Pred Trial

[Pebble1]

Last day of weeks trial on10mg of Pred. I know it's a very low dose, took my first dose on the day before travelling for 7 hours across country to a Wedding. Had been dreading the journey, due especially to pain in both buttocks, couldn't sit for more than 5 minutes without feeling I had been kicked by a horse. Sat on feather pillows all the way, took frequent stops, and arrived feeling only as bad as I would if I had been well. Had a nights rest as the venue was another hours drive from where we are staying. Still a bit sore but nothing unbearable, managed to get my arms up to do my hair and make up, (had given up with the make up, too painful!) was still aware of pains but they were in the background now, actually managed two dances in the evening, (my Rheumy said I would!,) Did feel the pain creeping in when I got in bed, especially the hip, but could have been all the activity at the beginning of trial which couldn't be avoided. Since then have spent a restful week just strolling around and having lots of naps. Have felt a return of soreness around back of knees and in one shoulder, not like before but almost reminding me it is still there. Facing return journey tomorrow and a week off Pred which I am a bit anxious about, will keep you all updated. Best Wishes🌻

[DorsetLady PMRGCAuk volunteer]

Well done Pebble1. The train journey would have done for me! Glad you managed to get some rest as well as a little exercise during the week. Hope your return journey goes ok. As you say, next week might be quite difficult. When are you seeing GP again? Hopefully not too long, but if things get really bad then try to speak to him at least, even if you can't get an appointment. Good luck.

[Celtic PMRGCAuk volunteer]

Pebble, that sounds like quite a good response to just 10mg of Pred - that journey would have floored me in my early days on Pred, so well done. Recent returning soreness may mean that 10mg is not sufficient in the long term to get complete control over the PMR and keep it there. It's just such a pity now that after that good response you aren't able to see either your GP or rheumy immediately without cutting off the dose - is 'phone contact a possibility?

[PMRpro Ambassador]

Yes, Celtic has touched on a problem there. I was given 6 weeks of pred as a taper and was still OK at 5mg. Within 6 hours of missing the first 5mg dose I was worse than before and although I immediately saw another doctor and got more pred it took me longer to get the returned PMR under control and I never managed to get back down to 5mg again for a very long time.

Maybe I was unlucky but I really would be on the doctors doorstep asap to tell him how well you were on 10mg - which is a low dose to start at but if it worked why knock it.

[Pebble1]

I did my return cross country journey home today, my 1st day off the Pred after the weeks trial. The pain in my shoulders was back within hours of setting off. Managed the pain with Dicloflex, and just had some Co Codamol this evening. Have been given enough Pred to restart the doses after this week, do I have to wait the full week as it is obviously returning? I can't see the point of letting it all flare up again and going back to square one. Will be contacting GP after the weekend but meanwhile have to get through the next couple of days.

[Celtic PMRGCAuk volunteer]

Pebble, the improvement in your pain levels within a short time of being on Pred more or less confirms PMR. As your pain has returned almost immediately after stopping the Pred, then that sounds like double the confirmation. If you don't get back on Pred as quickly as possible, you run the risk of allowing the inflammation to flare to a point where 10mg will not be sufficient to control and contain it as well the second time around. If it was me, I would re-start now - good luck!

[Pebble1]

Thank you Celtic, I am lying in bed now and my shoulder is beginning to throb, and my hip is beginning to niggle. I have only been off the Pred for two days, so I am going to take one now before the inflamation takes a hold again. I do not want to go back to the pain I have been in for the last 5 months. The weeks trial has been such a relief, I felt like my old self again. I know there might be problems starting on such a low dose, but I will see how it goes.

[Celtic PMRGCAuk volunteer]

I really do hope the re-start at 10mg works well again - so frustrating, especially after such a good response to the treatment, because had your Dr been more PMR/steroid-savvy, you would not have been told to stop the Pred after completing the short trial dose and before your next appointment. Fingers crossed for you, and do keep in touch and let us know how you get on - meanwhile give yourself plenty of TLC, and try eating lots of anti-inflammatory foods, especially oily fish which can help, alongside the steroids, to ease the pain/stiffness.