Hard to watch this at times!

[Sonofjimmy]

Hi,

I have posted a couple of times recently and found the support & advice unbelievably helpful for our family, thank you.

One last plea for help,

I have just been with my farther when his condition attacked him for over one hour. During this I watched him with anger while he sang and sang (Nursery rhymes) through the pain he was in!! This has been a regular occurrence now for the last three months, with then only let up being when he was given 500mg intrusion of methylprednisolone for two days over two weeks ago. After this he was instructed to continue with the 10mg pred and pain killers.

Couple of points, my understanding is that the methlpred 500mg is approximately 45mg of pred? Based on the fact he was the miracle person for 48 hours it worked, by reducing to 10mg of Ped the next day would not be a good idea under PMR / GCA treatment? This would be consistent with how he is at the moment. As I have said before I believe that he would have half a chance on 20mg trial reducing slowly and I am strongly advising time to try this at the moment to ease the pain?

We have a specialist appointment on Monday, a follow up from CT/Blood tests taken four weeks ago! is there any useful questions we should consider that could push the specialist into confirming why we are not trying a stronger steroid? Watching him tonight was as many of you will know heart-breaking, my concern now is his mental condition as dealing with pain for so long will take a toll on any one and some of his actions tonight did not seem like my farther. I understand that this condition is complicated and has highs and lows, however we seem to have had four high days in the last 6 months

Thanks again for your support, big day Monday

R

[Jackoh]

Must be so hard for you watching him go through all this and thank goodness he has you as an advocate:- someone who is aware of what is happening and can speak up on his behalf. I wonder if you have documented what has happened to him over even the last few weeks :- recording his pain levels and when he has felt improved and perhaps you can take these notes with you. Obviously the methotrexate is not having the desired effect if he has been on that for 5 months , yet the higher dose of pred seems to help him considerably. Can't understand as was said previously why they won't try a higher dose of pred and then slowly reduce. Perhaps they can explain in detail to you why not? Failing that maybe you need a second opinion if you're getting nowhere. Let us know how you get on on Monday. All best wishes Jackie x

[PMRpro Ambassador]

PMR doesn't usually cause "attacks" - it is more sort of there all the time. What form do they take?

But I think your doctor is being very pig-headed in refusing to allow longer term use of a higher dose of pred - it hasn't killed me after 8 years...

[hjbradshaw in reply to PMRpro]

PMR does have acute episodes which can be incredibly painful: I ended up in A&E during one such episode as the pain was unbelievable and I couldn't move my neck because it was both stiff and painful. Everything hurt: I know I am in a flare when my knees and hands and fingers join in the chorus!! The staff there were initially worried I might have meningitis but realised it was not that eventually and a senior consultant who was lovely about it all confirmed it was an acute flare-up of the PMR. They advised on the dosage I should take of pred at the time (which I now can't remember but was probably about 30mg for a few days and then taper....)I am normally on 8mg at the moment but keep having flare-ups or infections which have meant having to up the dose. When people develop GCA that is also an acute flare-up which affects the temporal arteries and needs high dose pred to prevent blindness as the inflammation is so severe.

[PMRpro Ambassador in reply to hjbradshaw]

I have episodes like that - but it isn't PMR, it is a closely allied problem caused by the same inflammatory substances, myofascial pain syndrome.

[Sonofjimmy]

Hi All,

Many thanks again,

He was like this for over three days in all, we attended the consultant today (Stand in for then usual). He has now prescribed 50mg of pred until further notice while they investigate further. Thanks god, They still think it is R/A and are looking into biological treatment instead of the met.

He has just taken the 50mg, hopefully he will feel fine tomorrow and we can start looking forward to planning and managing the condition going forward

BR

Ryan