Now I know why I am feeling so Ill.: I have just... - PMRGCAuk

PMRGCAuk

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Now I know why I am feeling so Ill.

PMRSUE profile image

I have just completed a month at 10 mgs of Pred.....or so I thought.......I realised this morning that for the past 10 days I have been taking 2 mgs per day instead of 10 mgs. The 5 mgs are usually in a pink box and the 1 mg in a brown and white box. It seems that the 1 mgs I collected from the chemist last time were also in a pink box. So instead of taking 2 x 5 mg, I have been taking 2 x 1 mg!!!! I have been cold, slightly breathless, dizzy, ears ringing and overwhelmingly exhausted even though I sleep well. I made an appt to see my GP next week as I thought there must be something else wrong with me apart from PMR and Bronchiectasis. So mystery solved, almost, but interestingly, I haven't had a return of any pains even at 2 mgs. Could it be that the PMR isn't there any more? I am confused as I have had a quite a few flares over the past three and a half years trying to reduce the Pred and have never gone below 5 mgs. Any thoughts?

54 Replies

Discuss this at length with your doctor, but I wonder if you need to go back to 10 mgs having endured the cold turkey. It might be a good idea to schedule a Synacthen Test whilst artificial levels of steroid are so depleted in your body. There might be a way of turning this to your long term advantage.

I have been nearly caught out with the changes in the boxes and even the size of the tablets. How the less able manage, GOK.

PMRSUE profile image
PMRSUE in reply to SheffieldJane

Thank you SJ for your advice. I have taken 9 mgs today and will carry on at that dose for a few weeks to get back on track. I will see the doctor anyway and also email the consultant. I feel so weak I really can't stay at 2 mgs and wait for a Synathcen test. What does GOK mean?

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to PMRSUE

I would say “God only knows”!

Oooh I seeee

SheffieldJane profile image
SheffieldJane in reply to PMRSUE

God only knows. I often think of the elderly and disabled when I’m struggling with my tablets.

The weakness could well be from lack of Cortisol because your own Adrenal glands have gone to sleep. I have just had a short Synacthen Test and my results show that I am Adrenal deficient, which explains a lot of my weak, tired, dizzy symptoms. I am on 6 mgs, diagnosed March 2016. So less time than you have been on Pred and pain is the least of my symptoms too.

PMRSUE profile image
PMRSUE in reply to SheffieldJane

Did you have to wait until below 7 mgs dose of Pred before they did the Synacthen test and what did it involve?

SheffieldJane profile image
SheffieldJane in reply to PMRSUE

They put a Cannula ( spelling?) in my arm and took blood for a baseline figure ( I was 24 hours free of Pred). They then added a Adrenaline stimulating hormone ( can’t remember what it is called). I sat and waited for 30 minutes. I was warned that I might feel sick and dizzy, I didn’t, in spite of being very suggestible. They took bloods again to see how my Adrenal glands had responded. That was it. I rang up for the results and although my Adrenal glands had responded, they fell short of the optimal levels. I was advised to stay on steroids ( duh!) I have great hopes that they will continue to improve. I am on 6 mgs of Pred which is on the high side for the test. I do have the symptoms though. Scouring the Internet to interpret my numbers, can’t find anything I understand.

PMRSUE profile image
PMRSUE in reply to SheffieldJane

Thank you SJ.

Jane I have been trying to find out what is happening with you but I don’t think you can have seen my messages. I’m sorry your adrenals are playing up but maybe they are just slow to wake up. Maybe they will surprise you and roar into life. I can imagine the ghastly weak feeling xxx

Sorry, I didn’t think I’d missed any. X

I think I sometimes don’t see your posts I have no idea why xxx

Follow me. I follow you. Then you will see how banal my contributions are. 😉

Banal? No!!!!! You have just told me about the synth test and I had wanted to know that for ages. But it’s not that. I like you. Xxxxx

Ditto!

It’s been lovely making such great friends here. I know it’s very different to real life. But it’s very precious non the less xxxx

Have you been specsavers lately daisychain 😱 X

Haha Margaret yes! I love them💁‍♀️ I always buy the cheap glasses though. I am so bad at looking after them it would be stupid to spend a lot

Not that long since I had my eyes tested and was surprised to know they have not changed !! But eye clinic is another story ,up there next week again. Just had my first good nights sleep !!! A wee bit of pain but that's all ! Hoping today is improving again ---- watch this space x

PMRpro profile image
PMRproAmbassador in reply to PMRSUE

If you really don't have any PMR symptoms you really might even be fine to just take 8mg - and that puts you 2mg further on to zero. The pred won't "catch up" the 10 days without.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Hi,

What you describe certainly sounds more like Adrenal problems rather than PMR, so maybe your PMR is on the wane. It would be nice if the PMR has gone, and it may have, but don’t get too excited. Some people get to zero, feel okayish for a while, and then it reoccurs.

You do need to go higher to help the symptoms you describe, but not sure what level, 7.5mg may be enough (that’s roughly the equivalent amount of cortisol that your body makes) but you do need to get medical advice.

PMRSUE profile image
PMRSUE in reply to DorsetLady

Thank you Dorset Lady for your advice. I have gone back up to 9 mgs which is where I should be and after a month will toggle the dose from 9 to 8 for the next month as the consultant advised. I will email her anyway about this episode. Thank you again for your help and thoughts.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to PMRSUE

Good idea.

Please let us know how things go.

PMRSUE profile image
PMRSUE in reply to DorsetLady

Will do. Thanks again.

Oh Sue, no wonder you felt so poorly! I’m sure you’ll pick up now you’ve increased your dose. The Pred Tablets are pain all being white, unless you get the enteric coated ones!

Re Janes GOK - God Only Knows 😉

PMRSUE profile image
PMRSUE in reply to

I think I might ask the doc about the coated tabs to avoid any further mistakes. Thank you.

PMRpro profile image
PMRproAmbassador in reply to PMRSUE

Just get the pharmacy to label the boxes in thick felt tip pen. If you are fine on the ordinary they do have some advantages when reducing. The enteric coated take a much longer time to get into your system.

PMRSUE profile image
PMRSUE in reply to PMRpro

I have learnt my lesson the hard way and will label them myself, a good idea. Thank you.

PMRSUE profile image
PMRSUE in reply to PMRpro

I didn't know that. Thanks again.

Good that the mystery has been solved. The tablets and the boxes are a nuisance - just to keep us on our toes? !! Xx

PMRSUE profile image
PMRSUE in reply to Jackoh

First mishap in three and a half years. "Must pay more attention" as our teachers used to say

If you get the gastro-resistant tablets, they are different colours which really helps to sort them out. 5mg is red, 2.5 mg is brown and ones are white.

PMRSUE profile image
PMRSUE in reply to suzy1959

Thank you, will try and get those although I have heard they are more expensive and what with the cut backs etc......we shall see if I can catch my doctor on a good day!!!

xdbx profile image
xdbx in reply to PMRSUE

I asked my GP for them recently and got them, no quibble. I take them at bedtime (10pm) so they kick in around 2am which studies have shown is the optimal time to take Pred i.e. before the inflammatory cytokines are released around 4.00 - 4.30 am. I can take them without food, just a glass of water and they’re different colours. Perfect!

Crossing my fingers for you... 🤞

PMRSUE profile image
PMRSUE in reply to xdbx

Thanks xdbx. I see that you and many others on this forum take their Pred at night. Neither the GP or Rheumatologist have ever suggested this for me. I always take mine with breakfast or soon after. When I see my GP next week, I will ask her.

piglette profile image
piglette in reply to PMRSUE

Some of us take Lodotra and they say that should be taken at 10pm at night, other pred it seems they suggest taking it in the morning.

PMRpro profile image
PMRproAmbassador in reply to xdbx

Enteric coated pred taken at bedtime won't kick in about 2am - that is Lodotra, different stuff. Enteric coated pred takes 4 to 7 hours to be absorbed depending on whether it is taken with food or not. It must pass through the stomach and get to lower down the gut before the coating, which is resistant to gastric acid, will break down and release the pred inside. Then it must be absorbed. Since only prednisolone is made with enteric coating it doesn't have to be processed by the liver.

xdbx profile image
xdbx in reply to PMRpro

OK that’s interesting. So I wonder when you think might be a good time to take them in view of the 4am-ish cytokine release? I’m guessing the absorption time is longer with food?

PMRpro profile image
PMRproAmbassador in reply to xdbx

Probably - they'll hang around in the stomach a bit longer.

When is best? Depends on you - is it working OK as you are doing it at present? That is all that matters. If you are stiff in the mornings - try taking them a bit earlier until you find the best time for you.

xdbx profile image
xdbx in reply to PMRpro

Yes working fine so I wasn’t even questioning the timing. Thanks for the tips.

I think you have done brilliantly. I stare hard at the bottles and the labels like an ocd person ( which I am a bit of). So I read “ 2 times a 5. Check”. And eat them Then say “ok. 3 times a 1. Check”. And eat them. It’s so easy to do what you did so don’t beat yourself up!!! Xxxxx

PMRSUE profile image
PMRSUE in reply to Daisychain12

Yes, Daisy Chain, I am also a bit OCD, but got so used to pink box 5 mgs and brown and white 1 mg,I never checked but will double check in future as don't want to feel like this again. x

arthur463 profile image
arthur463 in reply to PMRSUE

There are so many colours in the rainbow - and so many shapes in the universe.

So why can't the pill manufacturers make less confusing pills? - usually round white ones.

PMRpro profile image
PMRproAmbassador in reply to arthur463

Always comes down to cost in the end...

PMRSUE profile image
PMRSUE in reply to arthur463

Very true....how about red hearts and yellow sunshine shapes....

PMRpro profile image
PMRproAmbassador

Possibly it is gone - or you feel so unwell with the low adrenal function you haven't time to notice the PMR!

It is only too easy to make mistakes with tablets,l hope that you wlll soon feel much better and find a level now that suits you. I increased my dose recently because of a flare,l do not feel as well as l had been and wish that l had not tried to lower my dose ,l had managed OK for six months on just 3 mgs.,but my doctor was pushing me to go lower and l now feel almost as bad as when l first had PMR. I have not seen a rheumatologist but l am going to try and get a referral as my legs are being a problem and it could be something other than PMR. The GP’s at my surgery seem to be cutting down on blood tests and referrals ,so l am not very confident that much will be done.l wish they could see some of the posts on this site,it would keep them more informed about PMR /GCA.Good Luck PMRSUE,please let us know how you get on.

HeronNS profile image
HeronNS in reply to Grants148

I hate that the medical people make us keep going down when we are already at very low doses. A similar thing happened to me last year when I was at 1.5 and told to use up my tablets, stop and see what happens. In the end I never did stop but the attempt to get to one, never mind zero, caused a flare and it took a whole year to get back to 1.5. One of the things I noticed, which I'm just now remembering because of what you said about legs, is a period of time during this past year when I felt like I was walking through water. I usually have no trouble increasing my pace, if only for a little while, to keep up with speedier companions like my son. For a while I found I simply could not, had to swallow my pride and tell him I could not make my legs move any faster.

Hello Grants148. Sorry to hear that you are feeling so unwell. Could it be withdrawal symptoms rather than the PMR coming back? From sone of the comments on this forum it seems it is difficult to tell them apart.

Best wishes.

Thankyou both for your messages,l am afraid that it could take me a long time to get back to where l was ,on 2mg.of Pred., it was 21/2 years to taper down to that.lt could be withdrawal symptoms ,but l felt quite ill for about a week and Heron described just how my legs have been feeling.They are still not right,really stiff and numb,with swelling above my knees,l am sure we would all like to come off the steroids but l think doctors have to accept that there is always a risk of ending up back where we started.l wish you both a good outcome wherever you may be on your PMR journey.

OMG PMRSUE. Can't imagine how you were feeling. I forgot to take my pred today, but my body reminded me by seizing up about three hours after I normally take them. It didn't help that I had a CT scan during which I had to hold my hands above my head! Strange that in your case your PMR symptoms were not present???? Tends to suggest adrenal issues. Would be very interested to see what your GP / Rheumy makes of it. Please let us know.

PMRSUE profile image
PMRSUE in reply to Marilyn1959

Thanks Marilyn. I will ask Rheumy about all this at my next appointment in November. Hope you are ok.

P.S I got GP to prescribe coated pred by saying I wouldn't need Omeprazole for my stomach if I had gastro resistant steroids. He agreed because the cost of coated pred was offset by the cost of Omeprazole no longer required!

It must have been dreadful. I'm so pleased you got to the bottom of it. It is a warning to us all that the most serious effect of prednisolone is adrenal suppression. PMR isn't likely to kill you but an Addisonian Crisis (lack of steroids) certainly can.

PMRSUE profile image
PMRSUE in reply to Whippet1960

Thanks Whippet, I have never felt so unwell but getting stronger now I'm back on 9 mgs for the next 4-6 weeks.

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