An update...early days: Hi all. I mentioned earlier... - PMRGCAuk

PMRGCAuk

12,667 members23,009 posts

An update...early days

KinnearD
KinnearD

Hi all. I mentioned earlier that I was starting 15mg prednisone earlier this week. Started on Monday rather than Saturday since I missed the pharmacy's opening hours. By Monday I was keen to start since the early waking about 4am with pain was escalating. Though I felt better in myself, mid etc Mobday afternoon. Tuesday morning was a big shock because the pain abd stiffness in my hips and shoulders meant I couldn't get out of bed to the shower without my husbands help. Then he understandably headed downstairs. I couldn't dry myself or even sit once I got out of the shower! I know this is pretty normal and no big deal but it was pretty shocking being so incapacitated. Husband happened to return and helped me though I was a blubbering mess and I think it was a wakeup for us both. Afternoon and evening I was much better but didn't look forward to going to bed. Anyway, today is day four and while the mornings have not been quite so difficult I contacted my GP to ask if I should increase to 20mg this morning if there was no improvement. She said yes and to update her again tomorrow. A longwinded tale. I have taken 20mg this morning and hope there is the dramatic change that I read about. Also how much do you need to eat prior to taking pred in the morning. Currently I continue to have my latte espresso in bed plus a couple of dried figs and then take the pills. Any contraindications for the milk or coffee? This forum is a godsend. So many of you with such severe situations that I feel like a wimp. Scary though...independent me!!

20 Replies
oldestnewest

O dear KinnearD, what a shock it is, to be so limited in your movements. I remember so very well it happened to me some 2 years ago. It is a lifechanging event. But reasonable sure it will get better, not tomorrow, probably not next year, the day will come when you look back and leave it all behind. That does not help you now I realise there lays a road before you. I wish you all the best en the power you need, and here is a virtual hug from me.

Thank you for your support. I think right now this is happening because there's not enough initial Pred to relieve the PMR symptoms. Hopefully we don't take Pred and still experience all the disability of PMR. Hopefully....

HeronNS
HeronNS in reply to KinnearD

If a dose of 20 mg (or at the very most 25 mg) doesn't deal with the symptoms then the diagnosis of PMR must be called into question. But give it a week and hopefully within less than that you will feel a massive improvement. Not everyone experiences overnight miracles and for a few the full benefit of pred doesn't really kick in for a couple of weeks.

That is such a classic description that many forum members will recognise, right to the blessed relief that Pred can bring. It sounds like you have an understanding doctor which is a good bonus. If your regime for taking Pred works for you then stick with it. There are no contraindications about milk. I have always taken my Pred with live plain yoghurt and a little honey. The Omeprazole that I was initially prescribed caused more problems than it helped. If I do get indigestion, I just take over the counter remedies like Rennies and it quickly goes away.

Stick with us. This forum has made my journey so much easier. I am now down to 6 mgs and was diagnosed in March 2016 - I could hardly walk by then.

Thank you. I figured it was classic having read the posts here ...just a shock to experience it. Dear husband just came up to suggest that the beach looked lovely if I felt up to it! I know it eases by early afternoon but right now in bed midmorning anticipating the shower and dressing seems challenging enough.

I take my prednisone at 2 am with a small glass of milk. I have it at bedside and milk is in a stainless steel cup so it’s still cold. I’ve been doing this for over a year now without any problems. I don’t seem to have any problems (yet). Most nights I’m able to go right back to sleep and am ok getting up in the morning. Actually mornings I am at my best with this aweful disease. By 1or 2 pm I do need a nap, that seem to be when the fatigue kicks in. It’s like what I’ve heard on this site, do what works for you best! And good luck and a virtual hug. I’d be lost without the site ,that’s for sure! maryanne

KinnearD
KinnearD in reply to MaryA_

I had wondered about taking it in the early hours. Meanwhile I'll stick with before 8am while we figure the correct initial dose. Thank you for your response.

PMRpro
PMRproAmbassador in reply to KinnearD

Earlier than 8am would probably help a lot - not necessarily the 2am slot. The new dose of inflammatory substances is shed about 4am or soon after. The sooner after that you can take the pred the less time the inflammation has to take hold - so the less work the pred has to do. Many people wake early, say 5 or 6am and take their pred and then settle down for another couple of hours by which time the pred is starting to work. That way you get a full decent morning - rather than feeling at your best only later in the day.

KinnearD
KinnearD in reply to PMRpro

I'm waking early so perhaps if that happens I'll take the pred with a full glass of water and not fuss about needing the dairy drink etc. Also the low carb/ketosis diet I'm familiar with them and have restricted carbs since getting diagnosed. Although I will probably move to a primal or ketosis diet to help manage weight gain, I've thought it wiser not to try and get into ketosis with the ensuing adjustments until the initial pred control is achieved. That seems like enough for now. Your thoughts.

Please look into an antiinflamatory diet like Keteos. I also take turmeric and CBD oil. I feel for your pain

KinnearD
KinnearD in reply to Qubbie

Thank you. I am following a careful low/moderate carb diet, minimal salt, above ground vegetables and protein. If necessary I will go on primal or keto just not keen to make major changes at this transition stage getting settled on meds.

I just knock my prednisolone back with water, as does PMRpro I believe.

At first I took it with a late breakfast/ brunch as yogurt does not agree with me, and before 11am is the ONLY rime in the day when I am not starving hungry Then when I read it is better to match the adrenal’s pattern I took it at 8am with a rice cake.

But rice cakes taste of nothing at all , so I now just have water, and I’m ok at the moment from point of indigestion. Long may it last.

PMRpro
PMRproAmbassador

It is said by pharmacists that a glass of milk is adequate to take pred and any patients use yoghurt.

It sounds as if Monday was better than you have been - so what did you do? Your muscles remain intolerant of activity and even a bit too much will cause severe DOMS (delayed onset muscle soreness) which many people get after trying to do something without training. And it takes much longer than usual to go away.

KinnearD
KinnearD in reply to PMRpro

Hi there. Monday was the first day on 15mg pred and I've looked back on my journal where it was more an improved mood. I seem to have had a quiet day. The Tuesday that was the worst was the second day on that dose. So now there's been 3 × 15mg and 1 x 20mg this morning and feeling reasonable...just a little stiff and I'm not doing much at all. A very basic stroll or two. I'm very wary of overdoing things and needing yet another increase. Hoping that tomorrow am may show some evidence of the benefit of the higher dose and that is deemed enough. Let see. I'll keep you posted. Thanks so much

PMRpro
PMRproAmbassador in reply to KinnearD

By no means everyone gets the magic response - probably because to get it they would have needed a higher dose. An Italian study found that 75% of patients would get a good response from 12.5mg in a month - smaller women did better than the larger men. But the dramatic response is what fixes in everyone's mind so that is what too many assume is the rule.

KinnearD
KinnearD in reply to PMRpro

Oh wow that is reassuring. I'm 5'2 and not heavy...perhaps just needing to be patient.

PMRpro
PMRproAmbassador in reply to KinnearD

If you don't learn anything else with PMR you will learn patience!

However - if it takes very long or you need a much higher dose, then your doctor MUST bear in mind it COULD be something else. PMR is not the disease itself - it is the outward expression of an underlying disorder and there are several potential causes, some of which also respond to pred, just not as well. They mustn't be missed.

KinnearD
KinnearD in reply to PMRpro

Well since I was awake at 3am with aching upper arms I took the 2nd day 20mg dose of Pred. Waking at 7am there was some minor aches however virtually full range of movements. I'm taking it easy, emailed the dr as she requested giving the update. I haven't heard back yet. Feeling happier that this may be a better start dose for me Oh boy, I'm feeling thankful that pred exists now. Easy, easy, slow, slow, I know.

Oh and taking the dose early made it far easier to get moving earlier...thank you.

Hidden
Hidden

Hello KinnearD

Welcome 🌺

Yes, that terrible overwhelming shock that you cannot move, my arms were in lockdown, it was only that l had an electric toothbrush that l could clean my teeth, couldn’t wash my hair or dress myself etc, etc!

It took 3 days for the Miracle of Pred to reveal its self & l had a ‘frozen’ shoulder to begin with & that was freed up within the week.

So don’t despair, give it until Monday & Rest, Rest, Rest over the weekend to let the Pred do its thing!

Actually you may find laying on your bed more restful for your body, lots of pillows to support you sitting up or semi prone & a bell to summon DH (Darling Husband) or tell him to keep his mobile phone on!

Wishing you well & am hopeful your next post will be how much you’ve improved!....

Have a Restful Weekend 🌺

Mrs N x

You may also like...