Hello! Me again 😬 I have a couple of questions. Do you take your hydroxychloroquine at night after food or lunch time/ breakfast? I find I am wide awake at 4am and energetic ( for me) then. But wondering if I took it at a different time if it would have any other effect? Also - is two tablets quite high? It looks like most people take 1 or are advised to take two at different times.
I also have a question about whether taking it raised your photosensitivity and reaction to things generally like shampoo and sops and swimming pools?
Lastly 👀 what do you eat for breakfast? I’m never hungry but am now gluten free as discovered I am also coeliac so oats including gf oats are ruled out as I react even to those!
Sorry for all the questions which are probably somewhere in the forum but I find my eyes get v sore looking at screens now and my capacity for being thorough has diminished. And being so new to this I have random questions that pop into my head at 4am! Thank you in advance! 😊
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Whatafaff21
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I’ve replied to your previous post regarding Hydroxychloroquine….. It’s wicked stuff for me, & definitely 100% raised my photosensitivity & reactivity to products.
As for swimming, well after indoor swimming regularly for many years, I’ve recently had to stop due to how badly the chlorine/chemicals were affecting my eyes (despite excellent goggles), hair, scalp & skin….face& body 😟. The Vaseline (see other post), did help somewhat but the pool rules of showering prior to getting in the pool were contravened by me being covered in Petroleum jelly!
I also have a very sore, itchy scalp with sores, blisters & Acintic Keratoses plus very thin hair & alopecia at times. The chlorine & sun light through the roof lights/windows became an issue too along with the lotion/potion palaver & added expense of alternative swim wear which quickly gets ruined by the chlorine.
My skin (even without taking Hydroxychloroquine) is sensitive to numerous shampoos, shower gels, soaps, bubble baths, body & face moisturisers, hair styling products, makeup etc, etc ….Expensive trial & error….The ones that claim to be, “for sensitive skin” are often the worst offenders for me 😳, baby bath & shampoo are tolerable as are some branded items.
On prescription I have - ~Dermol 500 lotion which is both an emollient + soap substitute & Balneum Plus moisturiser. The Dermol is brilliant for showering with after indoor swimming & they’re both excellent body moisturisers. I use the Dermol as a facial wash also. (I did say it was a faff! 😂). These products are effective for me, but they might not be for you ….. ~Dermax shampoo (it’s ok, hair’s squeaky clean but dry so moisturiser is a must). I demote spares to dog shampoo, my Patterdale Terrier benefits 🐶! ~Dermovate Scalp Treatment = effective for itchiness, alopecia & hair thickening.
My Hubby was diagnosed Coeliac (he has RA too), it’s a life-altering & very expensive disease. GF food products are more plentiful these days but are way more pricey than non GF foods. Cooking from scratch with fresh ingredients works for us but everything has to be considered, eg stock cubes, soy sauce, brown vinegar, Marmite & cross-contamination.
He’s ok with GF porridge or layered overnight oats, but likes many of the GF cereals, eggs done various ways, GF sausages, bacon, fruit, yogurt, rice cakes with marmalade, bananas toasted on GF bread, warm, chopped apple with freshly grated nutmeg + blueberry & vanilla rice cakes…. Coeliac UK App aids food shopping 🛒.
Ahh that’s interesting. Are you still on it? Fro. The first day I would say my sensitivity has been raised. My scalp is awful right now ( everything you describe) and I swear that my hair is falling out! Thanks also for the info on swimming and the food! Your terrier must be looking very fine and sleek! My husband has food intolerances - some quite severe so we have adjusted somewhat to restricting diets but the breakfasts are tricky! Love the sound of warm apple and nutmeg!
Whatafaff21 Nope, I will never take that poison (Hydroxychloroquine again 🥴)….Adverse reactions were so bad, Rheumatology told me to stop taking it, I only managed 6 weeks of it.
Had further adverse reactions to every Lupus med I’ve tried thus far, including Anaphylaxis. Gone off various foods too….
You’re already accustomed to the ‘food aware’ lifestyle by the sound of it & have that experience to draw on. We learn to be food wizards 🧙♀️, label readers 🧐 & inventive 👩🏻🍳!
Hope you can find remedies & relief for your ailments x
You’re most welcome, this is a great forum, it’s helped me loads - advice, support, camaraderie, understanding etc, etc xx
Mycophenolate is my current Lupus medication but have been advised by Rheumatology to stop taking it due to ongoing, troublesome, persistent & worsening side effects.
Dose altered ⬆️⬇️ since commencing it July 23, been ‘battling’ with it in the hope of Lupus improvement & also ‘accustomisation’ 💊Helped Malar rash somewhat (not completely stopped it), still have Lupus Flares but bloods are always ok which confuses it all the more!
Keep going ….. 🎢🎠🎡….. It’s all good fun on this journey 🛣️🤣
HelloOver the yrs ive learnt how hydro works for me and il tend to take 2 in the winter, and 1 in the spring, summer and autumn months. I take it with my 1st meal of the day. Then the keeping you awake side affects are much less! Ive been on tbem 17yrs, so you learn what works and what doesnt, by then 😊.
Every day without fail I have bannana on toast 🤣 and sometimes a smoothie, sometimes apple juice, as these are least irritate my stomach.
Never be sorry for asking questions, these illnesses are very overwhelming, especially at 1st and sometimes you just need your worries, answered and putting at ease. Best of luck and take care of yourself x
Thank you so much. I sinceeely appreciate your words as am beginning to feel a little overwhelmed. I will switch to the morning and see how that works. Banana on gf toast sounds good! Thank you for your support x I have so many questions….
I usually take my hydroxychloroquine with breakfast. My doctor said that this is the best time to take it. I take one tablet per day but I know that lots of people take 2 per day. I don’t get any side effects.
Does any of you also take prednisolone and I omeprasole? I read somewhere that we shouldn't mix stomach lining medicines with hydrochloroquine? Hence I take steroids and stomach lining in the morning and Hydroxy and azathioprine in the evening.
I take one hydroxychloroquine in the morning with all my other tablets just before I eat breakfast. I have photosensitivity and it has calmed the rashes a little bit but I still get them.
I am coeliac and couldn’t eat GF porridge oats but I can now as long as it’s made with half water, half coconut milk and pure oats. I then add either honey and cinnamon or maple syrup and frozen berries. Milk is just as bad as gluten for me, and all my tablets are lactose free too.
Since being diagnosed with lupus my diet is more restrictive and tea and earl grey tea started to make me sick. I can’t eat spicy strong food or drink alcohol anymore as it all affects me and makes me so ill now.
If you have an unsettled stomach try to eat just chicken and jasmine rice for a few days. I even cook jasmine rice with coconut milk and add honey and have that as a breakfast it’s yummy. I cook up a big batch of either porridge or rice and keep in fridge then it’s easy to scoop some out in the morning and add coconut milk and reheat.
Please ask away if you have any more questions as I have been a coeliac since my twenties.
coconut milk! The porridge and rice sound lush. I’ll try the rice! I can’t stomach milk either atm but can’t give butter up… chicken and jasmine rice sound delicious. Do you season with anything? Or add oil? I feel I need to really rethink how I eat! I have quite bad photosensitivity atm- even phone and work screens affect me. So everything is becoming an adjustment. Thank you for your reply, will have a delicious new breakfast this weekend 😊
At the moment I just like plain old roast chicken with salt and black pepper and add salt to rice. I can’t stomach any flavour when my stomach is bad now and it is bad most of the time. I eat fruit and plan veg also when it’s bad. Other times I love making the spiciest curry’s ever and chilli etc….i just find I am having to eat blander and blander food to manage it, and small portions. I have got a hiatus hernia too so think a lot is down too this and all the new meds I am on. I also have to take senna a couple of times a week because the meds slow my bowels down and bloating due to constipation is awful as I have sooo much has. I have stopped my HRT this week as I am sure that was making it all worse. X
Ah! I stopped my HRT when I went into hospital in December and they said it could be lupus ( had a battery of tests and records check) as the oestrogen isn’t great for lupus I’ve read. Thank you for all of these tips. I am rushing for work but just want to say thank you sincerely and to everyone else providing support in this forum. It is overwhelming and so lovely to get answers so quickly. X
Just another thing, the lupus made me sick to lots of new foods, and that’s before I went on hydroxychloroquine so I think that some symptoms that people think are side affects are actually the lupus. Xx
Please don’t apologise for all the questions I understand.
I am on different doses on different days so I take 400mg for 2 days the 200 mg for 2 days then repeat , I believe the dose is calculated by your weight ., so 2 is probably not high,
I take mine in the morning before breakfast and if I take an evening one after food,
I do seem to have quite a high photo sensitivity, so I wear sunblock on my face all year round. I am more sensitive to soap so I don’t use it on my face I use dermal 500 instead ( I bought it from boots) it can be used as a soap and/ or mosturiser.
I also use only non bio soaps on my clothes and pure fabric conditioner.
I too am gluten free but not coeliac . I’m not a big breakfast eater but I enjoy 2 tablespoons of fat free Greek yogurt with 2 tbs of gluten free granola and 1 tbs of linseed with a handful of fruit either blueberries or chopped banana.
Being awake at 4am I share your problem I’m not sure it’s medication maybe insomnia caused by lupus
Thank you. So lovely to find a supportive community with lives experience and advice! I will get some dermol. My face is either like chopped ham or a pufferfish atm!
Check all things you put on your body for Limon/ limoncel anything along those lines as this makes me react, particularly on the face. I used to be in the sun all day running and I was always black, I just went black as soon as my body saw sunlight, then I started getting worse and worse rashes across any sun exposed areas. And then reacting to all sorts of stuff and then rashes without sun, and worse around October through to January where I have no sun exposure. Think it’s just the weird lupus progressing.x
Thankyou! Yes am beginning to think this is a trickster virus- it gets weirdly worse at random times. I will do that- am thinking of writing to a few skincare companies to ask for samples and if I get any will let people know on here so I can post them out to you all. It seems like it is hit and miss. I’ve tried three foundations and face creams and none seem to absorb so far and leave me with dryer chopped ham 😆 coconut oil only atm in my skin it’s all I can tolerate but may see if I can get into town to check it out. Thank you x
I just thought of another cream when you mentioned chopped ham and puffer fish , sounds sore 😩. When mine is sore red and choppy I use a cleanser called Dermalogica cleansing cream. It’s no cheap but you can buy a small bottle to try it out . I put it on and leave it on , it’s so soothing
I take one Hydroxychloroquine as two gave me awful constipation and bowel pain and I take it in the morning after breakfast. I think sleep problems are part of our condition but I take progesterone and gabapentin (for pain) and that knocks me out most of the night otherwise I didn't used to sleep much tossing and turning.
With Hydroxychoroquine make sure you take it with milk ( whatever milk you take ) always. I take mine at night before I go to bed about an hour or 2 before bed. It works really well. My Hydroxychoroquine dose is 200/400mg at night . I have been told to take it at night from day 1since diagnosis from my consultant.
As for your eyes suggest to try preservative free eye drops for your eyes. The bottles and the outside (box) should say they are preservative free. I have been prescribed Hylo forte it is really good. Visu pharm also do some good preservative free eye drops ,they are the people who makes Xailin gel which is worth looking at. They are expensive and they are have good reviews. It is the Visu XL. I am on Xailin gel as well at night . I have extremely dry eyes. And I see a Corneal specialist. Try and see a eye specialist to get your eyes checked out to make sure that your eyes are ok .
As for food intolerance, it got gradually worse over the last 2years. And I came off gluten totally, I was not able to tolerate the gluten test. As I was having so much diarrhoea and stomach cramps . Having diarrhoea several times a day like 4-6 times and a very sore bottom.
Change my diet totally cut off gluten. Don't share knives when cutting gluten food with gluten free food. Especially when it comes to bread. Even in buttering. As for cereals there are a few that I rotate around that I liked they are Nestlé brand GF cereals. I cannot have GF Oats either felt like more like an intolerance. Occasionally we have bacon sandwich (Gf bread) , hubby has normal bread. But when I cook dinner or any food it is totally gf . During the Christmas period I made 2 different Christmas cakes 1gf and 1 normal Christmas cake. I do make Gf bread as well. There is also loads of GF bread recipe on the website and Instagram. There is one that is would totally recommend is Freshisreal.com this is her website she also had her Instagram site which is that same . For cakes you can check out "from the larder" she has some good GF cakes there that I would certainly recommend she also recommends alternatives flours but I use my initiative and I do my own trials on certain flours that she hasn't trialled. Because not all flours I agree on what she use especially she uses alot if Oat flour so I can't use those and I substitute it alot with other flours- pending on the recipe. I really missed making normal waffles and really want to try making a GF waffles.
One thing to watch for when doing your food shop is reading the labels on the bottles of the jars and even the tom ketchup. We manage to find one that is GF and garlic free because I can't have garlic or mushrooms.which extents my food intolerance even longer. So we have mastered and know which ones that I can hv and we also can spot the one that actually says GF but they are not really gf for me as they have milk in them as I can't have dairy .
No dairy , no gluten , no garlic, no mushrooms,no oats,no kiwi(fresh), no pineapple (fresh) so that limits my food intake nope I have loads of choices . Still live a healthy life and eat well. Just being very careful on what choices we make when we shop.
Just make sure you eat lots of oily fishes like Salmon, sea bass, cod's, and colourful veggies.
Red meat occasionally .Make sure you take your supplements especially high doses of Vit D . Which is what I have been doing the last few months.
I use sulphate free hair shampoos and conditioners they work really well. And are pleasant for my scalp. I don't get scalp blisters or lupus lesion as much compared to previously.hair is less dry as the oils of my hair is starting to come back to my scalp now. There were no oils before they were totally dry.
Hope everything works out ok with all the advices that you have obtained from all of us here .
This is fantastic! Thank you. I will follow those people on insta. I can’t have garlic either and advised no deadly nightshades and I have lived on aubergines and tomato’s! Love them. More fish it is. This is all so helpful- I keep re reading as am at work currently but huge thanks xx
I take my Hydroxychloroquine at breakfast time. I've had insomnia all my life, so I'm probably not the best person to ask regarding that! I don't eat gluten and for breakfast I'll usually have porridge/oatbran, GF bran flakes (Tesco & Sainsbury's do them), Nutribrex or Holland & Barrett buckwheat puffs and add fruit to them. Sometimes I'll do a mix of corn/bran flakes, buckwheat puffs and oats. Polenta made up like a warm pudding is quite good as a porridge alternative and I have seen rice flakes (you can also get ground rice, which you can make like a GF semolina). I did once buy buckwheat flakes, toasted them and made my own muesli mix, but it was a bit of a faff! I only have a small amount at breakfast, as I don't have a big appetite. Fruit with yoghurt or toast is also good, although the price of gluten free bread seems to keep going up and up! There are some really nice nut butters out there these days and banana & peanut butter are a great match.
My diet is a bit complicated for various reasons, but I don't eat gluten, have periods of time off dairy and never have milk at breakfast time (it just makes me feel queasy that early in the day for some reason). My coeliac test was negative, but my IgA was low, yet the gastroenterologist said it's "not low enough" to provide a false negative because I have "some". I had the gene test and apparently don't have the necessary genes, but at my last appointment he said the chances of me having coeliac are very very small after previously telling me it was impossible. So I'm a little confused about all that!
Thank you! With your IgA have you seen your results? When I finally saw a few years worth with my consultant he was surprised and pointed it out to me. The Dr had told me I was ok! So I have booked an appt to see them to discuss my children as they surely have symptoms too. It’s a worry. I would push back on them. Sorry this may seem a bit rude but I hear you, I too was puzzled and unsure how to proceed! It may be that relatives did suffer but just didn’t know x
You don't sound rude at all, don't worry! I had to point the IgA thing to my GP before he referred me to gastroenterology - makes you wonder if they're system isn't set up very clearly or something. The colonoscopy found inflammation, ulcers, slight crypt distortion around my rectal area, but he said it was barely anything and still seems certain it's IBS. I'm fairly sure it's not just that, but whether it could be some mobility issues as a result of the connective tissue disease, IBD or coeliac is anyone's guess. I was gluten free when I had the colonoscopy, but not had an endoscopy when eating gluten (and I'm never sure if I ate enough gluten anyway).
I had my tests in 2014 & 2021 and the results were (normal ranges from NHS in brackets) :-
2014 IgG 7.8 g/L (6.0 to 16) IgA 0.69 g/L (0.80 - 2.80) IgM 4.07 g/L (0.50 - 1.90) tissue transglutaminase IgA <0.1 u/ml (normal range below 7)
2021 IgG 8.0 g/L (6.0 to 16) IgA 0.67 g/L (0.80 - 2.80) IgM 3.45 g/L (0.50 - 1.90) tissue transglutaminase IgA <0.1 u/ml (normal range below 7)
No one has explained to me why the IgM is so high either, but maybe they are insignificant compared with how high they can be. With slightly off blood test results + a ton of symptoms it is hard not to wonder what is going on. It's definitely wise to discuss your children, as it's well known to be hereditary. If you're already gluten free at least it might be easier to alter their diet (although it's no fun as an adult, so probably quite a shock as a child!)
I take mine after breakfast but have to make sure I take it with food, even if it’s just a bit of toast. I take my second one with a meal at night. It doesn’t affect my photosensitivity. It’s supposed to be one of the milder drugs which I’m grateful as it works for me and I don’t have to go onto a stronger medication.
The other thing you might want to know with food labeling alot of them when they put down spices as a generic we (hubby and I ) are cautious because these can include garlic which some do not declare. I do get reactions to products that do not agree with me such as inflammation in joints and bladder and gut. And I get quite ill . Almost like a infection. Once they are cut out totally I am fine. Noticed some foods with Xantham gum does that not all. So I am not sure why. I do use physillium husk when I make cakes and bread and I am ok with those . No problem as all. Vinegars there are 2 types of vinegars on the market spirit vinegar and malt vinegar . If you are into making your own pickles or looking into pickles this is something you need to be aware of. You need to get Spirit vinegar that is made from corn. All malt vinegar in the UK are made from Barley or oats.
I did alot of research into this when I wanted to go into pickling my own beetroot in vinegar so I managed to obtain one with corn made spirit vinegar. Made it in Nov last year and we had it over the Christmas period it tasted absolutely gorgeous. Even my hubby commented it tasted just as good as my usual normal beetroot pickle vinegar.😉☺️
So I find if you are willing to experiment and research what food is out there it is certainly worth while. But it takes alot of work and hours.
Malt vinegar are made from Barley or from oats which I cannot have them both . If you research you will find all the malt vinegars are made either from Barley or oats. They make me very ill and sick. So the only one that is GF is spirit vinegars. I have done my full research.
As I stated, there are several brands of barley malt vinegars which are actually labelled gluten-free available. I have them, and so does my coeliac daughter. Unfortunately if even a miniscule amount of barley affects you, you will have to choose an alternative, but, for others, a gluten-free malt vinegar labelled as such is suitable for coeliacs. Coeliac UK, as you probably know, has in-depth information about all foods, including malt vinegar, and yes, I do my research too.
Hello, I take my hydroxchloroquin twice a day. Mostly before breakfast and I try to take the evening one before 6pm. I really do not have a set of time. I find that taking my meds soon as I get out of bed, helps to containers my pain before I properly start the day. That has been my prescription for the past 12 years. For photosensitivity use SPF 50 for extreme sensitivity I have ordered neutrogena SPF 100 from amazon. I struggle with sleep too the problem with lupus is most times I cant differentiate between Flare-up and medication side effects.Take it day at a time. Soon you will learn to understand your body and listen to it. Take care and I wish you all the best.
I too react badly to Hydroxy if I take it after dinner. It interferes with my sleep. And it makes me feel slightly dizzy and weak so I never take it in the morning. My comprise is that I try to be as active and clear minded as possible in the morning. I take it after my lunch and this means my afternoon is always affected with slight brain fog, poor balance and etc. I have begged my Rheumy to take me off this but he says it is the last medication. I have already given up on Mycophenolate and have discontinued Pred. I think the dosage is based on one's body weight. I used to take 400 mg and felt so unwell most of the time and when I got a new doctor, he lowered it immediately saying it was too high for me. That's when I realised that I reacted badly to Hydroxy. All those years I thought brain fog/poor balance was due to my condition. it is Hydroxy!! 😂
Ahh that’s interesting- I’ve been dizzy and off balance but put it down to myositis recovery and a heavy period. Also have inflamed face and hands. I’ll keep monitoring it! Am sorry you went through that. Thank you for sharing. I too make the most of the short period when I have clarity! It is so welcome!! 🤗
Believe it can reduce blood glucose slightly, at least initially, causing light headedness. So best to carry around something sweet to eat, and if this happens again see if it helps.
Here is a paper suggesting possible future use in preventing diabetes:
I was photosensitive before taking hydroxychloroquine.
I take hydroxychloroquine with substantial breakfast, and smoothie as found otherwise it would go straight through me. Some people find some brands better than others. Here is a post with videos in:
Thank you so much for these links. So informative ( the treadmill 😝) am very grateful. Evidence informed and clear for a foggy brain. Thank you very much and for your advice on the other query forum. For so long I’ve been going back and forward to the GP, dismissed as another menopausal or anxious woman and now I look at these and think- it was so obvious, these GPs need a bit of another education. I’ll be suggesting these links, especially the one with Dr Kaur at an appointment I have soon. Should he recommended viewing for all GPs. Thank you x
hi I take all my tablets with breakfast and at dinner time. I always eat as upsets my stomach. I take lansoprasole in the morning 30 mins before all of my tablets. Only upset I have is a bit of an upset tummy first thing but think an operation caused that. No other side effects.
It's an interesting question. I've been on Hydroxychloroquine since 2004 at 200mg once a day. I try to space out tablets as my stomach gets upset very easily. I take Lansoprazole when I wake up, at least 15/20 minutes before I eat breakfast. I take Prednisolone with my breakfast. I take the Hydroxychloroquine and Ferrous Sulphate with lunch but it needs to be a reasonably substantial lunch to avoid stomach upsets and then I take Colecalciferol with my dinner. In general this works well in terms of side effects.
Hello Whatafaff21 , wishing you well, sorry it takes me ages to reply.I do take 2 tablets one a am/pm , I usually take one first thing in the morning with a whole load of other medications that I am on . As I don't like to eat breakfast until very late. I am not allergic to any food which is a blessing. however I am sensitive to hot and cold weather's recently. I can't tolerate either. It effects my health and come out in rashes and sores and swelling. Fatigue and mouth and nose ulcers . Sore fingers and toes etc .
I take my hydroxychloroquine twice a day at roughly 12 hour intervals so in my case 10.30 am and 10.30 pm of course there are always days when I have to take it slightly earlier or later but if I forget one dose I’m in a right state! It certainly helps my pain I have recently discovered that the Zentiva brand makes my skin rashes much worse due to having had to take a different brand during the lack of availability of zentiva when Iit came back in stock and they gave me it after a week back on it my rashes started up again and when I stopped it and took the other brand it cleared up! But of course now the other brand is out of stock grrr! I have also noticed that some of the brands have lactose in them and I seem to be becoming lactose intolerant so the one I want to be on is lactose free so hoping it’s back in stock quickly! I don’t have a problem with gluten as such just bread so I only eat homemade brown seeded bread which I tolerate well. But I can eat cereal though I have yogurt on it (as there’s less lactose in it) with fruit, have to looked up the ceoliacs society ( or whatever it’s called) website there maybe some hints and tips for menus on there
Hi, I've taken hydroxychloroquine on a number of occasions over the last few years and haven't had any problems. In the past I have been able to manage my condition with hydroxy alone but I started having a flare at Christmas which is causing chronic joint ache and this time accepted a course of Prednisolone while I wait for the hydroxy to kick in. I find this condition causes UVA sensitivity in itself so I try to keep out of the sun. I also get very dry eyes so use tons of eye drops which stops them getting sore. I take 1 x 300 mg tablet a day with breakfast so I don't forget. Hope it works for you, it certainly has less side effects than steroids!!
Yeah, lots of headaches. The worse thing about this condition is you never know if your symptoms are down to the meds or the condition! Although it's the last thing you feel like doing, I find exercise really really helps!
Hi there, I’ve been on hydroxychloroquine for over 30 years, I’ve never had any side effects that I’m aware of. I take 2 x 200mg tablets in the morning after breakfast. The dosage is related to your weight. X 😊
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