What is happening now?

[Zofitmogelijk]

Good morning all, your advice please. There is a new phenomene and I can’ t find anything in the books or the fora. Is anyone familiar with being soooo cold that nothing helps most of the time it starts in the evening. Put on warm sweaters and socks, extra plaids, but nothing seems to help. Maybe a warm bath but then again, I don’t have a bath and to lazy to have a shower. ‘on 2,5 Mg Pred. Can it be adrenal insufficiënce ? Wish you all a lazy sunday, and Thanks in advance for answering

[SheffieldJane]

Oh dear Zofitmogelijk, get yourself to a doctor quick. That is a typical symptom of Adrenal Insufficiency! In the meantime I would increase my dose to about 5 mgs. If you warm up you'll know. This does have to be taken seriously. Do you have other symptoms such as nausea and excruciating low back pain? That could mean that you are heading for an Adrenal crisis.

I know the weather is cold, but you are talking about that deep bone cold that nothing seems to relieve aren't you?

The Synacthen Test shows whether your Adrenal Glands can produce Cortisol at all. I expect the doctors will do that. But in the meantime the remedy is in your hand - Prednisalone. That's what they treat it with. Some people remain on a low dose forever.

I hope I am entirely wrong for your sake. But get it checked out - urgently!

[Zofitmogelijk in reply to SheffieldJane]

Thank you, Dear Jane ( like your foto and added mine not half as beautiful as yours😉) Yes you are right it is cold within the bones and the nausea is there also. Strange enough wine is not appealing as it was, but even in the middle of the night find myself drinking a mug of hot coffee.I wanted off

Pred asap, since my vision went back to 50 %, meaning soon I Can’t drive my car anymore. I had rather heard something else, but I will double the Pred and inform the rheumy tomorrow and ask for a test. Much appreciate your advice

And Some flowers too, Aletta

🎄🌹

advicetest.Thank yo

[SheffieldJane in reply to Zofitmogelijk]

Hi Aletta, I like your photo too!

Is your eyesight deterioration due to cataracts? What does your eye doctor say?

I have heard that after a cataract operation people see better than ever. I have got them but they are not ready for an operation or something. I think my general eyesight is a bit worse too but I am too mean to get new glasses until it settles. I manage most things though, taking my glasses off and putting them on again all the time.

Going off wine! Now that is serious! You need to get your mojo back and that's a fact! 🍷🤢

Let me know what happens about your Adrenal Function.

Take care! 🙏

[Zofitmogelijk in reply to SheffieldJane]

Hi again Jane, that’s what Specsaver said after testing. Thanks for the encouragement and will let you know what happens, Aletta

[PMRpro Ambassador]

According to this - yes:

patienteducation.osumc.edu/...

A bit of messing about tells me this is from Ohio State University Medical Center - so I'd think it is fairly reliable. And I thought so anyway - just getting something more official!

If you have cataracts that are affecting your daily life - it is time for them to be removed. Under any system...

In the meantime - up your pred dose and see if it helps. Evidence for the GP!

[Zofitmogelijk in reply to PMRpro]

Thank you so much pmr pro, to even in malta taking time for this constructive answer. Have a Good time , Aletta

[PMRpro Ambassador in reply to Zofitmogelijk]

We're only here for the warmer temperatures! "The Book" is at its zenith so every afternoon is spent on that for him and this for me...

[Zofitmogelijk]

And I figure in the evening a meal with seaview. Enjoy!

[PMRpro Ambassador in reply to Zofitmogelijk]

Just possibly! Though last night's excellent restaurant doesn't have a seaview. Tonight's may well do but their windows seem to reflect too much of the inside. At present it is generally warm enough for lunch outside - not so much in the evening.

[Oldman-1]

Hello Z, yes you are not on your own. For us, we have a bath to have a long hot soak ... sorry. Fatigue and tiredness which only sufferers can explain are very common.

[Zofitmogelijk in reply to Oldman-1]

Good morning and thanks. And did you respond to Pred? Early days of pmr, so confusing. But you found the forum, which I hope is helpfull , or must I say assume ? 🎄

[Oldman-1 in reply to Zofitmogelijk]

The consultant is undecided what I have though two previous GP`s have offered their opinion as Polymyalgia. In a written report this consultant has described me as having classical PMR. I have another meeting this Tuesday. If the decision is still confused, I`ll be asking for a second opinion.

[PMRpro Ambassador in reply to Oldman-1]

If the dx is "classical PMR" the logical response is to try the "classical treatment for PMR". Moderate dose prednisolone for a short trial at least. Then review.

[Zofitmogelijk in reply to Oldman-1]

I do hope the gp listens to you and is patiënt, as PMRpro said, Pred is the first choice treatment.

[Oldman-1]

I`m beginning to think the GP`s have a better idea than this supposed Consultant.

[PMRpro Ambassador in reply to Oldman-1]

Sometimes. Sometimes not!

[newgirl73]

I too can feel very cold even when the room temperature is fine. I understand this may be because prednisolone affects functions like temperature control. I can feel very cold in the middle of the morning too. I put on fingerless mittens in the living room and extra layers and at night have two hot water bottles! I hope this is a bit reassuring that you are not alone. I should add that I take Thyroxine every day for a low thyroid level I have had for years, but this extra coldness is quite different and new since starting prednisolone 15 mg daily since PMR diagnosis 6 weeks ago.

[Zofitmogelijk in reply to newgirl73]

New girl, that must be ver uncomfortable, is there an adjustment possible, like having the Pred on an other time, or splitting it.? But I am not an expert.

[HeronNS]

I seem to remember a stage, higher dose than yours, might have been around 7 mg, when instead of having the hot flashes people often complain about I had what I described as "cold flashes" - suddenly feeling really cold. In general I'd say I am cold a lot more of the time than when I was younger, but I've also lost my insulating layer of subcutaneous fat, and the "cold flashes" are a thing of the past.

[Zofitmogelijk in reply to HeronNS]

Hi Heron, Good you are not that cold anymore. Wishes the cold presented as flashes, but my bed feels like a fishtank with icewater and it takes untill 5 o clock in the morning to fall asleep, my thermostateis broken. Thanks for your reaction, Aletta

[HeronNS in reply to Zofitmogelijk]

i still need a hot water bottle. Even in the summertime I often use one to warm my legs which tend to ache once I lie down. Appears to be caused by cold, so I suppose there's an issue with circulation but I don't really know.

[PMRpro Ambassador in reply to HeronNS]

i was going to say "hot water bottle" - greatly tempted tonight having got home to feezing temps after 3 weeks in Malta with night time temps of 15C!

[HeronNS in reply to PMRpro]

We had been enjoying near summerlike temperatures (who needs Malta when you can live on the Riviera of Canada?) but plunged into what feels like a deep freeze (actually seasonal temperatures) the last couple of days. I'm wearing extra layers and definitely need the hot water bottle now.

We don't even have to travel to experience a gamut of seasons over a few days, sometimes a few hours. 😀

[Zofitmogelijk in reply to HeronNS]

I know almost nothing about Canada but I do know you have areas of outstanding Natural beauty.

[HeronNS in reply to Zofitmogelijk]

Climate change has shifted the seasons, at least in Nova Scotia, so each season seems to start later than normal. This autumn we've had mostly milder than normal temperatures, but when it turns nasty it's been incredibly horrible, extremely heavy rains and wild temperature swings.

And I suppose every country has its places of outstanding natural beauty. Personally I find nowhere lovelier or more appealing than the United Kingdom - Lake District, Devon, Yorkshire, Scotland, and on and on! One of my favourite spots which we just passed through one time decades ago was a train station I think was called Malvern.

[Zofitmogelijk in reply to HeronNS]

I agree, have done lots of walks ; such as the coast to coast, in lake district and the North York Moors , Tom in Toul trail in Schotland, camping with the children in Devon and Cornwall and I can go on but I stop since in Holland it is about bedtime. And this is not a class in geography.Were you Born in Canada ?I🍁this is your maple leaf in the indian summer.

[HeronNS in reply to Zofitmogelijk]

I was born in Zimbabwe (then S. Rhodesia). Came to Canada age six via UK, including Guernsey and Sark. And you?

[Zofitmogelijk in reply to HeronNS]

Thank you. I was Born and raised in Amsterdam, and live now, for 30 years already, in a farmhouse, in the middle of nowhere ,so escapes to the country.

[HeronNS in reply to Zofitmogelijk]

Two very brief visits to Netherlands so far in my life, one in 1973, again in 2005. Looking forward to a guided art tour during tulip time 2018!

[Zofitmogelijk in reply to HeronNS]

O Good news for you, I am sure you will have a great time. For warming up you can watch the movie ‘ loving Vincent ‘ ( van Gogh ) you are on tour and won’t have much spare time but if you are in the vicinity of Friesland , welcome.

[Zofitmogelijk]

Let’s all leave for Ibiza untill the winter is over.

[HeronNS in reply to Zofitmogelijk]

I've thought for a long time that spending winter in New Zealand would be a plan. Northern hemisphere winter, of course!