased to 400mg, and that’s when the rashes seemed to come under control. So it took me about 4 months to get those benefits from hydroxy. The rashes are about 90% better than what they were, so they haven’t totally disappeared, but it’s quite a relief to not be in the amount of pain I was in before!
Good luck with the hydroxy and let us know how you go. 🌻🌈
Hi,I was diagnosed in 2019 by "accident " because I didn't have symptoms except for aching joints and a swollen finger.
I was put on 200mg per day and am now on 400mg. I haven't add any side effects thankfully.
What I would suggest is that you make an appointment for an eye test and pay extra for the test they do to check the back of your eye. This will give your optician a base line for your eye health as hydroxychloroquine can damage them. You also now should have them tested yearly.
Good luck and welcome to the club. This group of people are very helpful and friendly xx
I agree about different brands. I couldn't tolerate Bristol labs or ipca which made me nauseus all day but i can tolerate zentiva with no side effects at all. There are many threads on here about makes of hydroxychloroquine and trying different ones to find what you tolerate the best. It took me over six months to see a benefit so stick with it, it's not instant relief usually. I agree an eye check up with an ophthalmologist not optician is recommended because of possible eye damage. Make sure you're ct scanned at the check up as this picks up minute changes and you can stop hydroxy ASAP. The main thing is hydroxychloroquine should dampen your immune system so your symptoms can improve or at least not progress so quickly. It's the first line of defence for us.
Hi - I’ve never heard of nausea with Hydroxy- always eat first even a biscuit will do. They are slow acting so be patient waiting for improvement- but it will come. Don’t read or listen to side effects. I always imagine them once I’ve been told. We are all different and Hydroxy was a game changer with Lupus. Good luck
Hi. I had the same diagnosis some years ago and was prescribed hydroxy. I didn't have any side effects from it, in fact it suited me very well and helped with fatigue, sweats, shortness of breath, having no energy or strength I was just sleeping all the time.
I was on it for a few years until I saw a new rheumatologist who said my SLE was stable and she stopped the drug, sent me for eye checks which were all fine. The mouth ulcers are from Sjogrens diagnosed with a biopsy at a dental clinic. I also had Raynauds and that's improved. The hair loss hasn't recovered.
It sounds like your doctor has given you good advice and I hope the tablets help you as much as they did me...
Dr Donald Thomas who wrote “The Lupus Encyclopedia” should have all the answers you are looking for about DOSING of HYDROXYCHLOROQUINE and any other ISSUES that involve LUPUS (which is constantly changing, new symptoms, medicines to consider, etc).
I have Never heard of a Dr using a Lower Dosage 1st, but he may have a few Patients that have EXPERIENCED Gastric Issues. We also need to REMEMBER the LUPUS “itself” can have GASTRIC INVOLVEMENT in a FLARE.
In 2011 new GUIDELINES came out that it was based on IBW (ideal body weight), but in 2016 new studies indicate some people may need more.
(HYDROXYCHLOROQUINE takes “4 - 6 MONTHS” to get some RELIEF from some of your SYMPTOMS. It still is the BEST medicine to keep Lupus at BAY. )
READ BELOW - to help you be PROACTIVE working with your DR on the proper Dosing to “help” your body CONTROL LUPUS Joint Pain & Flares, and get EYE CHECKS “once a YR” to check for Eye Toxicity (usually takes 7-10 yrs before any problems “might” develop - very low % of people have Eye Toxicity).
Living with LUPUS is a JOURNEY - learning to EDUCATE yourself on LUPUS will help you on your Journey & learning what “TRIGGRS” your LUPUS FLARES is very Important.
TRIGGERS can be SUNLIGHT, STRESS, Viruses, WORK/Family Redponsibilties & not RESTING when your BODY is SCREAMING “REST”, foods {Garlic, Alfalfa Sprouts}, SULFA DRUGS, etc.
Great ADVICE: 28 Secret of Living with Lupus- Dr Donald Thomas
Lots to Learn, but we are better as we know LUPUS & how it acts or attacks our Immune System 💜😊 Wishing you better days ahead, it’s a GREAT FEELNG to get the DIAGNOSIS & have a GOOD RHEUMATOLOGIST that works well with us 🤗💜😊
Great to hear you have received your long awaited diagnosis!
As mentioned below, there are different brands of Hydroxychloroquine and not everyone reacts the same, so you may need to try different types to find what suits you. I have attached some links to publications from our website that you may find useful to look over.
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Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
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Rheumatology Appointment - Finally!
