um totally new to NRAS but my mum recommended them. I have had RA Active for 2 years plus and on Methetrexate Injections had a Psychotic episode with Steroids so not going to do that again. Apparently I am now not Active so better I guess. I get so many side effects from sore leaky eyes to bleeding gums joint pain hair loss nausea feelings of being on fire and also I have Fatigue and Flares really horrid!
Also being bombarded with DWP and PIP Appointments which are totally stressing me out and giving me psychotic episodes which is horrid!
Any one any advice gratefully received thanks
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Snowshoehare110
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Hiya. nice to have you around. They're a friendly lot on here.
Sorry that steroids made you unwell. I had the same experience as you on sulfasalazine, and to a lesser degree methotrexate. Interestingly I'm ok on steroid depot.
If you can manage to stay active, and see people to chat to that will help with the mood s bit. If you are feeling really rotten on your current meds do talk to you rheumatologist about it. It's not fun experiencing awful side effects. Some docs tend to be a bit dismissive of them. But also, they won't know unless you tell them.
Do mention all the side effects to your GP. I have so many things on prescription. I really don't know the majority of people can afford them! I used to get a yearly card but even that's pricey when you don't work. Now I'm over 60, it's all free but please look after your eyes. I was born with a squint in my left eye, had two ops to straighten it but have no sight other than shapes or colours. My right (good!) eye has had a corneal ulcer, a torn retina and lastly I had a bad reaction to Duloxetine which caused havoc with my vision (apart from sinking me into depression). What I'm really getting at is you have to make the most of what is good. Thankfully, my vision is back to normal (😬) but I regularly put drops in, Carmize preservative free during the day & Carmeloze gel at night to keep them moist.
I can't seem to keep my posts short. Sorry. Take care. xx
Just an addition - Duloxetine caused me really bad anxiety & panic attacks. I only took them for a couple of weeks but the effects took a lot longer to wear off. Even now I get anxious if I go out. That should be great for my PIP assessment on Wednesday!! xx
Sweetie, you seem to be suffering a lot from anxiety, and what you call psychotic attacks. Are you getting any professional help/support with this? It might be as well to ask the question. RA alone is bad enough. Good luck x
Hiya TempleofDoom, thanks for that and I hope you feel much better it all sounds rather horrid! I know it's all so expensive and I am not working but hope to go into remission at some point so I can hopefully.
I have been off and on the MTX as pick up infections whilst I am volunteering so need to stop that so can keep taking correct dose I guess.
Take Care x
How awful for you: I think anxiety and depression go with the disease too, you're not alone on here. You're right the last thing you need is a load of assessments to add to this. You may already know but if your ring NRAS helpline they can send you their booklet on PIP assessments which is excellent: I used it. I found citizens advice and equal lives site good on DWP. Do not go to any without companion and/or recording. Good luck. I'm on methotrexate, side effects improved after 9 months (sorry!) when they lowered dose, can you try rheumatology helpline if you re suffering: I got additional appointment when emailed about side effects/ x
PS if you go on search bar at top, lots of other posts on anxiety help: something might strike a chord x
Hey , thanks so much that is really helpful and I will try to do some of that. I have had to go to a lot of them and they were so horrid that I just can't do them anymore. I feel so sick and miserable and as I said its hard enough just getting through the day with Anxiety and now RA it feels insurmountable at times.
I do try and speak to Rheumatology helpline too and report symptoms as well. Its just trying to keep a balance as I have only my daughter to support.
They are dreadful; i just had total rant about one but it is last i have to sort so just one step at a time now (this wasnot old stressy me who wrote list after list). RD totally slowed me down. GP got cbt course for me, i read Dr Matt Lewis and do mindfulness if I can. No instant fixes but helps on a good day. Good luck, take care, not easy being parent with this x
I tend to find anxiety and depression grow with the drug therapy and increase the longer I take it.
Also sometimes difficult to get a proper sleep even when not in any flare.
I recently found a talk on You-tube that really helps me. I can be lying in bed having wakened at eg 2 or 4 am but doing this breathing is better than the deep kind taught to pregnant women or as relaxation.
The talk is for those who find their anxiety, even a panic attack, increasing or beginning.
It sends me off into a good sleep!
If used in the daytime, sitting up, it just nips anxiety right in the bud.
Well, MTX had a severe mood changing effect on me. Weepiness, depression. And physical side effects that are more common too eg rash, mouth ulcers, upper respiratory tract irritation etc.
Yeah made me feel lousy for 9 months, similar side effects to you, low mood, nausea. All of a sudden, end of April, stopped feeling like this as much (someone else on here posted about different brands had different effects, but who knows why?) I am on lowered dose 12.5 mg couldn't cope with 20 mg but this is not enough so they want to add in sulfasalazine (seems to cause loads of people depression) or leflunomide which worries me because of long half life.
So...I wondered if I could ask them to up MTX again a bit and see. On the other hand I stopped hydroxychloroquine because it kept me awake and made me feel sick all week not just 3 days of MTX nausea. I have started having real trouble sleeping and anxiety again and am now wondering if it was MTX all along. The more of these you're on the harder it is to pick out what's causing what or whether it's RD itself. Thanks for reply, hope whatever one you have next does the trick without side effects x
Methotrexate is not recommended along with leflunomide but ok with hydroxychloroquine.
I had to stop MTX (Metopens) for one month last year due to infections. Felt so much better during that time then when resumed just slowly went back downhill for mood.
Guess it is different for each individual although MTX is known for mood changing effects.
Leflunomide can do the same but only for the first month, or so I have read online.
Yes, it stays in the body longer than MTX.
Hate the necessity for all this poison but the excruciating pain of untreated RA is just not bearable.
Thanks Angela, really helpful: still not sure what to do. I hate it too, it terrified me at start and now I've never taken so many drugs in my life and worry about what they're doing long term. However my hands and wrists flared up today (lot of stress this week) and anything's better than that being as bad as it was when I first went down with this. Those poor people a few decades ago must have been in agony; count your blessings eh? x
Hiya Kerena I know both my mum and my eldest sister have RA and both have had operations. My Mum has had both knees replaced and her shoulder. My sister has had both feet done so yeh I am not there yet.
Mine is in my right hand so it effects everything I do and I feel so guilty when I remember the pain my Mum would be in and didn't realise it at the time.
She is on Biologics now and she injects herself too.
Aw your poor family but good to have someone who understands. Hands are the worst, what din't you use them for. Don't feel guilty, i was same before i had it, some days wish I'd never heard of it now😄
Hi charisma7aj, just realised that it is the MTX that is causing me to be so moody and depressed thought it was because my HRT not working or my Anxiety getting worse or my age due to menopause so many things! Aha right so it definitely affects my moods as I have been on and off a few weeks and then once I am back on it my mood deteriorates rapidly huh!
Think that penny just dropped as I have been reading your lovely posts as in really supportive and helpful thanks so much!
Also I had so many side effects from Anxiety meds last one especially gave me Bruxsimia so bad that I grew an extra jaw bone! Arghh so no more of that meds for me.
super to be on here and to be able to share so thanks guys!
I agree hate all the poison but hate the pain and flares and fatigue too!
Hiya charisma7aj I know but normal for me apparently! I call it my superpower! hah! so Anxiety Meds not all the same either so had enough of them and trying to deal with my Anxiety and Panic hah! Without them it was really hard but I weaned myself of them and from being emotionally numb to my emotional state super emotional I feel at least I am able to think again and sometimes function well.
I really feel for you and your family. I have never been on MTX but doctors often wanted to prescribe it for me. I think drs often over prescribe e.g. antibiotics and anti depressants and now we have viruses which anti biotics can't treat.
If I were you I would first see my GP and remind them of all of the meds you are on and your physical and mental health symptoms. May be you could come off some? And try some relaxing therapies like breathing techniques and mindfulness that others have mentioned. Your body is trying to cope with so many meds/ chemicals.
If I were you and in remission I would take myself off all RA drugs. Then you'd see what is going on. I had a remission of 13 years. I was so lucky and I had no meds during that time and no damage. Good luck.
Hiya Karena, I think I was meant to take Hydroxychloroquine as well as MTX but as I was on Sertraline at the time, decided to just put me on MTX although Steroids were before that and they gave me a Psychotic reaction so not fun at all!!
Never taking them again ever! hah nope Thanks for the heads up on that one doesn't sound nice at all. I used to feel nausea too more so when I took Folic Acid only once a week, then upped it to everyday except when I am taking the MTX and this helped with that on advice of Rheumatology Nurse so I guess its important to report your symptoms and get help.
I hope you feel better soon and thanks for your lovely posts too!
I take folic every day bar Mtx day too. Lots of people find hydroxychloroquine fine and one of milders, I'm just a weirdo! That sounds so scary it wld put me off steroids too, dont blame you.
Hi there I'm in exactly same position as yourself .PSA and on metoject injections .DWP and PIP was horrendous.made me feel like dirt off their shoe and anxiety is now depression.Docs don't listen,I'm just fed up repeating myself to them with no comeback,just keep fobbing me off .It's a horrible position to be in and sometimes I feel like stopping the meds and appointments and going back to just plain old pain relief😏too much hassle if you ask me !
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