Making decisions at 5mg., 18months into treatment.

[Hindags]

I have been fortunate to date getting to 5mg in about a year and a half without too much difficulty above the norm. But lately my emotions are more erratic than ever and I find myself more irritable and more sensitive and more vulnerable than I can remember. I've always have had a fairly obsessive approach to making decisions and the process can make me anxious, but have been able to sort through what was important and what I wanted and move on. Not so much these days. If I were my own patient I would say that I'm on the cusp of depression, or developing an anxiety disorder-- but my sleep is good, self worth ok, appetite ok.

My current stumbling block is about buying a car, of all things. My old Toyota is 14 years old, will start needing costly repairs and doesn't have the new safety features I think I should have at almost 77. I've reviewed our finances and know it is affordable. But instead of focusing on the positive aspects of things, I find myself hesitating to move forward for fear of making a mistake.

The details I'm obsessing about are unimportant. It's just the swings that are really painful. I wonder if anyone here has gone through this at this stage in their treatment. I ask myself whether this is perhaps due to unstable adrenal function that is over and undershooting what is needed to guide me smoothly through stress. I ask myself whether this has more to due with existential issues of vulnerability that PMR and this stage of life have raised.

I haven't experienced much Pred. Head. As a matter of fact I felt, in general, sharper than I had in a long time once I started on Pred. I am able to compartmentalize this stuff and haven't felt this affecting my work. I can still count on controlling and reading my emotions in my work. But I don't like what I'm feeling at all when I re-enter my own life.

Any ideas?

[SheffieldJane]

I really can empathise with those feelings, you express it so well. I am so glad that I landed on this site.

Hindhags - BUY THE CAR- 🚘

[Hindags in reply to SheffieldJane]

One thing for sure. I am much more understanding of all my patients, present and past, who haven't been able to have confidence that their emotional brains were good guides to what would be wise decisions.

[Hidden]

I have seen other posts when people get to lower levels of pred and experience such anxieties. So perhaps if you didn't have much pred head it could be that. However buying a car is a big investment... beaten only by a house usually.

I can relate regarding choosing a new car. I think we shared messages about you getting a new car when I got mine a couple of months ago.

I have a motability car that is funded through my disability benefit and must confess I started looking at replacements on the mobility site at least 12months before I had to choose a new one. Like you I didn't want to get something that wasn't appropriate for my current needs. I went in circles for months going between about 6 makes of car. I was on about 15mg at the start and 9mg when I eventually got it. I looked at the reviews of the cars and eventually choose half a dozen that all had 4 or 5 stars. I then ignored it for month or two because it was stressing me. I then removed the unrealistic cars...like the arbarth car- basically a small fiat with a sports engine. I looked at the different categories that were important for me in the reviews and then booked test drives. The first one I drove I did liked and it had good reviews, so I dived in and signed up. I haven't regretted it. It had the safety features I wanted...the light steering and a good strong automatic gearbox and enough power. It has collision alert if you approach a slowed car to quickly (but doesn't scare you) and it has the reverse beep beep sound. It does come with lots of bells and whistles but us the top of the line in the model.

Decide what you want the car to have- all come with power steering and some computerised things I am afraid. But you don't need to use most of them. I use half of them and then only because I am gadget girl. It's goes forward and backwards, turns easily and stops when I ask it.

Sorry to Witter on. Just wanted to show it is a bit stressful deciding to spend the money!! 🌻🚗

[Hindags in reply to Hidden]

Yes, sounds like my process. Stressful at a time we are supposed to be limiting our stress. Right now I'm leaning towards the Toyota Avalon 2018, on steep sale, easy steering and comfortable seat for my back, the same safety measures you have. Bigger than I want. Hybrid. Sale ends tomorrow. Am working with a broker. That was supposed to have made it easier, but I haven't ever done that and though he was recommended highly by family, I'm not sure it hasn't just added a layer of complication. It is another new skill set.

[Hidden in reply to Hindags]

That's a big step and at least you know what you would like. You need it so get that sale price !!! 🌻

[piglette in reply to Hindags]

I have still got a Toyota Solara registered in 1997. I keep thinking I should change it, but it is comfortable, it goes and it is cheap to run!

[Purplecrow in reply to Hindags]

Sales come and sales go...dont let broker/car salesman pressure you with threat of sale ending...theres always another one at the dealer down the block tomorrow!! I hate car buying!

I empathize with the anxiety...it was instant onset, pervasive, and totally out of character for me. I finally got drugs to help me through that little nightmare. Lasted about 3-4 months. All better now🤪

Kind regards, Jerri

[PMRpro Ambassador]

Lack of adrenal function - almost certainly. You are well down into the range where your adrenal glands have to get up and do something and it takes quite a while for the entire HPA axis (hypothalamus, pituitary, adrenals) to settle down. The hormones and things involved have to get back into balance and it all swings around for some time.

[Hindags in reply to PMRpro]

Thank you again and again. Whatever observing ego I have left given all this emotionality has led me to suspect that my biology is playing a pretty big part in this.

Hope that HPA gets its act together.

[Twopies in reply to PMRpro]

I’m in the same boat as the poster. I’ve read over and over about at 5 mg it takes awhile for things to settle down...how long, do you think? Months? How many on average? Years? The rest of my pmr/pred journey? Thanks! (Ps: I have a 1995 5 speed Toyota—so hard now to drive with the clutch and shift gears!)

[PMRpro Ambassador in reply to Twopies]

Some people say that it takes a month for every month you were on pred (so I have no hope) but I think it doesn't really take that long for most people. There's no way of knowing really - patience...

My Passat is also a clutch and shift gears - I have no desire to have an automatic, scared me to death the first time we got a hire one in Canada. I love driving and getting the gears right up and down mountains and hairpin bends

[Twopies in reply to PMRpro]

A month for every month—is there an emoji for beating your head against the wall? I’m just so old now—there seems to be no end to this. Thank you for your prompt reply; appreciate it always

[PMRpro Ambassador in reply to Twopies]

I doubt it really takes that long for most of us, I think it is probably a figure for people who have been on pred for months rather than years. But I haven't given it much thought - it will be what it will be and as long as the pred keeps me functioning in the meantime that is fine by me.

[SnazzyD]

Well for what it’s worth, I’m on 5mg (GCA only) and today I was planting my dahlias out sobbing like an idiot over something minor. This bit of the Pred ladder is almost as bad as the top end. It’s very tiresome.

The car - I would have thought as long as it’s got a wheel on each corner, you can get in and out, reach the pedals and it goes it should be ok? You’ll probably be so pleased you did.

[Hindags in reply to SnazzyD]

I don't think I'm in a place to enjoy. Alas. I've always been good at ignoring things I don't like about something I generally like. Just not these days.

My old car runs and is comfortable and I can reach the peddles and see over the steering wheel using a cushion.

Thank you for sharing your experience in the garden.

I don't make a lot of sense to myself. When I thought I could get a silver with light grey interior I was delighted. But dark grey with black...the thought feels yucky. The fact that my old car is silver with medium grey interior is not lost on me. Lol.

[PMRpro Ambassador in reply to Hindags]

We have an elderly car - 10+ years old. It's filthy inside (because we just don't clean it often enough and car valetting here costs megabucks if you can find one) but it has not given any problems yet. It is a diesel and RHD so worth nothing here and not a lot in the UK - we will be running it until it is more expensive to repair it than is worth it.

But above all - we like it. We had driven our previous Passat and loved it, when it was 7 years old OH felt it needed replacing ( I didn't and it ran happily for years longer) and we got this one. Which we loved on sight/drive too. And I like the colour - a light silvery blue. Not silver, not white and definitely not black (far too hot in Italy)...

[Hindags in reply to SnazzyD]

How were the higher doses of Pred for you? I have PMR only and 20 was the top for me. I don't remember feeling this. Irritable and impatient from the to time, but not this.

[SnazzyD in reply to Hindags]

My highest was 60mg and until below 15mg it placed a magnifying glass on any emotions and it was a roller coaster. Then it improved to about 10 and now the wheels have fallen off the wagon again.

[Dream21]

I can empathize with how you are feeling. My emotions were running rampant during those last 10 mg taper. Also, I was extremely tired. Be gentle with yourself. It is hard to make decisions when you do not feel well. Know that others support you and know it can be a difficult disease to cope with. Give yourself permission to cry when needed and then do something to feed your soul.

[Mai45]

Hindags, I’m sorry I can’t help but want to thank you for helping me.

Like you, nearly 2 years in, 18 months of treatment (took 5 months to get a diagnosis confirmed) and down, reasonably comfortably, to 4.5mgms. Definitely a case of so far, so good, and realising from this board that I’ve been extremely lucky compared to most.

Yet your first paragraph rang so many bells. Worrying more than before (why?), feeling lonely in a way I haven’t previously, and hesitating about decisions that are really quite clear cut if I’m logical. Recognising if I’m not careful I could easily slip into a depression, and without any logical justification.

All nonsensical, but just reading that someone else at the same stage of treatment is finding similar behaviours surfacing is a great comfort - let’s hope it doesn't last long - and good luck with the car.

[Hindags in reply to Mai45]

Thank you too. It helps.