Hi hope your all well I was prescribed pred from my consultant I had ritx in jan got horrible compulsive anxiety disorder I had the exact same symptoms the year before in 2019 and again in 2020 around 3 months after the ritx .. anxiety slowly builds up and then it’s very heavy never had nothing like this in my life . ritx didn’t even work this year constantly flaring so I was given pred had the worst anxiety again after taking one tablet could not sleep was stuck on repeat cleaning but obsessive full of fear just really heavy ..I don’t really have severe anxiety I didn’t even think I had anxiety.. I’m thinking I must have anxiety mildly and the drugs are enhancing In me .. does any one suffer anxiety and the drugs have made it worst...my anxiety stopped 24 hours after I stopped the one pred .any thoughts anyone . But if I have a steroid injection I’m not bad at all what going on with me ..It’s so sad I’m either sick of these ra drugs or anxiety . Does anyone get anxiety of the drugs I feel like I’m going out my mind when it happens are the drugs to blame
Thanks in advance
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Vonnie10
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Vonnie i don't take steroids anymore as not only do they pack the weight on my they also make me very emotional and weird if you know what i mean darling. Hugs darling. xxxx
Hi Sylvia steroid drugs are awful it’s so stubborn don’t seem to be able to find a drug of chose that works hope you feeling ok I know you’ve been so ill I’m sorry for that xx
I think of oral steroids as the devil’s tic-tacs. They turn me into an emotional mess. But steroid injections are fine. They are very slightly different types of steroids so you react differently,
Ne I was bad with anxiety but it was awful could feel it slowly building up got stuck in the kite hen one day baking for 7 hours house is spotless tho,, aren’t these drugs terrible and what we have to put up with.. xx
They can be friend .. and foe. I needed to get out of bed and move as I was rigid/immobile and in constant pain but I’ve never lost all the weight I gained on them. Ten months was hard going and the taper is hard indeed.
Hi neo I’ve stopped them spoke to CNS made me appointment to speak with consultant and I spoke with gp.. I’ve had steroid injection for 4 years just maybe it’s something to do with that and the pred tipped me over. Last injection was just before lock down perhaps it’s wearimg of maybe it’s withdrawal I don’t not know but something is going on. I will get to the bottom of it.. catch 22 either pain and stiffness or steroids.. but the pred was awful on top. X
My GP have me pred tablets to tide me over until my initial rheumy consultation and warned me that the main side effects to look out for were psychological - either low and anxious or high and happy. Luckily I fell into the latter category but obviously they're common side effects. Nothing similar with steroid injections.
Hi Vonnie. Although I do not have any emotional or other mental health issues with steroids I have experienced similar effects when I was treated for another illness. I had to have quite a lot of hormone therapy, either that or a tremendous amount of pain, and they certainly affected my mental health. I became very paranoid and convinced that tiny, tiny things would reap untold damage to others and that somehow I was responsible. Terrible, exhauting and very destructive to live with. My 'real' self, untouched by drugs was far more resilient and I never suffered from such intrusive thoughts. At the time (20 yrs ago) I was dismissed but other people on similiar drugs also experienced the same effect.
I think it is really important that you seek advice and support either from the GP or other professional. Drugs can have a very powerful effect on our mental wellbeing and the side effect you are experiencing is very debilitating and must be exhausting. As you say this is not you, so please reach out to those responsible for your medical wellbeing. As Helix Helix and Sylvi point out steriods can have a powerful effect on people. So please don't suffer in silence, know it's the drugs and make some phone calls.
It is truely very difficult and I can understand your reluctance. Everyday I appreciate more and more how delicately balanced both our bodies and minds are. Hopefully on Thursday you will be able to have a sensible discussion about the best way forward about how to avoid drugs that have such a negative effect on your wellbeing but also how to manage your pain.
I shall be having a similar discussion on Friday - expect it's how to manage my RA without creating havoc to my stomach, which is exactly what's happening.
Best of luck and please let us know how it goes for you if you feel able. x
I experienced those symptoms 20+years ago......I stopped oral steroids & had the odd Depomedrone or Kenalog injection, but after time they started to produce the same effects,,,,,now I can’t even tolerate the methylpred given with Rtx.
I don’t think you need to have a neurotic anxiety to experience this.....the drugs produce the anxiety....I am certainly not an anxious person.....except as much as most people in a nervous way like “will I pass the exam”?
My Rheumatologist now advises I never be prescribed steroids ...unless In a real emergency.
Necessary drugs for some....but drugs from hell for me......very unpleasant though as I just have to tough it out during a flare.
Talk to your doctors ASAP, & explain how these drugs affect you.
Despite my rheumatologist writing to tell my my GP, he curled his lip when I mentioned it...he gave me the impression I was imagining things.....which I was on Pred!
Very true. I think that's so important, you were imagining it whilst on Pred:. It's such an easy trap to think that all the mental angst being experienced on some medication is actually you and that you have had a personality transplant. I also experienced the lip curl from a GP - how my hands didn't slip round their lovely throat I'm not sure to this day. I suffered for a substancial number of years. Now I luxuriate in being simply me.
Too true...except when you have a bad flare & you know just a couple of pills will help....but I prefer the pain to the terrible side effects....well of course I don’t actually “prefer“ it.... but it's the lesser of two ghastly alternatives
Agreed. At least now people are far more comfortable talking about these things and hopefully more understanding, which is fantastic and allows for alternatives to be explored.
Ac I think your very correct doubt it was the ritx and it’s the steroid reflecting back we’re does that leave the likes of me ritx didn’t work so well this year.. or could it be that the anxiety steroid as caused over use of my joints and it’s causing flares all’s I never stop ? But my joints hurt like hell?
I will ask when I can..I’m due in July that’s if it can be sorted before need to discuss it with them. Think I overusing because of the anxiety and I’m flaring from it I think but it make sense in my mind xx
I'm sorry to hear you'r suffering like this. As others have said I would think it's more likely to be the steroids that are causing your anxiety, not the Rituximab. Unfortunately before you are given the Rituximab itself you are given a steroid infusion first and I think that's probably causing your problems. Talk to your doctors about this problem when you can.
Thankyou everyone you people on here are amazing and hero’s . I’m ringing my rhem nurse today it’s like a jigsaw puzzle but with you lovely people . It help enormously..now everything fits.. have a lovely day hope your joints are playing nice . Xx
I feel for you but would prednisolone be able to work that quick. I took 60mg a day and it didn't do that. Have you tried talking to the GP asking for some counselling. That may help the anxiety other than that hypnosis could help. Of course now its difficult and probably adding to the situation. I think if I were you I'd try some distraction and exercising. Exercise relieves stress and its hard but worth just doing a few laps of the garden building up, avoid tea and coffee for a while and take up a new interest as well. Its all worth trying as if you don't get this effect from a steroid injection it may be your overthinking things. I do hope you feel better soon.
Hi it didn’t start immediately I was awake most of the night it got worst the next day... I had the same thing happen after ritx in 2019 &2020 and its gradually builds up but it lasted longer after the ritx .. got to be the steroid the drugs are so powerful I still feel,iffy today had the tablet 2 days ago but I’m not as bad ...steroid madness as they call it.. and nope don’t need counselling didn’t have anxiety before ra .. But thanks Medway lady.
I don’t have anxiety I’ve only had it since the drugs it’s got to be the drugs causing anxiety I think no more steroid for me would rather the pain if I must..catch 22
Sorry ML..but it it is a known but very rare reaction to certain steroids. I was away with the fairies on 10mg. of Pred. GP’s on the whole don’t recognise it because it is rare....unless they see you in the throes.
I have never suffered from anxiety ...it took a long time for me to work out what was happening to me....until I spoke to my rheumatologist , & as he so technically said “it does fry some people’s brains”!
The dose of methylpred I was given prior to Rtx infusions (which supposedly does not cause these symptoms) gave me hallucinations for days.I was fine the day after the infusion ...but then could not sleep for days I imagined things & when I looked in the mirror I didn’t recognise myself.
That is why I call Pred the drug from hell!
If it does happen ......don’t keep quiet about it...tell your rheumy or your rheumy nurse....I don’t think there is an antidote..I guess you just don’t take steroids unless your life depends upon it.
Ac aww it’s so sad but I’m now realising and reflecting back it’s got to be the steroid,nervous and compulsive and I’ve never suffered with this in my life nurse as made me a telephone consultation with the ra doctor. How do you people go on if you can’t have steroid if you flare .x
Hi Vonnie, Sorry to hear you have had this reaction to steroids. I’ve come to the conclusion that steroids can have this effect on me also. I was aware that people say steroids make them feel ‘wired’ but in me this wired effect is more like feeling constantly on edge, as though something awful could happen at any minute. I do not suffer with anxiety normally but I would say by nature I do tend to be a worrier, so maybe steroids just accentuate this part of my personality many times over?!
Last time I was on them was for a flare was last summer, and I got talking to another lady who was on a high dose of steroids for colitis at the time and she described exactly the same feeling, which made me feel reassured at least! She was due to go on a holiday and was seriously considering cancelling it because she was obsessing over something going wrong on the flight there, even though she was a confident flyer normally.
I’m flaring at the moment and have been offered another course of steroids but I am not keen, obviously because of increased risk of COVID but also because I don’t fancy feeling that way again!
Anyway, not sure if any of this helps you but just wanted you to know you are not alone in feeling like this on steroids. Let us know how you get on with the GP call on Thursday. X
So sorry your in pain I think I would go with the pain in future I think. Steroid are horrid make me nervous and compulsive.. took me 4 years to twig .i wonder if it’s true the higher your anti cpp bloods are the worst your ra is I read that on here. X
I'm so sorry things are not any easier for you honey. Today was day 4 on the predisilone. I feel an "emptiness " creeping in on me. I do suffer from depression and have been taking 40mg Fluoxetine for more years than I care to remember. It is however calming down the inflammation. But at what cost? This is what's worrying me right now. I'm also unable to take my weekly methotrexate injection due to horrendous side effects. I was fine on them but lately I just cannot cope with the 3 full days of feeling downright awful every single week. I have a telephone appointment next week but have no idea what they might offer me instead. Sorry I digress, I really just wanted to wish you well and keep you posted on my dilemma. Take care, and please try not to beat yourself up over something you cannot control. ( note to self). Sending love ❤
Hi lizzy sorry late getting back I do hope you get sorted when you speak it’s awful you’ve feeling that way after your taking you injection that’s isn’t right you should not be feeling that way.. maybe you fluoxetine needs adjusting as well. Don’t suffer in silence .I’ve took steroid injection for 4 years maybe the pred tipped me over just maybe the injection is wearing off, I do not know I had it just before lock down.. my joints are settling down ..catch 22 pain or steroids .. so I wait to see what happens in the next few weeks, I may have over use of my joints and steroids who knows I’m not beating myself up over it.. will leave it to the ra doctor..I don’t suffer with depression or anxiety but i now suffer with anxiety with the steroid I think..my joints have settled so let’see how I go in the next few weeks with flares hope and prey I don’t could not cope. I flare up bad as to were I can’t get down the stairs properly for pain and it’s a nightmare. I just hope it’s overuse with anxiety and the ritx as worked .it’s complicated isnt it ? Liz I hope you get sorted of the doctor soon ,love and light take care lovely liz. Xx
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