Hi have been on the Hydroxychloroquine for a few weeks. Am thinking I am allergic to it as after every tablet I take I start to feel quite unwell then after about 12 hours then feel slightly better so I take the tablet next day then the whole issue starts all over again. I have had extreme reactions to most medications all my life and the worse being is pain killers which make me vomit. I am now taking no medication at all not even the Hydroxychloroquine as have felt very ill after taking them with the worst symptoms of rapid heartbeat being the worse. What do I do if the tablets make me worse do I persevere till they do the job whilst I feel more unwell or do I look for other treatments or just don’t take anything and get on with it. I struggle as I normally can’t take any medication without side effects or feeling worse after taking them. Thank you any advice is much appreciated.
Reactions to all medication help and advice needed. - LUPUS UK
Reactions to all medication help and advice needed.
Which brand are you taking? People say the generic brands have made them feel ill and a brand like Zentiva is better (I take this and have never had problems with it). You have a concoct a good reason to get your GP to change or get your rheumy to do it.
Thank you so much for your advice I will need to go check the box later today as am too fatigued to get out of bed. The box is purple and white and tablets have a horrible metallic taste and have a lot of fillers in them. Will be seeing the rheumatologist next month so will see if there is an alternative. Thank you again and I am wishing you a merry Christmas and a happy new year.
Very good luck to you. Lupus makes us sensitive to fillers, so it's worthwhile getting it right. Maybe also look at anything else you could be taking as well because the hydroxy can take up to a year to work effectively, depending on the person (for some, it can be quick and for others, not).
Medications can give you some quality of life so hold in there. I had some good success with private prescription meds like low-dose naltrexone too!
Thank you for your help. I think I may go see a private gp at methley Park and see what my options are. My rheumatologist is useless but like everyone on this site they seem to be having similar problems. Will definitely look at the other medications. Thank you as your advice will be helpful. Hace a nice day. 😀😀
Hi Hidden . Is your consultant aware that you have stopped your medication? It may be worth contacting them to let them know you are struggling with side effects. They may be able to change dose or offer a different brand/treatment that you may be able to tolerate better.
If you are unhappy with your current rheumatologist then it may be worth asking your GP to refer you to someone else. If you would like to know which lupus specialists are in your area, please just let me know whereabouts you are based.
I am not suggesting that this is true for you but it is my cautionary tale.
Some years back I had a renal crisis.
At that time i always listened to my doctors advice diligently and followed their instructions to a T.
I was going through a period of unstable lupus and was placed on several drugs. It's a long time ago but I remember I was on prednisolone, azathioprine, and hydroxychloroquin and others.
I felt really unwell, I looked really unwell, but I continued taking the meds as I was told sometimes the body needs a chance to get used to them.
I did as instructed due to the fear of what might happen with my lupus if I didn't follow the instructions. After all the doctors are the experts.
Then I ended up with a protracted hospital stay after my kidneys almost shut down completely. The official line is i suffered a scleroderma renal crisis. And the drugs I was on were not in any way culpable.
But in the years following that event I have become more inclined to listen to feedback I receive from my body. You can't always immediately tell what is causing a new symptom but if at any time I feel a drug is not working for me I become reluctant to continue it.
It may be that this drug is not working for you or that the generic variant is not working for you. It may be something else.
But don't ignore the symptoms.
Thank you so much for your reply and am so sorry to hear of your experience. Yes some of my symptoms are new. Am out of breathe the only thing the dr has done is give me a stronger inhaler for my asthma but it’s ineffective. I am starting to get kidney pain. Will be getting a second Drs opinion and will have to pay £80 or £90 to see a gp who will give me a half hour consultation. I must look up scleroderma as my mouth is always dry and my eyes are sore in the morning. I did have a high level kidney problem find years ago. My experience with the rheumatologist is not good as he is useless. Will see a dr get my second opinion and take it from there. Thank you for your advice am Wishing you a happy Christmas and a great new year.
Before everything went into meltdown with me, I started to bloat up. That was the body holding onto extra fluids to detoxify. Well that's what I know now. I was also very nauseous wanting to vomit all the time. Again the body's way to try to have a clean out. My blood pressure spiked and found my gp prescribing ever increasing amounts of blood pressure medication. But the thing that was most scary for me at the time was absolutely unbearable headaches concentrated around my eyes which made me feel I was going blind. I was also breathless.
You may not have the same as me. But please do not ignore your symptoms. Things can change rapidly. If you have already had kidney issues please treat this as a potentially very serious warning.
A&E if necessary so you can get checked.
Omg I too are having very severe headaches and also blurred vision. I will make my appointment now after the holidays as just spoke to my Drs surgery and they fobbed me off so I will get to see someone private on the first available appointment. Thank you so much.
I ended up going to an eye hospital as i went for opticians checks and they said all was ok. I then attended moorfields eye hospital, where fortunately an eye doctor was more alert to lupus patients and eye issues possibly surrounding medications given. I remember they alerted the gp and I think my rheumatology team. But I don't think it was really taken seriously by my medical team at that point. Then eventually the kidneys gave out.
You are not imagining things. I wasn't on the health unlocked forum at that point so had limited information streams.
See if you can get a handle on what your kidney function is at the moment. You can get a calculation for egfr. Estimated glomular filtration rate. Roughly that tells you what percent of kidney function you are operating at. Your gp can do tests for this. It starts getting dangerous if you fall below 30%.
You can manage at that if you take care and eat healthily. But if you get to dip too far below that you are moving towards dialysis and a totally new way of life with new obstacles.
The Christmas period when there are many indulgences that are not necessarily the best inputs for the body can make things worse. Please don't ignore it if you get any really serious issues over the holiday period. I know people want to soldier on just a bit longer so they won't upset celebrations. But if your urgent time is now, then you must take heed.
More recently I have been finding out more about organic foods. There is a big price difference. But if you are having all these health concerns and paying for private consultations you may be wise to eat organic wherever you can. Pesticide residues may be adding to your problems.
Thank you so much for all the information you have given me. I am already getting pains in my lower back and in my kidneys. I had a severe kidney infection about 20 years ago and was in hospital for about 5 days. It just came on out of nowhere. My urine has protein in it which I think is Connected to the kidneys. I have haematomas on my liver which are growing and my gallbladder is covered in cysts and needs removing. Because of cutbacks hospitals are just leaving patients till it’s critical rather than operating now before we get that bad. I will go back to my gp to insist they check my kidneys. I think I have the results from the last 2 blood tests so will have a look at that. Am very grateful your so knowledgeable as I only learn these things if I google symptoms. I hope you have a great Christmas and new year. Thanks again.
What did they diagnose you with as I have serious bloating and lots of water retention, more difficultly with my breathing also severe headaches and blurred vision. Drs have fobbed me off and I can’t get an appointment they just say is it an emergency and when I do get to see a dr all I hear now is well your seeing the rheumatologist he should sort this out for you. When I get to see the rheumatologist I am in and out in 5 minutes or less and get nowhere. Then it’s back to square one. Am forced to research my own symptoms and give myself a diagnosis then go back to the Drs to ask is this what’s wrong with me. I have a prolapse which I had to research and diagnose myself before a dr confirming it back to me. At least I have my sense of humour. I hope your feeling much better yourself and are resting over the holidays.
I was diagnosed with lupus when all this was occurring. I gathered a few more labels when I had my renal crisis.
Not meaning to scare you but you do seem to have many symptoms pertaining to potential renal failure. If not treated properly. That is an emergency. You have the potential to die if your kidneys stop.
Are you uk based? You need someone to do some urgent testing for you.
if you are trying to last out until after the festive period, you MUST take extreme care with all the salty offerings as they will make the kidneys work even harder and add to bloating. I am guessing your blood pressure must be really quite high.
you need to understand that if your kidneys start to degrade quickly you will also be at risk of heart issues.
please do not be as cavalier as your medical representatives appear to be.
Thank you so much for letting me know how it all effects me. I can’t brl you mentioned salt as I am really unwell if I have salt and have had to cut it out. If I eat normal Christmas food I am very ill and now I know why. Omg will be at my Drs insisting on an appointment. Thank you so much.
I have Sjögren’s rather than Lupus and, similarly to you, can’t tolerate most of the drugs I’ve tried. I was told by a Sjögren’s expert that, due to lack of secretions, it is very common for Sjögren’s sufferers to be drug intolerant. We can’t easily get rid of toxins.
The only immunesuppressant I have tolerated well is Mycophenolate but I was taken off it in February due to more possible intolerance. In fact it wasn’t the medication at all it was my autonomic nervous system responding badly to a heavy cold (virus).
Since then stage 2 kidney disease seems to have progressed to stage 3 and I’ve had about 6 UTIs and am in constant flare. So I will be asking to retry Mycophenolate at my next Rheumatology appointment in a month’s time.
It can take a long time to find a treatment that suits you but hopefully you will.
Meanwhile happy Christmas and New Year. 😊
Am so Sorry your so unwell. I hope there’s better treatment for us all pretty soon. Do you think the drug intolerance is connected to the organs or is it more a central nervous system thing. I am already detoxing as I am so unwell if I eat the wrong food. The water retention is worrying and the Drs seem clueless and unsupportive. hopefully soon there’s a treatment or a cure for us all. Thanks again for the advice.
I think the drug intolerance for me is due to the viscosity of Sjögren’s and my inability to sweat it out or eliminate drug toxicity properly. I’m waiting to have a gastroscopy with biopsies for Coeliac etc - but once this is over I’m planning to detox but cutting out gluten and going vegetarian. Happy Christmas! 🤶🏻🤞🏽😎
Find yourself a herbalist.i have been so much better since seeing one.the main place is in Exeter ,they will put you on to someone locally to you x
Hello Shorthouse ,
Happy Christmas. Could you detail what sort of herbalist you mean? How did it help you? A Chinese herbalist or something else? I am struggLing to remain positive in general, but always manage to feel better when eating good home cooked simple food with plenty of different vegetables. Steering clear of ready meal as matter of common sense. Too much salt is used.
If you do attend A&E over the period, show them this thread. It might be of use to a potential junior doctor. Just seeing what somebody has experienced previously and how your symptoms might mirror many things.
I know I am being a pain when you want to hang on, but sometimes it's necessary to just face the reality of a situation head on. So that the necessary actions can be put into place.
Anyone with a care for you will understand this.
Please seek help.
'there is good evidence for Hydroxychloroquine in SLE, most people tolerate it well, the coating on Quinoric generic tablet has been reported to cause a laxative effect with some patients, Zentiva is the brand you want patients to be prescribed as it is tolerated better. The way to get around it is to prescribe Hydroxychloroquine sulphate.'' Best wishes Kevin
Hi thank you for taking time out to reply. I will ask can I try zentiva and will see if that’s helps me. Enjoy your Christmas holidays and have a great new year
I've been on hydroxychloroquine for 2 weeks but have developed a widespread macular rash so have been advised by rheumatology to discontinue meds and they will arrange to see me within 2 weeks to review. Hopefully they can find something that I can tolerate. Good to read everyone else's experiences.
Am so sorry to hear the medication isn’t working for you. At least the hospital can now look at other medications for you. Thank you for letting me know as I felt bad about stopping the medication. Hope you get the treatment and better medication that you need. Hope you had a great Christmas and I hope you have a good new year.
Thanks , I still haven't had an appointment through but hopeful there will be something that suits me. Good luck with your treatment too.
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