Considering increasing dose of pred for PMR

[Purplegirl70]

Hi,

What are peoples views on increasing the amount of pred taken daily without seeing a GP first? The reason I ask is that I am struggling on my current does of 15mg daily but cannot get to see my GP until 5/12.

[DorsetLady PMRGCAuk volunteer]

Hi,

Probably depends on your GP - do you think he will be happy for you to do that? Is there anyway you could speak to him tomorrow by phone not face to face - most surgeries have that facility. Obviously if you can’t contact him you may have to make the decision yourself, but if you’ve only just started Pred it’s not really something you should do willy nilly, and we aren’t medically trained so we can’t tell you what to do.

Couple of questions might help us though -

How long have you been diagnosed- how long on 15mg - have you over done things in the last couple of days to make things difficult ?

[DorsetLady PMRGCAuk volunteer]

Hi again

Just read your previous posts - see you work full time - so maybe you need a bit more Pred, but that’s up to GP.

Is it possible to ease off a bit and see if that helps?

[Purplegirl70 in reply to DorsetLady]

I am considering the possibility of reducing the amount of hours I work but I would struggle financially. I'll cal the surgery tomorrow and see if I can speak to a GP

[DorsetLady PMRGCAuk volunteer in reply to Purplegirl70]

Good,

It might be an idea next time you see GP to talk about you increasing if you need to without having to contact him. Some are a bit more amenable than others, I think it depends how confident they are with PMR. Even if he’s not too keen it’s worth having the conversation.

I realise it’s not easy when you are still working, but if you could reduce your hours it would help your PMR.

[Rose54 in reply to Purplegirl70]

Hi Purplegirl70

If you are thinking about reducing your hours don't forget you wont be paying so much tax or NI .

I reduced hours form 35 to 25 a week

Was working full time for over a year and all was fine then had a flare and knew it was time to take some action .

Rose xxx

[Purplegirl70 in reply to Rose54]

Definitely food for thought. I really need to work out the financial implications fully, I just wish i had the energy

[Rose54 in reply to Purplegirl70]

On can only say from my own experience I am not much worse off financially and still manage to do things I enjoy

[GOOD_GRIEF]

I've found that some days if I take .5mg or 1mg more, it makes a real difference. Then I drop back down on the next day. I don't do it often, but I find on bad weather days, or days after stress or long hours, I do better if I give myself a break. The aches go away and stay away, even after I return to the lower dose.

However, I have no increased blood pressure or blood suger issues, so I don't worry about it.

Why not call the GP office or the nurse and ask for guidance until you can see the DR?

[Purplegirl70 in reply to GOOD_GRIEF]

Ghanks. I'll call them tomorrow

[SheffieldJane]

You've been on 15 mgs for a number of weeks without significant relief of your pain haven't you. Normally that would indicate that 20 mgs would have been a better starting dose for you. Can you speak to your doctor on the phone and give him your rationale for increasing to 20 mgs. I'd love for you to experience the proper relief of Pred. But of course I don't kno w your medical history and whether a cautious starting dose was indicated for you.

[PMRpro Ambassador]

Two things spring to mind here: your GP should already have tried a slightly higher dose to see if it DOES achieve the desired response in PMR. And since you ARE young - he should have referred you as an emergency to a rheumatologist. As a codicil - you are probably expecting to do too much if you are still working fulltime.

Prof Mackie in Leeds says she starts on a considered dose for a patient which she reviews after 1-2 weeks (it will be at least 15mg). If the response has not been good enough she raises the dose to the next level. The usual expectation in PMR is a 70% global improvement in symptoms within a week or two. Some patients may have it in hours but others do take a bit longer.

The latest Recommendations say "the lowest effective dose in the range 12.5 to 25mg/day and never above 30mg".

rheumatology.org/Portals/0/...

[Purplegirl70]

Thank you. So far no mention has been made of a referral to a rheumatologist. It may well be something to raise when I have sorted out this 'flare'

[Purplegirl70]

Just rang the Drs and now have a telephone appointment booked for next Wednesday at 8.45am. Still seems like a long way off but at least it is within a week

[Hidden in reply to Purplegirl70]

That is a long way away when you are suffering. I thought we were guaranteed a call back same day? Look after yourself.

[PMRpro Ambassador in reply to Purplegirl70]

A week for a TELEPHONE appointment is ridiculous.

[piglette in reply to PMRpro]

A week for a telephone appointment is average at my surgery and three to four weeks for a face to face appointment.

[PMRpro Ambassador in reply to piglette]

Have you seen the figures for loss of GPs? In the last year 1,193 have gone. Since MrJH claimed he'd increase the numbers by 5,000 by 2020. Not a promising start is it?

[piglette in reply to PMRpro]

Mr JH has trouble with mental arithmetic! Frightening the number of GPs who are leaving and a lot of others going part time. They are all terribly against a new system though set up by a GP when they will talk to you on line in minutes by a company called Babylon. The GPs say that you will not know the doctor and they will not know you, it is not like having a regular doctor for years who understands your needs. I thought this rather a laugh when I look at my surgery where we have a massive turnover and it is just luck which doctor you see, as none of them seem to work more than twenty hours a week.

[PMRpro Ambassador in reply to piglette]

One of the men in my practice in Durham said very bitterly half the problem was the women who had become GPs and then wanted only to work part time when it suited them and have oodles of maty leave. Leaving the men to cover. The chickens are coming home to roost perhaps?

[piglette in reply to PMRpro]

The person who takes the most time off in our practice is male. He says he works sixteen hours a day!

[Purplegirl70 in reply to Purplegirl70]

My dose has been increased to 20mg. Let's hope I'll see an improvement soon as had to take the day off work due to fatigue

[PMRpro Ambassador in reply to Purplegirl70]

The pred doesn't really help the fatigue unless you experience the Duracell Bunny effect from the pred which apparently cancels out the fatigue - until you do too much and eventually crumple in a heap.

The fatigue is up to you to manage, it is a part of the underlying autoimmune disorder and has the same sort of effect as flu does in making you tired.

This post has some helpful links to explain and help you approach dealing with it:

healthunlocked.com/pmrgcauk......

It is well known that patients who are working tend to need a higher dose of pred to manage their symptoms - but the pacing and resting is as much a part of managing things as the pred is.

[daworm]

here's what I did when I was in that same situation a month or so ago...at first my starting dose of 15mg was a miracle, then it wasn't...I figured if I'm taking pred at least it should work so I used my patient portal that my Dr.s office has, very useful for emailing his office or reading the results of any lab's and exams....I emailed him and asked if I could go up to 20mg's....hour later got a reply, "o.k. we will try that but no higher..if you feel the need to go higher after a few days we have to see you"....20mg did the trick for the most part..now I'm on the second day of 15mg having slowly tapered from 20......good luck, don't be afraid to take control!!! Your the boss??

[daworm]

I also asked him recently about knowing that I will have a busy day or I'm having a bad day, can't I just up the dose for that day...'not really a good idea to start doing that, you'll find you'll be doing it too much on too many days"..probably right...but he did say.."if you are having a bad day the very most you could try would be 1mg...its that powerful..please don't do it often"....so far I haven't done it at all....

[Purplegirl70]

Unfortunately my practice has disabled the email option in their web portal

[piglette in reply to Purplegirl70]

My practice never rose to the giddy heights of an email option, they are still using fax.