HELP - Source of basic PMR Info needed

[Golf-1]

Just had a phone call from the Pharmacist at my GP practice. I was initially told it would be to discuss my MTX prescription.

When I pointed out that it was prescribed by the Rheumatologist, and I had 2 monthly hospital blood tests with follow up appointments, he decided to query why I was still on 4mg of Pred.

He has not got a clue about Prednisolone tapering, managing a flare and why I am taking MTX, and I could not think of a polite way to tell him.

I explained that the reason behind me staying on 4mg Pred since December, was to hopefully (and successfully) prevent any flares being caused due to the stresses of Christmas, New Year, travelling to and from Australia in the space of 8 weeks.

After I said I was now back on a 5-week tapering schedule from 4 - 3.5mg , he said "you should be reducing Pred by 1/2mg every 4 weeks.

When I explained I had gone up 5mg on the 3 occasions having had a flare, he said " you should only go up by 1mg to the previous dose before you had the flare"

When I explained I was taking MTX - as I understand it - to help reduce flares and to be able to reduce Pred more quickly, he said "you are taking Pred to help with the side effects of MTX so that you can get to a lower level of MTX that you might then stay on for ever"

I know I am a novice to PMR and on this forum, but I can already hear my "mentors" screaming at this post and rushing for their keyboards.

I await with anticipation🫣

[DorsetLady PMRGCAuk volunteer]

Flaming Nora… what a plonker.. and talking out of his [well you know where!]

Have you say you sounded very restrained.. good for you. And assume you are discounting his ‘advice’ … 😳

[Golf-1 in reply to DorsetLady]

I am, but I would love to point him in the right direction, as I fear he actually believes what he said. I would like to be able to provide him with reference to papers/articles that can educate him.

My concern is that if he is giving that information to people less inquisitive than I am, he might do them more harm than good.

[piglette]

It is surprising for a pharmacist, as they are usually a lot more knowledgable about drugs than are doctors.

[Golf-1 in reply to piglette]

I have a feeling I threw him off balance by telling him the MTX was a Rheumatology prescription and being monitored by them

[DorsetLady PMRGCAuk volunteer in reply to Golf-1]

He should know that -GPs don’t prescribe MTX -needs to be a consultant.

[PMRpro Ambassador]

What a load of codswallop. If you get a chance - explain politely that you do NOT have an inflammatory arthritis and PRED is the equivalent of a DMARD for PMR. He has it totally the wrong way round, does NOT have a rheumatology qualification and until he has got his facts lined up should refrain from talking rubbish.

Pred is the mainstay of management of PMR/GCA, a fast that is pointed out in every article I have ever seen about managing PMR, and the only reason for taking MTX is to either reduce the rate or flares or, if you are VERY lucky, to potentiate the effect of pred, In a VERY small number of cases it will replace pred but that is the exception rather than the rule, they don't know why it works but the most likely explanation is that it was a mis-diagnosis and the patient probably had an inflammatory arthritis with a polymyalgic presentation.

I have exactly the same concerns as you. He could do great damage. MTX is ALWAYS a rheumatology initiation, GP cannot start it although they are then responsible for issuing renewal scripts if the blood tests are OK. If he doesn't know that - he needs to learn it.

[PMRpro Ambassador in reply to PMRpro]

I think I would ask to speak to the Practice Manager or a senior doctor since he is the practice pharmacist. He is disseminating incorrect information that is NOT his remit and it needs to be dealt with.

[Gala123 in reply to PMRpro]

Also, I have never heard about prednisolone being used to reduce the side effects of MTX. Even in inflammatory arthritis, that I also have. It is folic acid that is used to reduce the side-effects of MTX. And prednisolone is used in RA to address flares.

[PMRpro Ambassador in reply to Gala123]

Quite ...

[Excelsior80]

There are some published pmr treatment guidelines, cks.nice.org.uk/topics/poly... which are being updated .... or the information in the pmrgcauk charity resources is useful .... theres a section for medical professionals pmrgca.org.uk/ ... and PMRpro shared a paper recently ....

[Excelsior80 in reply to Excelsior80]

found the post ....healthunlocked.com/pmrgcauk...

[Golf-1 in reply to Excelsior80]

Thank you, What a lot of information - by the time I have read that lot I reckon I might make a better Pharmacist than the one at my GP practice 🤔🤔

[Cfmad298601]

Im concerned as to why he called you directly, most unusual and not their duty? Surely if he was concerned about your prescribed meds he should’ve spoken to the dr for clarification. I would be asking to speak to the practice manager to let them be aware that the pharmacist is handing out medical advice.

[DorsetLady PMRGCAuk volunteer in reply to Cfmad298601]

Many surgeries who have an in-house pharmacist do direct them to review a patient’s medication, and have done so for a long time. But unfortunately this particular one seems to have a distinct lack of knowledge and has given potentially dangerous advice.

[Cfmad298601 in reply to DorsetLady]

True, but surely if they think somethings amiss, they should consult the dr first just in case there’s conflicting instructions to the patient. Just bad practice all around.

[DorsetLady PMRGCAuk volunteer in reply to Cfmad298601]

Of course they should, and as I’ve said in this case the person should be brought to account. But my point was it does, and has happened for quite a while, so we can only hope it works well in other practices.

[Golf-1 in reply to Cfmad298601]

I had been advised previously that he would call me to discuss my MTX dose after I had another blood test, when I told them that I had had a test the week before at the hospital who are monitoring the MTX, they said ok no need for another test he can look at that one and then call you.

When he called, I reminded him that MTX was being monitored by the Rheumy nurses who call me if they are not happy with the blood test results, and that I have an upcoming appointment with the Rheumatologist, he then when on to the Pred.

It does look as though my GP practice and the Hospital do not liaise, or look to see what the other is doing, although individually they are very good

[Sophiestree in reply to Golf-1]

Wow! I'm really surprised a pharmacist spouted that. If you have a rheumatology appt then I would bring it up then and ask them to mention your dose and tapering regime in the letter that they write after your appt where you get a copy. In writing he will be hard pushed to have differing opinions. Stressful for you though and not something you need.

[Golf-1 in reply to Sophiestree]

Thank you, I do intend to mention it to rheumy

[Gala123 in reply to Sophiestree]

Yes, my rheumatologist wrote to the surgery that I need to taper every two months. I have taken longer, in fact, but my surgery pharmacist seems to be more understanding, though have to call the surgery every time I need my prescription renewed. They refuse to put it on repeat, so every time I worry they may refuse.

[piglette in reply to Gala123]

I am sure you could raise merry hell if they did refuse and if you really want to be dramatic say they could kill you!!!

[Gala123 in reply to piglette]

Oh yes, I will! 😂

[Sophiestree in reply to Gala123]

It's so frustrating. Mine has been on repeat successfully for over 4 years and yet the last two I have had to contact the doctors and ask for them. First time they just sent 1's and I needed 5's, second time the other way round, same with my thyroid meds. Not sure if they have had some kind of edict lately, but it is so frustrating.

[Gimme]

Another blooming pharmacist that thinks he is a doctor! I bet you were hopping mad. I would have been. When I was on holiday a couple of weeks ago, a conversation started up on my balcony with the next door neighbour, turns out she was a pharmacist. It came up in the convo that I can't walk very far due to an inflammatory illness and she landed on PMR immediately and that's how I found out she was a pharmacist. She then proceeded to give me a lecture on the ills of long term pred use and that I needed to get off the stuff. When I said that I can barely walk without it and would be in a care home without it, she shrugged as if to say, well, that is too bad. It ended with, well, you'll be sorry when you are diabetic and your bones are falling apart. Very unprofessional, I thought. If I had known who she was, I would have been sorely tempted to complain to the Pharmaceutical Society. In the work I did, it was always impressed upon us never to undermine the doctor/patient relationship.

[Gala123 in reply to Gimme]

Don't they know about the complications chronic inflammation can cause, that can be potentially lethal?

[PMRpro Ambassador in reply to Gimme]

Ah well - feel free to quote me as 16 years of pred and nowhere near diabetic and one compression fracture but OK BMD. Which doesn't quite fit with her assessment does it? Not to mention having had 16 years of decent life.

[Gimme in reply to PMRpro]

I just fixed her with that look that I do so well, the kind that says, you're talking out of your bottom, missus. I kind of laughed afterwards to myself though, as it was classic mean girl stuff.

[Gimme in reply to PMRpro]

oh, and something else that you will love (probably not lol), she also had her own opinion on the patient support group, i.e. the charity, and was dismissive about that. I can't remember her actual words now, but clearly no idea of the level of expertise that we have in the group or how many of us come from a health related background. My degree wasn't a lot different to a pharmacy degree and I did 45 years in various roles in drug development, for e.g., and I am well aware that I am not alone here. Mind you, she should have got an inkling when I was talking about the safety profile for methotrexate. Maybe that was why she got a bit mean, didn't like being argued with.

[PMRpro Ambassador in reply to Gimme]

She may have her own opinion - but she should speak to at least 3 Professors of rheumatology. do research in the field, have forgotten more about it than she will have ever learned and think we are wonderful! So there ...

[Gimme in reply to PMRpro]

Well, that was the thing, I was quoting the profs to her and name dropping. Crikey, the more I think of it, the madder I get. I get cross with myself for not telling people like that to go boil their own head at the time it happens, but I am usually so taken aback. I need to go and think of something else positive. All of us know the value of the group, including our profs, so that kind of ignorance is beneath us. 💗

[Cfmad298601 in reply to Gimme]

Good god, I would be seething…….does she not realise that if someone, not as versed as most on this page are, that she could’ve put them into adrenal crisis if they took fright and stopped pred immediately. Stupid woman!

[Gimme in reply to Cfmad298601]

I was kind of a bit shell shocked at first and then it sunk in. Apart from the professional aspects and the health implications, I was supposed to be on flipping holiday, relaxing and enjoying myself.

[Sophiestree in reply to Gimme]

Wow, again, that is so inappropriate and extremely unprofessional of her.

[Gimme in reply to Sophiestree]

I thought so too.

[PMRpro Ambassador in reply to Sophiestree]

Ranks alongside the Boots duty pharmacist who was asked for suggestions for dealing with constipation by a lady with a longstanding history of bowel problems, she mentioned the condition in her query. I was standing right next to her so heard, The pharmacist replied she shouldn't be looking for medications, she needed to do was drink more water, eat more roughage and exercise more. All this at the top of her voice so that the entire shop could hear. I was absolutely disgusted - and this was years ago when they first started mooting the idea that pharmacists should help GPs out. How can they offer impartial advice when they stock the tripe they do for coughs and colds - none of which are effective - and aim to turn a profit out of them?!

[Sophiestree in reply to PMRpro]

Here I go again with another WOW