Re cap , update and would really appreciate some advice

[mad-country-lover]

My last post was after my PET scan 10th of May which was followed by an appointment strait after with the Rhumatologist , I had reduced the preds down to 5 mg per day for 6 days and also taking

6 Lamaline per day consisting of 300mg Paracetamol 10mg Opium 30 mg caffeine,

And with the help and advice from you lovely people here I got through the far too quick reduction for the scan , I saw the Rheumatologist directly after the scan , she said the inflammation on the PET scan was high around the hips trucks of legs and across the shoulders, it was defiantly PMR and no form of cancer was detected as they had suspected , she said to go straight back on 20 mg of Prednisone, I started back on 15 mg to see how I would go , 3 days of taking 15mg and feeling a bit better the Rheumatologist phoned me at home, she had my blood test results through and wanted to change my medication she had put another prescription in the post, and I was to stop taking the preds and start the new course of meds, I was not in the right frame of mind and feeling to unwell to question her, but said as I had only increased to 15mg preds I would drop back to 5 mg and await the new prescription , which came two days later by which time I was feeling dreadful, the prescription was for Hydrocortisone 10mg morning and night

Tramadol LP 100 morning and night

Orozamudol 1 x every 6 hours

Paracetamol 1g morning midday and night.

I did post that info on here, and went back on to the 20mg of pred ,I had a big flare up that lasted weeks, so was not well enough to call her back for a couple of weeks , I told her I had gone back to not being able to get out of bed and was in awful pain all day and all night… she immediately said go straight back to 20mg of pred , which I had done any way. I questioned her re changing after the diagnosis , she said it was with regards to my blood test results as the protein C- Reactive was only 13.3, I reminded her of the inflammation results from the PET scan , she said she wanted to discuss something else but only face to face .

I have an appointment with her this Friday 12th July , I have been taking 20mg preds ( + 4 Lamaline per day)as the stinging ( I think we called it acid being poured into muscles feeling in another post I read ) has remained in my hips and trucks of both legs since May, before the reduction I was ok just taking 1mg paracetamol before bed it was not necessary to take other pain meds.

I have arthritis in the hips and lower back, that is a completely different pain and one iv lived with for years part of getting old etc…..My question is does anyone know if on results of a PET scan Arthritis would this look the same as PMR inflammation, due to the Protein C- Reactive level I can only assume she thinks the inflammation has gone, my latest reading last week is now down to 6.7

I know I need to hear the something else she wants to discuss face to face, I am dreading the appointment, I do have someone coming with me.

But would dearly love some advice and knowledge from you lovely people.

Take care x

[Hidden]

Not sure I know enough to help mad country lover, but just wanted to pass on my best wishes for Friday. 🌻🌻

[PMRpro Ambassador]

Why do they do this? The stuff she switched you to was never going to manage PMR. And she had a PET scan - the CRP was raised but 1 in 5 have normal levels. What was the ESR? Not that that matters either. The hydrocortisone was for adrenal function - but tbh I suspect that was on the low side too.

Let's see what she is suggesting. But if 20mg pred is bringing the inflammation down and you feel OK then she should spend a bit of time allowing you to work on it. She has caused the flare and it is well known that doing this "lower the pred so we can do a scan" approach often makes things harder to get under control.

I do understand why she did it. But she needs to think before she goes at things like a bull in a china shop.

[mad-country-lover in reply to PMRpro]

Hi PMR pro

I have been back over all the blood tests and have just the one ESR taken 11.4.19 it was

4 mm and proteine C- reactive was its all time low of 2.9 but I was taking 25mg of preds at the time

I really don't know what she is thinking apart from more arthritis, which it is not as the pain is totally different .

I have googles it but have no answers, my gut feel is there has to be a difference on a PET scan between PMR and Arthritis, as she was quite clear with her diagnosis.

and can only be going by the blood test results .

thank you for you help and support

take care x

[PMRpro Ambassador in reply to mad-country-lover]

Those are the sort of levels you should be aiming for whatever dose you are on - if it is higher than them it is a sign there is active inflammation.

The difference on the PET scan is the areas that light up with the contrast they use.

Oh well - let's see what she has to say tomorrow,

[mad-country-lover in reply to PMRpro]

Thank you PMR pro

She confirmed PMR when she first looked at the PET scan

I can only think the something else she wants to discuss is to do with blood results .

When I spoke to her over the phone after receiving the prescription of new med's and told her how I was feeling and in my notes are I can not take Tramadol ,she had no problem saying go strait back to 20 mg of steroids

any way lets see how tomorrow goes

take care x

[Oumaof2]

Just to wish you all the best for tomorrow.... Please let us know how you get on...

Lena 🌻

[mad-country-lover in reply to Oumaof2]

Thank you Oumaof2

take care x

[Thelmarina]

Good luck! You must feel a bit like a puppet - time to pull your own strings with the help of the person coming with you. It’s good the 20mgs give you relief - your Rheumatologist must express very clearly what treatment she is offering and why before you reject what gives you relief. Very best wishes for a positive outcome.

[mad-country-lover in reply to Thelmarina]

Thank you Thelmarina

I have got relief from 20 mg preds and 4-5 Lamaline per day but its still not settled back to what it was before the drastic reduction.

The Rhumy is a young Interne , she is very sweet and has time for the patient , so I will listen to her and get all my questions answered.

she speaks English and has the patience to understand my French , and I have a friend who is a translator and has come to most of my appointments with me since last December, so she understands as much about PMR now as I do.

So I will not be fobbed off or use as an experiment,

take care x

[MamaBeagle]

Hi MC - I was diagnosed whilst living in France in 2017. Whereabouts are you? My medecin traitant sent me to a rheumy in Angloueme after diagnosis mainly for confirmation. My MT started me on 30mg - gave me a reduction routine that would last a year and told me I'd be cured!!! I've learnt differently on here and after just 1 flare last year I have really slowed down the dose reductions. I found docs in France give patients much more control over their illnesses so take your courage in both hands - my GP is slowly learning that here! Good Luck - I love the acid in the muscles analogy by the way, I described it as a belt of fire right the way round my hips!

[mad-country-lover]

Hi Mamabeagle

I first saw a Rhumatologist in Chatellerault last December I had to wait 3 months for that appointment , she diagnosed PPR they call it over here and prescribed 15mg Preds and told me to go back the end of February , she was far from pleasant , I had never heard of PPR before , she would not answer questions and asked me to go and make the appointment with her secretary. I was in a mess come January so I made a private appointment with a Rhumatologist in Poitiers , it is he who increased the preds to 20 mg and later ordered the scans etc .

While in hospital for 10 days my knowledge went down like a ton of bricks when it came to the fast reduction,

But my GP adds prednisone to my 3 monthly prescription , and the hospital also give me an ordnance as well

according to the original one she gave me on the 10th of May I should now be down to 12 1/2 mg of Pred dropping to 10 mg next Monday, then then drop 1 mg per month from there ooo la bloody la we are going to be having some discussion tomorrow .

I hate to think where I would be now with out this group

will keep you chaps posted

take care x

[MamaBeagle in reply to mad-country-lover]

Totally agree, the consultants are something else - in fact I much prefer UK NHS to any French hospital - but my MT was lovely and would really listen to what you had to say - however he was working out his retirement date when we left! Chatellerault always on our route north from the Charente. I have an aversion to motorways so always took the back roads from there to Champagne Mouton - our nearest village.