Pred side affects: Please tell me if anyone else is... - PMRGCAuk

PMRGCAuk

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Pred side affects

50 Replies

Please tell me if anyone else is suffering terrible mood swings and feeling irritable. On and off I've been feeling like this for a few weeks and tried so hard to pull myself together, but it's getting worse. What's the answer, as I know this isn't me. Is Pred making anyone else feel this way too ? Definitely not due to having to stay in.

Anne

50 Replies
Topcar profile image
Topcar

I was feeling like a dragon 🐲 for about 3 weeks after starting 60mg pred my son jokingly (I hope) said his Mum had been replaced by someone with "roid rage" gp said it's a pretty common side effect and could prescribe something but I would probably adjust with time, she was right!!! I thought about what I was doing and realised I was putting myself under too much pressure setting targets I couldn't achieve then getting flustered because I had invented tasks that could wait, when I sat down and realised the dust would only settle again and the bread maker could knead the dough and even just carry on and cook the bread it didn't need to be shaped into rolls and all the other crazy things the pred mania invents for you!!! I've given myself permission to take it easy only do what I enjoy!!! the pressures off, we're adjusting to a different new, it's OK to feel odd and hey presto the dragon's hiding in it's cave for now, so hope you can overcome this and soon start feeling better 😍

in reply to Topcar

Thank you all so much and feel better that I'm not alone with these terrible feelings. Getting the shakes that stay with me all day every day doesn't help either...feels worse inside than actually shaky hands, but from time to time they do shake too. Been in the garden trimming back some bushes and generally tidying around, which has helped. Then daughter (who is amazing) turned up and sat at a distance for a catch up. She understands how I feel, but I've never suffered depression, so she doesn't want me falling into that trap. Whereas my poor hubby can't do anything right, so I don't blame him getting annoyed with me from time to time. I am always able to say I'm sorry though, which this morning I've said. We were going to set off on our usual morning walk together today, but I felt I just wanted to walk on my own, so did, he went later on his own. It's strange how Prednisone treats us all differently. I will try harder to get past this mental hiccup.

Thank you to you all for your input. I've read your messages out to hubby and feel he now understands better.

I've looked after him for the past 22 years, with him suffering many hypos from his type 1 diabetes. Sometimes managing to sort him out without having to call an ambulance. I don't want to be bothering the ambulance service at this time.

So if it's his turn to help me out, so be it. Married on the 6th June for fifty years, so must be doing something right !!

Regards Anne

Topcar profile image
Topcar in reply to

I still get the shakes but find if I have a glass of squash and sit down for a while it calms down!!! no idea why but it works for me 🤣

Maryis80 profile image
Maryis80 in reply to

Don't blame everything on Pred. It's just the whole situation we are in that hits everyone from time to time. You are not alone and we all have off days

in reply to Maryis80

Defo not having off days since reading that many ladies are experiencing the same. Even the situation with the virus and how much all of our loves have changed doesn't affect me. All of the symptoms are definitely down to the steroids. Currently on 20 mg for the next two weeks making it four weeks on total. Then I'll reduce by 1 mg monthly, so will expect the symptom to go on for a while longer. Before GCA was diagnosed I was started on 15 mg for PMR, no side affects whatsoever on that mg...when I dropped to 8 mg the problem of GCA occurred.

Legsy0714 profile image
Legsy0714 in reply to

All of your loves have changed? 😆lucky girl!

Pred has taken away my motivation. Endlessly procrastinate.

Legsy0714 profile image
Legsy0714 in reply to Legsy0714

And hearty congratulations on golden anniversary

Dunkel profile image
Dunkel in reply to Maryis80

I do blame this undesirable mood swings on prednisone, I felt them, more depression,

anxiety feelings, so bad, that after two weeks struggling I brought the pills back to thePharmacy, at that time I had a new rheumatologist , very kind, he believed me, and gave me Medrol injections instead, what a release, with corona it became impossible to have the injections, I tried prednisolone, it must be a somehow different from the pills, as I have no problems with depression. I also found a paper by the rheumatology research department, in the internet, from 2018, that talks about severe depressions as side effect of prednisone in some rare cases which is undocumented.

joyce69 profile image
joyce69 in reply to

Snap 😀 it was a beautiful sunny day 50 years ago although a little windy. I’ll raise a glass to you both in 6th.

in reply to joyce69

Thank you....yes, the 6 June 1970 was a wonderfully hot day.

PMRpro profile image
PMRproAmbassador

You obviously haven't been reading the recent posts!!! ;) ;) ;) There has been discussion in the last few weeks about mood changes with pred but yes, it is a listed and fairly common effect of pred at most doses though it is probably worst at GCA doses.

I, on the other hand, had my mood swings and bad temper with PMR and it improved once I was on pred.

Peptink profile image
Peptink in reply to PMRpro

Same here. I feel my mood has improved so much since beginning the pred. A much welcome relief.

Marilyn1959 profile image
Marilyn1959

I really struggled with mood swings for quite a few months when I started pred at just 15mgs, as well as blurry eyesight you have previously mentioned. I was previously very laid back despite being in a stressful job, pre pred. All of a sudden I was full of angst, would get angry or tearful at the slightest cause. I was so concerned about the change, that I sought mental health support. However, by the time this was approved and sorted, it had all calmed down. This was a result of only taking 15mgs, so I can only imagine how this can be amplified at higher doses. If you find you are getting very depressed, despite the current situation, speak to your GP. They may not have counselling resources at present, but he / she may be able to reassure you and / or be able to access you to telephone support if needed. It does and will get better as your dose lowers.

Lonsdalelass profile image
Lonsdalelass in reply to Marilyn1959

I was exactly the same at higher doses of pred. Had referral from gp for a bit of counselling, which helped. Also reducing stress by cutting down my working days really helped me. I'm much better now on smaller dose.

Maisiek profile image
Maisiek

Yes ! Yes! Like PMT when younger 😰 as with enhanced smell and taste, I was double sensitive to the irritating habits of my long suffering husband: it’s settling down now as I learn to adjust to my new

Life, be kind to myself, have an afternoon nap , and put the knives away 🤣: I’m on 7mg now. Good Luck!

powerwalk profile image
powerwalk

Yes totally. I would say I am not the same person at all! One of the reasons I hate pred so much!

Horsewhisper profile image
Horsewhisper

Hi Anne, yes me too - I am worse first thing in the morning upon waking where I feel quite flat, listless and wonder how I am going to get through the day. Once I’ve had a cuppa, brekkie and pred, I start to feel more “normal” and to be fair, isn’t quite my pre-pred normal self! The Pred-Mania has turned me into an ice-cream making obsessive and baking fiend (prob the desire to consume high sugar & high carb goodies, which I’ve just about managed to control!) Only this morning, hubby and I had a chat about maybe not approaching me first thing in the morning with ideas/projects/suggestions as I am generally snappy and negative which isn’t great for a constructive conversation. Good for you for reading out these replies to hubby, if you don’t tell him he won’t know. Brilliant that you can mark 50 years of marriage together - you are definitely doing something right! All the best wishes xx

Thank you so much. Means a lot you that ladies have taken the time to put my wobbly mind at rest....hate, hate, hate, feeling like this as I know I am a nice person deep down and don't like being nasty one bit. Even hubby standing in my way near the worktop when I'm trying to do something irritates me so much. I have some really good friends who I can talk to about this and they're all saying it's false due to the pred and things will improve. Just worry when I finally get to a low mg will things kick off and I'll have to increase again, like many others have had to. My best friend has told me to stop thinking negatively as everyone is different. I may make it into remission once the pred have finished. Even now after all these months I'm still getting discomfort from my jaw when eating, which is disappointing.

PMRpro profile image
PMRproAmbassador in reply to

What Grammy has just said is also very relevant and I thought about writing something similar as I clicked off the page. My OH manages to find the exact spot I am heading for too! After over 2 months in a restricted space and no other real contacts it is wearing thin for all of us I suspect :)

Grammy80 profile image
Grammy80

Maybe you could tell from the tone of some of my responses last week...there was a fighter in me just looking for a scrap~!! I think we should all give ourselves a break...I'm working on it.

#1 We have all these 'issues

#2 We have all these toxic wonderful meds

#3 We have the virus and isolation

#4 I have Trump

My halo got a little tarnished a long time ago and given all the circumstances I think everyone gets a tad edgy at times. Being aware of it and trying to do better is a WIN.

Give yourself a hug~!

💖💗🖤💚🤎💜💛🧡💙 Lots of happy colors, very little black! xo

PMRpro profile image
PMRproAmbassador in reply to Grammy80

#4 - we have BoJo ...

Grammy80 profile image
Grammy80 in reply to PMRpro

I just can't imagine anyone worse than the Trumpster~~you made me laugh out loud though~! xo😂🤣😁

PMRpro profile image
PMRproAmbassador in reply to Grammy80

Perhaps not worse - but pretty mindboggling too ;)

Grammy80 profile image
Grammy80 in reply to PMRpro

I'll agree with that...I've read a lot about him, I'm confused and Trump keeps me busy~!

in reply to Grammy80

At least you haven't had a sense of humour bypass with GCA and make a good contribution to the forum despite those issues. I appreciate your tongue in cheek, irreverent but positive approach to illness and to life. 😘

Grammy80 profile image
Grammy80 in reply to

Nope! That is one surgery I haven’t had!! Sometimes it is a fight, but I think of all you brave souls and I just try to be like you!!! Thanks so much! xo

Patience47 profile image
Patience47 in reply to PMRpro

I thought politics were off limits?

What hypocrisy!

Yellowbluebell profile image
Yellowbluebell in reply to Patience47

It wasnt really a politics discussion was it? A reply about having to cope with a leader who is daft as s**t after a simple comment about their own leader being hard to deal with is really not a political discussion. The reason we stop most political.comments is because SOME people over react to a simple sentence in an otherwise reasonable post and spoil things for other people. YBB

Patience47 profile image
Patience47 in reply to Yellowbluebell

Oh, it's only political if I say something in response to your nasty political comments. Good bye!

Yellowbluebell profile image
Yellowbluebell in reply to Patience47

Why do you have to be so aggressive? Firstly if you check you will see I made no political comment nasty or otherwise. So you have no reason to be rude to me. Secondly the reason we dont encourage political talk on the forum is clear to see in your response to a very light hearted comment about two world leaders. Please try to be polite on the forum in future. YBB

SheffieldJane profile image
SheffieldJane

Definitely Staplehurst !

Discuss it with your loved ones, possibly they will minimise the provocations. It is horrible, but it does wear off. Second time round, I recognise it as fraudulent. That means I don’t tip over the edge as readily.

Thanks Jane X

diana1998 profile image
diana1998

I was very snappy and bad tempered when on 30mgs especially at breakfast time and my poor husband bore the brunt. He was so patient, but I was always saying sorry. I was breaking things and turned very clumsy. Very bad nosebleeds and palpitations. Everything got better as the dosage reduced, so take heart, things do get better and we do return to our 'normal' selves.

Thanks Diana, so good to know it's not just me. Since reading many posts from the ladies hubby is now understanding. Still not fair to take it out on them though, but nearest and dearest and all that !! Now I'm struggling with my numb toes on left foot, it also goes under the pad....what's happening to our bodies !!

ShirleyAb profile image
ShirleyAb

You mirror my experience exactly! So sorry - it is awful. The only comfort I can offer is that as the pred dose gets lower I find it gets a little better.

Thanks Shirley, I'm having a reasonable day today. Keeping busy helps to make the mind wonder, so decided to do some baking. So far a coffee and walnut sponge, a batch of fruit scones and an Apple cake...goodness knows who's going to eat them all but sure they freeze well.

Marilyn1959 profile image
Marilyn1959 in reply to

I'm up for a home delivery of coffee cake and home made scones! Sounds Delicious😜😜😜😜

in reply to Marilyn1959

On there way, where do you live haha x

Cyclo5 profile image
Cyclo5

Yup, especially when my dose was higher, not so bad now I'm on 7mg/day

Hope you don't run into any probs being only on 7 mg. It was at 8 mg that my GCA started. How high were you originally Cylo5 ? Currently I'm on 20 mg.

Spanky2019 profile image
Spanky2019

Absolutely. It helped me to take pred at night rather than morning.

Roland_Burdess profile image
Roland_Burdess

Yes quite normal in my experience. Four and half years ago I was started on 30mg of prednisolone and I became a real Jekyll and Hyde. Even when I tapered down to lower doses I still had bad mood swings. After all this time I'm finally getting off the medication; the last two days I've taken none and I feel fine. It's been a long haul but it pays to taper very slowly especially when you get down to 10mg pred.

Best wishes.

Roland

in reply to Roland_Burdess

Yep, that's exactly what I'll be doing once I've finished the month being on 20 mg...probably do it by 1 mg a month. Goodness only knows how long that will take to finish, assuming I don't have to increase again. did you have to go up and down during that 4 yrs Roland ?

Roland_Burdess profile image
Roland_Burdess in reply to

Yes I did have to adjust the dosage during the descent. You may experience a flare when you reduce, particularly when going below 10mg, and then you'll have to go back up a few mgs. It's a very difficult condition to be advised on as everyone reacts differently to the PMR and steroids. I know it's a temptation to hurry to get off steroids but patience is the best policy, and listen to your body. I have found that the dead slow nearly stop (DSNS) method of tapering to work well; it's been quite well discussed on this site (DorsetLady amongst others).

Good luck

Roland

in reply to Roland_Burdess

Yes, Dorset lady is amazing and so helpful. I've privately messaged her many times asking for advice, she's so lovely and very knowledgeable.

Legsy0714 profile image
Legsy0714

Please refer to the advice and tables on reducing. 1mg is 10% of 10 but 20% of 5.

Thank you will do

VicSat profile image
VicSat

When I was down to 40mg Predislone for GCA I experienced euphoria for a month. On 30mg for the next month I experienced the worst depression of my life. Nothing I could 'do' would change either of these moods. Fortunately: This too will pass.

Amazingly, shielding seems to suit me fine.

greenheath profile image
greenheath

Oh dear YES. Apart from weight gain, how about hallucinations? I actually SAW two people in my home who were there, and then NOT there. Very frightening. And then there's memory loss. That's never easy to deal with. Not constant - but certainly there. My family thought I had Alzheimers. Steroids are a double-edged sword. They work, but at a cost. Greenheath

I hope they don't affect the brain permanently as I too am suffering a little, I lose train of thought.

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