So glad I made the decision myself to come off the lupus medication hydroxochloroquine after having dangerous side effects of all over rash, insomnia, fast beating heart rate, sore throat, swollen lips, numb face and terrible nausea and vertigo. and wanted to know if anyone found prednisone steroids better managed their symptoms. I only discovered this after taking them for 5 days and the results were amazing. I really struggled with the medication as the rheumatologist put me on 2 tablets a day but after severe symptoms he suggested one a day then when one a day still made me very ill I stopped taking them and then was started again on them one every 2 days and was still very ill. I was treated like a naughty child and told off by a rheumatologist nurse who went nuts when I said they made me ill couldn’t and wouldn’t take them. I asked could I just take prednisone as I had no side effects and my symptoms was so much more manageable after taking just the steroids. he suggested being on this hydroxochloroquine medication would help my heart and steroids were not an option So I persevered but got very ill and almost collapsed at hospital where I was so bad I had to get a taxi home and my son almost had to call an ambulance. I tried getting a dr to call out to see me and do a home visit but after being 86th in the que and being on the phone for over an hour was told it was emergency only today and I couldn’t see a dr let alone get one out to see me. I had to take an antibiotic and after 2 tablets had a mild anyphalactic shock my lips swelled out I couldn’t breath I panicked and rang a Drs surgery and was told to go to the pound shop and get some antihistomines. I finally went to a pharmacist who said I should call an ambulance if I got worse and recommended a course of antihistamines. I took them on the spot went home and was very unwell. A few days later I got worse was given more antibiotics and after one tablet was even more unwell. At that point I stopped all the tablets after a few days my symptoms calmed down. I tried ringing my rheumatologist and gave up trying to track someone down. I will cure myself with the help of dr google and what I learn on this site. If I can’t get prednisone from my consultation next month I will be telling them I will be ordering them myself from abroad hoping that will shock them into giving me what actually works to make me well. I had to laugh when I read the leaflets they had given me on the hydroxochloroquine medication and all my serious side effects that I had were there in black and white. What is wrong with the medical profession their stupidity their arrogance and unwillingness to listen to reason made me seriously ill. Thank the lord I had the common sense to realise I needed to come off the tablets. No wonder people are so ill the medical professionals just don’t listen nor do they care. I am yet to find a competent one. They don’t even give you a leaflet on lupus no guides and all that happens is you go see a rheumatologist they give you five minutes of their precious time give you the medication then send you on your merry way then they get you back in again after about 3 months and the cycle starts all over again. If ever I could afford private care maybe then and only then would I possibly get better care. Am so fed up of Drs second guessing at a diagnosis and ignoring symptoms and they just basically just leave you to it. Never mind one day in the future there’s hope I may actually find a decent health care professional that can actually provide adequate care.
Has anyone had problems with the hydroxochloroqui... - LUPUS UK
Has anyone had problems with the hydroxochloroquine and severe side effects and find steroids instead work better on their lupus symptoms.
While some people told that hydroxochloroquine helped them to relieve lupus symptoms, I experience hair loss and dry eyes.
Am so sorry it’s effecting your hair amd causing dry eyes. It’s awful as I have the same symptoms. Yes my rheumatologist told me most people can tolerate it but they seemed to not want to say anyone had problems with it. It’s a bit of a dilemma you clearly need something that works and I hope you find it. If I find anything that helps I will let you know. Have a great week and take care. Elena.
highly appreciate your kindness. Some people recommended Biotin and Lupufree supplements to deal with hair loss and other side effects of lupus medications, I was a little hesitant between them at first, but now everything has well changed
Thanks Jennifer for letting me know as I will definitely try a more natural vitamin and herbal approach that help me with my lupus and hair loss problems. I will definitely try the vitamins you recommend as my hairs now so thin I am wearing wigs. Have a great day. Cheers. Elena
No good for me, extremely sore eyes and tummy problems
I’m gutted though as people say they are really good x
Hi maybe something else can be found that makes you well. Maybe find out from the specialists what are your options. They can’t just leave you without support even though that’s exactly what happens. Am doing research on alternatives and will let you know. If you haven’t tried cortisone tablets ask about taking them as I have no side effects taking them and they do work on helping my lupus symptoms. Have a great week. Take care. Elena
Many folks here can take hydroxy successfully, but it's good to listen to your body especially allergic reactions which you were experiencing... One of our group members almost died from taking hydroxy & ended up on a burns unit fighting for her life. She later battled with the company to include her reaction on the guidance sheet that accompany medicine.
I have had to go private to get the time needed to get a better treatment plan...it was well worth the money, time & energy & not as expensive as one thinks here (if UK) as often they work for NHS as well .... feel better soon. ML
Hi thank you for your reply. I find it interesting you mentioned about a burns unit as my skin felt like it was burning up amd on fire and my skin turned red the heat was incredible it was in patches all over my body but luckily it has now gone after a few days of no medication. This was the fourth attempt to restart the medication after side effect after side effect. By attempt 4 my body went crazy have never felt as unwell. What a shame I can’t tolerate it. I hope you don’t have any side effects and are keeping well. Thank you for sharing this information with me. Have a great day. Take care. Elena.
I had a similar (but not nearly as severe reaction) to hydroxyl as you - happily I tapered up to 400mg over two weeks otherwise I would have had a heart attack...I had severe palpitations within hours of the second 200mg in a day
Likewise, my rheumy said I HAD to take it...tried 200mg/day then 100mg/day ending up the same way, because it stays in your body for months, it has a half-life of 6-9 months. No advice, no helpline, no GP support, and rheumy said there is no Shared Care Agreement because no-one has side effects........
Hydroxy DOES provide protection for the heart and against atherosclerosis, but some folks just can't tolerate it
The next drug would be an immunosuppressant according to the guideline*.....after three years of letter-writing and an hour with my rheumy's line manager, I have a brief care plan (I've been 'mild' so far) with Methotrexate noted as the next treatment when needed....I insisted the rheumy follow the guideline
I don't know about steroids, but hope your next appt goes well...take the treatment options part of the guideline with you..be well xxx
*academic.oup.com/rheumatolo...
Hi thank you so much for your reply. Omg I can’t believe your rheumatologist said no one has side effects when clearly that’s not true. Thanks for your advice and I will have to tackle the rheumatologist and explain the severity of the reactions. What’s the point of taking medication that makes you more ill god these people are so stupid. Please forgive the rant it’s just frustrating and like you said there’s no support sadly it’s just do as your told and take the pills. I think it’s whatever makes it easier for them and not what’s best for us. I will look at the medication you have mentioned. Maybe they could try me on that or something else. It’s something I will look into and will do further research. At least today I feel better my skins gone back to normal and the side effects have calmed down. Phew. Have a great day and take care. Elena. xx
Rant away! This the place to come! That's it exactly, "just do a your told"! Dimwit rheumy was going to put me on Azathioprine because my dsDNA increased to make HIM feel better - first time I politely declined, second time I pointed out that I didn't have the symptoms to justify it, idiot.....it's all written out in the guideline*, what they should do ie specific meds to match the disease severity...it's not that tricky unless it gets really complicated......I'm training up my rheumy, LOL! xxx
*Table 7 : academic.oup.com/rheumatolo...
Omg we could do a much better job than these incompetent overpaid and under qualified medical professionals. 😂. Yes I agree we need to read up ourselves just so we keep up with their ******** and them trying to pull the wool over our eyes. They really hate it if I speak up and catch them out. It’s like they are God’s and we are just there to smile, nod and obey them. Plus they want us to agree to anything and everything they say and how irritating is that. 😆. This site is so good and the people so nice supportive and helpful it’s the only thing that’s kept me sane. I never even thought about guidelines I must look that up. What is laughable is that they just have a one size fits all which is not good for us if we can’t fit into that mould. Grrrrrr. Never mind if I can speak to my rheumatologist next month and start upping my game by using medical words and will start to use the knowledge I have gained from this site. I will read up on everything and take my son with me as back up. Must remember to take a note pad that should throw them off balance and I will let you know how it goes. He he. 😂. Take care and thanks again for your advice and support. Elena.
Go for it...also write down a few key questions you want to ask.. A list help trigger the direction you need to take.. I do an A4 with current symptoms, meds & diagnoses & give them a copy to get them focus on me & what I need to ask... Backup support from family/friends is very beneficial....ml
yes I will do that and am sure it will go well as I usually just go say nothing and go. Yes will make them focus on me and go with my ticklist of questions. Thanks again for your help and advice. Cheers. Elena
My last apt with rheumy was excellent (he knew I'd spent an hour with his manager..): he listened, he took on board my comments, he spoke about 'we' - that really threw me, till I realised he meant him and ME - looked for agreement for The Plan......in total contrast to previous appointments, that could have gone ahead without me there, I was a non-person!
It's a terrible thing, having to prep for appts, but well worth while (it only took me three years to have a civilised consultation...)
Wishing you all the very best for yours! xxx
How awful that it took over 3 years for the medical Profession to give you the time and effort you should have had in the first place. It’s simply shocking. I too feel I am not heard or seen and your words are just so accurate. I too feel there’s no point I am there maybe I need to speak up and get hold of my rheumatologist’s manager to see how it can change for me. 😂. Well done it’s really given me confidence things can get better. I am not good at confrontation as it’s never gone well for me but I need to stand up for myself. I have already write down all the questions so I am hoping we will finally get somewhere. Thank you so much for your support , advice and tips on how to get the treatment we all deserve. Have a great day and take care. Elena. I will let you know how it goes. 😀
I’ve tried taking hydroxochloroquine 3 times over a two week period each time and had to stop cause it was killing me! I had all the side effects you mention and terrible cold sores over my nose and mouth that took ages to go. They keep insisting I should give it a longer try and don’t offer me any other alternative.
Am just so sorry it made you so ill and they insisted you take it when it clearly made you so unwell. There must be more medication that works better or maybe another approach to illness. I cannot believe they couldn’t offer you anything else. It may be because if this stuff makes you ill the other stuff which is probably stronger would make you worse. My consultant told me they wasn’t looking at any other medication as I have a long history of allergic reactions and I was told I probably couldn’t tolerate anything stronger so it’s back to square one. I did find going on a radical diet change helped but it was so hard to stick to. I really hope you get something that helps you. Have you ever tried prednisone as it works wonders for me with no side effects. Maybe they would let you try that. I hope you get better soon and find something that helps you. Have a great week. Elena.
I wish it was like that but I’m very disappointed with the “non” treatment whatsoever I am receiving. In the last four years since I moved here all they do is bloods and send me a letter telling me it’s the same. None of my issues are being addressed neither have I been referred to have them checked. I’m beginning to think they are hopping to get a negative blood result to discharge me but can’t as they are too high and unmistakably positive Sorry for the rant 🙄 needed to vent!
Omg that’s awful. What about getting all your medical records such as your gps and hospital ones too to store away. Plus if you could go see a dr or specialist privately. I had to pay £220 to see a rheumatologist at spire hospital in methley Park and was told that I could see a dr for £90. They give you 45 minutes with a rheumatologist and 30 minutes with the dr. It’s shocking your left as auto immune disease does need treatment. No wonder you want to vent. This is what I had to face over the last few years but because I have suddenly got much worse they are forced to do something not that any of it is helpful. Grrrrr. I would write down all your symptoms and keep a diary and give one copy to your Drs and another to your specialist and ask what are they going to do. It’s a sorry state of affairs when your denied much needed medical care when your clearly so unwell. I went to see an alternative therapist and he told me I needed to radically change my diet which does help. If I find anything that works I will let you know. Also if you could try prednisone as it works wonders for me but they won’t let me have it long term. Have a great week and take care. Elena
Thanks. I will do that 🙃. I did not know we could access them till I read it here. At the moment I’m waiting for this year’s letter and this time I am going to reply to it and send a copy to my GP. 😬
I hope it all goes well for you and your feeling much better soon have a great week. Elena
I was at the hospital today and said how sore my eyes were to the point everyone was asking what is wrong with my eyes. Then I started to get a small blister and my kids become concerned with the state of my eyes. I actually went to bed so they didn’t have to see them.
Was told today that the side affect wasn’t that bad and to start again 😳
Hi Lisa, What you have described sounds like it could be Fuchs Dystrophy. I have it and my mom does too. It is fairly rare (so far) and can involve actual small blisters on your cornea. An eye doctor can see it without too much effort IF you ask them to look!
Tracy (from Washington state)
Omg can’t believe you too not well with that medication. Surely medical staff must know not everyone is suited to these tablets and it’s not a one size fits all approach. Can’t believe they expect you to take it when it makes you so ill. I too had problems with my eyes and still do. Could it perhaps be linked with lupus, Sjögrens or schlerederma. I would do more research on these conditions and ask your health care professionals what’s causing it. I hope it calms down and you get answers the only thing that’s helped me has been cutting out sugar, dairy, wheat as I was allergic to anything and everything. I had to get rid of anything that’s not natural as it made me so ill. Maybe there is something that could be making your eyes so sore. I hope it all calms down and you get better soon. Have a look on you tube on natural cures for lupus. There’s no cures but maybe an anti inflammatory diet may calm the symptoms down. I cheated had ice cream last week and a chocolate bar and by the end of the day my eyes were so sore, itchy and weepy. Let me know if anything helps you. Have a great week and take care. Elena.
Omg and Drs expect us to keep taking the toxic medication. It sounds like you had some kind of anythalactic shock which is quite dangerous. It’s what happened to me with 2 anti biotic tablets earlier this month. I hope they have you on better medication and your now feeling much better. The problem is finding what tablets which can help you and which ones don’t amd clearly you take anything that makes you that ill. At least I now know it’s not just me having this issue when I see my rheumatologist next month. I hope your having a great week and thanks again for yoir reply. Take care. Elena
Did your rheumatologist tell you that you must have your vision checked while taking that medication? I experienced vision loss after 6 months of taking it.
Omg vision loss after just 6 months what the hell are in those tablets. That’s just awful. Yes I had vision problems I had blurred sight but I thought it was my migraines it’s now all calmed down as I am refused to take them tablets ever again. What a carry on. I hope they found you something else that worked. The only thing that helped me was the prednisone steroids which worked wonders for my lupus but after 5 days usage as I had a chest infection they stopped them and won’t give me anymore. What a carry on. Thanks for your reply. Have a great week and take care. Elena
I don’t think he ever mentioned it but my optician did as his sister has lupus and has had problems with her sight and he said I need yearly checks and that’s just reminded me I need another test. I hope you still don’t have the problems with your sight. Elena.
Thanks carol and yes I agree diet is a way of controlling the lupus. Cheers. Elena
Sorry you are going through all this. I experienced horrible side effects on Hydroxy. Bowel bleeding and really painful joints. My consultant said that hydroxy doesn't cause bleeding but it stopped as soon as I stopped taking it. I ended up having to see a gastroenterologist urgently due to the amount of blood I was losing. Steroids work really well for me but the side effects get worse over time for me (high blood sugar). I got told off too re: the hydroxy so know how you feel! The longer I experience Lupus the more I want to do things 'my way'. You're right about one size fits all not working. Good luck moving fwd. 
Thank you for your reply. Yes the tablets do cause bleeding as my gums started to bleed heavily and my skin started to change colour amongst a further dozen side effects. it was pretty scary heavens knows what is in them pills. I had to stop taking them hope your feeling much better and thanks for your reply. It makes me realise it’s not just me that is effected by the medication and I will be telling my rheumatologist when I see him 😂. Have a great week and take care. Elena.
If we think about it, this medication is used to treat certain forms of sensitive malaria suppressing the immune response to the illness and at some point they realised the benefit in patients with autoimmune conditions.
I'm sorry if I scared you. When I stopped taking it, the vision problems reversed. I found that the best way to treat Lupus is with an antiinflammatory diet and herbal supplements called adaptogens. Take care of yourself!
Carol
I have to agree! I’m due to start hydro in a month and I’m beginning to get really nervous! I’ve since changed my diet to an anti-inflammatory one and I feel so much better! I’ve also added supplements like COD liver oil, glusemine (spelt incorrectly) and vit C, multi vit. Could just be that I have came out of a flare but it’s the notiable difference in fatigue and pain. I’m positive that that just isn’t coincidence!
Hi Angie245 ,
Please don't be nervous! It is really quite uncommon to experience significant adverse effects from hydroxychloroquine. It is the safest treatment available for lupus and in most cases is very effective at helping with symptoms whilst causing few or no side effects.
I'm really glad that your symptoms have improved after your change of diet and supplements. A healthy lifestyle is very important and will play an important role in the management of your disease. I would encourage you to discuss these supplements with your doctor though. Many of them can have adverse effects in some conditions or interact with other medications so you need to be careful.
Thank you! I didn’t realise this! I have quite a long appointment with the specialist nurse so I’ll discuss all of this with her. As always your reply’s are helpful and informative. x
I have just read your profile. Interesting. Alternative health practitioners exist in the UK, but I feel that the US medical model makes it easier to practice successfully there. As long as you don't become known for approaches that threaten the big pharma model too greatly.
I am sure you must be aware of Dr Terry Wahls. Conventionally trained. Diagnosed with MS. Trusted conventional approaches until they said they could no longer help.
Circumstances caused her to read more widely and she adopted nutritional approaches which finally started to help reverse the worst of her condition. She retrained as a functional doctor after realising the power of a different paradigm.
Good luck for the future.
Thank you so much for your post as I haven’t heard of dr terry. Yes I have to keep quiet about alternatives when speaking with Drs as they really don’t like or trust them. I got a lecture once and a ticking off which to this day still hurts. Now with a life long fear and loathing of all thinks medical I live by smiling sweetly and nodding yes dr no dr with whatever they say. Which sadly is what they prefer but of no help to me if I can’t be open and honest without being scolded or told off. One lady dr said it’s because alternative is not a medical approach which they approve of. I asked them what if it totally works for me with no side effects. She just ignored that completely it’s like being in 2 enemy camps. The only dr who agreed with me was a lovely Chinese lady dr who was very supportive and interested in the alternative approach as she said her many of her family were living an alternative lifestyle and she was the only dr in her family and she was always so knowledgeable and happy to see me and always gave me more time but sadly she was gone after a few months. I did look at Louise hays approach to illness which was quite interesting so am now concentrating on both my mental and physical health. Had a better 2 days eaten really well spent quality time with my son and my husband is taking me away for a few days so I can rest and have a convalescence weekend to get well. Am now feeling more mentally positive and am just on my way to see a councillor this morning to help me. Who knows I might be a whole new person soon. Thanks again for all your help and support and I hope you have a great day. Take care. Elena.
You may not have heard of codex alimentarius either. It sounds a good idea. It's about developing safe standards for food and vitamins etc. But in actuality it is removing choices from those who have researched alternative approaches as it's easy to have a label applied that something is unsafe and it then becomes impossible to get hold of.
Most small outlets cannot afford the vast sums needed to complete the testing standards, so small distributors go to the wall while the multi billion pharma industry rolls on.
Honestly sometimes ignorance is bliss. I get enormously annoyed these days when finding out about potentially really successful treatments for one thing or another that will never be able to complete the necessary testing standards so they can't be sold as a treatment aid.
Anyone who flouts the rules can be imprisoned.
The Holistic and Alternative Health Practitioners in the US are accepted depending on the state you reside in. Many states put strict guidelines on where and how we can practice. I live in a state that has loose guidelines, but if you're familiar with the US, it's the Deep South. An area known for deep frying everything, Bar-B-Que pork, and lots of creamy, sugary desserts. The residents have lived here for generations and are reluctant to change. I believe that when the 50 states were ranked by how healthy they are, my state ranked 49. I have an uphill battle, but I love a challenge!
I'm well aware of Dr. Terry Wahls. She was going through her improvements at the same time that I was. Her protocol is the Paleo Diet and MS specific exercises. I created my own antiinflammatory diet that greatly improved my Progressive Relapsing MS. I began to do yoga and meditation, something I continue to do everyday.
I think I touched on everything. Best wishes to you.
Kindly,
Carol
That’s great news for you and yes I agree allergies and auto immune disease goes hand in hand. Think I will go back to my special healthy diet as least there’s no nasty side effects. Cheers. Elena
Hi Hidden ,
I'm really sorry to hear that you had such a bad reaction to the hydroxychloroquine tablets and that your medical team didn't take your report of side effects seriously. You are unlucky to not be able to tolerate this medication because it can be very effective and well tolerated in most people with lupus. There are of course some people who experience severe side effects and have to try different treatments though.
I think that many people with lupus would agree that steroids are very effective at helping manage their symptoms. They are a life-saving treatment in some cases and can make a significant difference. They are not a safe long-term solution though. Studies have shown that long-term doses above 5mg per day increase the risk of all-cause mortality. In addition to symptoms such as weight gain, in the long term they can affect your cardiovascular health, risk of diabetes and osteoporosis.
If you are unsatisfied with your current rheumatology team and feel that they are not experienced enough with lupus, then it may be worth asking your GP to refer you to a lupus specialist. If you let me know whereabouts in the country you are based then I can send you information about any lupus specialists we may know in your area.
Hi Paul thank you so much for the advice as my team are useless and are as much use as a chocolate fire guard. I am left with no support line, no advice or help. It’s just take the tablets come back in 2/3 months time where I will get 5 minutes of their time. I could scream as I am just left and ignored and when I speak up for myself it’s just a reply of do as your told and take the medication so bye bye. I live in Castleford which is the wakefield area of West Yorkshire. I am so unwell with multiple symptoms and illnesses on top of lupus fibromyalgia and CFS amongst the 2 dozen other ailments. Am at a loss as what to do as my Drs mostly just say your under a rheumatologist at the hospital so won’t see me or tell me it’s emergencies only when I try and book so basically I am on my own looking after myself. thank you so much. Have a great week and take care. Elena.
Hi Hidden ,
I am sorry to hear that you are left with no support. If you are looking for a lupus specialist rheumatology service, the team at Chapel Allerton Hospital in Leeds are excellent. Dr Ed Vital is an excellent lupus specialist if you are able to get referred to him.
In a lot of cases GPs are not really experienced with the treatment and management of lupus and they rely more on the expertise of the specialists. You shouldn't be left to manage by yourself though.
Thank you so much for the information I am going to see my rheumatologist next month with a whole list of questions and if they can’t step up and provide better care then I am seeing my dr and will request a referral to dr Ed vital. Thanks Paul for the advice that you gave me and for helping everyone on this site. Your doing such a great job. Have a great day. Cheers. Elena. 😀
Sorry to hear of all the problems you have had with hydroxy. I was on it and many other drugs. A complete polypharmacy several years back following my renal crisis and until my sudden hearing loss.
The sudden hearing loss got me really interested in just what was being prescribed and just what effects may come with the drugs.
But it took me some years before I read about the benefits of an anti inflammatory diet and potential benefits to taking certain vitamins.
I felt that if that was a good route to take then all the doctors would be proposing it, and they weren't. In fact whenever I brought up the subject of vitamins at my consultations I remember one of my highly regarded consultants completely dismissing entirely any potential positive benefits of vitamins.
These reactions held me back from trying many things that I have since found useful. I don't believe that the same consultant has changed his stance on vitamins but I have come to rely on some.
Definitely an anti inflammatory diet. It's no good eating loads of inflammation inducing foods and hoping that a drug or vitamin will make it all better.
I think the lupus journey is a learning process. You definitely need to get used to listening to your own body and heeding what it is telling you.
It's like The Emperor's New Clothes. If somebody is constantly telling you that black is white, how long is it until you start to say, "Hey that's not how it works for me".
Consultants spend MANY years in training, but not all of them actually suffer with the same symptoms. A good way to maybe start a dialogue with a consultant is to keep notes. Consultants love evidence based info. You need to speak in a dialect they are familiar with. A good consultant will often listen if it is in a language they are familiar with. Then hopefully you will be working as a team. And a win win will ensue.
yes I totally agree about vitamins and diet I think it’s the only thing keeping me alive. I am hugely allergic sensitive or intolerant of most foods and medicines and can’t live like a normal person. The hospital staff won’t listen to me and the alternative therapist I have been seeing for almost 20 years recognised amd disgmosed each and every illness I had long before the Drs finally had to admit I was ill and gave me a diagnosis. I have never seen such a load of incompetence, misinformed and misguided medical care in my life. All of them totally useless. If it wasn’t for my alternative therapist I really don’t think I would be here at all. I will try your approach as you have made several valid points. Thanks again for your support, help and guidance as it’s invaluable and I will keep you all update. Have a great evening and take care. Cheers. Elena
Well I’ve just been told to carry on the hydroQ, Even though I was getting a blistered type rash and extremely sore eyes. I feel like I’m being used for a drug test that I don’t know about 🙄.
The person I spoke to on the phone sounded so uninterested. I’m starting to think these people are well trained in how to get rid of a patient quickly!!!!!
kali9
never ending Zentiva!
Newly diagnosed
My Personal Experience
Has anyone had any kidney problems since being diagnosed with Lupus?
