I'm an avid reader of the posts on here and was just wanting to 'clarify' something that seems to be talked of often - the raising and lowering of our Pred dosage?
I'm newly diagnosed to PMR since May 2015.. so forgive my ignorance or lack of knowledge, but I often hear people saying I'm going to lower my pred to [such and such] or increase it to [such and such]
My query is, is this run past the Doctor/Rhuemy first or do you all just do it regardless?
Sorry if I'm missing something but need to clarify before I do something silly??
Hi, when newly diagnosed you will have a tapering schedule from your Dr or Rheumatologist. It will usually be to reduce by 1mg per month.
Often the Drs will give you a bit of a free rein, working within certain perimeters. So if you have increase in pain you can go up by xmgs but no more than x. With the reductions some people find the 1mg per month too much and with agreement from their Dr use a slower method which you will possibly have seen mentioned previously. Although the schedule is 1mg per month, you should never reduce if you are still in pain, and therefore some people will delay reducing, or try 0.5mg drop instead, but these rules are usually in agreement with your Dr. Hope this helps, hopefully you will have no trouble tapering. Don't forget this forum is mainly used by people who are struggling with their PMR or GCA, and their are many who make a textbook recovery
Hi Runrig,So happy you added that last sentence, that a lot of people make a textbook recovery from this awful condition we are all fighting/or should I say dealing with . I have been a fighter all my life (sport, kick boxing etc) something I have always done no matter how painful or down I have felt I always search for the positive I can take from it . That always get me to the next session or dose of pred, stay positive and keep talking it's the route to our recovery . 😀😀😀
Hello syzygy, when we are diagnosed with PMR most dr's will immediately put us on a dose of 15mgs which is the standard starting dose for PMR control. However there are some patients whereby 15mgs is not enough and patients return back to their dr's and tell them so. Often dr's will then tell their patients to go up to 20mgs in an effort to bring under control the inflamation. Most of the upping and Downing of preds is either due to regime reductions in the case of Downing, or the upping due to flares, when we have reduced by just that bit too much and therefore the inflamation takes hold again or because we are temporary suffering from an additional stress factor that could literally be stress, a house move, getting ready for a holiday, family problems etc, or a physical stress, a cold, a cold sore, broken bones etc.
However, we are all different and so we all react differently to the preds. But if all things were level, and our dr's all knew what they were doing! We'd all be treated inline with the Bristol PMR plan with a bit of tweaking here and there to suit our individual make up. Some of the tweaking we simply do ourselves, especially if we've been on this PMR ride for a while, and we have confidence in what we do or our dr's are happy with us tweaking here and there. For example I suffer terribly from cold sores, and reducing is never recommended when you have a cold sore, so I simply stay on the current dose for 2 weeks longer and when the cold sore is done and dusted attempt my reduction then. I know that reducing when not well could be silly because other conditions, medical or not adds stress to our bodies and this added stress could tip the balance because the preds can only control so much.
Then when we reach the magical 10mgs stage, many if us ditch the Bristol PMR plan and follow a plan called dead slow and almost stop. It was devised by a lady named Eileen (yes, Eileen I'm sure I know who you are in this site!) but anyway, this plan is very slow and the reduction drop is less then even Bristol plan. I follow this plan but again I have adapted it slightly to suit me. When I visited my rheumatologist I asked if it was ok to reduce even slower and he was very happy for he to do that especially after suffering a flare. He suggested I introduce one day tye old dose the next day the new dose, but I do 1 day new dose, 5 days old, 1 day new 4 days old, 1 day new 3 days old, etc the. When I get to 1 day each I stay on that fir 2 weeks, then go onto the new dose totally. The point is both regimes work, and are very similar so I have chose the one that I feel happier with.
There are some patients who in my opinion receive very poor care from their rheumatologists and or gp's often because these professionals are inexperienced and if it wasn't for these patients following the tapering regimes or the temporary upping of preds recommended by fellow pmr's they would be list. I tell my GP everything I do re my treatment plan and she has always been very happy with what I've done. Also when I visited my rheumatologist just 3 weeks ago he said, slowly and surely, that's the way to do it. Regards, christina
Thanks - It is getting to be a much clearer picture now with all this advice from fellow sufferers.. I've only seen the Doctor twice since diagnosis and awaiting to see a rheumy? I know it's early days and feeling somewhat 'neglected' in all this from my GP's stance ( the last visit he only prescribed 50 tabs - 5mg which will last me just over 2 weeks?) and never said anything about a further appointment.. I was getting low on preds this last week so put in a repeat prescription for collection. When I went the 48 hours later they were not there.. I was told they had recieved the prescription but were waiting on the Doctor to sign it (basically being reviewed) but I only had 2 days left (7tabs) and it was the weekend???
Perhaps it is just me, but I get the sense and feeling I'm not getting the care I need as such, my last visit was to set up seeing the Rheumy and that was over 4 weeks ago? I have another blood test on the 16th July but no appointments until then to further see the Doctor? Is this the normal procedure or amI right in thinking the practice are a little slow?
Syzgy, not "ignorance" at all but a very sensible question, and a very important one especially for other 'newbies' who might be somewhat intrigued and misled when reading of people who appear to be just reducing and increasing their doses willy-nilly.
Basically, for those of us who are under either a GP or rheumy who is knowledgeable about how to treat PMR (or at least one who is prepared to read the Guidelines), we will be given a treatment plan to follow and routinely checked via blood tests and our symptoms along the way - sometimes the plan will need to be tweaked as each one of us can respond a little differently to both the disease and the treatment.
Many people will have textbook recoveries under their doctor's care and never feel the need to look for answers on forums such as this.
However, some people are not so lucky and find they are not improving under their doctor's care due to such things as being prescribed either an inadequate starting dose or one that is way higher than necessary; being advised to reduce from the starting dose far too soon or by too great a decrement, being unaware of the need to reduce ever more slowly the lower we get on the dose, etc. It is then that you will read cries for help and see replies from those of us who have had years of experience with PMR and/or GCA, who can point the enquirer in the direction of such things as the BSR guidelines for the management of PMR and other expert material, whilst perhaps, at the same time, where necessary suggesting an increase in their steroid dose to hopefully relieve their painful symptoms.
It is certainly not wise for anyone to feel that they can just increase and decrease their steroids at the drop-of-a-hat - this can result in yo-yoing the dose which can just lead to making future reductions even more difficult. Much better to get your doctor to work with you, monitoring you along the way - even if this sometimes means educating the doctor and, if that doesn't work, changing the doctor!
Do purchase Kate Gilbert's book 'Polymyalgia Rheumatica and Giant Cell Arteritis: a Survival Guide if you haven't already done so. It is available from PMRGCAuk pmrgcauk.com, and from Amazon. It will answer a lot of your questions, and all royalties are donated to the Charity.
I have downloaded the book and reading up on it as we speak. I was diagnosed and given 15mg of Pred by my previous doctor who has since moved to Australia. He gave no advice other than the tablets? My next appointment was with a new GP who seemed to know something about PMR? I mentioned a Dexscan and he said you'll not need that for a while... he then prescribed VitD3 and calcium and AA and just 2 weeks of Pred. He then said he was following the Cornwall and Isles of Scilly guidelines and because I was under 60 years... (i'll be 59 this September) he said he had to refer me to a rheumy because if he didn't the practice would lose vital funding??
He said he would like to have treated me, but now it was out of his hands and I should await the appointment with the Rheumy at my local Hospital in Truro - 4 weeks ago now... and it seems my Doctor has just wiped his hands clean of it??
I'm at odds now as to whom I turn to... it's difficult enough as it is trying to get an appointment.. they are always fully booked 2 weeks in advanced.. and you have to take pot luck at 8.30am every morning and the lines are usually very busy and when you do get through it's a case of try again tomorrow??
When I went to collect my meds this friday gone, they were not there.. Doctor hadn't signed them although ordered 2 days earlier? I wasn't very well and had to get my neighbour to take me to the surgery at 3pm... only to be told call back at 5pm and we'll see if Doctor has signed it then??
I don't want to complain as it means no doubt they'll ignore me and treat me as a potential trouble maker, and changing practice means a 10 mile trip to the next?
This type of treatment towards patients seems common in Cornwall having spoken with many other people... the Local NHS is £112 million in deficit and they're trying to shut hospitals. The nearest cancer service is in Devon so people have to travel literally hundreds of miles to get the treatment? It amazes me when people say they get a wonderful service from the NHS.. they perhaps do, but here we don't... something is seriously wrong?
The GP and practice are too slow. Syzygy, you will be on this treadmill for 2 years plus and steriods are not easy drugs. These high doses have shut down our own adrenal system so on such levels we have no other steriods in our body other than the ones WE are putting in, the preds. Our bodies require approx 7.5 per day of steriods each day to survive. So even 1 day of no steriods will hurt us and 2 days without steriods we should be presenting ourselves to and emergency department. Book and appointment with your GP ASAP and with a print off of the Bristol PMR plan, simply say that you believe you are being treated in line with this therefore require, a prescription of x amount of 5mgs and x amount of 1mgs. At the very least ring the survey and request an emergency prescription. You should never allow your medication to run so low. I used to do that, (hate having hundreds of medication hanging around the house), but my pharmacy told me to always have 2 weeks worth of medication in reserve just in case problems do arise. christina
As in a Post I've just done with Celtic... it's like it all over here in Cornwall? The Doctor shortage is so severe now.. my Doctor has done a runner and moved to Australia seeking better pay and conditions and life... My new GP has passed me to the Hospital and doesn't now seem that keen to see me.. I don't want to start making waves, practices are limited here in west cornwall and if you don't live in their catchment area.. they won't accept you?
I've been reading some of PMRpro's comments and read this earlier -
[[[ To be honest - if you have a sensible and trusting GP you are better off with a GP caring for you. And the other tbh? I suspect that the patients who disappear after a couple of years of this sort of treatment are not cured of their PMR - they have given up in disgust at a doctor who won't let them say how they get on, or if they do promptly ignore it. I faced that at the second hospital appointment when I saw a different doctor who wasn't rheumy trained (another GP, had one of those at home) and the consultant was dismissive and rude. At that point I still didn't have a diagnosis. So did he think it was all in the mind? I never went back to find out.]]]]
I've looked at the Kirwan plan and it states that when started on 15mg of pred usually within 6 weeks they start the very slow reduction (being on 15mg longer can mean it more difficult to come off them) I've been on 15mg over 6 weeks now and am just stuck in pergatory now?? My Doctor won't/can't deal with me because he's more concerned about his funding than my health.. and it may take weeks or months to see a rheumy because of the crisis here in Cornwall... I don't have many choices for changing practice as I'm not in their catchment areas and they stick to the strict rules... I'm really not sure what to do now?
What a mess! It sounds as if your GP et al have no idea about PMR. as you have another blood test booked for 16 Jul can't you make an appointment to see GP a few days later when he should have results. That's what I've always done, at current and previous surgery. If you can't get into see GP then tell the surgery you want to be given the results of the blood test over the phone. I appreciate you are in a difficult situation, but sometimes you just have to make a stand and Im sure with your background you can do it politely but firmly.
As you say, you've been on Pred for six weeks, so they are in your system anyway, so I would suggest, you stay at that level until your next blood test as that only just over two weeks away. And then, if you can't get into see GP, and depending on results, assuming you can get them, and you feel ok in yourself reduce slowly, and I mean slowly and in small drops .-1mg at a time.
My GP always maintains that you should only reduce when you feel ok, not just do it as a matter of course, and that your body will tell more than the actual blood results.
As tina-Shelley says always ensure you have plenty of tablets, at least you have them on repeat, although that doesn't seem as straightforward as it should! I wish you good luck! Life shouldn't be this difficult.
Usually after the blood test they ring me anyhow and I can book then? When I see my GP (before the Rheumy??) not sure how long that appointment will take... I'll ask the doctor to give me a good supply of pred and also 1mg tabs as they are all 5mg at the moment? I've been looking at the Bristol plan and aim to go with that...
Did you get your steroids after all before the weekend? Or have you gone the whole weekend without them? You can always present yourself at A&E if you have run out or if you are not happy with the lack of treatment, they are obliged to see you and give medication especially in a case like yours and they should always treat you as an emergency.
If you still are not back on the pred now, please go to hospital or you could go to the pharmacy who could tide you over until your prescription is signed.
Hi PMRandRA - I had to wait for a couple of hours but managed to get the Preds by 5pm, had called in for them at 3pm. But I didn't know that you could go A+E? I'll bear that in mind for the future.. thank you!
So glad you got them. Yes, especially GCA is classified as a medical emergency and you can even call 999 if you need transport to get to A&E. So because PMR is so closely linked to GCA, they are emergencies. Because a person could lose their sight and even if someone hasn't been diagnosed with GCA it could still be lurking.
I have been following your posts as I live on the Lizard.
I was extremely lucky with my GP who immediately diagnosed me with PMR&GCA and put me on 60mg pred. This was in Sept 2014. I saw a brilliant rhuemy at Falmouth hospital within 4 days and (touching wood as I write) am now down to 7mg reducing again in two days to 6 mg.
He give has given me a prescription each time he has wanted me to reduce for all the preds I will need until I see him next, I can also get repeats no problem from my own surgery as my GP set up a repeat for me at the time of my diagnosis. My rhuemy also sends me a report of my visit with him and instructions for what I need to do until I see him next which will be in August. I also take aspirin, omeprazole, and calcichew each day. I was given AA, but it made me feel even worse than I already was at the time, so after having taken it for a month I went to my GP who stopped it and put me on risedronate, I have got on fairly well with these. My 60 mg starter dose of preds made me feel wonderful within two days as far as all my pain was concerned, but the side effects of the preds made me feel rubbish. I forgot to mention that I did have a biopsy for the GCA but it came back negative, my rhuemy told me it might but he said he was still convinced that I had GCA as I had all the typical pains including the jaw pain plus my sight faded for about 20 minutes in one eye.
I caught a cold from one of my grandchildren in the new year and this set me back quite a bit as I ended up with sinusitis which took until May to clear up.
However I think I have been very lucky compared to lots of others that I read about on this forum. I am now feeling much better, able to do more than I was a few months ago, I am careful around the time I reduce (1mg a month) and am very aware that it could be a crucial time that I am at now. I have blood tests each month and the results are checked when back at the surgery when one of the GP's will ring me if there is a problem, so I haven't needed to see a GP since 7th April
I think I know what surgery you attend, the clue was in the GP going to Australia, my sister uses that surgery and has found that one of the new GP's is very understanding, we have a brother with learning disabilities and he was really good with him. I hope that may be a help to you.
Sorry to have gone on so much but hope that when you get your appointment to see the rhuemy it might be the same one and he will look after you.
Thank you for your kind response. The surgery in question is in turmoil at the minute, there are only three doctors, two have left and two new one's have arrived.. on male and one female.
I saw the male, who arrived half hour late, and didn't seem to know the system he was using calling it old and antiquated.. Lol... The prescription saga was because the female doctor who was supposed to have signed the prescriptions was also very late by an hour, I suppose we have to give them time to 'bed' in as it were?
I shall be chasing up my appt with the rheumy today, I think I read a notice in the surgery to say if you didn't have a reply within 2 weeks to let them know.
You've done extremely well in your journey so far, I'll keep my fingers crossed for you that all goes well in your treatment and final conclusion. You have given me some good information there because to be honest I've never ever been ill in my life and in my 58 years have not had much to do with doctors or practice procedures so learning all the while? I didn't know you could set up repeat prescriptions, had I known I could have mentioned.. but hey ho I know now!
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