Never be without Pred,

[bowler]

Hi

I have been taking Pred. for 14 years for GCA/PMR and was told by my Rheumy. " to keep spares in case of a flare and never be without them " especially if it happened at the weekend. The Rheumy even sent my surgery a letter stating this.

My old GP.of 30 years, now retired, new this and would always trust me to dose myself according to my symptoms/flare, after all I have been doing it for 14 years. I would always report the flare to the Dr. anyway.

However the new Dr. would not prescribe me extra Pred recently for a flare

.[ as you are aware if you are taking 20/30mgs a day they soon go and my repeat prescription is only 2x28. 5 mgs. per month which is fine if you are on 5/10 mgs a day, but not enough for a flare ]

saying I shouldn't be doseing myself and she wasn't comfortable prescribing me more Pred. and I need to go back to see my Rheumy,[ whom I'm due to see next month anyway,] but what do I do in the meantime if I run out of them ?

If that's the case, then everytime I get a flare I should see a Rheumy. for my extra Pred!!!!. I dont think he would be very pleased.

Surely all Dr's must know that you cant just stop taking/be without steroids. I even told her that, and if she looked up my records she would see that I am not to be without Pred. in case of a flare,

I suppose if I was so desperate I would have to go to A&E but what a waste of time, especially for A&E who are what they are, and not for prescribing medication.

Thankfully I had enough Pred to take a higher dose, and will make sure that every month I get my repeat prescription to build up my stocks again.

I will be interested to see what my Rheumy says when I next see him.

[venezia1]

I wish this was more surprising...I think where our illnesses are concerned we often have to do a bit of educating, and if that doesn't work, state that you will be seeing another doctor in future - in other words, fight your corner! I imagine

you know more than the doctor does about your illness after all those years, and should not be treated like an irresponsible child.

I always keep an extra couple of months' supply, just in case - I've been dropping from 80mg over the past twenty-one months in order to have both hips replaced, and am down to 15/17.5mg but still have to go back to a higher dose if I get a flare. I don't think either my rheumy or my GP would welcome a visit every time that happens!

Good luck.

[bowler in reply to venezia1]

I wont be seeing this Dr. again!!!. The problem is, since our old Dr's retired [man and wife team for 30 yrs in a small village surgery ] It's gone pear shaped, and we never see the same Dr. I suppose we have been spoilt.

Like you say, I and probably most of us know more about GCA/PMR [ due to reading up about it, and of course this site ] than the Dr's. know. The trouble is they dont like being told, or admitting their wrong.

best wishes

[PMRpro Ambassador]

Hope you remember to check the sell by date!!!!!

I know - I despair at the lack of knowledge on the part of GPs sometimes - but to be honest, there are consultants and would-be consultants who are just as bad!

Today someone said the hospital specialist she saw reckons that PMR is 100% cured and off pred in a year. If you aren't - then it isn't PMR. Okay.....

I was discussing the concept of the "expert patient" with a researcher recently (someone I'd choose as my consultant any day by the way) and whilst we were enthusiastic about the idea - the primary problem is that the GPs feel threatened. I'm very very lucky, my GP here in Italy was a trainee rheumy in an earlier life and laps up everything I pass on to her, but she is unusual. One day...

[bowler in reply to PMRpro]

Luckily all the Pred I have been prescribed in the past years have had good sell by date on them, 2 years at least.

Glad to hear your GP in Italy is willing to listen/learn from you, perhaps they have a more laid back attitude in Italy, like they do with life in general.

[polkadotcom in reply to bowler]

Not sure if this still applies, but I was informed by my Rheumy at the very beginning that should I have a problem with my supply of Pred, then all I need do is rush to the nearest pharmacy with a reasonably up-to-date repeats list and explain that they have been stolen/lost/destroyed/ whatever and because it is steroids they should at least give you enough to tide you over until a proper prescription can be issued.

I've never had to try it having always been kept well supplied, but this might prove useful to someone who is in trouble?

[bowler in reply to polkadotcom]

Hopefully I will sort this out at the hospital on Fri. with my Rheumy.

I live in a village and our surgery supplies our medication, so I dont have to go into town, which is very convenient, so not sure if I could do as you suggest and call into Boots in the town, as they would probably ask why I didn't get them from my surgery if that makes sense ? however it would be better than going all the way to Addenbrooks in Cambridge which is 20 miles from me. I am due to see the Rheumy so I have to go anyway. It's a pity this new Dr at our surgery taking this attitude.

I do recall several years ago that I forgot to order my repeat blood pressure pills. [ It was a weekend and my surgery was closed,] I didn't have any left, so I did go to Boots then and explained what happened and got some from them, although they only gave me 7 tablets to tide me over, they also charged me over £7 for them.!!even though I'm excempt. I suppose I could go to Boots at the weekend for the steroids, as my sugery is closed then.

hope I made sense

[Hidden]

Hi Bowler,

So sorry it's been so long for you - your notes will contain what your original GP advised. He was on the ball and gave good advice - even after recovery each one of us with these illnesses should hold a stock of steroids, incase of any trauma, to back up our adrenals.

How many times have I heard this story? So called professionals who treat their patients like idiots and who do little research themselves.

By the way, steroids are cheap as drugs go, so it's not the cost that's bothering her - I guess you've got a control freak here. Maybe she thinks you just enjoy taking this powerful stuff and enjoy all the side effects you endure to get the pain under control!

I always hold a good stock of steroids in case of emergencies - my GP gives them 100 x 3 different strengths to cover what ever I need. I get them on repeat scripts by phoning the surgery. I'm 3 years into PMR - not as far as you, I know, but I feel that I'm the expert on my illness and he's happy to leave it to me.

By the way, I see my GP once a year just after my bloods, urine

and BP tests. We have the 10 minute chat. I smile at him reasuringly and he says OK, and I leave to fight on alone - that's the way I like it. He's snowed under with work so I'm sure it suits him too.

Lots of luck and I hope things improve,

Pats x

[Loco99]

I also have a bit of a stockpile for emergencies but only ever up my dose if it's necessary, at the moment I'm tapering down my dose. My rheumy trusts me to adapt my dose to suit the amount of pain I'm in. I have a very clued up GP too. Reading some of the posts on this forum makes me realise how fortunate I am.

[Dazey]

Indeed. it will be interesting please come back on this one as I was having a conversation with someone on similar lines.

[bowler]

I called Addenbrooks hospital today and said I needed to speak to my Rheumatologist re- my medication. I explained that I'm waiting for my 6 monthly appointment to arrive and would it be coming soon ? They got back to me at told me to come to the clinic on Friday.

Sometimes these appointments run over the 6 months, and I was in a panic in case I run out of Pred. as I'm getting low on my reserves.

[Classicmike]

I am experiencing a flair up with PMR with awful muscle pains in my legs and hips, I also have GCA and started nine months ago with 40mg prednisolone and got down to 10m a fortnight ago. when the legs and hips started playing up. I have increased the dose to 15mg which I thought was the starting dose for someone with PMR but still getting problems? Should I consider upping the dose even further if the symptoms don't improve? Anyone got any advice?

[bowler in reply to Classicmike]

We all react differently to steroid doses, sounds like you need a higher dose. And perhaps you are coming down too quickly on your doses. Are you under the care of a Rhematologist, or did your GP diagnose you, ? if so you need to go back and see him/her

[Classicmike in reply to bowler]

I am not under a rheumatologist but have a good Doctor I will be seeing him in two weeks time. Thanks for yours advice

[bowler in reply to Classicmike]

Surprised that with GCA you wasn't seen by a Rheumatologist

but like you say you have have a very good Dr. not like some!!!

good luck

[Classicmike]

Hi bowler , I did see a rheumatologist at the hospital who thought my GCA was referred neck pain giving me pain in my temples and recommended that I drop my steroids. 5 mg fortnightly from 40 mg down to 10mg, this triggered massive flair ups and I lost all confidence in seeing him again. Thank god I have an understanding Doctor who not only saved my sight but is very understanding of what I am going through.

[bowler in reply to Classicmike]

So even the Consultants dont know everything !!!! That taper was far to much, no wonder you had a massive flare. I sympathise with you,

I do have a good Rheumatologist, but I'm still battling with the GCA/PMR flares after 14 year. and the side effects of the steroids are taking their toll after all these years. I have never been able to come completely off them.

good luck

[Classicmike in reply to bowler]

Hi bowler, thanks for your support, it is very reassuring to know that there are fellow sufferers who can pass on their knowledge and it is also a comfort to know that your experiences echo others. When I was diognosed I thought that I was the only male in Great Britain who had it?

[PMRpro Ambassador]

"So even the Consultants dont know everything !!!!"

I'm collecting horror stories from consultants - so far we have "there is no pain with PMR". "with PMR you are off pred in a year - if you aren't it isn't PMR", "you only get PMR when you are over 70".

I had a horrendous one too - luckily there was a better GP option...

[Thomas45]

The more I read these posts and those on the Atrial Fibrillation Community within Health Unloccked, I realise what wonderful doctors I have. I'm prescribed 200 x 5mgs and 200 x 2.5mgs at a time.

[Tweetiepie]

HI bowler I have a hospital help line which I used on Friday for 2nd tme doctor call3ed me back. Could you not ring consultants secretary and get her to get her boss to sort your GP out.

[bowler in reply to Tweetiepie]

Hi

I did post on this site , to say that I saw my Rheumatologist on Fri. and he will write to my GP.