Posted , 15 users are following.
I was diagnosed with PMR in April this year. Started on 20mgs Prednisolone. Wonder drug took the symptoms away. Now alternating 10mgs 8.5 mgs every other day. Apart from stiff neck in morning, no symptoms.
Unfortunately I am feeling so low and my husband says I am constantly angry and snappy.
Is this just me becoming a horrible person or is it prednisolone?
Had a major meltdown last night and felt suicidal.
0 likes, 12 replies
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Patient-Mod susan41679
Posted
Hi susan41679
We note from a recent post which you have made to our forum that you may be experiencing thoughts around self-harm. If we have misinterpreted your comments then we apologise for contacting you directly. But if you are having such thoughts then please note that you are not alone in this, and there are people out there that can help.
If you are having these suicidal thoughts then we strongly recommend you speak to someone who may be able to help. The Samaritans offer a safe space where you can talk openly about what you are going through. They can help you explore your options, understand your problems better, or just be there to listen.
Their contact details are on our patient information leaflet here: https://patient.info/health/dealing-with-suicidal-thoughts, which also offers lots of other advice on how you can access the help you may need.
If you are having such thoughts then please do reach out to the team at the Samaritans (or the other people detailed in our leaflet) who will understand what you're going through and will be able to help.
Kindest regards
Patient
Silver49 susan41679
Posted
I think you need to make urgent contact with your GP. I can't remember the list of side effects but it can cause mood swings. Please make an appointment today to discuss with GP.
MhairiP susan41679
Posted
Hello Susan
I'm sorry you have been feeling so awful. How are you feeling today?
I agree with the previous replies - you need to speak to your GP; speaking to Samaritans would be good as well - they are available 24/7.
I'm very new to PMR, having only been diagnosed about 2 weeks ago; I'm on 15mg pred. From what I've read, I wonder if you have gone down from 20mg to 8.5mg too quickly? I'm sure more experienced people on here will be able to offer advice on that.
Please remember you're not alone on this journey!
marg44743 susan41679
Posted
Susan I personally became agitated initially which lasted for weeks. I didn’t know if it was the PMR process or prednisolone. I am sure everything will settle in due course. PMR is a dramatic change to our body that basically appeared overnight.
Keep well😊
EileenH susan41679
Posted
If you posted this 2 days ago - how come we have only seen it now? I'm sorry you have had to wait so long for us.
I think there are a few factors in play here. At least one is the pred and it may be worth speaking to your GP and telling him how low you feel.
In the same area - I don't think alternating doses like that is always helpful because the body often struggles to adjust from day to day. Why are you doing it? You are obviously in the UK because you are on prednisolone - and it comes in 5mg and 1mg tablets if you are on plain white non-coated pred. That allows you to reduce fairly easily 1mg at a time and with a pill cutter you can do 1/2mg drops. If you are on enteric-coated/gastro resistant pred it comes in 5, 2.5 and 1mg doses and by combining the tablets you can reduce 1/2mg at a time very easily.
https://www.medicines.org.uk/emc/product/2077/pil ; in case your doctor doesn't know about 1mg e-c pred
PMR itself can cause these sorts of emotions - I experienced them on and off during the 5 years I had PMR without being treated with pred. Overdoing things made the mood swings worse. If someone said/did/implied something I didn't agree with or which I felt affected me adversely I flew off the handle - something as simple as a cafe on a ferry not having anything I could eat as I'm allergic to wheat was enough to send me into snarling mode! I knew I was snappy and ratty - and that just made me feel totally down. And on occasions I did consider chucking myself off a bridge might just solve it all - at least I wouldn't feel ill.
It is recognised now that another major factor in becoming depressed and angry is the bereavement aspect of chronic illness. You have lost "you", your health and previous life have disappeared. Bereavement counselling can contribute to learning to deal with that if you can access it.
You probably feel no-one understands how you feel, the doctors rarely do - use us as your sounding board and have a rant at us instead of your husband who, bless him, probably hasn't a clue about why you are no longer the wife he is used to. And doesn't know how to react. I don't know about you, but the PMR changed our relationship tremendously - pain does funny things to physical relationships. I'm not asking - just wondering. It all mounts up.
There is another forum from PMRGCAuk at healthUnlocked. The format is a bit different and we have fun and laughs as well as letting off steam about PMR and GCA - maybe there is something there to help to relieve your tensions?
MhairiP EileenH
Posted
Hello Eileen
I notice in your reply to Susan that you had PMR for 5 years without being treated with pred - how did you manage? It's the first time I've come across someone who has managed without pred (I did think about it when I was first diagnosed but the thought of excruciating mornings made me opt for the pred!). It's very interesting what you say about bereavement as well - so true! For me personally it's not just the previous life that's disappeared, but it's also the worry of all the things that can go wrong with long-term steroid use (I know, I know - I should be taking one day at a time without worrying about "what ifs"!!).
EileenH MhairiP
Posted
I had no choice - I simply wasn't diagnosed and offered suggestions of "your age" (I was 51 for goodness sake!), "depression", "somatism" and a few others. You have to get on with it,
I switched gym - I couldn't use the machines and was able to do less and less of the classes. I found one with a warm pool, sauna and steam room. They had a daily aquafit class and I did those. I fell out of bed having managed to get into a swimsuit, put on a top and tracksuit bottoms and crawled to the car. I showered at the pool and did the class - and then I could move better. I still hurt but it did hurt less. I could even manage heavily adapted Pilates and Iyengha yoga which also helped a lot.
That went on for almost 5 years and then I had a major flare and I couldn't move at all. I know now it was myofascial pain syndrome - all my flares are the same, MPS appears first and then the PMR gets worse. I was misdiagnosed on another matter and stopped from driving until epilepsy was ruled out. So I couldn't even get to the gym and I deteriorated badly. The results got "lost" and weren't there at the 6 week follow up, the consultant was one of the worst I met - even as a colleague of my husband's - so I refused to see her again and managed to crawl to our flat here in Italy.
Here, without needing to do stairs, I improved a lot and even managed to arrange to ski. I put my gear in a storage locker so all I had to do was get to the ski bus! A morning up the mountain loosened up the stiff hips and shoulders as well as the aquafit had. But the time I got home the results had arrived - over 4 months. But nothing to suggest epilepsy - and by now I knew that I should never have been stopped driving on a single episode of anything. She should have waited a month to see if I had another before telling me I had to inform DVLA. I had 6 months without a driving licence.
In that time though I had worked out what I probably had. Not that the rheumy agreed despite immobile to normal in under 6 hours on 15mg pred! But I happened to see a different GP who agreed it was PMR on the basis that everything was back in 6 hours after I missed the first 5mg dose of the taper from the rheumy. It hasn't been easy since either - but as long as I take enough pred, I have a pretty good QOL.
Recent work has found that at PMR doses the long term effects are no different than would be found in an age-matched population not on pred - pred is blamed unjustly:
https://www.practicalpainmanagement.com/resources/news-and-research/polymyalgia-rheumatica-steroid-side-effects-new-findings
And the effects of unmanaged inflammation in the body are also not inconsiderable. Most so-called effects of pred can be managed when you know how - and unmanaged PMR can lead to a fair bit of weight gain as I can tell you from bitter personal experience - and can be lost again, even on pred!
MhairiP EileenH
Posted
Oh my goodness, Eileen - 5 years without being diagnosed - how awful! I just know that in the week or so before I was diagnosed, I was getting so bad that I could hardly get out of bed, and when I did, it took me 2 hours to get washed and dressed.
Thanks for the link. I have read that before (I've been reading so much in the last few weeks, I can't keep track of what and where), but I do find it hard to believe... or perhaps I'm allowing my prejudices (against drugs/steroids) to influence my thinking!
Michdonn susan41679
Posted
Susan, believe me Prednisone turned me into Mr Hyde, I sometimes scared myself. My wife told me that if I go on high doses of Pred again she moving out, till I get on lower does. Pred, the Devil's tic tac have different effects on different people, to me it's horrible, but much better than the PMR that put me in a wheelchair. Good luck on the rest of your journey, stay positive and smile. ??
margot34956 susan41679
Posted
Hi Susan, I would like to give you a big hug!
You are definitely not becoming a horrible person. I too have had meltdowns,and over reacted to small things, cry a lot. Feeling of incredible sadness
It must be the steroids.
I don't know your age, I am 55 and also going through menopause, which is not helping!
Time on your own, if you can and walking does help
Silver49 susan41679
Posted
I notice that we have not heard from you, Susan, and I am wondering if you are alright. As others on this forum have said pred does sometimes turn is in to somebody we don't recognise both physically and mentally. The Cushingoid face, lumpy bodies etc and the anger that comes from seemingly nowhere. I am normally a very even tempered individual and even I surprised myself. At times I just bit my tongue but there were others when I just let rip and looked round to see who this alien was. I am presently on 3mgs and most of the side effects have gone apart from the weight gain though it is dropping. Hang on in there......it does get better.
lynda62707 susan41679
Posted
Susan, PREDNISONE!! I too, am experiencing same mood swings and I'm not a moody person! Also, no patience at all!! Can anyone say "menopause"?? Lol. ( no it's not that).