Not a helpful visit to doctor

[Dobermanlover]

Hi everyone - further to my post last week and upping my Pred from 11 to 12.5mg as my shoulders were aching and stiff. I went for my scheduled visit to my doctor. I had really thought that she 'got' the whole PMR thing, but no. She is trying to track down why I am so breathless and is sending me for various x-rays, blood tests etc. so she is being very thorough. I have scoliosis which is quite a big factor as it is pulling me over and constricting my lungs - I have known that for a while. I don't feel that my lungs are blocked with fluid or anything like that, I just feel unable to expand my lungs enough to take in sufficient air. Anyway I said to her this am that my breathing has got so much worse since I contracted PMR. She immediately said that many things are wrongly attributed to PMR, and I definitely got the impression that she didn't think I had it! I did mention the fact that when I started on Pred I was so much better, to which she replied that everyone would feel better on a high dose of Pred and that is why they give it to dying people! She said that there were no tests to confirm a diagnosis, should have asked her why when the Pred was withdrawn after one week, I was literally unable to move - had to ask my husband to lift my legs off the bed and help me to walk, otherwise I would have been there all day!

Oh dear! Are there any truly genned up doctors with regard to this wretched illness. The Rheumy I saw confirmed it that in her opinion I had PMR and I thought that all would be well when she wrote to my doctor confirming this. Oh dear - what now! Thank goodness you people are here for us to rant on to and not to feel so alone and misunderstood. I know it's not a good thing to take steroids, but if the alternative is being in constant pain, unable to move and risking contracting GCA, taking them in sufficient quantities to keep everything under control is a no-brainer.

Sorry folks, I've had my rant, time to walk the dog round our huge garden, only place where I can walk her and rest as much as I need to! Hope everyone is having a 'good' day.

[Grants148]

Hi Doberman lover,so sorry you were taken off the preds so suddenly,l would see a different doctor who will hopefully be more helpful..l hope you will soon feel a lot better.

[PMRpro Ambassador]

I had a flare about 18 months ago that manifested as breathlessness only - couldn't walk into the village! It happened from one day to the next. Everything was checked out for cardiac cause, nothing. About 3 weeks in the hip joint pain and stiffness appeared - back to 15mg and miracle relief of the breathlessness. We assume it was due to a vasculitis of the chest arteries. It took a few months to be able to get below 13mg but now I'm back to 5mg.

I do wish they could be disillusioned of the miracle properties of pred! It ain't necessarily so...

"to which she replied that everyone would feel better on a high dose of Pred and that is why they give it to dying people!" - what an utterly STUPID statement. In palliative care they are used to combat effects of the cancer - not to magically make people feel better...

[CT-5012 in reply to PMRpro]

GP-plonker 😫

[camerashy in reply to PMRpro]

Some doctors are so stupid and thoughtless in what they say and have no idea of the impact of their words. I remember when I was first diagnosed with Glaucoma and had an MRI scan...the doctor told me I had the brain of an eighty year old...I was fifty five at the time..but those words haunted me for a long time

[Dobermanlover in reply to camerashy]

What an awful thing to say to you, as you say their words haunt you when you are feeling down. Their job should be to reassure you and boost your spirits, not make you feel wretched. Hope things are better for you now.

[markbenjamin57 in reply to Dobermanlover]

So True... I agree 100%

[PMRpro Ambassador in reply to camerashy]

Whereas mine at 57 was likened to the brain of a 40 year old! Preferable - but what on earth makes them think it is clever or even sensible to pass such comments?

[camerashy in reply to PMRpro]

Needed a lesson in TACT

[markbenjamin57 in reply to camerashy]

I agree camerashy

I'm not sure if Tact / Diplomacy / Relationship and / or Negotiation and 'Soft' Influencing Skills are part of a GP's training.

Probably not, unless dealing with a patient with a Life threatening or terminal illness? But that's not an excuse for short-changing those with a Life changing illness in terms of a lack of empathy or respect.

[markbenjamin57 in reply to PMRpro]

Quite...

[Robinre in reply to PMRpro]

Well, I have a good one. When I was first diagnosed with PMR my regular doctor, not my Rheumy, told me, "You have a knife hanging over your head." I admit I was 75 but that has still bothered me. I was told if I didn't take the Prednisone I would have a heart attack or a stroke because my SED rate was so high. Four years later I am tapering from my third flare--down to 4 mg with no pain but with no energy or zest for life at all. Robin

[PMRpro Ambassador in reply to Robinre]

REALLY not sure high sed rate causes a heart attack or stroke - nor the inflammation it indicates. There are other things it can lead to mind.

[Hollyseden]

Hello Just want to say that before I was diagnosed with PMR I also was in agony when I breathed. Unlike yourself,I had no history of breathing problems but oooft drawing breath was agony, as was sitting down, lying down, dressing, moving in general. When Pred kicked in, the relief was immense. Hope you enjoy your stroll round the garden. Pace yourself ☺

[DorsetLady PMRGCAuk volunteer]

Hi DML,

No wonder you need a rant!

One wonders why when the Specialist reckons you have PMR the general practioner thinks she has the knowledge to disagree!

As for comments regarding giving Pred to dying people, she needs a kick up the pants!

As we're always saying, nobody wants to take Pred, but if it's the only drug that works then definitely a no brainer!

Take care.

[SheffieldJane]

I am sorry but your GP is a charmless git. What an awful remark about giving Pred to dying people. These kind of remarks are designed to make you shrivel inside when you are vulnerable, by bullies and she is one. It makes me angry. You need to have your Pred reinstated. Can you get back to see the Rheumatologist?

Breathlessness is a symptom, I've noticed it as I reduce my Prednisalone, much less stamina than I had last year on a higher dose ( I am in the rocky but beautiful Greek island of Hydra). There is a sort of goldfish gulping for more air, oxygen starvation.

Avoid that doctor like the plague.

[Robinre in reply to SheffieldJane]

Lucky for you. My grandparents were from Greece from the Island of Icaria. Was in Greece (in Hydra) in 1974 and long to go back but too late now. My family name is Kratsas. Are you visiting or do you live there? Rob8in

[SheffieldJane in reply to Robinre]

We are just having a little holiday. We've been working hard to help our daughter and her husband and my beloved grandsons to pack their lives up to go to Australia for at least a year. The peace and tranquility of Hydra especially at sunset have been a balm to our sad hearts. Everything goes so still and seems to hold its breath just before the huge red sun slips down behind the mountains on the mainland.

Why do you think it's too late to return? We took it in easy stages, staying in a hotel in Athens then taxi to the port and booked seats on the ferry. Painless! I won't mention struggling up the cliff to Maria's Windmill where we are staying. Let's just say I've stayed up here while my husband goes to get provisions. It's really hot.

Did you meet Leonard Cohen and Marianne in 1974.

[Robinre in reply to SheffieldJane]

Hi, I meant the way the world is in such turmoil that we really don't like to travel other than to visit our children in California (we live in Southern California and they live in Northern California). No, sorry we missed those people. When we were there we were the last tour left into the country because they were having all of the troubles with Turkey with burning of cars in the Plaka and there were tanks in the airport and and armed men everywhere and we were told to play down the fact that we were Americans because somehow we were being blamed for some of their troubles also. Anyway it was a lovely visit of ten days and we toured all over. My husband travels quite a bit in the United States to various events (the total eclipse being the last in Oregon) and I enjoy my rest at home from cooking, housework, washing, etc. (haha)

[SheffieldJane]

PS Prednisalone doesn't make you feel great in itself it just reduces distressing symptoms. Argh!

[markbenjamin57 in reply to SheffieldJane]

Spot on SJ, well said!

[Dobermanlover]

Back refreshed from my stroll with my lovely Sasha. Thank you everyone for your moral boosting comments - I came home feeling so deflated and actually questioning whether she was right and that I should look again at whether I had PMR or not. Knew this site would get me back on the straight and narrow.

Haven't had my Pred taken away thank goodness (It was taken away briefly when first diagnosed 2 years ago and very quickly reinstated by another doctor who has unfortunately since left the practice). Sorry if I gave the impression she had taken it away, wasn't thinking straight in the throes of my rant!

[Rocketronzy]

Yer it's a battle between pred our bodies and the Doctors thinking it should be easy to come down. 😲😬

Alll the best. 🍀🍀🍀

[joat]

So sorry to hear your experience. can feel for you as last week`s Rheumy appt was rubbish and my GP is not any better. One gets to the point of despair!!

[Dobermanlover]

I sometimes feel they think we are stupid - do they really think that we enjoy not being able to do the things we love, like taking long walks, feeling able to tackle giving a room a really good clean, or tackling clearing a border in the garden and the feeling of satisfaction of a job well done. Why would anyone in their right minds swallow steroids every day, knowing deep down that they aren't very good for us, but are so necessary to our being able to get through the day? I don't wish this condition on anyone, but I do wish they could feel what it's like for a week and see how their opinion changes after that. I can't stress enough how grateful I am for the support of the people on this site - you are an absolute Godsend!

[PMRpro Ambassador in reply to Dobermanlover]

And the evidence is that pred ISN'T half as bad for us as they think:

practicalpainmanagement.com...

Matteson is one of the top PMR/GCA bods on the ARC-EULAR committees producing guidelines for management.

[Dobermanlover in reply to PMRpro]

That made very interesting reading PMRpro, especially as I have had both cataracts done, 1st one after 18 months and the second after 21 months of taking Pred. We all expect to have our bodies age as time goes by, nothing is going to stop that, but it isn't helpful having all the doom and gloom the doctors associate with taking steroids thrust down our throats all the time.

I went on to read about MRI scans in the possible diagnosis of PMR, wonder how that would go down with the powers that be!

[navejasjoe]

Hi Dobermanlover,

In regard to doctors, my wife had a somewhat reverse situation last year. The rheumy diagnosed her with PMR, but wanted to have her taper Pred as soon as the tests showed normal results (showed inflammation was gone). When she got down to 7.5mg after 6 months of diagnosis, her symptoms came back. He did not feel the need to see her again. Her GP saw her and raised her Pred dosage, saying quality of life was more important than what the tests results showed.

Joe

[PMRpro Ambassador in reply to navejasjoe]

Well of course they showed normal results - she was on enough pred to combat all the inflammation! What a prat!