PMRGCAuk
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New to this forum, new to Polymialga

New to this forum, new to Polymialga

I have been prescribed 3 weeks of 15mg prednisone then to gradually reduce, told by my dr over the phone as NO appointments possible all diagnosis done over the phone.

My two older sisters all in their 80’s have Polymialga.

My dilemma is how do I reduce gradually, 3 weeks 15mg, then 1 week, 10mg then 1 week 5mg, otherwise my prescription runs out. Help PLEASE.

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Welcome to the forum Rosie2018 and what a beautiful picture.

You probably need to get the first available appointment to discuss your treatment and stock up on prednisolone and also Calcichew to protect your bones from calcium depletion. The taper you mention is simply NOT going to work, unless it's not actually PMR that you have.

I'm sure you already know plenty about PMR if your sisters have it, but each of us has different experiences and I'm sure there will be plenty of advice to follow. You are in excellent company on this forum.

Blessings, Chrissie

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Greetings and Welcome Rosie :-)

These are only my thoughts and questions, since I'm not a medic and can only speak from personal experience of PMR and my knowledge gained from this excellent and trusted forum over the past 3 years:

First, have you had a formal diagnosis of PMR (Polymyalgia Rheumatica) by an experienced Rheumatologist who can eliminate other, similar vascular or other health-related conditions by doing the relevant tests and examining you physically? If not, and although in good faith and with the best of intentions, your GP might be just making assumptions based on your stated family history of PMR - and he / she may or may not be correct in this. Either way, my feeling is that you need a specialist opinion to either confirm or challenge your GP's opinion and assumptions.

Second, it's a bit worrying that your (or any!) GP will not offer to sit down and talk with you about your symptoms especially if they are typical of PMR, ask the relevant questions and then make a more informed decision. Without seeing and talking with you, how can they?! Personally, I would be pressing for a 'face-to face' discussion to ask for more information and reassurance one way or another.

Third, as for the suggested ('fast' in an unproven PMR context) tapering regimen: your GP may be right in testing their theoretical diagnosis by prescribing a short course of Pred to prove things one way or another in terms of the usually experienced almost immediate relief from suspected (but as not yet not proven?) PMR symptoms. However, this, again, seems like a rather casual approach without also referring you for further investigations by an experienced (in PMR) Rheumatologist to firmly establish that you have PMR or otherwise. In which case, your GP's suggestion re. tapering the Preds might not be appropriate in context and could potentially set you back further if you do indeed have PMR - or have any signs of the far more serious symptoms of GCA (Giant Cell Arteritis).

There are also simple blood tests (ESR and CRP) to measure the inflammatory levels often associated with PMR, which either your GP or a Rheumy should do as routine. Although not always 100% reliable (you can have PMR despite having 'normal' range inflammatory markers), these are usually another reliable indicator of PMR disease activity if your inflammatory markers have previously been 'normal'. But, of course, you might not have had these types of blood tests previously unless you have / have had other relevant health conditions...

In my experience: to get a reliable and unambiguous PMR diagnosis, it's often a case of eliminating other comorbidities first, and then 'joining-up the dots' symptoms-wise with the appropriate medical expertise from a good Rheumatologist.

I hope this helps, but I'm sure the forum's 'Aunties' (experts / PMR Veterans) will be along soon with their opinions and thoughts too. You are in good and trusted company here...

Either way, please keep us posted and try to keep smiling on the PMR Journey (if you indeed have it..) - which I know can be mysterious and confusing at first ;-)

Best wishes

'Uncle' MB :-)

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I am rather horrified if you are saying your PMR was diagnosed over the phone! You will have to phone up for a repeat prescription. Three weeks only at 15mg is quite short although that is what my rheumie recommended. Then down to 12.5mg. One group recommend staying on 10mg for a year. As PMR usually lasts at least two years I think you will need a few more drugs than you have now.

You should also be taking vitamin D and calcium prescribed by your doctor and they should organise a Dexascan scan for you to check your bone density. I had blood tests for inflammation every month to start with plus general blood tests such as glucose every so often too.

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Was any explanation given to you regarding the rather strange dosing/tapering schedule? It is more usual to be given 15 mg (sometimes a little more if necessary) for at least a week and if the treatment works to control the pain then you get prednisone on a regular basis, only after several weeks do you start a slow taper to carefully find the lowest possible dose which will manage your symptoms. The PMR journey will last at least two years and most people take longer before the disease goes into remission. Prednisone does NOT cure PMR; it reduces the inflammation and thus relieves pain and other symptoms.

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Read and trust the information offered here! I’m rather new at this and I’ve turned to them daily as I am finding my way with PMR. I’ve already experienced their greater knowledge in dealings with my GP and in how to approach and evaluate my first rheumatologist appointment. Good luck in coming days!

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How did you achieve this Vnett, my GP practise only allow the dr to ring you and if dr sees fit will ask to see you. He has not at this stage. I feel so down about it all.

Thanks for replying.

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I know you are having difficulties and I feel for you! I’m wondering if it’s a bit of luck after several years of extreme stress, as if I was owed a break! I am very fortunate to live near a very fine medical group wholly contained with hospital, offices and diagnostic services interconnected. All of my doctors have access to everything the other does and they have outstanding tech services. It helps so much to have that available. I wish it for everyone. I hope you get the help you need. Use this wonderful forum to assist you! They seem to have answers not always readily available to you from your own doctor.

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My friend basically rang her surgery and was told no spots And Dr would ring in the next week. She said in that case I require a home visit today. Immediate ring back by gp and appt that day. It wasn't PMR but she felt ill and is 82. Had bloods etc.

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WOW you have a clever Doctor, if he can say you have PMR from a phone call. I needed 2 blood tests and an X-Ray of my hands.

Getting the correct amount of pills can be a problem, I go to see the receptionist at my doctors, who put a prescription in the system which the doctor sign off when he can.

Good Luck we are here to help.

Frederick

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Hello Rosie

I'm not sure whether or not you are based in the UK - if you are, my advice would be to get in touch as a matter of urgency with your local PALS (Patient Advice and Liaison Service). Information about what they do and how to find them via nhs.uk/chq/Pages/1082.aspx?... - they can advocate on your behalf and support you. I'm still sitting here outraged that your GP won't see you. Absolutely unacceptable and, if it were me, I'd be looking for a new GP practice. But, I know it's hard to take on a battle when you're feeling low. (Another reason to get the PALS to help.) And I'd strongly urge you to read Kate Gilbert's book about PMR and GCA - link below. You need as much information as possible to help you through this and especially at this early stage. This forum will also help - a lot! Good Luck - let us know how things are going.

(https://www.amazon.co.uk/s/ref=nb_sb_ss_c_2_12?url=search-alias%3Dstripbooks&field-keywords=kate+gilbert+polymyalgia&sprefix=kate+gilbert%2Caps%2C283&crid=27U27ZDU9FIX1

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My mind boggles!diagnosed over the phone,what an amazing dr.I had to have blood tests,hip X-rays and anti inflammatory medicine before diagnosis!!

You will get helpful advice on this group from wise ones x

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Really unacceptable Rosie. New GP?

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Welcome to the forum Rosie!

Starting out, you should plan to supplement your diet with Calcium and Vitamin D. Request that your Rheumy order a DEXA scan to give you a base line for your bone density.

You should get an eye exam to give you a base line for glaucoma and cataracts.

You will also need to be concerned with what Prednisone will do to your blood sugars. Might be a good time to request an A1C blood test to determine whether you are becoming insulin resistant or pre-diabetic. If there are any blood glucose level concerns you will likely need to move to a low carb diet so that your glucose levels do not rise dangerously high from the influence of Prednisone.

You should also become educated about GCA so that you know the warning signs.

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You must stand up to your GP and say that IF his diagnosis of PMR is correct then he must also provide you with better management instructions. PMR is a chronic illness that lasts AT LEAST 2 years and you need pred to fit your symptoms. If he can't do it - then you need to be referred to a rheumatologist as an emergency.

If he doesn't know how to manage PMR then suggest he reads this:

rcpe.ac.uk/sites/default/fi...

which was written by a top rheumy to assist GPs.

I would also report your GP to the local commisioning group - only diagnosing over the phone will kill someone. It is totally unacceptable. Where are you?

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