Follow up appointment at GP

[Bowdenambleside]

I started on 15mg of Pred on 11th October as my doctor said my symptoms & the presence of inflammation in my blood makes her believe I have PMR. I had never heard of the condition so hadn’t influenced her in any way. She said if my symptoms improve that would confirm what she thinks. She asked me to attend a follow up appointment where further treatment would be decided.

Unfortunately she was on leave so i saw another doctor. I explained that i was feeling loads better and able to get around without any pain. This doctor said steroids can relieve symptoms of other conditions and that it wasn’t necessarily PMR which totally confused me. She suggested i drop the dose to 10mg and if i had a flare up it they could re-assess.

After reading all the helpful information on here i said I wasn’t happy to make a 5mg reduction so quickly as I’d prefer to maintain my ease rather than risking a return of my symptoms. Finally the alternative she offered was a reduction to 13mg and a referral to the Rheumatologist. She said they have a high criteria for any diagnosis and usually only diagnose severe patients.

I’m confused to what she was suggesting and felt worried that she means I maybe shouldn’t be taking Pred...

I have a follow up appointment in another week with my original doctor so are there any questions I should be asking please?

[PMRpro Ambassador]

Steroids CAN relieve the symptoms of other conditions but it is felt that PMR is characteristic in responding speedily to a moderate dose. What a shame the first doctor was on leave - but at least you will see her soon - particularly since it is likely to be a long time until you get a rheumy referral!

I was started on a taper of two weeks each of 15/10/5 and stop. I was fine until 6 hours after I missed the first 5mg dose. It was years before I got to that again - but you can drop like that if necessary in deciding if this is PMR. But since you ahve agreed on 13mg I would be patient and look forward to seeing the first doctor again. The other one is havering - how does she or anyone decide if it is severe or not?

[Bowdenambleside in reply to PMRpro]

Thanks for your reply It’s very helpful & I’m confident that you are much more knowledgeable than me. The fact that you initially tapered at that rate gives me some relief and to know it is a possibility. However it is a worry that it took you years to get back to that point after you missed a 5mg dose 🙁 and I’m terrified of my symptoms coming back as I’ve had a terrible year health wise (gynae problems & total hysterectomy in April this year) and my resilience is running thin.

I agree it’s hard for someone else to say whether or not it’s severe and i felt it was massively impacting on my life so ‘severe’ to me. Thanks again for explaining things for me & this site has been a godsend! 👍🏽

[PMRpro Ambassador in reply to Bowdenambleside]

I'm very unlucky - I am one of the approx. 5% for whom PMR is a very long winded process!

I know how you feel - I had an interesting spring which finished with a collapse and needing a pacemaker. Though that is nothing compared with your op - it, combined with OH's health problems, still has left me feeling a bit punchdrunk!

[Bowdenambleside in reply to PMRpro]

I’m sorry that it is a long winded process for you & that your year hasn’t been great either. Having a collapse and needing a pacemaker is a very serious thing and coupled with your OH’s health problems may have impacted on you just as much or more than my op so here’s to acknowledging it!🤗. Let’s be punchdrunk together 😀

[Hidden in reply to Bowdenambleside]

The best advice I have seen recently is from the NICE website here: cks.nice.org.uk/polymyalgia.... Basically, they are saying that other causes of your pains should be excludued before a trial of steroids and recommend a slow taper if there is a good response.

I'd read it and see if that's the approach your doctors are following. It sounds to me that the second doctor may be too afraid of steroids. Maybe your first doctor recommended it too quickly, but a rapid response ro steroids suggests she was right.

What puzzles me is how different doctors in one practice can have such different approaches, especially in the presence of such clear guidelines. This must generate a lot of work for them if it also applies in other areas as well as cause anxiety in their patients.

[Bowdenambleside in reply to Hidden]

Thanks for this. Yes it puzzles me too how doctors in the same practice can have different approaches & responses to the same patient. It definitely does cause anxiety & confusion when trying to help yourself too.

[tangocharlie in reply to Hidden]

I saw 4 different doctors in my practice until I found one who diagnosed PMR, it took me 8 months to get a diagnosis! And then I was started on 10 Pred which I think in hindsight was too low.

[Bowdenambleside in reply to tangocharlie]

How frustrating! How are you managing now?

[tangocharlie in reply to Bowdenambleside]

The PMR merry-go-round, I seem to go round in circles. One day, all this shall pass I'm sure. All the best to you for a smooth PMR recovery

[Bowdenambleside in reply to tangocharlie]

Thank you & all the best to you too.

[Hidden]

Surely you decide how severe it is and how much relief you get from 15mg pred. Your apprehension of pain returning supports that. As pmrpro says there can be others things that can be helped by pred, but your first Dr was following the protocol. The good thing is that if you flare at 13mg then you know for sure and yes, see the first Dr ASAP. Its very common for pmr to be proceeded by physical and/or emotional stress and it sounds like you had a stressful time too.

You can make a list of all symptoms and a time line. Try and put a number on pre pred pain and pain during the week on pred. Just as a point of interest you could ask if there are any dietary issues you should be aware of on pred. Ask if you can use a dead slow nearly stop tapering plan (see below). How often they will check inflammation markers... Remember the should come down on pred. It doesn't mean it's gone. Just controlled.

healthunlocked.com/pmrgcauk...

🌻

[Bowdenambleside in reply to Hidden]

Thanks for the advice and suggestions. Much appreciated. I’ve been on 13mg for 2 days now and feeling ok so fingers crossed 🤞🏽. From reading on here & online i made changes to my diet to try help myself: no salt, no sugar, no alcohol (I do have alcohol free wine & beers) & cutting out most carbs.

[PMRpro Ambassador in reply to Bowdenambleside]

I didn't find alcohol or not made the slightest difference - but beware the alcohol-free versions because they may well have a lot more sugar - and I DO find that makes a difference.

[Bowdenambleside in reply to PMRpro]

Thank you for letting me know...🥂

[AndrewT]

Dear Bowdenambleside,

To answer you....YES, Yes prednisolone Can alleviate- even 'Musk' other symptoms....and YES you should DEFINITELY see the First Doctor again! I WOULD discuss, ALL these 'points', with her- in Detail- explaining exactly How You Feel.....Not easy, when your not 'too sure' yourself🤔 (apparently a 'Thinking Face', in case you were Wondering))

PMR, indeed ALL 'Auto-Immune Conditions', are a VERY Difficult area. My own Condition, finally diagnosed after some years, is 'ANCA Vasculitis'- however there are Five Overlapping 'Strains'. It would appear, to ME anyway, that NO two Conditions are Exactly the same- though symptoms, and indeed, Treatment(s) are often similar.

Please DO 'Post' again Bowdenambleside, if you EVER feel the need. I assure you that WE are ALL 'here' and Don't 'Mind', in the least, actually we would love to hear from you.

Good Luck, kindest wishes

AndrewT

[Bowdenambleside in reply to AndrewT]

Awww thank you so much for your words of advice and sharing your diagnosis AndrewT. I hope you are managing well & yes I often have the ‘Thinking Face’ recently 🤔. Best wishes to you too!

[Whitner]

I too am newly diagnosed. I started on 20 mg for one week then reduced to 15 mg just a few days ago and so far no serious return of symptoms! I hope the same is true for you!

[Bowdenambleside in reply to Whitner]

Glad to hear that you’re doing well. I feel less anxious hearing that thank you.

[Ebn49]

Hi Bowdenambleside, I'm a relative newbie here too, diagnosed in June and only after speaking to 3 different GPs (on the phone, difficult to get appointments in person). The first doctor offered to refer me for physio (still on the waiting list for that, although by now with the PMR I feel like I would have been in a wheelchair), the second was only willing to consider PMR when I said my brother was diagnosed with it (at 60). I still sensed she was sceptical, saying she'd never known anyone have it at my age (58). But she agreed to a 5 day trial. She was then on leave for a fortnight, so another doctor heard me describe how 30mg Pred had made me feel I was not only risen from the dead but was 30 years younger - and diagnosed PMR in 2nd doctor's absence, albeit on a 15mg dose (which brought me down to earth!). When I spoke to 2nd doctor a couple of weeks later she seemed more anxious about me coming off the Pred than anything else. However I've learned so much from this forum, and am managing the tapering on my own terms. I had my 3 month review on Friday and actually met the (2nd) doctor for the first time - went in armed with my dosage record, told her I was on a strict low carb diet and had actually lost fat around my waist, told her about my plans to follow a DSNS ('dead slow nearly stop') taper from now on now that I'm at 10mg (which I found from this forum) and she pretty much said 'you seem to be on top of it so manage it as you see fit'. She also seemed more realistic about the length of time people tend to stay on the Pred (she admitted some people never manage to ditch it entirely, which is quite different from her original line which was 'you should be off of it within 2 years'. ) The only thing I have yet to negotiate with her is the need to take Alendronic Acid or something similar, which I'm (at the moment) not happy about. But she agreed to a DEXA (bone density) scan prior to discussing. This is something you might read up about on this forum before you meet with your GP as it's bound to come up if not now then at some point. Good luck in your PMR journey and welcome to the forum, it's brilliant.

[Bowdenambleside in reply to Ebn49]

Thank you for sharing your experience, it’s very helpful to hear. I’m glad that you’ve got to a good place with your doctor now & that you ‘are on top of it’. I can aspire to that 😊. And you’re right, this forum is brilliant!