Disappointed...

[Spittal9]

Had hoped my GP would be okay with me increasing my prednisolone from 15mg to 17.5mg - was started on 10mg in June after diagnosis. GP increased to 15mg to help with the pain. Been on increased dose of 17.5 for just over a week and it has helped with the pain in my legs and my back. She said she spoke to other GPs in the practice and they felt it shouldn't be increased, despite it reducing the pain. She's going to try to speak to rheumatology and phone me back next week. I've got my first rheumatology appointment on 20 December, she said that's not too long to wait until I see them. As I said, disappointed...

[PMRpro Ambassador]

It isn't her pain - I wish every GP like that could experience it.

Have you shown her this:

rheumatology.org/Portals/0/...

Recommendation 3

[Spittal9 in reply to PMRpro]

I printed it off but haven't handed it in for her, but I will now...

[Bridge31 in reply to PMRpro]

Towards the end of the article it states “ we anticipate an update of these recommendations 3 years after their publication.

Can we find out if anything further has been published ?

[Bridge31 in reply to PMRpro]

I’ve googled it and can’t find anything further . Definitely a few recommendations need highlighting for certain medics.

[Hidden in reply to Bridge31]

The NICE guidelines were revised in February. Not in the same form etc but presume bear some relation to each other!

cks.nice.org.uk/polymyalgia...

[Bridge31 in reply to Hidden]

We are not in agreement though are we on this early information ?

Reduce the dose of prednisolone slowly when symptoms are fully controlled. A suggested schedule for reducing prednisolone is provided below, but smaller dose reductions and longer durations at each dose may be needed to avoid relapses in some people. Typically, treatment is required for between 1–2 years.

For people who are well controlled on 15 mg daily, a suggested schedule is to:

Continue prednisolone 15 mg each day until symptoms are fully controlled (usually 3 weeks), then

Reduce the dose to 12.5 mg each day for 3 weeks, then

Reduce the dose to 10 mg each day for 4–6 weeks, then

Reduce the dose by 1 mg every 4–8 weeks until treatment is stopped.

[Hidden in reply to Bridge31]

Not really. The triumph in this review is the age change. 40 onwards.

[Highlandtiger]

Hmm.... 'she’s discussed it with the other GPS in the practice'...... But do any of them have any actual experience of the condition? Doesn’t seem like it. Would anyone in the Glasgow Support Group be able to suggest another (better) GP practice in your area? Because 20 December is far too long to wait if you’re in (unnecessary) pain because of too low a dosage.

[Spittal9 in reply to Highlandtiger]

I doubt they have! The 20 December obviously isn't too long for her to wait. I really thought she would be okay with it. She asked who had advised me to increase the dose. She knows I'm on this forum and I've been reading all I can about PMR. She obviously needs someone 'official' to make those decisions... I suppose when I decrease again, because I'll need to go back to 15mg, I will see what the difference will be and can go to the rheumatologist with that information

[Highlandtiger in reply to Spittal9]

I can understand why you are disappointed. It is so frustrating.

I’m lucky with my GP who hadn’t heard of the forum or about tapering with the DSNS method but is 'happy to be educated' as he told me one day. I printed out DL's excel spreadsheet for him and he said he’d never seen anything about tapering that way before but that it was 'eminently sensible' (although another GP I saw once when he was away told me I wouldn't ever need to reduce by 0.5mgs so they’re not all as enlightened in the same practice). He now largely leaves me to taper as slowly as I need. I don’t have a rheumie and am happy to leave it like that.

But, (big but), he let slip once that he has taken pred himself in the past (don’t know what for) and I think understands that while no one wants to be on them longer than necessary, they are also a lifesaver in terms of giving you your life back. Good luck!

[Spittal9 in reply to Highlandtiger]

Thanks. I really thought she'd be okay with it but in the end as she is the prescriber there's not much I can do about it.

[Highlandtiger in reply to Spittal9]

The thing is that all this extra stress is likely to be making you feel even worse. Would it be worthwhile making another appointment and taking in the printout of the study PMRpro suggested and telling her (again) it’s not working for you her way. It seems that she started you off at far too low a dose to start with and is compounding things now. The difference in total amount of steroids taken if she lets you stay on the higher dose until the rheumie appointment or if you reduce to her chosen level isn’t that much in the whole scheme of things but it might give you a month of pain relief and you might well get down to her level by then anyway. I’m really sorry you’re having to deal with this.

[Spittal9 in reply to Highlandtiger]

It wasn't her that prescribed the initial 10mg back in June. That was done by the consultant in the hospital. My GP has suspected it could be PMR and sent me to hospital, where I was admitted for two weeks. She's also agreed, that going by the guidelines, 10mg was probably far too low a starting dose. She is going to phone me on Monday, hopefully having spoken to rheumatology, so I'll see what she has to say then. In the meantime I'll make an appointment to see her and will take the PMRpro's printout with me to give her. I probably won't get an appointment for a week or so but in the meantime I'll be writing down everything I can about how I feel, the pain, etc.

At least I can come on here knowing people understand what I'm talking about and how I'm feeling.

[Highlandtiger in reply to Spittal9]

Ah, ok. I misunderstood. Hopefully she’ll have done some research herself over the weekend before calling you on Monday. You’re doing all you can do just now. Fingers crossed for you.

[PMRpro Ambassador in reply to Spittal9]

I think your hope is your GP - I had a rheumy who simply didn't want it to be PMR and wanted me to take a drug that must be used under the supervision of a consultant which I couldn't start as I was moving to Italy some months later and it would take time to get set up with doctors there. When I got to the end of the prescription for the pred and stopped after 6 weeks and everything came back even worse I managed to see a different GP in the practice and she said it definitely seemed reasonable to say it was PMR and continued the pred - and continued to do so even when the rheumy said no. A good GP will see when the patient is doing well on something a rheumy thinks is wrong even though it is a fairly reasonable or even standard approach.

[Spittal9 in reply to PMRpro]

It'll be interesting to see what the rheumatologist says when I see them in December. I've not been too bothered about seeing them as I felt my GP, until now, has been pretty much on the ball. I think my GP will 'come round' to my way of thinking eventually. Or should I say, our way of thinking lol... I feel the knowledge I have gained on here and from what I've read can only be of benefit to me (and hopefully my GP!)

[Jan_Noack in reply to Highlandtiger]

I seem to have needed that level too and I regret I didnt go to 17.5mg instead of the 15mh which was the max the rheumy allowed me. I was never quite out of pain until now..almost 3 years later , I'm fianlly pickinh=g up..but the inflammation has ,i believe damaged parts of my body including my brian..so the 2.5mg extra would have been the way to go an what I would have done if I knew what I know now. My brain perfusion is vastly reduced. I do have other rpoblems a swell as PMR and I beive quite a few do and the PMR is a side efefct, and the inflammation is causing other damage. I was started at 25 mg but told to reduce, and I'd had prednsione befoee and always had to reduce wihin a week or teo..so I rwas recuding daily and I was on 10mg (I could roll over on bed and sometimes sit for a short while but in pain..whereas before I could barely move and I needed assistance. By the itme I saw the rheumy (only in the enxt week) I was on 10mg and it was working a bot..but still vast pain.. he put me up to 12.5mg..after a couel fo months I rasied thei myself to 15mg..and he wouldnt let me go past it. I belive 17.5mg would have stopped the pain 9or almost). I had found on the way down I could sleep at that level, whereas 20mg and definitely 25mg kept me awake. so is up to you, but if it was me , I'd be on 17.5mg no matter who said what. I do now have redcued blood flow in my brain diue to the inflaammtion maybe..and i had a toth pulled a swell lately. I may need a brain op now.. well probably do... and maybe if I hadnt been thru such inflammetion the motyamoya would not have progressed as rapidly. I didnt know I had that two years ago..

[Jan_Noack in reply to Jan_Noack]

I have a new rheumy now as of last week and he can;t believe I was left with no help as I reduced and not offered methotrexate at elast. He thinks may also have had GCA due to the ainand yet two other rheumys dismised this. He wants me to have ultrsound done..so I have a script for that..but have nt made the appintment as yet. so I'm getting there its taken 3 years from diagnosis nad maybe 23 years from initial symtoms .. gradually got worse , the al of a d=suden I coudl not longer get up from sitting or rollover in bed, or get out of bed to go to the toilet..or get off the toilet etc. I also had the pain in my head.. still do but its going..I think it may have been that tooth.. It is so goog to have a good rheumy finally. The two otherww ere both trained at the same hospital..I took too long to work that out!

[Spittal9 in reply to Jan_Noack]

Sorry to hear about all the issues you’ve had. There seems to be resistance from some ‘experts’ to increase meds, even when there would be improvements to pain levels. I’m lucky that even though I have other conditions they are all under control and not causing me any issues on the whole. I’m interested to see what the rheumatologist will say in a few weeks time. As I’ve said in some other replies, as my GP is my prescriber, and I only get a few weeks of prednisolone at a time, my dose will be controlled by my GP. Maybe over time, and hopefully not at my expense, she’ll come round to our way of thinking. I’m glad you’ve now got a rheumatologist that you’re happy with. Good luck with the ultrasound.

[SheffieldJane]

I would lose faith in her for being unable to take a small, relatively harmless decision for her patient’s welfare and comfort. I am given my head to an extent and I know what I would do.

[Spittal9 in reply to SheffieldJane]

I have lost faith in her. It's not as if it was a massive increase and I had said to her I would start to reduce it as soon as I could to find the minimum dose that helped me. I repeated all of this yesterday but to no avail.

[Polymialgia in reply to Spittal9]

Not sure why you would even mention this to her, just take what you need to keep pain at bay and use whatever taper suits you, my GP has no idea of my current dose, I haven’t even seen her for almost a year, I just put a repeat prescription request into the surgery once a month. I get so cross with Dr’s who assume we like taking prednisone as if it’s a sweet!

[Spittal9 in reply to Polymialgia]

I had to discuss it with her as it's not on repeat prescription. So I need to phone it on as a special request every month. Why it's not on repeat I don't know. It's not as if I won't be on it for a long time. I've asked for this but I think she's waiting for me to see the rheumatologist first.

[Highlandtiger in reply to Spittal9]

I had everything except pred on repeat until about 9 months in when my GP was sure I understood what I was doing with it and not likely to do anything too daft when he put it on repeat too but only for 3 x 2 months' worth then I have to make an appointment (so every 6 months). It seems to work ok and means I’m not clogging up the surgery unnecessarily when I’m doing ok.

[Spittal9 in reply to Highlandtiger]

All my other medications are on repeat, so hopefully once this is all sorted out she'll put the prednisolone on repeat too.

[Polymialgia in reply to Spittal9]

I’ve never questioned it but mine isn’t on repeat either, I just pop a written request in the box at reception and it’s ready for me at pharmacy a couple of days later

[Meggsy]

Oh Spittal9 I feel for you. I hope you can find a more understanding doctor. 10mg was a low beginning dose to begin with. I tried to talk my GP into 10mg and he just insisted on 15 which wasn’t enough to quell all pain so he booted it up to 25mg. It did the trick and I have tapered reasonably smoothly each four weeks since (a couple of glitches at 10mg). GP has left it up to me with the only instructions - if I get pain after a taper, to go back to previous dose where there was no pain. I am very grateful that PMR is the only condition I have to deal with, unlike many others on the forum.

All the best 🌻

[Spittal9 in reply to Meggsy]

I always feel the person who knows best is the patient. Obviously we're not trained or qualified as the GPs are but we know our own bodies. The problem with finding a more understanding Dr is that I don't know who else she has spoken to in the practice. If I move to another practice I could end up with another Dr that has the same opinions as she has. As she is prescribing my medication I will only be able to take the amount she gives me. I only get four weeks at a time. It not on repeat so won't be able to up the dose without her knowledge.

[Hidden]

It's all very well her discussing it with the other doctors: they appear to be as ignorant as she is. I wonder if she has ever read a medical textbook or listened to her lectures. Everyone here knows the starting dose is usually between 15 and 20mgs and, if she doesn't know that, less than 5 minutes on the internet would have told her. I'd seriously think about changing my doctor if I were you.

[Spittal9 in reply to Hidden]

She does know the starting dose is normally higher and wondered why I was started so low on 10mg by the hospital. I went back to her at one point to discuss with her going up in stages by 1mg until I found the minimum dose that would help me. At that point she spoke to a rheumatologist on the phone and she increased it to 15mg. Obviously an extra 2.5mg is too much in her mind. If I thought I could change my Dr and get a more understanding one, that knows about PMR, I would but there would be no guarantee of that happening.

I will wait until I see the rheumatologist in December before I do anything. I will record everything, symptoms, pain, how the 2.5mg helped, how I've been since reducing again to 15mg, etc, and go armed with what information I've got.

[Rimmy]

In the meantime I'd just take the 'extra' if you have it for now (up to you of course I am not a doctor- just what I'd do) and get another doctor or even better by the sound of it another practice. Her response (in my 'humble' opinion) is not just ignorant but quite 'cruel' - pain is itself a 'medical' condition which can 'cause' stress and depression all on its own !!

[Spittal9]

If I had enough tablets I would just take the increased dose. It's not on repeat protection and I only get enough at a time to last me four weeks. I totally agree with your humble opinion. Why would you have someone in pain if it could be prevented?

[Pixix]

15mg took away initial pain last month, but left me with flu aches (badly), & pain came back if I was busy. I increased by 1mg & it made all the difference. Now he wants me to stay on 16mg for next month & only reduced to 15 for the month after, presuming everything goes O.k. I would try small increase & see if you can solve it yourself? I’m lucky, everything on repeat, right at the start he gave me 1mg tablets & told me I would be needing then later on. He was impressed by the knowledge I had within just one month & wrote down this site’s name! Good luck!

[Spittal9]

It's good that you have been able to do that. I know if I was able to tweak my dose as you have done, I would find the right dose. If it was on repeat I'd do exactly that. This site has been great. I've learned so much, like you, in a short period of time.

[SheffieldJane]

My surgery has now employed a part time, in house Pharmacist. He has been given a lot of autonomy and does all the medication reviews. I had a very relaxed medication review with him that was quite therapeutic. I have been kept quite short of 14 tiny little tablets ( 25 mgs of Thyroxine ) so I must be on my toes to order them a few days in advance - if I drop one, or it just kind of disappears, I was in trouble. He has given me an extra lot as a safety net. He’s got rid of all the surplus items the pharmacy keep sending. He now understands about tapering and potential flares and the occasional upping of the normal dose, so he has given me extra 1 mgs over my current dose. I can ring him any time for items I need or to cancel surplus. It is efficient and above all he has time. My GP appointments are now purely about specific issues. It is so good that I fear it can’t last. For now though, he is like my private Pharmacist and the meds I need are delivered, to my home. It will save hours of a doctor’s time. He thinks Pred is a great drug and agrees with me about all the drugs I fear and am offered, principally because doctors do not have time to monitor me. The amazing Andy ( for now). ⭐️

[Spittal9 in reply to SheffieldJane]

That's sounds ideal! GPs are so busy. I'm sure there are lots of people 'stuck' on medications because they are never reviewed. Hopefully they'll see the benefit of his post long term. We all need an Andy!

[SheffieldJane]

We need an army of Andys. 🤗

[Spittal9]

Definitely!