I really hope someone can advise me, my partner has recently been diagnosed with RA and he is on 15mg MXT weekly and 200mg of hydroxychloroquine daily, his blood count was 184 3 mths ago and is now 136 so the medication seems to be working, my concern is this since taking the medication he has had terrible mood swings and he is very quick to anger even over the smallest of things. He has started talking about no point being alive and things like that. Has anyone else had the same sort of symptoms with these medications.
Any help would be really appreciated.
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Lizzie411975
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I think most do at some point it's difficult to come to terms with chronic disease and medication affects people differently he should mention this to the rheumatologist nurse
I agree with Junebee, it is never easy to deal with chronic disease, it was so painful. At my peak of suffering, I had the idea to commit suicide because I could not bear the pain. However, when I thought of my son who was just in his first year in the college, I told myself that I wanted to stand up again.
I believe it is not the medication that causes his mood change, it is the chronic pain that he could not bear at this moment. Wait until the medication to start working, he will not in such a pain then his mood should be better. The medication takes about 12 to 16 weeks to work, therefore just help him out at this very moment and to assure him that you will be there to go through with him.
Look at me today after 2 years of suffering, I am back to quite a normal life now. I am in remission at the moment and I try to look into the natural way to maintain the remission so that I can be off the medication one day.
Yes i have felt like that at times and even now i have felt like it when i think i will have to spend the rest of my life in pain. On the very badf days i have had i have said i wish i was dead,until it was pointed out to me how upsetting my family was about it. I had to explain to them that i was going to die or do anything about it,but it was just the best way i could think to explain how i was feeling,xxxx
Not unusual that seratonin levels are low in RA. 5htp as a suppliment has helped many with mood issues. Hope he is taking his folic acid with mtx. Good luck.
I agree with all the replies above but just in case it's helpful, I've just listed a couple of helpful links on another post healthunlocked.com/nras/pos... on the emotional impact of RA and its effect on the family which might be helpful to read. Maybe when there is a suitable time, perhaps share with your partner too.
If you need to talk anything through, do contact our Helpline team - 0800 298 7650 or email helpline@nras.org.uk
Hopefully the medication will start working for him soon and his mood swings improve however do contact your rheumatology team or GP if you are concerned at all.
It's a long haul disease and doesn't always do what you expect. I was in remission for quite a while until an inexperienced doctor changed my meds. I'm getting back slowly but have had quite bad depression which I haven't discussed here. There are meditation websites, headspace, and I find that just getting out of the house once a day helps to lift my mood. But if he's low and willing to ask for help that is a good idea.
Hi Lizzie, yes I started with depression when I started Methotrexate, it was awful!! I was 44, never ever been sick, never had a day off work then boom, RA. I started Methotrexate and within weeks I was so low and had never ever felt like this before, I was able to see my rheumatologist and he agreed that this drug can cause some people to feel like I did. I stopped it and was given alternatives and that black cloud lifted, Methotrexate is a miracle drug for some, not me. I also think that RA can effect men differently, for me I was, am the main provider and a dad to 4 girls, the thought of that being taken away from me was devastating and knocked my confidence. That said, I'm not doing to bad now, my meds are working and I'm almost back to my old self and really doing my best to keep it that way (despite being in bed at the moment with my back in spasm!) Make sure you're other half speaks to the Drs and actually tells them how he's feeling, its a lot to take on and the meds can definitely effect some of us!!
Hope thinks work out.
Hello Lizzie
I really feel for you. My hubby was diagnosed with RA at the beginning of the year, and a few months later he was in an awful lot of pain, I had to do everything for him. I don't think the medication is to blame for how your partner feels. My hubby only started on a low dose of Sulfasazaline, then a low dose of Methotrexate added to this. When the pain kicked in, hubby was at an all low time point and like your partner didn't see the point in living like this. Very upsetting so my heart goes out to you. His RA is now becoming more "manageable" but he still has bad days. I feel low myself at times, it's so hard listening to hubby effing and jeffing when he can't do the most basic tasks, sure you feel the same. Then you have to try and put a positive spin on it for them, I say things like well at least you're not as bad as you were a few months ago, etc etc, but i can feel angry inwardly, it's draining being everything to everyone. Always having to have a smile on your face for other family members, work etc!!
Please believe me, the good days are outweighing the bad days, and use this site as much as possible for moral support for yourself. I don't know what I would have done without this site, it's pulled me through many a dark day, and I hope it will you too. Equally I read out inspiring blogs, positive stories, and these cheer hubby up. He won't log onto this site himself, so I do.
There are very clear links between RA and low mood/depression and it is more associated with the disease rather than a side effect of the medication. I would strongly recommend you give the NRAS Helpline a call on 0800 298 7650 as there is a great deal of information they can share with you. Also you may find the NRAS booklet " The impact RA has on Emotions, relationships and sexuality" useful as there is a whole section in there about why someone with RA may feel the way they feel. This and all NRAS information booklets are free to order via nras.org.uk/publications or you can call 0845 458 3969 to order over the phone.
Hang in there Lizzie- once the disease is under control his mood should also improve but it will also be worth asking if the rheumatology nurse or consultant can refer him to some "talking therapies" or counselling. If not ask your GP for some support or signposting.
Do get in touch - we are here to help every step of the way.
Hello there. I can tell from your post that you are already a help to your other half and will be a great support to him going forward. Sometimes, when trying to help with someone else's depression it's easy to feel helpless.
While a lot of what had been said is true - it is hard to face up to a life that's going to be dominated by pain and fatigue, I wouldn't underestimate the effect that certain drugs can have on mood and the capacity to mentally cope with life. I, myself am not a depressed individual by nature, but I have had some pretty dark periods as a result of the drugs I have been on. I even had an increase in depression when I started taking folic acid but that passed of after a week or so. However the clearest culprit was sulfasalazine. The difference when I stopped taking it was instant and such a relief. It was as if someone had switched the light back on. I went from lethargic, gloomy and seeing no pointin life to buoyant and cheerful in the space of 48hrs.
It occurs to me too, that if your husband is aware that low mood and depression are recognised side effects of some of the RA drugs, it might be easier for him to talk to the nurse or doctor about how he is feeling: and that could led to a change in medication or a referral to someone to talk through how he feels about the whole situation.
Hi Lizzie. You don't say how long your partner has been on meds. I think at the start I did used to have periods of feeling down and many times in tears with the pain. I too was on mxt and hydroxy. I haven't suffered with depression as such but I know a lot of people do. I stopped hydroxy after a year or two and only take mxt now and have not suffered with bouts of feeling down for many years. I don't know if it is the disease or the meds that cause depression. I do hope your partner improves.
Thank you so much everyone who have offered advice and shared your own experiences, he has only been on MXT 3mths and hydro about 3 weeks. A lot of people when I've researched have folic acid everyday except MXT day but my partner is only having it on a sat when he takes his MXT on a Wednesday. Thinking maybe increasing that might help him. I have tried talking to him about seeing his GP for either counselling or tablets but he is not having any of it. He won't talk to someone and he keeps saying his on enough tablets already. He is opening up more to me about how he feels but it's baby steps. It's just so frustrating sometimes when I'm having a bad day I feel like j can't share with my partner because I don't want to bring him down even more so I'm keeping everything in at the minute.
Yes he is on prednisone, they gave him that before he started on RA treatment. He was on 15mg per day and has been tapering off them, reducing the dose by 2.5mg every 2 weeks. From tomorrow he is on 7.5... He says he is starting to feel the pain back in his wrist and ankle and I'm wondering if the prednisone is still acting as a pain killer and obviously becoming less effective as the dose is dropping
You have had lots of good advice already on this thread, but some things bear repeating.
Firstly I was became ill at age 30 with what turned out to be (or at least is diagnosed as) RA. It ripped my life apart for many years, and I went from being someone 'that was never ill' and a bit of a party animal to a depressed recluse almost overnight.
I'm exaggerating a bit about the recluse, but you get the idea. It's a shock and it takes a lot of getting used to.
The NRAS leaflet that Clare references 'The impact RA has on Emotions, Relationships and Sexuality' I have just, as a result of this thread, read in full and can strongly recommend. So much so I have emailed a link to my wife. 😉
Your partner may not be ready to take it all in just yet, but it would help you to understand what is going on in his head at the moment and what an effect this is going to have on both of your lives.
The evidence on the various drugs causing depression is a bit patchy (with the possible exception of steroids which are the work of the devil. 👿 They give you unsustainable relief but cause oh so many problems, physically and most definitely emotionally), but some folk swear that certain drugs triggered negative emotions as you can see by the above posts.
For me it was a reactive depression. I was diagnosed as having 'moderate clinical depression' by a psychiatrist. In a way I felt like, no sh1t - what do you expect?! But in hindsight I realise how bad I felt. Moderate may not sound too bad, but bear in mind 'severe' is 'likely to attempt physical harm / suicide'. I have to say I was never likely to do that even at the lowest point, but still I wasn't a happy bunny.
And I must have been a nightmare for my own partner (now wife ❤️). This lasted years I'm slightly ashamed to admit, but there is light at the end of the tunnel. Having children was massive for me, it gave my life purpose and made me get up in the morning. I love them more than I can express and have been main carer on and off as I have all but given up work.
One door closes, another opens. Such is life; I realise that now. Life hasn't 'gone to plan', but it's still pretty good if I'm realistic, just different. And a bit painful.
But it took me a long time to adjust, and in fact I'm still adjusting. I've recently had unrelated (spine) issues, and this time I didn't sink into a hole, I did something positive. It made things a lot better for my wife & children - and therefore me. So it seems I have adjusted in ways I didn't even realise. If I hadn't had to learn to cope with RA I would have been a lot worse this time round.
Anyway, I hope the advice you've had on this thread gives you something to think about, in a good way. He will improve, physically and emotionally. Keep talking to him, just don't push him. He needs time to grieve, as most likely do you; even if you both don't realise it right now.
Thank you so much for your advice, I guess it's jut going to take time and patience and I just hope that in the end my partner comes to terms with it. He opened up to me the other day and he said even though he knows he has RA it really hasn't sunk in yet, he said he hasn't even thought about living with this for the rest of his life, he has just stored that in the back of his brain. So do you think like you said above that he needs to grieve for his old life before he can start to accept this new one. Also his worst day of the week is Thursday and he has his MXT on a Wednesday but his nurse team are saying he can't have folic acid more than once a week (Saturday) which in my opinion is just not right for him. Sunday, Monday are OK days, Tuesday's are a bit daunting now because I think his body is used to Wednesday being MXT day, then Wednesday, Thursday, Friday and Saturday are bad days sometimes very bad days.
Sorry to go on I just have so many questions and his team at the hospital seem to be worse than useless. I know they see this everyday but for me and my partner it's all new I just wish they would have a bit more compassion.
Yes, it takes time. For some of us 'weaker sex' in particular maybe. 😀
MTX was the first thing that worked for me, but it took 16 weeks and then overnight I began to feel a lot better. In the end though I came off it because I couldn't stand the side-effects. I was physically sick most mornings, I used to take a bag with me in the car on the way to work.
I felt dreadful the day or four after taking it also.
I was on folic acid every day apart from injection day, this seems to differ from place to place, no idea why.
These days I'm on Humira and nothing else at all for RA (just painkillers for my back - but I'm almost off them too now).
I was on Diclofenac and lansoprazole for 16 years, but I started hearing more and more about the downsides of long-term use so stopped. My hands and wrists hurt, but better than the alternative.
Turmeric is worth researching - lots of people have good results and there have been studies that have shown similar effects to NSAIDs without the negative side-effects.
When you and he are ready you might want to look into the increasing evidence on the effect of diet (intestinal permeability or 'leaky gut'). The good old NHS aren't saying a lot yet, but they have to wait for 'evidence' before adopting new approaches, and some of us don't wish to wait.
There's loads of posts on here about it (some heated 😀), but like I say, when you're ready.
I have spoken to him about maybe changing medication but because it is working as far as he doesn't have much pain now he do sent want to change in case he gets the pain back. I do think the steroids are doing a lot of damage to his emotional state as well. They were weaning him off them so he could completely stop, but just today he has been told they will keep him on 5mg daily for the foreseeable future. They just seem to change there minds daily and that alone is making him worse because he doesn't know if his coming or going.
Unfortunately rheumatology isn't an exact science, there is no 'one size fits all' approach, and they need to be flexible with medication and respond to symptoms and blood test results.
I was kept on a low dose of prednisolone for years, it was always explained to me that we naturally produce the equivalent of 5mg per day cortisone, so being on that amount shouldn't do too much damage.
When I was ready and able I slowly weaned myself off them. But my rheumy would have been happy for me to stay on a low (maintenance) dose.
If his symptoms are improving he would probably have a hard time convincing rheumatology to change his meds to be honest.
Ade
Hello.
I can totally empathise. I feel very much the same way to be honest. For me it is the chronic pain and lack of energy. I do also have a mood disorder, but I certainly notice that I am much more negative, and quick to anger. I feel totally frustrated at my lack of ability to do the things I once enjoyed. This happened long before taking meds, though steroid shots can make me a but unhinged!
It is a very difficult thing to come to terms with. Was your husband very out going and energetic before the illness? I suspect that the inflammation itself causes MH issues, and alongside feelings of loss it's understandable people become depressed.
I am going to ask my doc for some talking therapy. Do you think this might be something your husband would like?
It is a vicious circle of feeling too knackered to want to do stuff, which in turn makes the situation worse. I have to force myself to do things. I always feel a bit better when I do manage to accomplish something. This morning I went wild swimming.
I hope your husband feels better soon. Look after yourself too. It's not easy being around someone who feels low and angry...so my son tells me!
Thank you so much for your response. My husband is not the kind of person who will talk to professionals about his problems and he has already said he does not need and will not take more tablets. I know how he is suffering but is it wrong of me to just want some sort of relationship back, I feel like all I do at the moment is make sure he has his tablets and make sure we go to his appointments. Our sex life has disappeared, when I bring up the subject his either too tired or it causes an argument. I do try and do everything I can to make his home life as stress free as possible but it just always seems to be me who gets the arguments and the snappy, moody and very irritable side. With everyone is he hides it and so I can't talk to our mutual friends about it because they don't see the extent. I feel like my life is on hold as well as his at the moment, I could be in a jolly mood and as soon as he walks in the door that just disappears. It's always little things for instance I put my pj's on early after my shower and he had a go at me when he came in because I had done that. I love him to bits but every time I try and suggest talking to someone or try and show him this site for instance to show him he is not alone he just has no interest at all... This horrible disease dosent just change the suffers life but also those close to the sufferer. His consultant has written to his gp about his depression and he has an app Friday to discuss this but he has already said he is only going there to see why the depression was discussed with his gp without his authorisation. A brick wall comes to mind ;)... Sorry for my ramble it's just I feel so alone at the moment I just hope something gets sorted very soon because he isn't good at all at the moment. x
Oh dear. I really feel for you. I can also feel for your husband too. Since the RA diagnosis my personality has really changed...and not in a good way! I have now alienated myself from half the village I live in. This is purely down to my own awful temper and depression. Sigh.
I am off to see my GP about it tomorrow. Chin up my dear.
I have had RA for a decade. Most people have bouts with depression when they have a chronic health problem. I can honestly say there are times when I get really depressed. I have Fibromyalgia as well. My RA Doc suggested Cymbalta to control fibro and help with depression. I have had the dose raised only 20mg in ten years. I now take 80mg. It helps. From what you said I have to agree with others it sounds like the pain is taking and depression is trying to get a grip. Have patience, give the medicines a chance to work. Also, look into pain management therapy. I see a special Doc just for that.
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