Hello again, good people. I posted a few weeks ago when newly diagnosed and have learned a lot from your advice but I think I need a bit more. I said then my GP wanted me to begin a taper from 15mg prednisolone after a month to 10mg. At 4 weeks on pred (last Thursday) I had bloods taken - ESR 8, CRP 2, which I think shows the pred is doing its job (they can't find the results of these from when I was diagnosed). I had to go to the surgery today as I had only 2 days pred left. The GP had refused a further prescription until I had had those repeat blood tests. A message was left for the doctor: I wanted to know what the plan was etc. I got a message back via the receptionist saying a repeat prescription had been sent to the pharmacy but when I picked it up it is for 10mg a day for one month. The advice here was that is too quick. I still have 6 x 5mg tabs left which I am thinking of halving so I can at least have 12 days at 12.5mg to ease the transition, although it is not as long as recommended.
Also there was nothing about calcium and Vit D tabs (or thankfully the dreaded Alendronic Acid!) If I buy over the counter calcium and Vit D, would they be the right strength?
I did say previously this GP is not helpful but can't see my way through to another at this practice unless I complain and I don't think I can do that. I will try at week 3 from now to see if the GP will advise me about what further to do. Other than that there is a reputable private consultant who has a special interest in PMR/GCA not too far away. Would I upset my GP if I had a consultation with him?
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MarionA
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Since your GP obviously hasn't a clue how PMR works and how to taper a patient with PMR and on pred - I really wouldn't care if he were offended or not!
good advice from PMRpro. I would reduce by 10% only and do it at intervals dictated by how you felt not a strict time period. try 12.5 if you want to but at the first sign of symptom return increase the dose. You really don't want a flare or to yoyo.
Sounds as if your GP has little/no knowledge of PMR and tapering - and is only used to prescribing Pred in acute cases, like asthma /COPD attacks….
You need to find one one who does understand your illness… and even if you do go down to 12.5mg [although it is a recognised taper not everyone can achieve it successfully] there is no guarantee it will work, but it’s the best you can do in the current circumstances - so good luck…
Thanks to you all for the helpful replies. I realise I have to go with how I feel and adjust the dose accordingly AND stand up for myself by justifying this to the GP. Easier said than done but as I am the one living with PMR I think I do need to be a bit more assertive.
After symptom onset I was given a priority rheumatology appointment within 28 days. (After initial trial response to Pred my GP kept me high and dry). Rheumatology confirmed PMR and authorised Pred starting at 15mg reducing to 12.5mg after 4 weeks, then 10mg for 4 weeks, reducing thereafter by 1mg per month. Of course getting off Pred - meaning the immune system had repaired itself - in 12 months was pie in the sky. 3 1/2 years on and I’m down to (mostly) 1mg.
In short, yes, I would seek an appointment with a rheumatologist.
Print off and give them the national guidelines which I think are on the PMRGCA Uk website and ask them why they are deviating. Difficult to do but less difficult than PMR flare.
There is someone on the forum who keeps list of good rheumys - you can pm them for the list. Forget who it is. If no one responds, start a new flare. Good luck.
I buy osteocare tablets. They have a bit of everything in and are in all the big supermarkets and health food shops. I also take omega 3 fish oil. Neither are expensive. I’m happy with the doses because anything helps. Good luck.
Hi MarionA, it sounds as though your GP has diagnosed PMR and hasn't referred you to a Rheumatologist, am I right? My advice would be to ask (insist?) on an urgent Rheumatology appointment, as it certainly doesn't sound like your GP knows about PMR management and to be given Pred without any supporting medication (Adcal, Folic Acid, etc) could lead to future problems. Although getting to speak to my Rheumy is almost impossible, there is an advice line that Specialist Rheumatology Nurses run who are caring, lovely and who do their very best to get answers and queries sorted. So, being under a Rheumy may give you access to nurses who can help you. Alternatively, if you have a good Pharmacist, you could ask them about Adcal etc and they may be prepared to speak to the surgery on your behalf, politely suggesting that it normal for other drugs to be prescribed along side Pred. Good Luck.
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