Time needed to taper off pred...

[Squig]

Hi - there seems to be lots of real knowledge on here so Im hoping someone can help me. I was diagnosed PMR about 4 weeks ago and started on 15mg Pred 21 days ago . After initial help the pains came back but doc wont up the dosage until I see consultant and no idea when that will be so...given whats happening etc I want to stop pred and see if I can get by without. I've been taking for 21 days - can I just stop or do I need to taper?

Seeing doc tomorrow but think folks here know more than him.......

[Hidden]

Hi squig, 15mg is the minimum dose for PMR recommended by guidelines. The range is 15 to 25mg and many people need the higher doses to get sustained relief so your Dr can put you higher to see your response. In terms of reducing after 3weeks then you can reduce quite quickly. However, if you are going to come off pred you must speak to your Dr. It's not just a case of reducing by 5mg a week or so over 3 or 4 weeks (example only). Pmr is a serious systemic condition and while you are waiting up to months, especially at the moment, to see a rheumy, the vasculitis can cause damage to various parts of your vascular system. The inflammation can be causing damage. Untreated PMR is up to 20 percent more likely to develop 'into'giant cell arteritis.. GCA. This can and does cause irreversible blindness in one or both eyes as well as damage to your ears and other branches of your large vessels. So please speak to your Dr about your plans before you decide to stop the pred. 🌻

[Squig in reply to Hidden]

Thanks Both! Think I need to know more about this illness - can you point me to a link - the NHS site etc really gives very little information....only symptoms not actually underlying illness and how it damages your system.

[Hidden in reply to Squig]

We usually ask people to start with this introduction which is like a starter kit. Dorset lady kindly put it together and updates it regularly. You can use the search function to bring up topics you might want to read more about. Once you have read the linked post then you can ask some more specific questions. A lot if us have had one or GCA for a while and others are newly diagnosed, or awaiting a firm diagnosis so all questions are relevant. Re exercise...we suggest you keep active but don't start damaging yourself. Some people ignore that and do seem to manage okay...for a while. But PMR will bite you if you don't respect it. I don't know what your level of exercise is but lots have experience of different levels.

healthunlocked.com/pmrgcauk...

[Hidden in reply to Hidden]

P.s. there's obviously a lot if material re covid at the moment. Usually it's more PMR GCA directly based...if you go back about a month and read some posts it largely predates the current crisis talk.

[Squig in reply to Hidden]

Really helpful.Thank you. have got info pack and have started reading around.

[Daffodilia in reply to Squig]

This forum is excellent and website and Kate Gilbert’s book - good luck

[Pippah45 in reply to Squig]

I found Kate's book on Surviving PMR/GCA very useful

[Pippah45 in reply to Pippah45]

Sorry - that should read Kate Gilbert's book Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide. 2nd edition.

[diana1998 in reply to Pippah45]

So did I when first diagnosed.

[desertloft in reply to Hidden]

I am pretty certain that you do not want to stop taking prednisone. 15 mg's is a fairly low dosage. You will always need to taper on prednisone if taken for more than a couple of weeks. Doctors are not so helpful normally as they know so little about these diseases, but you definitely do not want to get GCA, which means a much largest dose of Prednisone. I have it and take 30 mg's daily. Best to you.

[Squig in reply to desertloft]

Thanks for this. Yes I have learnt that jumping off the pred would not be a great idea ! I probably need a higher dose but other conditions need ruling out first. As some of them sound even worse I’m beginning to warm to tbe PMR diagnosis!

[Hidden in reply to Squig]

Yes. I can see where you are coming from...in the meantime to control some potentially common side effects. ...try low carb diet. It can stop blood sugar spikes being quite so intense and stop weight gain if that's an issue.

dietdoctor.com/low-carb

[PMRpro Ambassador]

Did you try to go back to normal activity levels once you felt better? You can't do that without payback as the actual disease process isn't affected by the pred - it chugs along in the background and leaves your muscles intolerant of acute exercise. Do too much and you will develop DOMS, delayed onset muscle soreness which takes longer to resolve.

You are welcome to try without and you could taper off by reducing to 10 for a week, 5mg for a week and stop. But do bear in mind that the inflammation that causes the symptoms is also doing damage to your body and that PMR pain and disability will build up steadily without pred as the inflammation builds up. I had 5 years before I ever got to try pred. It was no fun.

[Squig in reply to PMRpro]

Thanks so much - I need to know more - the PMR causes inflammation which causes pain...the pred attacks the inflammation but doesn't attack the PMR - that relies on the body's own immune system. Is that right? And you can damage your muscles if useing them whilst sore? I thought keeping mobile was very important?

[PMRpro Ambassador in reply to Squig]

PMR is the name we give to a set of symptoms - which are due to inflammation caused by an underlying autoimmune disorder. You don't really damage the muscles unless you do an awful lot but it is like training in many ways - which depends on breaking links between muscle fibes and them healing again and being stronger when they are healed. The muscles don't heal as quickly. Keeping mobile is important but you have to take it easy at the start and build up slowly - it is a whole new way of life, a new normal.

[Squig in reply to PMRpro]

Im beginning to see that I have not come to terms with this at all. I'm going to slow down , take my time....see what the tests show , learn about it..... many thanks for the help. I will be back!

[sondya in reply to PMRpro]

Thanks for this, PMRpro. I have a friend recently diagnosed PMR. Was put on 40mg dose after the lesser 20mg wasn't effective. All pain disappeared (ofcourse). She was thrilled and immediately continued her walks and runs (and felt sore after). She's booking a holiday in Norway or somewhere 'up north' to go kayaking or skiing - if coronavirus border restrictions allow.

I needed your advice.

[PMRpro Ambassador in reply to sondya]

Aye, well, don't somehow think she'll be doing either of those any time soon! Anyone who wants to go skiing in the current situation wants their head read (as my mother would have said). Much of the problem in northern Italy was in the ski resorts and then tourists took it home with them all over Europe. Austria now has a similar problem in the St Anton area and Ischgl - people carrying it and all cooped up in ski lifts. And they are criticising Italy for not closing down sooner - but nowhere else did either, Not even sure they are all closed yet. But the borders are so it will only be locals.

A tourist worker in the Aosta valley ski area has passed it on to the surgeon, anaesthetist and nurse who attended him for a planned nose op - he didn't bother to tell them he had a cough and fever and had been in contact with cases in the resort. That is what causes the spread - total stupidity!

[Constance13 in reply to PMRpro]

Practically nothing was learned from the Chinese - the whole thing could have been rolled out earlier if it had. But who believed a small province in China would be a threat to the world!!

[Hidden in reply to Constance13]

The rest of the world has become it own threat now hasn't it....oh if they had learned. 😬🤐🤫

[desertloft in reply to PMRpro]

Very selfish tourist, which is beyond belief...or not .

[lalabirdy]

Hello, I started on 25mg prednisolone when I was diagnosed in October 2019.

I am 56 years old. GP has been slowly tapering the dosage. It is down to 6mg but I’m experiencing greater stiffness since 8mg but not the horrible pain I had before the diagnosis that kept me awake through the night.

My goal is to also not be on the medication because of the weight gain and other side effects however not being in pain is my main priority.

Wishing you well 🌈❣️

[PMRpro Ambassador in reply to lalabirdy]

You are not tapering relentlessly to zero - you are looking for the lowest dose that works as well as the starting dose and that, for you, for the moment, is probably 8mg. Go below that and the inflammation will build up again and you will end up back where you started, needing MORE pred.

If you are concerned about weight gain - reduce carbs a lot, especially processed ones and added sugar of all sorts. It does work and there are many posts on the forum about low carb eating. I lost 35 lbs while still on 10-15mg pred and maintained that for over 4 years until recently - other problems have intervened!

[Squig in reply to lalabirdy]

Thank you for this response. Everyones experience is good to know about. I suspect I too will be on a higher dose of pred once GP and Rheumy have finished testing to rule out other possibilities.

[Maisiek]

Hi, I’ve found this forum invaluable, especially when it comes to tapering and splitting your dose . There is an excellent book by Kate Gilbert : Polymyalgia Rheumatica and Giant Cell Arteritis : a survival guide , with everything you want to know: available from Amazon. Good Luck!

[desertloft in reply to Maisiek]

Thanks so much for the information on the book. I'm ordering it today. Be well ~

[Hannah183]

Diagnosed 2 months ago. Started on 40mg a day. Cleared all symptoms immediately. Now slowly tapering down. One every two weeks. Think some not started high enough

[PMRpro Ambassador in reply to Hannah183]

Possibly not - but if you need as much as 40mg, which is a GCA level dose, then questions need asking.

[Squig in reply to Hannah183]

than you Hannah - this is also what I am thinking . Its a tricky balance - high enough but not too high.....less pain would be good right now.

[jinasc]

Squig

looked at your profile and zilch. Can you take a look at others profile and fill in some gaps ie which M/F, age, country, Date diagnosed etc it all helps if to make answers clearer.

You need to read the PMR Guidelines on Diagnosis and Treatment, quick way to get a handle on it.

cks.nice.org.uk/polymyalgia... - it is a good idea to print them off if you can and refer to them , knowledge is power.

I have sent you a PM.

[Squig in reply to jinasc]

Thank you jinasc . I will do that. The threads and responses on here are really helpful and supporting.