Pred dosage for PMR and GCA

[riannabri]

So many of you have helped me re my very poorly father - Pls see previous posts

So can anyone tell me.....

For PMR what is the normal maximum Prednisolone dosage? they have him on 40mg which I feel is a little too high

even on this dose his CRP is only down to 94 so I am thinking this is still not PMR - his symptoms don't fit with PMR or GCA and they have scanned every part of his body for tumours and run bloods for Multiple myloma and full antibody screen but I don't know what else to test for...

Any ideas?

[DorsetLady PMRGCAuk volunteer]

Hi riannabri,

Sorry to hear you are no nearer to getting a positive diagnosis for your father, you must be extremely worried.

Usual starting dose for PMR is between 15mg to 20mg, although there have certainly been members on here who have been started at 40mg.

Don't have any ideas on what else it could be, hopefully others with more medical knowledge will be alone with suggestions.

[PMRpro Ambassador]

This is a link to the most recent international Recommendations

rheumatology.org/Portals/0/...

They say "the lowest effective dose in the range 12.5-25mg" and never more than 30mg. Other things respond to those high doses while PMR is fairly characteristic in responding the moderate doses. 40mg is more often used as the bottom dose for GCA.

You might find this interesting.

ncbi.nlm.nih.gov/pmc/articl...

On that basis - you say your dad has had CTs (I assume) but have they done a bone scan? And have they considered hyperparathyroidism? Of course it could be large vessel vasculitis which they wouldn't have seen on their scan since they did it while he was on a hefty dose of pred.

I do wish you all the best in your fight for your dad.

[riannabri in reply to PMRpro]

I have questioned them time and time again on doing the PET & Head MRI on 40mg, it falls on def ears

I spoke to the GCA helpline and was given a local consultant but he's too poorly to get to him - I was also told that he would need a temporal artery ultrasound or biopsy but this would probably be inconclusive as hes been on pred

Dad is an absolute nightmare am and then becomes really mentally happy and normal by evening so I do think he is having terrrible side effects from the steroids so they are starting to reduce him and they are listening as they are also giving back his cardio meds and moving him to a ward for higher care to get him mobile again

Weight loss now 3stone 9 lbs in 8 weeks

MRI/CT scan and ultrasound of so much of his body

CRP/ESR has not lowered when upped to 40mg so remained 90+ on 20mg and now on 40mg

So to me its like this is not immune related so its acting like infection/cancer or something

Its a real worry but I do think getting him back to baseline on meds and down to 20mg pred to stop the mental stuff mayhelp us to get him to a better place and hopefully the new team can bring something to the table

The powers above 'PCT'/Directors have been a class act with their lies as you know so everything logged but I need 'down time' so im not fighting them for a while as I have got the changes that I want for now

It really should not be this difficult!!!!!

[PMRpro Ambassador in reply to riannabri]

No, it really SHOULDN'T be this difficult.

If he has mental problems due to the pred that can also be improved with medications, in the same way as if it were not sue to pred - but they'd need to bring in a psychiatrist I suspect since they really don't appear particularly gifted.

[Vanner460]

Like your father I was started on 40mg in Jan 2014, I get down to 5, then have to go up again, currently on 6. Looking foward to zero!

[jinasc]

If you can find an Acute Medical Consultant/Team this would help.

Read up on this link.

uclh.nhs.uk/OurServices/Ser...

Many years ago, whilst I had GCA, I ran into problems and was admitted to the local hospital via my GP to the Acute Medical ward.

Within 6 hours I was sorted out and sent home and within a few days back to what was 'normal' for my GCA at that time.

I discovered that everybody admitted to that ward was only in for 48 hours. By that time you were either on the correct ward or discharged and sorted out.

I can only speak from my personal experience.

[riannabri]

Working with the hospital on a Reablement package, this means dad could be home soon with intensive help to get him back doing things for himself, its a 6 week intensive package at home that can be extended. I feel its the best option as if we can get him out of that dreadful hospital and get him mobile a little then we can get him to a prof rheumatologist in southend to get him the diagnosis and care he needs, will know tomorrow and hoping its in place so he's home as soon a saturday.....he is still losing weight now 3 st 9lbs and is so ill but we have to get him out of there to get him the proper care he needs......cross our fingers and toes everyone