Update from me...

So I got to speak to my GP this morning - had to keep redialling the number for almost 40 minutes after 8.30 before I got through to speak to the desk drone who was surprisingly pleasant and unconfrontational, only asking a few basic questions before complying with my wish for a call back today.

So, Doc calls me back just half an hour after that and was very sympathetic and understanding and didn't scold me for making my own decision to raise my pred dosage temporarily, but disagreed with me on the dosage I had chosen to put myself on for a few days to get the PMR back under control. She said she would have put me back up to 7mg but after taking DL's advice on Saturday I decided on 10mg for 5-7 days then a drop down to 7mg for 4-6 weeks before beginning a much slower taper than last attempt - maybe 0.5mg a month or every six weeks, or by following the dead slow and almost stop regime which tbh I think I would prefer. Doc pretty much disagreed with me on that though and wants me to go back down to 5mg in two days time and continue trying to drop by 1mg a month, which quite frankly terrifies me now after my recent experiences. I told her my body was telling me as clear as day that it couldn't cope with such a leap from a high cliff edge every four weeks and not allowing enough time for readjusting to the lower dose and she eventually after some persuasion allowed a compromise by saying that I could stay on the 5mg dose for 8-12 weeks if needs be and then play it by ear after that according to how I feel. She also suggested if things don't improve on the 5mg dose I would have to go to the rheumatologist but I don't fancy waiting a year for an appointment for that so I hope it wont be necessary.

I still have a small stash of leftover 5mg and 1mg tabs and am in the process of calculating how much I will need to take the law into my own hands once again to start a slower titration from 7mg downwards but it all depends on how much the doc prescribes me this week as I told her I was running out fast and she promised to send a new prescription of 5mg and 1mg combination through to boots today, but given the slow nature of the process of prescription to pharmacy and pharmacy to supplier and back I wont get it in my hands until Friday and only then will I be able to calculate if I can carry out my plan or if I will have to comply more in line with what the doc says.

It seems to me that a lot of these docs seem to all be singing from completely different songsheets regarding PMR as so many of the experiences posted on here tell such different stories of either cooperation or non cooperation and illustrate a lot of general ignorance on the part of GPs- how can that be I wonder... Bless my doc, she's a lovely lady and she really wants to get me off the steroids as much as I want to be off them myself, but I'm not convinced she fully understands the nature of how slowly PMR progresses and I have to keep her onboard and on my side as ultimately it's up to her re the quantity of meds I get prescribed.

Incidentally I feel much better already after three days on the 10mg dose and can again use my hands and walk without hobbling so a big thanks once again to DL for her sound advice.

[DorsetLady PMRGCAuk volunteer]

You're welcome, and as said many times, maybe to you, many GPs are used to prescribing Pred short term for asthma, COPD etc, and get into a frenzy when used for PMR. It needs to be long term - and more importantly at the right dose for the illness' activity... that's what they don't seem to "get"...

..as for referral to Rheumy, I think they suggest that because they (GP) doesn't understand the vagaries of PMR...

Hopefully you can persuade her you are doing the right thing, ad she needs to be a little more flexible...

.. we live in hope 😊

[Hidden in reply to DorsetLady]

Hopefully...😆 She's worried about complications arising from too long on pred - diabetes, bone density problems etc so she definitely has my best interests at heart. I'll just have to play the game as she wants it played for now if I haven't got the supplies to do a longer and slower reduction and hope for the best.

[Suffererc in reply to Hidden]

keep ordering your Pred even if you don’t need it. I stopped ordering mine when below five unless I needed it and I ran out when I had a flare and needed the extra. Also my GP reduced the amount without telling me. I have now built up a nice stock 😊

[Jackoh in reply to Suffererc]

Yes that’s what I do. I build up a stock( all in date order) just in case the GP decides to cut my dose. After 4 years with this surgery they now seem to be asking a lot of questions and sending me for lots of blood tests. I have already mentioned that some folk do not have the high ESR and CRP markers. I just had the blood tests again with relatively low ESR (12) and a very small increase in CRP ( 6) and a request to see the GP so I’m interested where I go from here with GP. 💐

[Hidden in reply to Suffererc]

Running out has always been in my mind and for that very reason I had built up a little stock left over from previous doses. It won't last me long though if I get into trouble. I usually re-order every four weeks .

[PMRpro Ambassador in reply to Hidden]

There are ways of mitigating most of the adverse effects of pred and they aren't inevitable - I've been on pred for over 13 years but no diabetes (low carb diet), gained weight with inactivity and comfort eating, lost it while on pred (low carb diet), bone density is still in good range, only slightly lower than at the start (calcium and vit D, haven't needed bisphosphonate, they were there if I did), bruised a lot but that is finally going as I am able to reduce pred on tocilizumab.

And some of those so-called adverse effects of pred can be seen in untreated PMR - pred really isn't all bad and not always to blame.

[Hidden in reply to PMRpro]

That's encouraging to hear. Since this began I've been optimistic that my bone density wont suffer too much as it must have been very good to start with from my heavy weight training over the last 40 years. I was taking Ca and Vit D supplements at the start but made an executive decision that they were unnecessary due to high calcium in my diet coupled with my outdoor lifestyle which I adamantly refuse to give up on.

[PMRpro Ambassador in reply to Hidden]

But you almost certainly need vit D - it is probably as important if not more so than the calcium. As we age the skin factory slows until at 60+ you make about a 1/4 of the vit D you did at 20. We tend not to be out in the sun without means of protecting skin from the sun - and anyway it only works from May to September in the south of England, shorter further north.

[PMR2011 in reply to Hidden]

Actually, good for her that she is even thinking about those complications as some don’t bother mentioning them! What many docs don’t seem to understand is, with some sound advice and some dietary and activity changes, most of those side effects can be avoided or managed. Sounds like it may be relatively easy for you to get a dexa scan for a baseline tho!

[Hidden in reply to PMR2011]

Yes doc mentioned it as a possibility in the future. I can't help but be very impressed with both her and her colleagues as the initial consultation on the first day was by another doc in the practice and she fielded the idea of PMR within minutes of me being in there. I guess as you say as GPs they have to have quite a lot of general knowledge about virtually everything but don't always have the specialist knowledge of consultants etc.

[PMRCanada]

Thanks for the update. Seems as if some patients need to “negotiate” with medical professionals as they are at the mercy of the person prescribing the pred. Many doctors do indeed worry about pred side effects hence they are in a rush to get their patients off of it quickly. But as DL mentioned, PMR treatment needs to be long term AND address your disease activity. Of note my GP was wonderful in part because one of his colleagues had PMR so I’m certain this informed his approach to caring for PMR patients.

Glad to hear the increase in pred has provided relief and fingers crossed your new prescription of pred will allow for your planned slow taper.

[Hidden in reply to PMRCanada]

Thanks. I've got my fingers crossed. I tried out a little cycle run earlier up to my allotment which is just 10 minutes away and I made it there and back again with no discomfort so maybe I'll go on a slightly longer run later in the week...

[PMRCanada in reply to Hidden]

Just be mindful to build up physical activity slowly. I’ve jumped in too quickly or overdid it and suffered later with DOMS (delayed onset muscle soreness).

[Hidden in reply to PMRCanada]

Yes I'm guilty of impatience, no doubt about that, but I'll be careful..🙂

[borednow in reply to Hidden]

Steady on - don't get over ambitious!!

[piglette]

Dorset Lady probably has a lot more idea about steroid doses that your average doctor. We think it is just PMR and GCA doctors don’t really know about. Apparently 40% of first diagnoses on the first visit to a GP are mis diagnosed. I suppose in a lot of cases it does not matter as the body sorts things out on its own and people get better anyway in spite of it all.

[Hidden in reply to piglette]

Yes, we've often discussed that concept here at home and concluded on more than one occasion that GPs don't know nearly as much as people think they do.

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

..or hope they do!

[Hidden in reply to DorsetLady]

Indeed!

[piglette in reply to Hidden]

or they think they do!!

[PMRpro Ambassador in reply to Hidden]

To be fair - they do have to know a bit about a lot of things! But the mistake a lot of older ones make is to dismiss patients as knowing nothing. Many of us have been to uni too - I went to a medical school to get my degree and it was very holistically orientated, not a lot of cell biology at St A's! We know how to do library research and then when ill we tend to get together and support others wh don't have the same background. I don't want to be a GP - but I'm very happy to have a specialist subject and do the other aspect of my career: translation of medical speak into comprehensible text.

I was horrified once when my first visit to a new GP was awful but after we'd bumped into each other at the hospital lunchtime lecture the next appointment was a whole new world. I was accepted as a colleague. There shouldn't be that difference between patients - just because I, too, worked in the NHS with patients. And to be fair again - younger ones are far far better.

It's one aspect of a little knowledge is a dangerous thing - they don't know what they don't know as a result of not being up-to-date.

[PMRpro Ambassador]

"he also suggested if things don't improve on the 5mg dose I would have to go to the rheumatologist but I don't fancy waiting a year for an appointment for that so I hope it wont be necessary."

Mmm - but it might get her off your back and leave you at 5-ish!!!!

[Hidden in reply to PMRpro]

That had also crossed my mind, in which case I would be left in peace to reduce as slowly as I liked from 5. I gotta get to 5 without pain first though and be able to maintain stability at that level. I'm not convinced.

[PMRpro Ambassador in reply to Hidden]

Not - not suggesting for a moment you force to 5mg. If you have symptoms at 5mg, they won't improve staying there whatever she thinks.. I really wish I understood their thinking! Prof Mackie in Leeds doesn't get it either. We assume that they just don't understand the nature of the beast.

[Suffererc in reply to PMRpro]

if you get an appointment at all. My GP has referred me 3 x and no reply. I am on 2.5 . Bit of a waste of time really. She just has to be patient like me !!!

[Ridge]

I can’t comprehend what I am reading! Does anyone like being on steroids? The relief from pain is wonderful but the side effects are horrid. Surely a GP must understand that? . I have built up a stash trying to race to the bottom. I won’t mention that now!!

[Hidden in reply to Ridge]

Definitely keep it quiet, and if needs be play it up a bit next time you speak to the GP so that he/she doesn't over enthusiastically cut your dose to an unmanageable amount and you end up with a big flare. I placed every confidence in what my GP told me about weaning by 1mg every four weeks until I flared, and looking around in desperation found this website and only then started to really come to a proper understanding of what was going on with my own body. I didn't even know about the adrenal issues until 3 days ago and I'm not even sure my GP fully understands it as she's never mentioned that aspect of it to me.

[Ridge in reply to Hidden]

The GP mentioned ‘steroid cramps’ and said the problems I was experiencing was probably to do with steroids messing with my electrolytes and not a DVT as I thought it might be! He offered me quinine. It was a throwaway remark with nothing explained. Rather than go on yet more medicine with other side effects I started my race for the bottom. Then things got really bad! It was intermittently bad and so confusing! I think probably ai. Then rheumatologist told me to go to 10mg for a week then back down to 2mg. I found this site mentioned in Kate Gilbert’s book. I now understand so much and it all makes sense!! I’m on 6mg at the moment, pain free and armed with knowledge, a plan of action and a great deal of gratitude.

[PMRpro Ambassador in reply to Ridge]

Shame the GP didn't explain the steroid cramps - which are mostly due to pred making you lose magnesium via the kidneys. There is plenty of magnesium to be had via diet but somehow many people are deficient anyway - and pred tips them over the edge. Upping the intake in diet with supplements for bad periods helps a lot.

[Ridge in reply to PMRpro]

I’m on magnesium supplements now!! He said potassium so I took potassium!!

[Hidden in reply to Ridge]

So that's why I'm getting sudden cramps in my fingers and toes all the time! I did suspect but was never sure.

[PMRpro Ambassador in reply to Hidden]

Try some magnesium ...

[Hidden in reply to PMRpro]

I will. I've got some cal/mag tabs left over so I'll start taking them again.

[ChinaWuntoo]

GibsonLesPaul: My GP is older and trained in an equatorial country where PMR is, I think, almost unknown. I've done better with locum registrars trained in UK.

However, my GP has agreed to let me taper as I wish (having given him the rationale and a written spreadsheet explaining the DSNS method.

I also gave my GP some academic papers (lots on this site) and I give him the PMRuk news sheet each time.

[ChinaWuntoo]

BTW if your GP wants to refer you to a rheumatologist make sure you've looked over this site for good ones. I had a bad one and sacked him in the end. In these post-lockdown days it is easier to travel outside our areas and it is quite legitimate to ask.

[Doraflora]

my GP is more or less pretty ok about prescribing what I ask for, but tbh I got confused re the amount of meds I took with me on a recent holiday to Cyprus in June.

However, Luckily for me I was directed to a local pharmacy and was literally able to buy them over the counter: €5.60 euros for 100 tablets! So I was fortunate to just keep shoving in repeats for prescriptions from my surgery every month.

I think you need to be gently firm with your GP, GibsonLesPaul, about how you know your body and hope she gets the message.

In almost 3 years of having PMR I’ve never once been referred to a rheumatologist (I was only “diagnosed” over the phone during the pandemic) and would now dread the length of time waiting to see one!

Hope your pain continues to settle.