Update re / hospital / PET scan, has any one else been in this situation.... and what would you do

[mad-country-lover]

hello lovely people

I posted an up date 2 weeks ago , re being sent home from 10 days in hospital, having my Preds reduced from 25mg to 15mg , had scans. tests etc while in there. then sent home to reduce the preds to 5 mg before they would do a pet scan.

I did follow advice from here re blood pressure, which fluctuated and got me an emergency appointment with a cardiologist the same day. he has changed my B/P meds and my Potassium levels are back to normal, also swollen legs have gone down. I had B/P meds changed while in hospital after my legs also blew up....

A friend drove up 365 miles to come and stay with me during the reduction from 10 mg to 5 mg, which had to be done as needed 5 clear days on 5 mg before they could do the PEY scan, I did it and took the 6 Lamaline and 3000mg of paracetamol per day to get there.

The day before the scan the nurse came out to take a blood test , after 4 attempts 2 being in my wrist he was unable to get any, and said my body was far to tired.

I saw a Rheumatologist consultant directly after the scan , she said there were no nasties , no Cancer which they had suspected due to potassium levels, she confirmed it was PMR and inflammation was very active in my shoulders, girdle area and trunks of legs , she examined me etc,and said she would have also liked the blood test... then word for word she said the same as I have read on here. she advised me to go strait back on 20 mg of preds, said PMR is a disease that affects people differently etc , her advice was to start on the 20mg of Pred then slowly reduce it till I reach a level that suites me . I could do this under my GP and have a follow up appointment wit her in November, she gave me an emergency number to phone the hospital if I had a question or a problem,and arranged for another blood test to be taken the following day.. plus one per week until my next appointment in November .. I came out of there as if 10 tone had been lifted off my shoulders …. I increased the preds to 15 mg to begin with( sixth sense said try that first ) I was still taking 4 lamaline per day plus 1.000mg paracetamol at bed time ,It must have all caught up with me as I was in agony the first 2 days unable to even get dressed, 3rd day things started to improve , My friends went back to Narbonne , I was through the worst....Or so I thought.I recived a phone call from the hospital part English part French, which I fully understood, but was so shocked I was just lost . I was told that the inflammation levels had only gone up slightly so I was to stop the preds as a new prescription was in the post. if I had a problem to phone them and they would give me an infusion. I reduced the preds back to 5 mg and have taken 6 Lamaline and 300mg paracetamol for 2 days, I am in absolute agony, and totally exhausted.

The prescription came this morning

Hydrocortisone 10mg x 2 per day

Tramadol lp 100 mg x 2 per day

Paracetamol 1 mg x 3 per day

Tramadol have a dreadful affect on me, I took them for 4 days following an operation a few years ago, and explained this when in hospital recently hence the lamaline.

My understanding is, Preds mop up the inflammation , what happens to it if its not mopped up, Im in so much pain and feeling far to depressed to phone and have an argument with them , what would you chaps do if in this situation.

My GP will just follow hospital instructions, I can make another appointment with the private Rhumatologist who arranged for me to be hospitalised but cant face being shot down by him .

Thank you a very confused PMR member

[mad-country-lover]

Forgot to also add the Orozamudol 50 mg 1 every 6 hours

my head is all over the place xxx

[Hidden]

Oh dear. I was thinking it was going to be a good experience half way through.

Have you tried the 20mg....if it works without anything else you have the evidence to argue that despite the markers being slightly raised your symptoms helped by pred. Are they suggesting it's anything else or us that the end of their input? Are you seeing them again soon? Or is that it?

As I say I would be tempted to see if the prescribed 20mg cleared it up this week and then you may feel well enough to talk to them. Sorry I have nothing else at the moment. I hope you feel better soon. 🌻🌻

[HeronNS]

I'm appalled that they are fine with you overdosing on paracetamol, even the maximum level of 800 per day is too much except occasionally. Yet they will not give you the moderate dose of pred you need to control the symptoms, knowing full well the dose will be tapered over time to a very small level which will have minimal side effects. I don't know what you can do if the medical people in France are adamant you can't have pred. Perhaps someone with a good grasp of the language could find you the French equivalent of some of the English literature which so clearly spells out the correct treatment for PMR?

Best I can do at short notice: chudequebec.ca/patient/mala...

[Soraya_PMR in reply to HeronNS]

My understanding of paracetamol maximum dosing is 1g 3-4 times a day.

[HeronNS in reply to Soraya_PMR]

Maybe so, I don't know why the lower number registered in my brain. But:

livertox.nih.gov/Acetaminop...

I'm pretty sure acetaminophen should not be taken daily for a chronic condition as the liver toxicity builds up.

[mad-country-lover in reply to HeronNS]

They are quite happy over here for you to take 4000 mg paracetamol per day

[mad-country-lover in reply to HeronNS]

The Rhumatologist did speak English ,ok face to face , but she was more hard going over the phone , there are others that speak better English , I will have a go at discussing it with one of them in a day or 2

take care x

[HeronNS in reply to mad-country-lover]

Then you can take in something in English? There are links to literature here:

patient.info/forums/discuss...

Especially Bristol paper and EULAR collaboration. Plus this one shows that the side effects from long term pred are not nearly as damaging as once thought:

practicalpainmanagement.com...

[PMRpro Ambassador]

That is utterly crazy - they told you there is evidence of inflammation in all the usual places - but someone has decided you don't need enough pred. Can you speak to the rheumy you saw using that emergency no? She seemed to have her brain in gear.

[mad-country-lover in reply to PMRpro]

Thank you PMRpro

I thought the same, but just wanted to confirm my thoughts .

She said it was very active and that was while reading the PET scan results , that is why she prescribed 20 mg of Pred, I had got down to just 5 mg of Pred for 5 clear days before the scan ( as instructed ) , which was a night mare, but the 5 mg must have been clearing some of the inflammation. but my sixth sense said try 15 mg pred first the day after the scan, first 2 days I was having to take 4-5 Lamaline and spent most of my time in bed. 3rd day was when I felt the improvement and just had 1 paracetamol that morning as was so stiff.

The phone call came through late afternoon on the third day, it was the same young Rhumatologist I had seen who had prescribed 20 mg of Pred and said to stop them . she was sending me a prescription that would be better for me as my inflammation readings were low on the blood test ….

I reduced the preds from 15 to 5 mg the next morning , that was 2 days ago. , the decrease this time has hit me more then it did before the scan.

When I got the prescription through the post lunch time , I could not believe what was prescribed .

I am in no state to talk to them for a couple of days, but I do have a choice here and can go back to the private rheumatologist.

Thank you so much again for your advice

Take care x

[mad-country-lover in reply to PMRpro]

am I also right in thinking that inflammation does not always show up on a blood test xx

[Soraya_PMR in reply to mad-country-lover]

Some of us never get high readings. Some I believe have initial high readings which are knocked down by pred and they don’t really rise again. Some people have markers which are good indicators and rise and fall with increasing activity. Some lag ages (weeks/months) behind the physical symptoms.

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

I've never had a reading out of normal range that was due to the PMR. ESR bumbled along at about 16-18 at a point where I could barely move - no-one would ever register that, but MY personal normal is about 4.

[Soraya_PMR]

“I was told that the inflammation levels had only gone up slightly so I was to stop the preds” ...is a complete contradiction to...“she confirmed it was PMR and inflammation was very active in my shoulders, girdle area and trunks of legs ,”

Are you sure this is the same doctor that SAW the scan? Or just someone different interpreting the blood results? It’s crazy!

I agree with Poop, take the 20mg, get stronger, then have that fight. Prove that pred works WITHOUT all the ridiculous high doses of the other rubbish.

Good luck, you’ve been so brave to get through that PET scan with the evil pred reductions, now the PET scan is done, let those results speak for themselves.

[mad-country-lover]

It was the same Rhumatologist I saw who read the scan report and prescribed 20 mg of Preds, She has since received the blood test results and is clearly going by that .

I could not believe what she had prescribed in its place .

Plus 2 sachets of Movicol for constipation ooo la

take care x

[Soraya_PMR in reply to mad-country-lover]

Incredible that she doesn’t believe her own eyes!

[Blearyeyed in reply to mad-country-lover]

So sorry for this contradictory information and advice you are receiving.

I understand why you feel bowled over , and with the agony of tapering up and down you must feel like you have been tied upside down under a rollercoaster.

Your head must be feeling very foggy and no wonder you don't feel you can cope with dealing with the doctors and want to just rest.

You are stuck between a rock and a hard place though as the only way you can get some answers and the appropriate medical help will be to use the last of your energy and make the phone call to find out what they think is going on.

Is it possible that you friend or GP could advocate for you if they speak more French?

I know your friend has gone home but perhaps you could give them the list of questions you need answers to to ask the Rheumatologist about.

Otherwise , ring or see your GO as soon as you can with a list of questions for them to ask your Rheumatologist so you can get help quickly.

If it's possible , take your 20mg Pred , at least for a few days to get the pain under control .

No one should be taking that much Paracetamol on a daily basis without proper explanation.

Over the next day jot down all the questions you need answering on a piece of paper to look at and write the answers to each as you get them.

If you choose to ring the Rheumy yourself have it by the phone and also repeat back their instructions to them over the phone after each answer to make sure you got it right.

When you have got some proper answers and hopefully a change in your medication that works for you ask if they can send these new instructions to your GP that day , and send you a new prescription for whatever drugs they discuss with you to replace the tramadol you cannot take.

I don't understand the flip they have done.

You were already being treated for PMR weren't you , and on Pred , so obviously your inflammatory markers may not have been as high as they could be for new patients or during flares.

You do need to ask why they changed their minds so quickly when the PET scan seemed to confirm the need for Pred and PMR as responsible for your pain.

If your pain is not caused by PMR you need to become what they have decided the cause is and what the new prescription is treating you for?

You also need to explain that you cannot take tramadol , that it says it in your notes and you will at least need a different prescription to replace that.

If you have had an improvement on a few days of 20 mg of Pred you need to tell them about it and say you would prefer to remain on the steroid unless there is some reason they can give you that can explain why they are stopping a drug that is working for you.

It's alot to do when you feel horrible , but that phone call , or a visit to the GP with the Rheumatologists number and a request for them to make the call and ask your questions for you, is probably the only way you will get the support you need.

Get as much rest as you can too I wish you lots of luck and sending strength to cope with it all.

Get some strength from the positives in that at least the Cancer fears have been laid to one side.

Please let us know if you need more help , big hug xx

[fren]

Hi, sorry to hear you are having such stress.

I too live in France and have been well treated for my PPR, (PMR) for nearly 2 1/2years.

I have lived here for nearly 20 years and have had considerable experience of the French health system, so I would be happy to share my experience of the system, it is very different to the UK. PM me if you think I could help, I live in west France, near the coast, not far from Nantes.

Normally the Rheumatologist is your specialist for the polymyalgia and overrides other specialists. Choose the one who was supportive and follow his / her instructions. Contact him / her immediately to discuss the hospital's letter.

I am confused that you have two Rheumys as here all doctors are private and you choose by recommendation or reputation and if you don't like the one you have you can change to another. For those not familiar with France, you pay all doctors at consultation even the GP (medicin generaliste), the cost is reimbursed via your carte vitale (State health insurance) and your mutual (private insurance).

[Blearyeyed in reply to fren]

That's kind and sounds like a good idea !

if you live near each other perhaps you could also recommend your Rheumatologist and pass on the details , or is there a list of French Rheumatologists that specialise in PMR that can be looked up on a afrench health site so that MCL can get the best service she can in her own area?

[mad-country-lover in reply to fren]

Hi Fren

I have lived un France for 16 years, and do understand the health system here.

I am not that far from you I live just a bit north of Poitiers.

After becoming unwell the end of September last year and blood tests that had a high inflammation reading I was initially referred to a Rheumatologist over at Chatellerault, the appointment was the beginning of December so for 2 months my GP prescribed anti-inflamatories with paracetamol and codeine, I was unable to drive so a friend drove me , her French is spot on mine has been all over the place since being unwell. which worked out quite useful as the rudeness and lack of manners of the Rhumatologist was unbelievable . even when I spoke to her in French she shouted at me to stop talking English , She diagnosed PPR( as they call it here ) I had never heard of it. she prescribed 15 mg of Preds and said I would feel better in 2 days time, after 2 weeks I should be back to normal ….. but she wanted me to stop the the anti-inflamatories for 6 days and have a blood test before I started taking the preds, I don't know how I got through that week . I had a follow up appointment with her 6 weeks later but could still hardly walk 4 weeks after starting the preds , she would not bring the appointment forward , so I booked another appointment with a private Rheumatologist in Poitiers , who upped the preds to 20 mg and said if there was not a significant improvement with in 10 days to go back to him .I was daft enough to keep the appointment with Rhumatologist number 1 at Chatellerault who also said up the preds to 20 mg, but refused to listen to any of my symptoms .

I upped the preds my self to 25 mg then went back to the Rhumatologist in Poitiers who on looking at my blood test results thought there was an underlying problem , it was he who had me admitted to hospital and ordered the PET scan. .

Poitiers hospital is full if interne' who don't communicate and contradict each other it has all been very confusing to say the least . I came out of there with the wrong drugs on a new prescription , I feel so sorry for older people here that accept what is said to them with out questioning , you see them coming out of the pharmacies with carrier bags full of drugs and most probably don't need half of them oo la.

Any way I have sacked the Rheumatologist at Chaellerault and will stay with the new one in Poitiers .

I phoned the Hospital yesterday afternoon after going round the houses I did eventually talk to the Interne who I saw after the PET scan who confirmed I had very active PPR and advised going back up to 20 mg of Preds, then changed her mind after getting the blood test results , it was she who phoned me to say stop the meds as a new prescription was in the post.

After our conversation she apologised for not seeing on my notes that I can not take tramadol , her reason for doing this is due to the low inflammation levels on the blood test ,So she wanted to try another route ???? I did have the discussion with her re inflammation levels and my knowledge as to why they are lower. she advised me to go strait back onto 20 mg of Preds plus the lamaline , but will be sending me another appointment through the post to discuss something else face to face..... As nothing

showed up on the PET scan I can only assume she wants to go down the painkilling route , I know I have arthritis which has deteriorated over the years but it is an entirely different pain and manageable with common sense . I have agreed to seeing her again , but have no intention of going down the painkiller route only , I will keep you chaps updated thank you all so much for your support and kind words.

I spoke to my daughter last night who lives in the UK and even she said ( Mum I hate to think where you would be now with out the information help and support from your health unlocked group )

Take care xx

[Soraya_PMR]

“I was told that the inflammation levels had only gone up slightly so I was to stop the preds”

Now I’ve slept on this and ruminated some, the penny has dropped!

1. The inflammation levels have gone UP (slightly). Not much, OK, but still up! And this is a one off result. DEMAND another and see if there is a trend. You may be climbing.