I’ve had lupus for 4 years now and it’s been managed by hydroxychloroquine and mepacrine and also setraline to boost my moods. At the beginning of summer I had a photosensitive flair, my face looked like I had been bitten by bees and my joints were very painful. Then for 3 weeks we went on holiday to Botswana. Three days in my symptoms all went. And because we were so busy travelling up and down I wasn’t taking my meds regularly. Till I stopped taking them altogether. And I have never felt better. I’ve been back for 2 weeks now and still not taking my meds. I had a check up and my bloods and urine were fine. (Didn’t tell my consultant I wasn’t taking my meds) I want to see what will happen. I feel fine. I even don’t need my glasses for the strain in my eyes that much. The blisters in my mouth are clear too. I’m just not sure if I’m doing the right thing by not taking my meds. It could be suicide.
Not sure if I’m doing the right thing: I’ve had... - LUPUS UK
Not sure if I’m doing the right thing
Hi there. I have had similar periods of time on and off meds. Hydroxichloraquine gave me terribly painful facial hives and made my mouth swell after quite a long time of it being fine. When I stopped it overnight of my own accord the hives and mouth swelling went away the next day after months of trying all sorts of treatments for it. My joints flared up a few days later but if you haven’t experienced pain and are feeling well then I’d say to just enjoy it while it lasts!
My new rheum said that this skin reaction is quite common to Hydroxy and she acknowledged that I am very drug intolerant. For some of us it’s a case of weighing up whether the benefits outweigh the risks with medications. Unless you have kidney or other organ involvement, it’s not black and white re your question about whether this is a “suicidal” thing to do.
If things start to get worse and you flare you can always start them again. Either way you should discuss with your rheum whether to retry them or whether perhaps different meds might help you more. The fact that your eyesight is improving suggests to me that Hydroxy might have been building up toxicity in your body which is one of the risks over time. Either way this needs to be discussed with your doctors.
Thanks for the advice. I’m going to talk to my consultant tomorro so at least we’re on the same page. Was even thinking of moving to Botswana, maybe I’d be cured 😊
Sunlight has a very positive impact on me - and it shows in my dsDNA tests!
Hydroxy is used as a prophylactic - some studies show it keeps SLE quiescent when in remission - but as Twitchytoes says, this has to be balanced with the risks of long-term use. Hope your appt tomorrow goes well! xx
The only med I stopped taking ( in a huff because it didn't seem to do much) was hydroxy. Two months later I very much changed my mind!
I was once on Sertraline ( or satan's brew as I prefer to call it) and it was very, very hard to come off. This doesn't happen to all, but does to some, and what the manufacturers cutely refer to a "discontinuation effects" is really withdrawal.
Every body is very different in the way it reactions of course, but I'm glad you are consulting about coming off the meds.
May I ask what happened 2 months later?
I fell into a flare which would have made me kick myself if I'd been capable.
I hadn't been listening to the "but you are better than you were" remarks made by sons. I think I'd been expecting a miracle from the hydroxy after over a year and it just doesn't work that way - for me, anyway.
Satan's brew FOR SURE!! and I feel trapped in to taking it...I can not get through the withdrawls..
I was told by my consultant it would be very dangerous for me to stop my meds , I am on immunosuppressant meds though as I have organ involvement . Bear in mind that hydroxy takes 3 months to get into your system and so may take a while to leave your system , if you then became ill again you would be starting from scratch and have to wait months for the meds to take effect again .
I've been diagnosed since 4 years. About 1.5yrs ago I thought like you, I feel better now. And the price of the medicine suddenly skyrocketed 5x the normal cost. So I thought I would see how I would do without it. About 5 months ago a flare kickstarted itself and wouldn't let go. My worst flare ever, I mean constant pain, worse in the mornings but it was never gone. Pure exhaustion. After awhile I restarted hydroxy and only now I'm beginning to feel relief.
Thanks. Good to know.
Wow, that is AMAZING!!! I also take Sertraline..I get dreadful withdrawls whenever I try to stop....Moving to Botswana IS the treatment for you!!!! xoxo
🤗 I wish I could move there. It’s a lovely country.
Sertraline withdrawals: well, it's the only med that reminds me if I have forgotten to take it! The "brain zaps" happen very quickly.
If you discontinue you have to do it slowly. You get little electric shocks, usually down the arms in my case, but at the worst just moving an eyeball can set the shocks off. I decreased the dose as per consultant's advice but still had to go smaller and smaller by using a pill cutter, saving the crumbles and dust from the splitting, until I was down to licking my little finger and taking a tiny bit of powder.
Everybody reacts differently but my knowledge is based on my own experiences and that of others on a forum called "Crazy Meds"
Never, ever , will I take it again. I've spent three periods of several months on it and had the same problems with coming off it each time. Remember we call it withdrawal, the pharmaceutical companies call it a discontinuation syndrome 😡
I think I’m lucky I was put on a low dose of setraline so I’m not having any bad withdrawal although my moods are swinging from low to lower. I guess I won’t restart it judging from the experiences I’ve just read.
I’m glad you had a lovely time in Botswana and feel well BUT I would be very very cautious about stopping hydroxy especially after tolerating it ok for so many years.
I did very similar to you, last April went for 3 weeks to Costa Rica, lost the hydroxy on the second day and had an amazing holiday, felt very well. When I got home I felt so well I thought maybe I didn’t need hydroxy anymore but wasn’t quite brave enough to fully stop so started taking it a few times a week . A few weeks later I had the worst lupus flare I’ve ever had - a very brutal attack on my brain and whole nervous system. I’m not saying this to scare you as we are all different but if I could go back and not lose then not take the hydroxy I would. The consultants think it was a combination of not taking hydroxy and the sun exposure that started this flare and it’s been a year of hospitalisations and huge amounts of strong drugs. I’ve gone from years on just hydroxy and occasional steroids to rituximab, hydroxy, methotrexate and my consultant says I am on steroids forever now. I had tried to stop hydroxy in the past and both times felt ok for a month or two then had major flares. It has a long half life so takes time to leave your body so you will still have some protection. I’d definitely speak to your rheumy. It’s so hard as we don’t want to take these drugs - I’m the worst person to comment as even when I’ve been really ill this past year I’ve messed around with reducing the steroids, very much against my rheumys instructions and ended up in hospital with a re-flare.
It’s a difficult decision for all of us - hope you stay in this phase of good health whatever you decide xx
Thanks for the advice. I really wish I didn’t have to take any meds especially when I feel well. It’s kinda like a reminder that no matter what, well or unwell, I’ve still got lupus. A part of me wants to wait and see what happens another wants to be good and take my meds anyway.
Oh I know, I totally understand 🙁 I think some people can definitely reduce their meds but every time I’ve tried I’ve got really ill. The biggest thing I’ve learnt is that being honest with my rheumatologist and getting his support and help in deciding which ones to reduce is the best way to manage it. I think they know we don’t want to have all this medication but also have to balance it with the short and long term impact of side effects and what not taking it might do.
X
That one I really understand! I have bi polar disorder and take my meds meticulously because there is no way I want that sort of crash. It's taken some time to get the right cocktail. I'm certainly not unipolar as a result, but I'm stable enough.
I think it's like having Type1 diabetes, as my niece has had since she was 8. It's a pain to have all that messing around to be "normal" and there is no time of day she's free from it, but she's glad enough for the meds and knowledge.
Hi Mmafox ,
I would advise you to please not keep your consultant in the dark about the fact you are no longer taking your medication. It is your choice whether you want to continue without taking the drugs. If your consultant is aware that your drugs were causing potentially adverse effects then it will improve their knowledge and experience and help them work more closely with you in keeping your lupus under control.
Remember that not all lupus symptoms will present with pain or be visible and therefore it is important to be monitored regularly. Your consultant may not be able to do this effectively if they don't know that you are not currently taking treatment.
Thank you Paul. I definately keep him and my doctor in the know. I agree that the need to know what’s going on so as to best manage my lupus. Thank you for helping me realise that
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