Advice needed please for my mum!: Good morning. I’m... - PMRGCAuk

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Advice needed please for my mum!

BellaKent
BellaKent

Good morning.

I’m after knowledge and advice for my mum please. She is 75 years old and was diagnosed with polymyalgia almost 4 years ago now. She was put on prednisolone by her GP, starting dose of 7 mg. Her GP is extremely hard to get hold of , often just telephone calls are offered, and he was never happy that she remain on the pred for long . She was gradually tapered off them but with less pred, more pain started up.

Just before March he wanted her off them completely. She came off them and didn’t see the Dr at all because of the Covid pandemic.

Now she is a terrible state, her shoulders, wrists and fingers are agonising. She can’t dress herself and lives alone but luckily my brother and myself live nearby. Her back often goes and she’s leaning far forward. She went to her GP last week but she says you can only talk about one ailment so she chose to talk about her back rather than going back onto steroids. She is due blood tests and a knee X-ray tomorrow .

Sorry for long post everyone but I wanted to really know if she should be on steroids again and can people take low doses for life?

I hate seeing mum in so much pain, she feels there’s no point to life if this is how it will be. Thank you so much.

Bella.

49 Replies
oldestnewest

So sorry your mum is suffering like this, our doctors say you can only talk about one ailment at each appointment, therefore I made 3 appointments one after the other they were not very happy.

Your mum sound like she may have a flare and needs to be seen again.

There are people on here that have been on a low dose of steroids for years. Good luck

BellaKent
BellaKent in reply to carolBF

Thank you so much, that’s a good idea about making other appointments. I will try that.

DorsetLady
DorsetLadyPMRGCAuk volunteer

Hi

Sorry to hear about your mum.

A couple of points -

7mg is a very low dose to start on - usual is double that at 15mg,

PMR can last longer than 4 years, so she still has it, and needs the proper treatment - neither of which the GP seems aware of.

Do you know what tests are to be taken - hopefully ESR and/or CRP - both of which show inflammatory markers. If so perhaps that will prove she still has PMR, and get the correct treatment.

Is there another GP in surgery she can see, or is it possible that you or your brother can go with her (not sure about current regs) to impress upon doctor how incapacitated she is?

As you say her back is another issue, but that makes it more important that her PMR is treated.

Some people are on low doses of Pred for life, but if the PMR is treated properly she may not need to be, it is normally self limiting, so she may find that as she’s had the disease for 4 years it may only last another couple - but she does need the correct amount of Pred.

Please keep us informed.

BellaKent
BellaKent in reply to DorsetLady

Thank you . My brother and I wrote a letter to the GP detailing mum’s problems as time is so limited. I am not sure what the blood test is for but I hope it’s to show the inflammatory markers.

My brother did go in with mum to her appointment but the GP is very unhelpful and said it’s a knee problem causing her back problem. We disagree as she had spinal surgery at Kings College London 9 years ago and I feel it’s related to this.

Thank you again, I will keep you posted as to what’s happening. I hate to see her in so much pain.

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to BellaKent

Okay - and yes if course you hate to see her in pain - especially if some if it is unnecessary, and can be easily remedied.

Do hope she gets the proper help soon.

That is dreadful! What sort of doctor have you? He has absolutely NO idea how to treat PMR.

I was diagnosed when I was 72, 8 years ago, and immediately put on 30 mg of Prednisolone. Over the years the steroids have been 'increased' quite often. Even now I am on 4 mg of Pred and the doctor has informed me I will probably be on steroids for life.

PLEASE get your Mum to change her doctor if you can.

Hi, yes I agree. It’s shocking . Sadly my mum just puts up with him and often she waits 2 weeks for a telephone call. Rarely does anyone get face to face contact, even before coronavirus . I keep asking her to change. Hopefully when I show her this forum she will understand more.

Where does your Mum live? There maybe someone in your area who has a better doctor.

Her doctor obviously can't read. There are excellent articles in the British Medical Journal and the Mayo clinic that deal with PMR. (PMRpro - our "expert" on here will probably send a link.

Mum is in Kent. I think she knows he isn’t seeming to be a good GP but she is reluctant to change, she hates to feel she is a bother.

She's certainly NOT a bother. She has a nasty debilitating illness. If she would like to ask any personal questions she/or you could PM me (private post)! Little 'conversation bubbles' at the bottom of the page.

Many thanks. I will be seeing her later and will show her these messages of support. It is a terrible illness, I think this site will be of great help.

Oh Bella that is awful, is it a very small GP Practice or are there others she could see?

If your Mum wishes to remain at that Surgery then in the first instance l would write to the Practice Manager, outlining what has gone on, this will have a major effect!

As she has the Blood Tests & X-ray tomorrow, l would wish to proceed as follows is that she has a Consultation with the Senior Partner ASAP to see what he thinks & if it is not to your satisfaction then you must be referred to a Rheumatologist, either on the NHS or as a one off Private Consultation as you will have Blood Test Results.

As Constance say PMRPRO will forward you the Guidelines.

You could ring the Practice Manager this morning BUT follow it up in writing ie as per our Conversation this morning etc & outlining your Mums History.

Please let us know how you & your Mum get on.

Good Luck 🍀

MrsN

BellaKent
BellaKent in reply to MrsNails

Thank you. It is a fairly large GP surgery, covering a wide area though, very busy always. Thank you for your information , I’ll show her everyone’s help and discuss with my brother the way forward.

PMRpro
PMRproAmbassador

She has been TOTALLY mismanaged from Day 1 - 7mg as a starting dose is no use to man nor beast, There is no point making a diagnosis of PMR and then refusing to manage it adequately.

This

rcpe.ac.uk/sites/default/fi...

is an outline from an expert group of a good way to approach management of PMR and it is fairly understandable so you should be able to see how much rubbish you have been fobbed off with. The GP either hasn't a clue OR he is an appalling GP. Is there any way of seeing another who might be more caring of a 75 year old? Is seeing a rheumy privately an option?

My suspicion is that the back problems are associated with myofascial pain syndrome and possibly being made worse by her knee affecting movement - but that is not the underlying problem, that is PMR that is not being managed. Your mother is essentially in a similar position to me in the 5 years before I got a diagnosis. Once the PMR was managed with pred it was a whole new ball game. But I was 20 years younger than she is.

Her age is irrelevant - I have friends with PMR who were in their 70s when diagnosed and are now in their 80s: recovered and living a normal life, gardening and functioning well.

BellaKent
BellaKent in reply to PMRpro

Thank you so much. I’ve learnt so much this morning. Feel hopeful that mum can be helped with the right doctor. I’m thinking that seeing a rheumatologist privately as a one off might be the way to go.

She is a poor historian I should add, gets very muddled trying to explain everything to the GP. She’s a very sweet lady that doesn’t want to trouble anyone, but suffers terribly at home.

Your help is much appreciated.

PMRpro
PMRproAmbassador in reply to BellaKent

Sit down with her and write it down in bullet points, maybe keeping a diary noting times and locations of particularly painful episodes and possibly relating them to activity if she had been able to do something.

This is the link to the official recommendations for management of PMR:

rheumatology.org/Portals/0/...

Between the Quick and Kirwan paper and them any doctor should be able to at least initiate management while referring her to a specialist if they are so sure it is something else as well.

Her generation still thinks that doctors are special - but no more so than anyone else who is qualified in their field and, like other tradespeople, they do get it wrong. There is no reason not to ask questions and a doctor who objects or refuses to answer is a poor one. As for "one thing per appointment" - it is a single problem: a musculoskeletal disorder affecting her whole body. It is up to the doctor to ask the questions and examine her if he is going to place an embargo on her describing her problems. He should be grateful - vets and paediatricians are entirely dependent on their clinical skills with few clues!

If you post again and ask, saying how far you are willing to travel and an indication of where you are someone will recommend a relatively local private rheumy who knows what they are talking about with PMR - because judging by their actions some really don't know any more than your current GP!

BellaKent
BellaKent in reply to PMRpro

Thanks, you’re right. She holds her Dr in a God like status when really he’s been useless it seems.

I have passed the links and advice to my brother. We feel that a private appt is the way forward.

PMRpro
PMRproAmbassador in reply to BellaKent

My MIL was like that - and her GP managed to effectively kill off a couple of her friends/relations, leaving them to painful and untimely ends. He failed to diagnose conditions she had - her anaemia was found while she was visiting us in Germany! And when I say anaemia - her haemoglobin was under 6, half normal for a woman! Told her she had a heart condition and put her on digoxin without monitoring.

And she was all set to leave him money in her will ...

BellaKent
BellaKent in reply to PMRpro

Wow, that is dreadful but frighteningly very believable. My mum is on various medications, one for heart failure following an ECG by a health care assistant in the dr’s surgery. I’ve asked her to ask to be referred to a cardiologist but she doesn’t. I feel she needs a new GP urgently but she will say she doesn’t any to upset him. It can be very frustrating but i’m armed with knowledge now and advice . Feel far more hopeful, thank you.

PMRpro
PMRproAmbassador in reply to BellaKent

If you can manage it she really does need to see a cardiologist - my GP won't even adjust a dose without my cardio's say-so. It may just be by email but the cardio can see everything on the computer too.

BellaKent
BellaKent in reply to PMRpro

Seems there is much to sort out re my mum’s care. New GP definitely needed!

PMRpro
PMRproAmbassador in reply to BellaKent

Good luck!

BellaKent
BellaKent in reply to PMRpro

Thanks, I feel I’m going to need it!

It is hard helping parents with their GPs sometimes and I sympathise. Others have offered you better advice than I can but I just wanted to vent over your comment about only one ailment at a time.

How do you or your mother know if all the different symptoms are separate or not. I now realise that a lot of the problems I was having were all part of PMR. But some feel relatively insignificant.

My final consultation pre diagnosis I hobbled into consulting soon with a stick (after taking an age to stand up) and then practically broke down with the pain. Between you and me I did over egg it little but no more than I knew it might have been a day earlier or later. Tell your mum not to be stoical. Good luck.

And, ditch the makeup💄 l truly believe that if you look smart & well turned out the GP often does not believe you are as ill as you say!.......

PMRpro
PMRproAmbassador in reply to MrsNails

And absolutely don't get dressed up. Since a key symptoms is being unable to get your arms above shoulder level - don't brush you hair either...

Actually, one sign many doctors comment on is the tired and pale appearance of the PMR patient - so make-up really isn't a good idea.

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to PMRpro

Oh, that’s where I went wrong then!

PMRpro
PMRproAmbassador in reply to DorsetLady

Mistake I'd never make ;)

BellaKent
BellaKent in reply to PMRpro

Yes, mum can’t raise her arms, can’t put a bra on or brush her hair.

piglette
piglette in reply to PMRpro

Also don’t smile and make jokes, my downfall!!

PMRpro
PMRproAmbassador in reply to piglette

Not even deathbed jokes? ;)

piglette
piglette in reply to PMRpro

Whose deathbed?

PMRpro
PMRproAmbassador in reply to piglette

Pointing out that is how we feel ...

PMRpro
PMRproAmbassador in reply to DogAgilityObsessed

One of my friends had to attend appointments in a wheelchair for 18 months - before developing symptoms of GCA which was identified...

Thank you. It is hard and now with the Covid crisis everything seems far more difficult .

Get another doctor. And It is no surprised she is muddled. PAIN can do that to any of us. I hope he/she gives her at least 10mg. but probably should start back at 15 and get this under control. You will probably see your Old mum back in tip top shape with prednisone. And do tell her we are all rooting for her. (If I had some prednisone on hand I would take it)! BUT dont do that. ,,,, but see someone ASAP and have those studies printed out and in hand if you can! good luck.

good daughter!

BellaKent
BellaKent in reply to yogabonnie

Thank you very much. I’ve printed out the studies and will be ready. Feel a lot more hopeful now for her.

Smokeygirl
Smokeygirl in reply to BellaKent

Some years ago my Mum became ill and her whole body bent over. Her doc told her it was depression and gave her anti depressants. She told him we never get depressed in our family! She got worse and worse, curled up and couldn’t walk properly.Her doc went on holiday and I paid for her to go and see a rheumatologist privately. He said she had polymyositis , a rare autoimmune disease similar to PMR. He put her in hospital straight away and It took two weeks of Pred, physio etc before she uncurled. I made her leave that Doc’s practice but she wouldn’t complain. I did though but got nowhere. Autoimmune diseases run in our family as I have PMR and our son became diabetic aged 6 years old.

Get her away from that practice. Every good wish xxx

BellaKent
BellaKent in reply to Smokeygirl

Thank you very much. It does seem that everything has deteriorated rapidly since the pred was stopped completely.

Sorry to hear that Auto Immune diseases run in your family. It is very prevalent in mine too, and difficult to navigate with her GP. I’m going to see her now and show her all these supportive messages.

When I started on pred 8 years ago it was 20mg I have been up and down several times since then had a flare last month so upped the pred again. Your mum needs to change her Doctor he sounds useless. Most doctors have no idea how bad PMR makes you feel.

BellaKent
BellaKent in reply to paulst955

I agree, it’s truly debilitating. Mum even said this morning she feels like ending her life the pain is so severe. I have showed her from the messages here how good management and being back on steroids will help her. I wish she’d stop holding her GP in some God like status, he is useless. He seems very strange to me. When she said once to him how she can’t raise her arms or dress herself properly, he said that’s nothing to do with polymyalgia, but I totally disagree. Seems like he doesn’t care, in my opinion.

PMRpro
PMRproAmbassador in reply to BellaKent

It's listed as an effect! Refer him to this research paper:

eprints.whiterose.ac.uk/85252/

Stiffness in the shoulder girdle that prevents the patient raising their arms is absolutely typical and should prompt investigations for PMR.

BellaKent
BellaKent in reply to PMRpro

Thank you so much, I will print that off . Looks a very interesting research paper I will read that to mum too.

PMRpro
PMRproAmbassador in reply to BellaKent

That'll be reet! If you are familiar with the Yorkshire accent you can hear it in the patient's comments! Always makes me laugh :)

BellaKent
BellaKent in reply to PMRpro

Love the Yorkshire accent!

I changed doctors ( finally) after his inability to dx PMR was the last straw. It was the best move I could have made. I am older, like your mom, and we can present with more than one thing. Our doctors need to see and understand the whole geriatric person. She is blessed to have you fighting her corner. My best to her.

BellaKent
BellaKent in reply to Ipadmom

Thank you.

Please please persuade your mum to change Doctors she needs to get her life back. A higher dose of Prednisone will transform her life I was like your mum unable to wash under my arms very difficult to dress etc terrible sleeping. She will feel like she has a body 20 years younger. She is probably getting very depressed with all the pain and fatigue.

BellaKent
BellaKent in reply to paulst955

I agree she must change Dr too. Thank you for your advise, much appreciated. Mum says thank you to everyone for the information we have received.

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