I’m Mac and I’ve just been diagnosed with Lupus (mild disease progression). I’ve been given hydroxychloroquine to take for 6 months - I’ve never taken a drug for that long or that ‘seriously’ so I’m quite nervous! I get quite a lot of anxiety around taking new medication for any reason.
What has your experience with it been like if you’ve taken it before? Do you have any tips and tricks? What exactly is it going to help me with? (Part of me is hoping my hair starts to grow back but that’s just the vain part)
They’ve also given me a fairly low dose of steroids that I can either take or not take, and I’m a little on the fence about it. My rheumatologist seems convinced the Hydroxy will benefit me more anyway too.
Let me know your thoughts and thank you!
Mac x
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Tinylittlemac
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I've been on hydroxychloroquine for about 12 years with no problems. I always take them after food, sometimes 200 mg per day and sometimes 400 mg per day, depending on my health. The dosage should be adjusted according to your weight.You MUST get an eye test before starting and then annually - I go to Specsavers every year for a standard eye test and I also get an OCT scan (costs about £10). Many CCGs don't pay for that.
I do think hydroxychloroquine has stabilised my lupus symptoms and normalised my antibody levels, although it's definitely not a cure.
Hi Mac, first and foremost, your anxiety around taking a long-term drug is understandable because I went through the same thing and more than likely, the vast majority of us here did as well.
In terms of hydroxychloroquine, it is a first-line treatment that is also prescribed by Dermatologists for hair fall associated with lupus including discoid lupus. It's very effective.
TIPS
Hydroxchloroquine:
I won't repeat what has already been posted but I always take it after food. Some individuals prefer a particular brand because they have nausea but I've never experienced this. Also, with this particular medication, its benefits are accumulative. In other words, it will take a while before you notice the benefits, which is usually approximately after 3 months.
Steroids:
I could write forever about steroids but I'll keep it short lol. As for steroids, your dosage is a salvage one (?) aka emergency only - I'm assuming - and is low due to your mild diagnosis. Correct? So just keep an eye on your calcium intake and it should preferably be via food (so I've been told). Also, NEVER stop suddenly (the steroids). Always gradually taper down or otherwise, your body could potentially react quite badly (talking from experience!). If you are unsure how to taper, go back to your Rheumatologist and/or GP for instructions but they should have told you how to upon prescribing these tablets. If a steroid card has been provided, carry it around with you when you are taking this medication as well. They also say it's better to take it in the morning because for some people, but not myself, it feels as though you've drunk 4 strong coffees. Instead, for me, I feel like sleeping beauty. Lastly, try and take the steroids at the same time every day.
In short, steroids are classed as a risk-benefit. They work hard and fast. You feel the benefits almost immediately. They do what they say on the tin, so to speak. 100% guaranteed. However, with long-term usage, and it varies from person to person, your body can become too reliant on them but this is not applicable to salvage dosages because it's as and when over a very short period of time.
Hope the above helps but I'm sure you will be inundated with tips.
Take great care of yourself
EDIT: just re-read your post and you said 'mild progression' and not 'a mild diagnosis'. Apologies. I was going to edit what I had written but I thought it would be best to keep as is, just in case.
Thank you so much for this! So much information Yes he said mild disease progression so I’ve ‘caught it’ early although I know it doesn’t work that way. I’m much less anxious now, although I didn’t know about the eye test! Nobody told me! I’ll book one on Monday x
Hi Tinylittlemac, many of us here on this forum take hydroxy, so hopefully you will get some good feedback to your questions from the community.
I’ve been on hydroxy for about 9months, 400mg daily. They get you to take it for 6 months, because that is how long it can take to reach full effectiveness. I personally experience great relief from rashes and sores (which grow on my feet, among other places, previously making it very painful to walk). I have not noticed any other benefits, but on the other side of the coin, I have not had any side effects either.
Others get relief from other symptoms such as joint pain, fatigue and brain fog. I have these symptoms but have not experienced any relief from the hydroxy in those respects. We are all individuals and it is hard to predict how hydroxy will affect you until you’ve taken it for a while. I recently spoke with my rheumy about increasing the dosage, as the sores have come back with a vengeance, but he advised against it as I currently suffer from breathlessness and hydroxy can apparently drop your blood pressure, which might make life harder for me atm. I haven’t noticed any probs with blood pressure, but the rheumy’s job is to weigh up the benefits vs risks and advise accordingly, and I do have a lot of faith in him. So I’m continuing with 400mg for now and waiting for the weather to change. That often helps clear up the sores.
Let us know how you go. Medication is very individual and it’s hard to predict which benefits you will gain from hydroxy, but most people tend to gain something good without much in the way of side effects. Good luck! 🌻
Thank you for your reply! It’s interesting hearing how it effects people differently. I’m hoping it’ll stop my fevers and make me less sore but I’m not expecting much! Thanks again
Hi Mac, it does work for me but took a while to get into my system, can take upto 6 weeks. It did cause my stomach to be irritable, I take mine straight after breakfast never on a empty stomach. I've also been prescribed omeprazole twice a day and that helps me. It's a great drug and it works just give it time to work😊
Hi Duchess1088, I'm also taking Hydroxy and Omeprazole but was told to take Omeprazole at least 6 hours before Hydroxy along with prednisolone and Myclofanax. It is something to do with stomach lining medicines and Hydroxy not mixing well😐 your doctor's advice is probably best but I just wanted to share my experience.
Hi Blossom751 thanks for letting me know your advice, but I was told to take my hydroxychloroquine with my breakfast as hydroxychloroquine cause me stomach problems and wait four hours to take my omeprazole then again before bed. I hope your doing ok.
I take 200mg daily and have been taking it for around 2 years. It definitely helped with rashes, although it did not hold back further joint progression for me. I've also recently had my first breakthrough urticarial rash last week, so will have to discuss this development with my doctors.
Not much to add that hasn't already been said other than be aware that there are different brands and sometimes it may be the particular brand as opposed to the drug itself that you may not get on with. I took the Bristol brand initially and suffered instant terrible low mood and tearfulness. This stopped when I switched to the Quinoric brand. Others have the reverse experience and are fine on the Bristol brand.
So just to say don't give up on the drug if you don't tolerate the first brand you try.
Hi Mac. Lots of good advice here. As well as this wonderful site, if you haven’t already, contact LUPUS UK for further help and support. We have trained contacts, local groups and lots of information booklets freely available on our website. Best wishes Kevin Weston
Hi Mac, great to read you're feeling a lot less anxious now. My goodness I, and most of the guys on here, felt the same when first diagnosed. But the anxiety does get better with knowledge and support.
You've had some top advice here so far so I won't repeat any of it.
What I will say though is regarding the steroids. From my experience, if you definitely don't need steroids don't take them. They make me feel absolutely great and indestructible, but they have come at a cost for me.
I wasn't prescribed Alendronic Acid (a drug you MUST take with steroids to protec your bones) for the first few years of taking steroids. The consultant forgot and didn't pick up on it. I now have osteoporosis. For me that's the worst thing as I'm an adrenaline junky and love surfing, skiing, jumping off cliffs and other objects. So now, if I get hit by a surf board or land awkwardly from a fall, I get bruised for days and days. And I know in the future I will almost certainly break a few bones.
So, in short, take advice from your consultant, and if avoidable, avoid then.
Amazing advice, thank you! I am wary of jumping into the steroids - I’m going to do all the research I can before even considering it. So far I’m leaning toward to taking them I think. Thanks again!
Hi, I have been taking hydroxy for about 5/6 years April till September. No steroids necessary & I have been absolutely fine, hair also quite thick now having used shampoo as advised by hairdresser. Good luck I’m sure you will be fine. Archie
Hi Mac, I was on 400 mg of Hydroxy for nine years without any side effects. It helped ease but not eliminate my rashes and most definitely helped the fatigue. I was advised to get an eye test before commencing and then regularly throughout with no issues. When a new Rheumy upped my dose to 600 mg daily I experienced issues with my vision. Get your optician to give you an Amsler grid that can help you identify any issues just by staring at it. If you go to Soecsavers they have hospital grade scans which cost £10. They can then monitor any changes annually. I have recently been able to recommence the Hydroxy but the low dose of 200 mg daily is not being very effective for me so hopefully I can get the dose upped on my next appointment. Good luck with everything
Hi Mac, I've been on hydroxy for almost a year now.. recently diagnosed. I was like you vary wary of hydroxychloroquine and just meds in general. Prior to being unwell I would even be anxious about painkillers. Now im taking hydroxy 400mg daily with other meds painkillers, aspirin and completely fine. No problems. The only thing I've noticed is that it is best to take it at the same time everyday, not on an empty stomach. If you misss one pill, don't stress it happens, just start over next day. Get your eyes tested as a baseline. This advice was given to me by my rheumatologist. I went to see a private and an nhs one. So far so good for a person who was anxious about meds, and oh boy I was anxious about hydroxychloroquine! To the point that my partner would have to talk me into it over and over again. It takes time, but you will be okay. We are all here to support each other. Going through the same thing. I've had no bad side effects to date. I was given steroids at first and then decided they werent for me, simply because the relief was very short for me, i had injections. All the best.
This is so reassuring! Thank you so much. I’ve been gaslighting myself into thinking I’m not ill enough for drugs, even though I’ve been on the floor for months! It’s just anxiety but I feel foolish for it. Thanks again and all the best!
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