Hydroxychloroquine plus suicidal thoughts

[Daughterwithlupus]

Hi, I'm new here and a concerned mum, my daughter tried taking hydroxy and felt terribly irritable to the point of it changing her personality and stopped taking it. After a 3 month break, on the advice of a doctor (who suggested this was the only appropiate medication for her) she started taking it again, but started off on half the dose. However, this time the side effects were worse and it drove her to the point of suicide and so she stopped taking it again. Has anyone else had a similar experience and maybe tried taking anti-depressants alongside hydroxy to counteract this awful side effect? Also can anyone advise just how much risk my daughter is taking by not taking any medication for her Lupus?

[Jmiller623]

Hi DWL. Welcome!!! This is a hard topic to navigate as having lupus in and of itself can be mentally taxing and depressing. Add on that lupus can also cause neuropsychiatric symptoms and problems makes major depression more difficult to evaluate and treat.

With that being said, hydroxychloroquine is associated with neuropsychiatric adverse events including suicidal ideation (see source attached). It is also associated with hallucinations, psychosis, psychomotor agitation per its safety profile.

pubmed.ncbi.nlm.nih.gov/238...

I think it’s imperative that you notify the prescribing physician about these side effects and ask about alternative treatments in the meantime. I don’t think it’d be a bad idea to seek out a professional mental health provider too. I don’t think adding an antidepressant to counteract the side effect of another drug would be the best idea so I’d discuss that with whoever is managing your daughter’s lupus. There are other treatment options. Hydroxychloroquine is the most commonly prescribed and best tolerated drug that works for a good portion, but not all lupus sufferers. I can’t comment on what progression hydroxychloroquine may or may not prevent in your daughter’s case. I’d think it wise to ask your provider about what else is out there, the side effect profiles of and if your daughter is a candidate for said alternatives. In this case, a multidisciplinary approach is needed to make sure she obtains optimal care.

Hope she finds relief soon. Sending hugs your way. ❤️xx

[Daughterwithlupus in reply to Jmiller623]

Thanks very much for your considered and helpful words Jmiller623. Like so many others on the Lupus UK site my daughter has not come across any brilliantly understanding medical professionals yet. The doctor my daughter saw who prescribed hydroxy on the second ocassion said that there was no suitable alternative even though she had pointed out just how badly she had reacted to it on the first ocassion she took hydroxy. If anyone out there knows of any good Lupus specialist clinics they could recommend in the South-East that would be great?

Look after yourselves and each other y'all, so nice to know there is a supportive group out there for her. xx

[Jmiller623 in reply to Daughterwithlupus]

DWL, Are you in UK or US?

[Daughterwithlupus in reply to Jmiller623]

I'm in UK Jmiller623

[Jmiller623 in reply to Daughterwithlupus]

Ok. Wish I could be of more help. I’m in the US. Ppl like to name UK regions so was just curious. I’m sure some ppl on here can lead you in the right direction to a good provider.

Hope your new year is more fruitful.

[Melba1]

Hello, so sorry to hear your daughter has gone through this, both with lupus and such a frightening reaction to the medication. Awful for you too as a parent.

I think some side effects of medication can reduce over time so if it was a bit of an upset tummy or mild mood changes then sometimes doctors will advise we keep trying a bit longer. But in this case of feeling suicidal then I’d say a definite no, certainly without close medical supervision, especially as you’ve tried twice.

I felt very irritable when I first took hydroxy, so bad I couldn’t be near anyone and remember I went to sit in the middle of a field because I couldn’t tolerate anyone near me. It did get better over time but suicidal feelings are much more serious and need reporting quickly to her doctors. Do you have a good GP? A rheumatology helpline?

There are some very good rheumatologists in the south east. How old is she? I think the UCL adolescent and young people’s rheumatology is very good, Dr Hall at Addenbrooke’s or Prof D’Cruz at Guys both renowned for being excellent (and kind). Unfortunately covid has slowed everything down so new referrals may take longer but a reaction to a drug like she had should mean her current rheumy should urgently review her.

Hydroxy is a good drug for many with lupus but doesn’t suit everyone and there are plenty of other options. It will depend on how serious her lupus is as to whether the potential side effects of the stronger drugs outweigh the positives but often it’s a case of trying a few, trying lifestyle changes etc too to find the right balance for each person. So hard for the young ones but lots of people can have very normal lives once a balance is achieved xx

[Daughterwithlupus in reply to Melba1]

Hi Melba 1, thanks so much for taking the time to send such a detailed reply, I've passed it on to my daughter - she's beyond adolescence, but mums worry about our children whatever age they are and I wanted to dig a bit myself to see if I can help her! xx

[Freckle1000]

Hi. I've had lupus for 36 years - and only recently did I re - try hydroxy too see wether I could tolerate the psychological side effects any better than the first time. No better.

There are a select few people that just don't get on with the drug. It had the effect of blunting my emotions pretty severely - not an emotional range I could live with for very long - totally cutting me off from joy. I have a friend with Rheumatoid Arthritis who had a similar intolerance.

There are so many alternatives to hydroxy - it shouldn't be a problem to find another immunosupressant. I know hydroxy is seen as safer to use in the long term as apposed to drugs like prednisolone - but there are so many other effective immuno suppressants out there now.

Don't give up until you find a Doctor who can help.

[Daughterwithlupus in reply to Freckle1000]

Dear Freckle1000, thanks very much for your reply, I'm sorry to hear you also couldn't tolerate hydroxy, I do hope you have now found an immunosuppressant that works well for you. For the moment my daughter is not taking any meds and is just trying to avoid anxiety, eat well etc in order to avoid any more serious flare-ups - she says that if what she is suffering now is as bad as it gets for her (rashy, swollen, sometimes painful fingers and another skin rash on leg) she might try not taking anything as its worried about taking a strong drug 'for nothing'. I don't know how risky this strategy is, but maybe when she is feeling mentally strong enough she will approach the medical profession again.

[Freckle1000 in reply to Daughterwithlupus]

I understand if she's been suicidal then taking a break from medications would be very sensible. But how long she has a break would have to depend on the severity of her lupus. But if she's been diagnosed with a serious form of SLE. Lupus - there's a chance that without medications, that her internal organs such as kidneys, ( brain ) - could be effected. If this is the case then she must take medications soon or she may die. It's not an illness that can be controlled with a good diet.

A lot of these medications have side effects - and its always pretty horrific when you start a new medication - but it doesnt mean she her body and mind wont eventually adapt to taking them.

eg. I've been on prednisolone since the age of 14 ( now 52 ) and Doctors are having a hard time getting me to reduce the stuff - in big part due to my brain being so well adapted and co- dependent on the stuff - to the point of me needing it to feel normal.

I remember it was horrible when I first took pred- but my body well and truly got used to it over time.

It's just so important that you can find a Dr. who can offer meducations to counteract any side effects - if other medications she tries are problematic.

e.g.. I take prednisolone and mycophenolate. For me both these drugs are - ' uppers ' - so I've been lucky enough to be prescribed Xanax - as a downer - to counteract the effects.

Having a Doctor who can help - with a no nonsense ( and if need be - politically incorrect ) approach to balancing these drugs are so important.

I also take the majority of my meds at night and sleep through the peak of side effects.

Experimentation with timing and mixing of medications is so important.

It's not as grim as she thinks. Try to get her to see it as just a temporary horror patch to go through until things normalize and equalize.

There will be a good medication combo out there for her. It will just take a bit a work - for you and Doctors to find it.

[CecilyParsley]

Hi, you must be so worried. I am so very sorry for your daughter and for you. I only had slight giddiness, nausea and gut upsets for the first few months and otherwise tolerated Hydroxychloroquine very well for 11 years. I had to come off it because a new Rheumatologist doubled my dose and I developed fluid on the back of my eyes. Personally I think if your daughter feels suicidal on it then she should not take it. There are a range of other drugs that her Consultant could prescribe. Antidepressants have their own side effects and I do not believe that trying them in conjunction with the Hydroxychloroquine would help given the severity of the adverse reactions. Some antidepressants cause suicidal ideation. A GP put me on Prozac when I was first unwell and I felt suicidal. I really hope that your daughter gets the help and support she needs to control her Lupus. Xx

[Daughterwithlupus in reply to CecilyParsley]

Thanks so much for your supportive and informative reply CecilyParsley, I hope you are feeling okay and had a good Christmas - wishing you well in 2021.

[Jumper99]

I’m sorry to read that your daughter has struggles with hydroxychloroquine. I took it for a few years with no problems other than stomach trouble. But I came off it as it was not helping me. When I went back on it, I developed mental health problems similar to your daughters. I stopped taking it but then tried again a couple of years later with the same effect. I stopped taking it immediately and I’m now no longer allowed to have it. I’ve also had suicidal thoughts when the doctors put me on an antidepressant called venlafaxine although I was ok on Prozac, but they don’t want me to take antidepressants either now,I think it would be unwise for your daughter to continue to take it. There are other drugs she could try first which I think would be more sensible. I was an adult when it happened to me, I would have been very disturbed by it if I had been younger. Hydroxy is not the only drug available by any means. Talk to your daughters consultant about it, I’m sure they will suggest trying something else.

[Daughterwithlupus in reply to Jumper99]

Hello Jumper99, thanks so much for your reply, since I wrote on the forum I have discussed further with my daughter and as currently she has only mild symptoms, she is hoping by following all the guidance that this will be as bad as it gets and avoid taking any medicines for lupus. I don't know how risky a strategy this is, but my daughter is not that young (nearly 30 - sorry if that didn't come across in my original post!) and so it's her decision. I just can't help being concerned and I felt that the Lupus UK forum would be a good place for me to try and find out more of what's going on for her and maybe gain some wisdom from other lupus sufferers experiences, so thanks for sharing, I really appreciate it.

[StormySea]

Hi, sorry to hear about your daughter, that’s really tough. I can’t comment on the hydroxy, but like your daughter after a few years of struggling, I have only recently had my Lupus diagnosis confirmed and have had a real battle to get the right support through the NHS. There are some very good NHS rheumatologists but not always easy to find it seems.I live in the SE too and after some difficult appointments and no clear way forward or treatment plan, I eventually decided to go private and was so glad I did because I found Dr Kaul at the Lupus unit of London Bridge Hospital. He is extremely supportive, kind, very thorough and he really listens. The great thing is that after an initial private appointment I have now been referred to him through the NHS at St George’s hospital so if you wanted to get a referral, your daughter could see him there.

Wherever you end up going, I know what a difference it makes to find the right support so I truly hope that your daughter finds the person who is right for her.

[Daughterwithlupus in reply to StormySea]

Thanks StormySea for your practical recommendations, I really appreciate and have passed on to my daughter so if/when she is ready to seek further help again she has some ideas of who to try - we too are in the SE, so really helpful thanks.

[StormySea in reply to Daughterwithlupus]

My pleasure, it’s great to have this forum to be able to share info and experience, I haven’t been on it long but have found it to be a real blessing and have learned so much. Take care and all the best for you and your daughter.

[Cas70]

Try getting her to Guys Hospital - you have the right to TELL your doctor you want a referral. I took a friend to her doctor and she did referral on line. Guys then sorted her out in one long session. There are alternative to Hydroxychloroquine but most GPs are very ill educated. People on this website know more. I am the other end of life to your daughter and was told by all the various disbelieving docs that it was my age!! I was put on an anxiety pill too and that helped, my husband was ill too so added pressure. Just message any one of us on here. Keep plugging for a referral - under the Patient’s Charter they must do it for you and you choose where you go. I have a Consultant in Dorking and there is a very good one in Brighton. So help is there. Good luck Cas

[Daughterwithlupus in reply to Cas70]

Thanks Cas, I really appreciate you taking the time to reply, it does come across very clearly on this forum just how difficult it is to access proper help for lupus. It must be so frustrating to not be able to get the joined-up help lupus sufferers so clearly need. I am very grateful to have found Lupus UK as a means of sharing and support even though it is not actually me who is suffering. My daughter told me it was a great resource and I'm sure she will take up on some of the points/recommendations raised from the helpful replies I have received when she feels mentally robust enough to go and seek help again. Happy New Year Cas, here's to a better 2021 for everyone!

[Cas70 in reply to Daughterwithlupus]

This is a very lonely chronic illness - you could look for a support group. Call Lupus UK for one in your area - joining one did me so much good. There are such benefits, I have found lots of friends and tips for alleviating symptoms. Haven’t felt alone since. Get her to take Vit D and B12 every day - lifts the spirits . BetterLife Spray versions from H&Barrett or Amazon are the best. Happy New Year 🥳

[Daughterwithlupus]

Thanks for your reply Ickybicky, much appreciated.🙂