Flare, increased prednisolone: progress to date

[allofaquandry]

As there is so much learning for me I thought maybe it might also be helpful to others to give update on my temporary increase by 5 mgs.

I think I may have reached a turning point. It has been several days now since I increased the prednisolone and each day I seemed to have got worse, with more and more aches and pains and less and less energy, doing the absolute minimum each day. I thought I have really messed up for the family events in a weeks time. I also started to get very occasional stabbing pain in right side of chest (a trigger point for me 5 years ago) and then occasional sharp pains in head. The hot weather has not helped. This morning having my morning coffee at 7am, having taken my prednisolone at 2am, I felt worse than ever! Really tight, heavy, aching legs and joints. I could almost feel it creeping up my legs, getting more and more a hold of me and I got very hot. Everything seemed to be building up! And then....it was as if a bubble burst and it all started to dissipate. It was quite dramatic. I also find i have some energy. I still have aches and stiffness and am slow, but so very different from what was going on before. its difficult to describe the feeling and difference.

Anyway, I know its early days yet, but hopefully prednisolone is fighting this inflammation and is getting back in control 🤞.

Sorry this is so long winded and I am not out of the woods by any means yet, but such an improvement on yesterday.

Thank you all for being out there. Good luck.

[SheffieldJane]

How interesting and a really graphic description of what may be going on. Are you on Entric coated Prednisalone by any chance? There was quite a time lapse between taking your tablets and the ensuing relief. Clearly it would be beneficial to stay at this dose for a week to 10 days before dropping down to perhaps a bit higher than before.

[allofaquandry in reply to SheffieldJane]

Yes, I agree, definitely staying at this dose for the duration and go back to 7, or perhaps 7.5mgs.

No, I'm not on entric coated Prednisolone, and felt very wary about making the post, and about whether this is progress or a hiccup, it seems such an unpredictable thing. WRT the graphics, I thought I would make the post while it was all so fresh as I tend to rapidly forget how things felt. It was really starting to feel like a vice like grip this morning, and then ... a slow release, and with it some energy.

Taking it very easy today and hoping that this feeling will be maintained tomorrow. Holding my breath. I read on this forum someone referring to the psychological as well as the physical and emotional challenges of PMR/GCA: it really can be demanding, So good to have this forum to see others experiences and to have feedback and advice. I wish I had known about it 5 years ago, but thank goodness I do now.

[allofaquandry in reply to SheffieldJane]

PS The only possible Entric coated tablets are a couple of yellow coated 2.5 mgs tablets and I assume they are not as they don't say so on the packaging, tho' I don't know why they are yellow unless to help us identify from the other strengths.

[SheffieldJane in reply to allofaquandry]

Mine all say gastro-resistant on the box. They do take 4-6 hours to kick in for me so 2 am is a pretty good time to take them. I just wondered. These little sunshine times of feeling normal are very precious ( and rare, in my experience anyway).

[PMRpro Ambassador in reply to SheffieldJane]

Immediately before bed is an even better time to take e/c pred. 2am is the ideal for plain pred.

[SheffieldJane in reply to PMRpro]

Bit concerned about suddenly snapping awake ready to party too early. ( I wish)

[PMRpro Ambassador in reply to SheffieldJane]

But they won't be in your system for 4 or 5 hours - so unless you are in bed about 10 .... The ones I take do that and they don't wake me - I do wake up often but at odd times, not pred-related.

[PMRpro Ambassador in reply to allofaquandry]

2.5mg tablets can be yellow. 2,5mg enteric coated are a gungy darkish brown!

[DorsetLady PMRGCAuk volunteer in reply to allofaquandry]

Some brands are - but it would say on the packaging if they are EC or GR

[sidra1968]

Glad you feel better. During my flare in late June after I tapered..it definitely took a good week before I felt better after upping my dose. I am on a high dose, was supposed to start my second taper attempt this week (since my ESR finally came down) but slept on a different bed at an overnight nanny job and lo an behold..some pains in the hip area came back very quickly, so I am waiting at least 5 more days to get that calmed down before I try again. I am lucky to have GP who has been very good about all of this. Give it a little more, but hopefully you broke through to the other side!

[allofaquandry in reply to sidra1968]

Thank you, it helps to hear of your experience. Good luck on your taper

[AgMuirhead]

Hi, allofaquandry. Could you tell me a little bit about what you meant by your trigger point/stabbing pains in the chest? Several months before my PMR was diagnosed I had intermittent, sudden stabbing pains under my left rib cage, which disappeared as quickly as they’d come. Do you think your stabbing pains were related to your subsequent PMR diagnosis?

Hope you continue to feel better!

[allofaquandry]

Hi there, my recent stabbing pain was indeed under my rib cage but on the right, extremely brief (just the occasional stab). It has also disappeared so I don't know if that's related to increase in prednisolone or not. I'm sorry if I have worried you, I was just getting rather anxious and noting everything because of my past experience.

The experience 5 years ago was on the right side (hence my referring to trigger area) however was totally different and something in retrospect I should have gone to the doctor about. It was an extreme bolt like pain across my chest and into the right arm and shoulder. It really was quite a shock, felt as if it almost knocked me out and I had to sit quietly for some time after. If it had been on the left I would have suspected a stroke. In retrospect it must have been inflammation of vessels/arteries close to the aorta. I already was experiencing the fatigue and lower body symptoms of PMR and had been for quite some time prior to this as well as a very tender scalp on the left side. I think the doctor at the time put it all down to age and arthritis! Indeed I didn't return to the doctor until I had the classic experience of not being able to move, get out of bed etc. I was then diagnosed with PMR, but the prednisolone dose of 15mgs didn't touch it and then, on taking bloods I was sent to a diagnostic unit at the hospital and GCA was also diagnosed. I was prescribed 40mgs prep. I did have 2 other bolt like experiences in the first week or two of pred, but higher up in my chest and in my shoulder, RHS. ( I guess the prednisolone took a while to work on this area).

I am sorry, this is becoming an essay! The problem is when I start to revisit I have difficulty knowing when is too much information and I have gone way beyond that! However I thought(?) it might be useful to give some context.

It does seem that your doctor has diagnosed PMR quite promptly. I don't know If those stabs were associated in any way with PMR, however the good news is neither of us have them now!

Best wishes.

[PMRpro Ambassador in reply to allofaquandry]

May I just point out that if you want to reply to someone particular, you need to use the blue reply box immediately after their reply/comment or they will probably not be notified of it amd not see it. DorsetLady and I see everything because we actively follow every thread and see everything - very few others do.

[allofaquandry in reply to PMRpro]

Ah, good point. Sorry, I thought I had, in my absent mindedness (can't multi-task any more, indeed single task in this case) I don't know what I hit. I think I was so relieved to have it done, this is stuff I haven't revisited or talked about other than to my husband so feeling a bit apprehensive about it and also worried about getting the balance right between useful info and just offloading and ranting!

[DorsetLady PMRGCAuk volunteer in reply to allofaquandry]

Never worry about that on here... it's what we understand, it goes no further, and no one judges you... 🌸

[PMRpro Ambassador in reply to allofaquandry]

Not a problem - but if you want to have a conversation with someone, it helps if they hear what you sayto them! HU is a strange platform, just wanted to help!

[allofaquandry in reply to PMRpro]

👍

[AgMuirhead in reply to allofaquandry]

Thanks for your reply.My 'stabbings' were very dramatic and took my breath away but there was no feeling ill, fatigue or any kind of aftermath at all. 2 or 3 violent stabs and it was over, until the next time......

The doctor had no clue as to the cause.

PMR happened 3/4 months later and was diagnosed 6 weeks after that.

Stabbings mysteriously disappeared! 🤷🤷 Weird!

Good luck with your recovery.

[allofaquandry in reply to AgMuirhead]

it sounds like a very unpleasant and disturbing experience and a relief that you are no longer having them.

Good luck and best wishes to you too.

[Flutterbies57]

Oh, I have been going through nearly identical problems. My stabbing pains are across left chest tho and head . I am on 5mg. I didn’t relate it to poly/pred. It is the 3rd time I have gone through it in the last few months. I am distracted this morn so will read your replies later.