my story so far

Hi everyone,

diagnosed pmr last february. started on 15mg of Pred which after 48 hours rendered me pain free. its been very, very hard to reduce but am down to9.5/10ish. Pains on waking for a couple of hours and only about 80%pain free for next 8-10 hours.

its hard to turn over in bed at night but not excruciating as before diagnosis.

hospital tried me on azathioprine. Strange that I was ok on it for about 6 weeks, (and virtually became pain free) then was told to take a break for 2 weeks because they didnt like my liver readings. the day i restarted had a massive reaction to it, nearly passed out and was vomiting for about 36 hours.

now they want me to consider take methotrexate.

my question is - why is it taking me so long to reduce. doc said to go back up to 20 and start all over again which ive refused to do.

have a consultant appointment in 3 weeks, i asked for a second opinion so have not see this chap before.

he wants me to have a ct scan, which I cant because im severely claustrophobic.

he said that would see where the inflammation is, after being injected with gadolinium, but I can tell him where the inflammation is!!!!

i cant see much of a way forward unless i try the methotrexate.

also i think i picked up some sort of bug a few weeks back from grandchild, ive been coughing up small amounts of green phlegm and it hurts when i take a deep breath.

gp said to try some gaviscon! i was thinking i might have a chest infection which is why im struggling with the pmr at the moment.

any thoughts/ideas would be appreciated.

many thanks in advance.

[PMRpro Ambassador]

I don't think your doctor really understands PMR - it lasts as long as it wants and a fixed reduction approach doesn't work - you aren't reducing relentlessly to zero, you are tapering in a process called titration to identify the lowest effective dose for YOU. And currently - you aren't on enough! The level of relief you got at the starting dose is your guideline - you are aiming to maintain that every time to you reduce the dose. And from what you say - that hasn't happened.

You DO need to go back up on the pred - even if you decide to try the methotrexate. It MAY help make reducing easier but it doesn't replace the pred to get the inflammation under control.

When he says that he will be able to see where the inflammation is he means much more exactly - different things make inflammation occur in slightly different places even though you know "this is where it hurts" and it MIGHT change the diagnosis from "just" PMR to LVV (large vessel vasculitis, sort of PMR+) or even to something else. That matters because the best treatment might be something other than pred.

There are approaches that can be used to reduce your anxiety - I assume you have discussed the problem with your doctors?

[Hidden in reply to PMRpro]

thanks for replying. havent discussed anything yet because my hosp appt isn't til end march

[Daffodilia in reply to PMRpro]

I think a ct scan is different to MRI and you aren’t enclosed - could you check?

[PMRpro Ambassador in reply to Daffodilia]

For you or the person who posted? They have left the forum - that's why they are now Hidden - so won;t see any reply

[Daffodilia in reply to PMRpro]

For person who posted - I have had both types of scan and think CT isnt enclosed

[piglette]

I think you are muddling up a CT scan with an MRI scan when you go into a sort of tube. A CT scan is open. With a ring round that does the scanning. I agree with PMRPro.

[Hidden]

thank you.i will go ahead with that then. i thought they were the same thing. silly me. thanks for replying.

[Pixix]

I get claustrophobic, & MRI scans are tough, but a CT scan is fine& should bring you some answers you need. I would go back to your doctor and ask him/her all these questions, & consider whether it’s wise to refuse to take more pred if it worked so well for you before. Just a suggestion….it’s your choice.

[SheffieldJane]

The last time I had an MRI scan, I had earphones with Smooth Radio playing, an angled mirror that enabled me to see out and a TV on where I could see it. Prior to that I’d been fine with my eyes closed reciting poetry or song lyrics in my head. I don’t think they bother me anymore. My lip trembled in my very first one, I was worried that it would spoil the result. Diazepam can be given which does banish fear.

[Viv54]

Hi Hidden, just wanted to mention about the scan. I am also VERY claustrophobic !! I had my app for a pet scan, i worried for the whole 6 weeks i was waiting for it.On the day of the scan kept talking myself in to it. Anyway as it goes the nurse was fantastic , he talked me through it and let me lay down on it to see if i could cope, i did it and am very proud ! Talk to them first, im sure they will help get you through it, im so glad i had mine came up with some of my problems. Good luck. Viv🌷

[DorsetLady PMRGCAuk volunteer in reply to Viv54]

No point in answering to a Hidden account- as person has left forum and will not read reply - as PMRpro has explained in thread to someone else.

Some of us are trying to get HU to change ‘Hidden’ to a more meaningful term - such as ‘account closed’ or similar, but they seem very loathe to do that!

[Viv54 in reply to DorsetLady]

I don't understand, is this not the person's post name ? Why is it a problem?

[MrsNails in reply to Viv54]

Their name originally was Anonymous - but have now left the forum…

[PMRpro Ambassador in reply to Viv54]

When someone leaves the forum/closes their account their previous posts and replies all suddenly appear as by Hidden - Hidden on the forum is not always the same person.if they were, they'd have posted thousands of replies! They then receive no notification of a reply so you have wasted your time.

[Viv54 in reply to PMRpro]

Oh I see, how stupid of me , I thought it was their user name !🙄

[PMRpro Ambassador in reply to Viv54]

Not stupid at all - why should you know how this forum works? That's what it looks like isn't it? And why we complain - to no avail ...

[DorsetLady PMRGCAuk volunteer in reply to Viv54]

I keep nagging HU - but to no avail!

[Viv54 in reply to DorsetLady]

I get it now 😊

[DorsetLady PMRGCAuk volunteer in reply to Viv54]

I just wish HU would change it to make it clearer!

[Bcol in reply to DorsetLady]

Don't see that happening any time soon

[Hidden]

The whole hidden thing is very confusing re replies as it appears there is a reply in the thread indicating they are reading? A change is logical surely.

[MrsNails in reply to Hidden]

I think some people just want a quick answer & after that don’t want to be involved with the Forum……

[PMRpro Ambassador in reply to Hidden]

The author name for all their previous posts and replies are automatically changed to Hidden - as I say, there are thousands of posts or replies apparently written by Hidden but they aren't all the same person.

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

I am trying! Very trying some would say- but HU has the final say!

[PMRpro Ambassador in reply to DorsetLady]

Maybe if everyone wrote to HU complaining about the confusion ...

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Good point!

[Hidden in reply to DorsetLady]

I would have thought the general consensus of user opinion would be sufficient after all the site is provided to help THE USER!

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

There speak an optimist….🤣😉..,if only things worked like that 🌸

[PMRpro Ambassador in reply to Hidden]

You are kidding??????

[Hidden in reply to PMRpro]

Perhaps an online vote would demonstrate the point and sway those that must be obeyed 😉

[Harrigan]

I cant help with much, but i do take loads of Gavisgon as all the stuff iam taking is upsetting my stomach, have to say it is working, sorry that,s all i can say, take care, loads of love Kate xx

[Hidden]

Exactly, hope they are accommodating for your need.