still don’t understand and very confused new

[Sueloobyloo]

I was diagnosed with pmr in May this year, yesterday I went to see a rheumatologist for the first time and she seems to think my pain etc is probably wear and tear and is now tapering me off the pred, which I am glad, but also afraid things won’t work out. I was also told not to take my preds at night as it will have no affect, but doing that, stopped me from eating a lot in the day. She said that she will write to my GP and then sent me for some blood tests and I am now awaiting for the results and still as confused as ever, any advice would be very much appreciated.

[SnazzyD]

Hello, did they explain why they think this and wear and tear to what? Muscles, ligaments, joints? How did they explain your flare when the dose dropped before or has that been swept under the carpet?

Also, can explain what you mean about taking Pred at night stopping you from eating a lot in the day? What kind of diet are you on.

[Sueloobyloo in reply to SnazzyD]

I am really not sure what she means, I’m as baffled as anyone, I know I have wear and tear like any 67 year old, but my blood tests show inflammation etc. My diet is a lot of fruit and vegetables, whole meal bread, chicken, ham and roast dinners, oh and salad. I tend to want to eat more if I take my pred in the daytime, so I usually take my pred at night before I go to bed. I’m just so confused, I feel like I’m not getting anywhere.

[PMRpro Ambassador in reply to SnazzyD]

I imagine it is avoiding the rollercoaster BG levels some people get at certain times after taking pred. I think it is Koalajane who established her BG shoots up in the afternoon so she avoids eating then.

[DorsetLady PMRGCAuk volunteer]

no wonder you’re confused……

Stating Pred doesn’t work at night is incorrect, quite a few take it then. Taking too low a dose is more likely the issue if your pain isn’t relieved….what dose are you on now?

Other than “wear and tear ” which is a cop out, cover all comment what does she think you have, if not PMR?

What symptoms did you have initially to suggest PMR, which I’m assuming GP diagnosed?

[Sueloobyloo in reply to DorsetLady]

I just don’t know anymore, I have pain in my shoulders, hips and head and prodding in my ribs, which I told her, it looks like I have to wait to see what she tells my doctor. By the way, the practitioner’s nurse diagnosed me with pmr.

[DorsetLady PMRGCAuk volunteer in reply to Sueloobyloo]

Sounds as if her ego is getting in the way…maybe not happy NP diagnosed you!

[PMRpro Ambassador]

" I was also told not to take my preds at night as it will have no affect"

Pardon me????? Did she say why? If she means in PMR she's wrong ...

[Sueloobyloo in reply to PMRpro]

She said that while I’m asleep my body doesn’t produce something, I can’t remember what she said, but only that the preds wouldn’t work properly, should I go back to taking them at night?

[PMRpro Ambassador in reply to Sueloobyloo]

I have no idea what she's talking about - except the body doesn't produce cortisol at night but that has nothing to do with the price of butter.

When you take pred at night, 2am is the optimum time but earlier works too, the pred takes a couple of hours to get into the system but it is there for 4am when the body sheds the cytokines, the inflammatory substances that cause the inflammation that causes the symptoms. The antiinflammatory effect of pred persists for anything from 12 to 36 hours, depending on the person, and for most the effect does last until the next dose although it is fading a bit by 24 hours. If the biggest problem is early morning it needs to be in place BEFORE the cytokines appear to reduce morning symptoms. If you wait until after 4am then the pred effect can takes hours to set in.

If taking it at night works well for you, keep doing it.

[piglette]

I have always been taking my steroids at night and they worked like a miracle. What sort of tablet works if you take it during the day, but does not work if you take it at night? Is she on something?

[DorsetLady PMRGCAuk volunteer in reply to piglette]

probably -unfortunately not same wavelength as everyone else….

[Sueloobyloo in reply to piglette]

I thought that also, it just doesn’t make sense.

[winfong]

Unfortunately, confusion is a quite common experience at the beginning of most people's PMR/GCA journey. I know it took me months before I could make any sense of it.

There's quite a lot to digest, a lot of conflicting information, a lot of gaps in information, and very few real experts out there. All I can recommend is that you stick with it, and just try and educate yourself bit by bit as time and energy allow.

I promise that, one day, you'll start to feel a little bit more comfortable with it all. And that will be important, as one thing you'll find with the condition is that you'll have to do quite a bit of self-advocacy. Good luck, and hang in there!