I was diagnosed with Temporal Arthritis back in August last year and put on 60mg of Prednisolone and at this present time have tapered down to 10mg, since tapering down I feel as if I’m going through a personality change from being a positive happy person to the complete opposite has anyone else experience this problem since tapering their medication.
Personality Change: I was diagnosed with Temporal... - PMRGCAuk
Personality Change
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Phed
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Chronic illness affect people in a range of ways as does reducing pred in a few months, not to mention gca/ta. We often talk about how we go through stages similar to a bereavement.. Denial, anger, bargaining, depression and acceptance in the old model with a few more in the "modern" version. These stages are not linear but can be muddle making... Vulnerability can change us forever...or at least for a while.
Hi Phed
For some of us when we are on higher doses of Pred it can make us feel so much better, brighter & in myself a slightly more exaggerated version of Me! As we reduce that effect wears off but as we reach the Physiological Dose approx 7.5mg or it can be anywhere from 10mg we need that dose just to exist & while we are waiting for Adrenal Glands to ‘Wake Up’ so we don’t have that ‘extra boost’ so it’s only natural to feel lower.
The other explanation is that the whole experience of GCA has caught up with you & you could justifiably now be depressed, it’s worth mentioning it to your GP
It happened to me about two years after l’d had Breast Cancer, my Oncologist warned me that it does eventually......
Kind Regards
MrsN
SnazzyD in reply to
The supportive cancer centre of which I was manager, was like a processing unit for all the people whose life event was catching up with them. Typical was about 8 months after treatment finished, but it was sometimes a number of years. All we did was listen, give free supportive therapies, provide singing, art and relaxation and tell them, that they were quite normal and empowering them to make choices, especially if they had secondaries. The transformation was a privilege to see.
in reply to SnazzyD
I dealt with it all “too well” for Terry & the Boys but My Oncologist warned me about this. l was fine until someone l considered to be a Very Good Friend (who disappeared while l had treatment, again as they warn you about this) only for her to reappear when she was supporting someone else with Breast Cancer to ask if l could talk to her friend?.........
Then, she told me she was taking this friend for her Chemo Appts etc & would be taking her for Radiotherapy as well.
Mel never even bothered texting or phoning me, let alone come to see me, so l declined stating our Cancers were very different & subsequently so would the treatment plan & possibly the outcomes.
But it set off a chain reaction for me & it was another GP in the Surgery who picked it up, not my regular guy!.......
SnazzyD in reply to
Oh yes, I had a few of those myself and it was a common thread to people’s woes at the centre. It also reopened the wound when another person in our long standing set of friends had it and they were showered with help and gifts etc. I was always the one they came to with problems but when I fell, nothing. My help came from peripheral work colleagues, whom I would never have expected to be bothered, but they were outstanding.
in reply to SnazzyD
Oh yes you really find out who your friends are! 😘
It was someone from the church who deliberately crossed the road to avoid me when OH was ill that really upset me. Someone else offered to "do anything I can to help" - until I asked her if she would make me some of her wonderful soup in the hope of tempting his appetite. The expression on her face said it all.
And later "but you were coping so well" when I was driving to Edinburgh to visit him every evening and dealing with the girls as well. Was there a choice in front of any of them?
in reply to PMRpro
You really do find out who means “Is there anything l can do?”
A couple of times l said
“Oh, yes Terry was mid sorting out the loft & it needs finishing!”
Their faces were a picture.............
Not even my mother and brother could help with what I asked them to do! I didn't want to spend too much time with MIL either but they claimed they couldn't cope with seeing OH so ill ...
in reply to PMRpro
Omg what is it with people. I am not saying friends and family should live in each others pockets but if you are needed and physically able.....couldnt be arsed making soup! Terrible. I hope I could help friends and family. I lost a friend the first year I had pmr and everything flared and I felt awful I couldnt be with her more, but managed a few walks together and lunches and texted all the time. I do wonder if some of the people mentioned in this thread gave it a second thought. Or even knew what they weren't doing rather than were or vice versa.
PMRCanada in reply to
My best friend got “jealous” that I was losing weight and complained that I used to be her “fun factor” and used to dress up when we went out. She wasn’t happy with who I had become. What she totally missed was that I wasn’t happy either with changes I felt compelled to make. She is still very overweight, tells me I don’t compliment her on her outfits, and she misses eating fattening dinners with me. In fact she felt it necessary to criticize my choices and behaviours over a one year period saying she was concerned I was obsessing about PMR in the early days. She told me I was spending too much time on this forum in the early months.
Needless to say our friendship has really taken a hit, and I’m still shocked at her response and lack of support. Seems my 30lb weight loss has spurred something that is her issue...not mine!!
in reply to PMRCanada
That’s really quite staggering, PMR is a Big Life Change apart from anything else & l expect she became jealous of your New Friends despite them being online.
But she should have joined you in the Weight Management & you could have still gone out for lively meals they don’t have to be fattening to be enjoyable........
People are strange it’s often more about what you can do for them rather than for each other & that’s a great shame.
My Cancer sorted the Wheat from the Chaff!
30lb weight loss is amazing!
Well Done You 🌷
Angela x
Phed in reply to
Thank You for your reply, I’m back to see my consultant in a couple of weeks time so I will mention to her how I feel, I guess I thought as I had been on the steroids since August the only way was forward not a step backwards.
Phed in reply to
I guess it doesn’t help feeling down when the suitcase comes out of the loft and I’m packing some of my clothes into it that I can’t fit into at the moment, hopefully once off the Steroids I will get into them again, it doesn’t seem to matter how careful I am with food some weight still goes on, once the weather improves I will beable to get out for walks so with any luck I will lose some weight it’s not a lot but enough to make the clothes a bit tight, the worse part is I lost some weight before I was finally diagnosed with Temporal Arthritis which I was really chuffed about and treated myself to some new clothes, now it’s out to buy bigger clothes😔
Do you cut carbs drastically? It isn't the amount you eat, it is the carbs you eat that tend to be the problem. Snazzy and I both need very low levels of carbs to be able to lose weight but we both managed. I lost 35lbs while still on 10-15mg pred but I really couldn't eat much in the way of carbs at all - no fruit and root veg at all, just salads and above ground veg.
Thank you for your reply, I will look into what I’m eating more carefully and hopefully will start to lose some of the weight, that’s brilliant losing 35lb while still on pred, how long did it take you to lose the weight?
About 18 months - it was slow but steady. And the first place it went from was around my midriff! I suddenly found my trousers fell down and I hadn't noticed the fat was melting away!
It is hard when you are so sensitive to carbs and are working on eating healthily - but like Snazzy I have to get down to about 20g usable carbs to lose weight and it is sobering to think that these days one apple or one banana can take you to that on its own!! I don't know why they have to grow such enormous things for the market!
That’s where a lot of mine has gone on the midriff, it’s strange you always think fruit is good for you and yet it has got that much carbs in it, you must have been so strict with yourself, well done. Are you still on Pred? If all goes to plan I could be off them by November this year.
I've had PMR for 15 years, been on pred for well over 10! Don't build your hopes up too far for getting off pred by a given date because if you don't you may be very disappointed. It is the last bit that takes longest.
I don't mind not having fruit, I find it too sweet to be honest, I'd far rather have a chunk of carrot or cucumber! I know, I'm strange! But it is also a good way of resisting snacks between meals - I mostly eat nuts or cherry tomatoes. And half a square of dark chocolat!
I need to get back into the nuts again, I had a virus just after Christmas for about a month and It change my taste buds dramatically for some reason, I haven’t got PMR but the Temporal Arthritis which was a shock as I have never heard of it before, it was finally diagnosed in August last year, I must admit I had to put the dosage of Pred up while I had the virus and was really annoyed about having to go up instead of down, so now I just take each day as it comes, and if I have to go up I will it might take me longer but as long as the headaches go and I don’t lose my sight that’s the most important thing, it’s good to see you have been of the medication for so long now.
No Phed - I've had PMR for 15 years and the first 5 years were without pred as I wasn't diagnosed! Still on pred, have given up hope of getting off. But it's all good - it gives me a good life 
Sorry I read your reply a bit wrong. I guess I was one of the lucky ones, my T A was diagnosed after a month but it was only after seeing 7 different doctors in 3 weeks, they seem to miss the point of horrendous headaches and unable to brush hair as it hurt so much or even put head on pillow, and also the fact that my sight went in my right eye for a few minutes, apparently one Doctor wrote on my records that I had a tooth infection but didn’t have the nerve to tell me, on a recent medication review I mentioned I had T A to the Doctor doing the review and he asked a training Doctor sitting in with him if it was a virus she was horrified and took over the rest of my appointment and told me how lucky I was to have seen a Doctor a couple of months before who knew about the condition, it certainly doesn’t give me much faith in the Doctors, luckily I have a good consultant that I see at our hospital. What dose Pred do you take now? Does that also mean you have been taking the Alendronic Acid for all that time as well?
OMG - no wonder GPs miss it is there! And I can't believe amaurosis fugax (transient loss of vision) wasn't taken seriously as that is a sign of stroke.
I've been on 15+ recently because of a major flare due to stress but I'm having a PET-CT scan next week so have been reducing quite quickly for that and got to 10mg last night. So far I feel OK so the flare must be subsiding or it wasn't all PMR pain I had. Pred worked though! I took 4 doses of AA - before discussing it with a different GP. We agreed to wait until I had a dexascan which was fine so I never took at again. I have had 2 more dexascans and the bone density had hardly changed even after over 7 years on pred. It doesn't always happen.
I ate gluten-free for a long time as I have an allergy to something in wheat starch and g-free was the only way to avoid wheat in the UK then. Here where I live now there is a lot of use of spelt and kamut which are both OK for me despite being ancient forms of wheat. Rye is fine too as it isn't a guten problem. But I eat low carb - no processed carbs at all, no added sugar, no fruit and reduced root veg, but loads of salad and above ground veg, meat, fish, eggs, cheese etc. Gluten may be a factor for some but I think it is more likely to be cutting the wheat and carbs that makes the difference. Some gluten-free recipes happen to also be substitutes for carbs - cream or yoghurt and an egg for a sauce instead of a white sauce with flour for example.
I found that after the initial flurry of high Pred (not much fun but a blur) and getting down to about 30mg I felt pretty rubbish. The anxiety and over emotional state of higher doses was debatably better than the slump to come. I put this down to feeling the accumulation of Pred side effects, feeling weird, puffed face, jitters, weakness, sleeping 2 hours in the day, I then had the grief of my body suddenly broken. 48 hours Pred diagnosis I was living my normal hectic life, oblivious, so it was like a car crash. At this point it was becoming clear that going back to work might not be happening. Whatever organic changes were feeding in didn’t help and at various points I’ve had enough, and wanted my life back and it wasn’t happening, with no end date. The stress of having to become an expert in one’s own changed physiology and diddly squat support or recognition from the medical world, that kept trying to scare me into reducing faster, was the cherry on top. Actually, no, it was the frequent, “but you look fine” that was the cherry. I have always thought that as a whole (with notable exceptions) the medical profession avoids shining a light on suffering and I’ve lost count of how many souls think there is something amiss because they feel downright miserable, shocked and done in. “But you’re getting better, you should be happy!”
Having worked with long term ill people is that it often hits some time down the line when it starts to get better, eg after cancer treatments finish. Sometimes I think it is the expectation that one will feel great or that in the early or high dose periods one is just surviving and there is no resource available to process the enormity of the change. When things improve, I think the body brings out the file that has been on the bottom of the pile called “emotional fallout”.
Finally, if you are someone who doesn’t absorb all of the Pred, 10mg may be nudging you into the low adrenal phase which can cause another bumpy ride emotionally.
Who knows? There may be a chemical/physiological element, but it doesn't help when our best friends respond with bollocks such as: "well we all have aches and pains, don't we?" or "you'll feel like a new person if you lose 20kg ..." or " you're looking well ..." I'll stop here before I use profanities .
So true.....I heard this from my own sister. It hurts.
I call it the black crow. He just alights on my shoulder and everything feels dark. My OH is better with tears than snarls, so that’s one good thing. This crow flies away for no apparent reason at times, thankfully.
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