Advice

[HighlandCat]

Hi, I was diagnosed with PMR in November and started on 15mg pred. I have gradually reduced to 10mg going up and down a couple of times when the pain came back. I am seeing my GP again next week but she is pushing for me to continue reducing 1mg every 10 days. I feel this is maybe a bit too fast. I was a few hours late taking my pred yesterday and my hip pain/stiffness was back almost immediately. Should I be staying on 10mg for a longer period of time before I start reducing again? Many thanks

[DorsetLady PMRGCAuk volunteer]

Hi HighlandCat,

Short answer - yes!

Your GP is pushing you too quickly, hence your increases previously.

Your initial dose gets the inflammation under control, which is the easy bit, then you have to reduce slowly to get to the level that keeps it under control. If you go too quickly, then your pains return, as you found out. Unfortunately many GPs don't have a lot of experience with PMR and think you can reduce without taking that into consideration.

PMR is not like most illnesses - take course of tablets for a few weeks and it's cleared. It comes out if the blue, hangs around for anything between 2-6 years, sometimes longer, and then goes into remission. There is no cure - but it can be controlled by Pred, but you need to take the right amount at any one time to do that. Go below, and the disease flares.

Every 10 days is too quick in my opinion, it hardly gives you enough time to ascertain whether each dose is enough, a flare can take that long to appear, a month is a much more sensible timeframe.

Plus once you get to single figures some people find that a 0.5mg reduction is easier. The recommendation is not to reduce more than 10% of your existing dose - at 10mg that 1mg, but anything lower than that the percentage is more than 10% - at 5mg is 0.5mg. Also a slower taper that's done over a number of weeks rather that dropping overnight (one day old dose, next day new)

Think it's a good idea to stay at 10mg for maybe a month, even longer if you wish. Plus you need to discuss with GP, I think her plan is much too ambitious. Have a good look at the PMRGCAuk web page, you should be able to find some more information on reduction plans that you may be able to show her. Sure others will be along with more info, and links for you.

Take care.

[markbenjamin57 in reply to DorsetLady]

Well said DorsetLady

[HighlandCat in reply to DorsetLady]

Many thanks for your post it is very helpful and I will go armed with the knfprmation to my Gp 😊

[Hidden]

As I said last week, they give you the prescription with one hand & are telling you to start reducing ASAP 🙄

Almost every Consultant says to stay on a dose for at least a month as DorsetLady says. I've had three Rheumatologist's, it's not me, one was Pregnant & the guy covering her was about to Retire but he always said it takes 10/11 days to know for sure if it's working or not, so if you reduced again at 10 days, you'd have no idea. That's why the Slow Taper works so much better.

GPs just don't get it, it was classed as a disease of 'Old Ladies' Two Years of Steroids & 'Cured' But we're not Old & we are not 'cured/better' in two years, if only! There are younger & younger people, guys too being diagnosed! It's not following the pattern GPs expect, so often we are the Trail Blazers as the GPS have no experience of it in younger people. I like to think I'm young, 61 💁🏻 And, if you mention Slow Taper they roll their eyes 🙄 in disbelief!

One day & l hope it's soon, it will be come Standard Practice to Slow Taper & then we can all say I told you so!

Don't laugh, but l only see my GP at 10.30 after he's had his coffee ☕️ so he isn't so cranky & l have a bodyguard when I'm really not well! 😂

Take Care

Mrs N

[EdithWales in reply to Hidden]

Old Ladies Disease, how very dare they! I am a spritely 76 year old with a lot going for me. That's not done my blood pressure any good. Sexist and racist, if my husband and any of his partners said that they would be subject to a complaint.

I was told my the Rheumatologist that "in two years you will be cured" which was the cruellest remark as nearly three years later I am still on 15 mgms having got down to 3 mgms towards the end of the second year. I now know because of this wonderful site it was firstly, totally optomistic and secondly, I had reduced too fast on the lower doses. I did mention tapering to her and she said that was what I was doing but I wasn't and I realise now she didn't know what I was talking about.

The shock and disappointment was awful and I went back to my old wild ways of eating everything that wasn't nailed down and drinking like a fish, subsequently putting on all the weight I had lost on my low carb diet.

I constantly go on about listening to our bodies, so many of us push ourselves beyond the limits leading very active lives then wonder why our bodies shout enough. Take it easy is the only way. Old ladies disease indeed!

[Hidden in reply to EdithWales]

Hello EdithWales

I'm sorry if that comment pushed your blood pressure up, the trouble is many doctors do 'pigeon hole' certain diseases & if you don't fit the criteria they don't always accept you have it. My GP has never really been convinced l have PMR despite three Consultant's saying I have, but what can you do! They all seem to think that in 2 years we'll all be over it, if only! I'm five n half years now, five on Prednisolone & currently on 6.5mg, l've been as low as 5mg but that was during Chemotherapy for Breast Cancer, l'm hoping l can get back to 5mg during the summer.

I'm keeping my carbs low & cutting down on sugar, hoping to lose a few pre holiday pounds, ever the optimist!

Very Best Wishes 🌺 and Apologies, once again 🌺

Mrs N 💅🏼

[EdithWales in reply to Hidden]

Don't apologise Mrs Nails, I was only joking but it is an example of the lack of medical knowledge. I had GCA with a CRP of 189 and my GP husband and his partner failed to diagnose it because it is pretty rare although PMR is very common. The whole Practice is now on alert and won't be missing it again. The stereotyping is a real issue, 73 year old women is the supposed norm and we all know from this site that's simply not true.

I think it's important to challenge and question as all of us are still learning and that includes medics. We are the experts in our disease so we can help them.

Have a good day.

[PMRpro Ambassador]

1mg every 10 days is far too fast - it isn't long enough to be sure the dose is still enough. 1mg per month is what is suggested even by the rheumatologists and after 10mg some people find even that too much.

You are NEVER aiming relentlessly for zero - you are looking for the lowest dose that manages the inflammation. Overshoot that and you will have a flare. need to go higher to manage it (which can sometimes be more difficult than originally) and reduce again.

There is a slow reduction approach here:

healthunlocked.com/pmrgcauk...

which has been used by many patients of all 3 forums and is also being used in Leeds for a clinical study on pred and PMR. The study leader, Prof Sarah Mackie, told me just before Christmas the feedback has been good, patients say it is better than any other reduction they have been told to try before. A lady on this forum has said today that she has never had a flare and is down to about 4mg. If you go to a new dose and pain comes back - you go back to the last dose that was good and wait a couple of months before trying again, It works!

It may be just the inflammatory effect for you had worn off within the 24 hours - but that a slightly lower dose will still work. The inflammatory effect lasts 12-36 hours - if you are a 12 hour person it may wear off even at a higher dose.

[HighlandCat in reply to PMRpro]

Thanks for all the information much appreciated 😊

[piglette]

I find it seems very easy for doctors to make some suggestion as to reduction. Their aim seems to be get us off pred as quickly as possible and they seem to just dream up some reduction system in their heads. I should say this is not true of all doctors, but a frightening number in my opinion. When I look at the different number of reductions that have been suggested by various doctors mentioned on this site, I really begin to wonder how much some of them know about PMR and steroids if it comes to that.

[markbenjamin57 in reply to piglette]

I think you've hit the nail on the head piglette..

[markbenjamin57]

Hello HighlandCat

Just a quick note to endorse all of the advice that DorsetLady, PMRpro and others give here. I know it's a dilemma for a newcomer to PMR whether to trust the expertise of your GP or relative 'strangers' on a forum like this - but I can vouch for all that they recommend about steroid (Pred) reductions in this context. Your gut instinct is correct as far as I can tell... and from a similar experience with my own GP.

MB

[SheffieldJane]

In short HighlandCat - yes. It's your body and it's telling you that you still have inflammation.😿

[HighlandCat in reply to SheffieldJane]

I think deep down I knew it was all too fast for me because of how rotten I was feeling generally but it is fabulous to get reassurance from fellow PMR endures. Thanks 😼

[Janll]

I feel quite angry as I'm reading all these positive posts. My Rheumatologist who says his thesis while studying his specialised area of medicine was PMR. I know our bodies can give weird signs ... either via blood test or actual pain. But shouldn't he KNOW more than me? As I look at my notes I decreased my dose of Pred. in October at his recommendation as my blood test showed they were NOT lowering my inflammation. In Oct. I was taking 12mg then by Jan I was down to 3.5. I was feeling awful by then so without being able to contact doctor or Rheumy I upped my dose to 9mg, this being the 10th day. I'm just looking over my dates and see how wrong I was to reduce so quickly. 10% reduction at the very least. But shouldn't he have said this to me??? I hope when I see him tomorrow morning I go informed and my anger has lessened. There is still the question of why my blood tests show an increase. I've been screened for other conditions and diseases and I'm ok. I'm venting....sorry! Just so tired of not knowing and feeling old and uncomfortable.

Janll

[PMRpro Ambassador in reply to Janll]

I bet he knows the theory - which bears VERY little resemblance to the practice! And who read and assessed his thesis? Others who have the same out-of-date attitudes to it. And who do not listen to their patients.

I'm just trying to get my head around the idea of reducing from 12 to 4mg between October and January - and I can't!

ESR and CRP can be raised for chest infections. And some people just have persistently raised markers. At least they have ruled out some potential nasties I hope - what screening have they done?

As a patient, I was recently approached by someone to read and assess a document they hope will encourage doctors to participate in shared decision making with their PMR patients. Perhaps I was a bit strong with my response - haven't heard back from him yet - but the document was written by US rheumatologists (ironically for use everywhere EXCEPT the US and Canada) and, while slightly better than the usual stuff, didn't emphasise taking notice of symptoms and the individual patient and all the other stuff we go on about here all the time.

Part of the problem remains there have been no studies looking at the best way to use pred in PMR and they try to use it the way they do with other illnesses - where it is a holding pattern until an infection or a flare is deal with with antibiotics or DMARDs. Pred IS our DMARD - but they don't get that or the chronic nature of the disease. That is being addressed though - a study in Leeds is looking using pred in PMR and tapering (using DSANS). But it is not big and there are problems with staff and slow recruitment of patients.

A study in Italy some years ago, admittedly not enormous but done under one of the top PMR experts in the world, assessed that 1/3 of patients still require pred after 6 years. The standard German rheumatology textbook says an average of 5 years. It says repeatedly in the medical literature that most patients develop PMR after 50 - BUT THERE ARE YOUNGER PATIENTS.

I've read/know all this - why haven't/don't they?

[Seabyrd]

1 mg every week can be too fast depending on your inflammation levels... we are all different and tapering turns out to be a very personal thing... for me if I am tapering and notice a big difference after a taper I go back up the next day then back down the next and continue that for a few days... by the time your body says "hey that's not enough" you go back up again and that will often trick your body into thinking all is well... I have done that successfully several times... it's more like a half mg taper and is better tolerated. For example I have just now managed to stay on 6mg without a problem but only after 2 weeks of 7mg one day and 6mg the next... this has worked for me several different times. I have PMR/GCA & RA I have tapered from 60mg to 6 very slowly over 18 months... I can't wait to get off this stuff but not at the risk of having to start over again... Try to keep it steady and good luck.

[kulina]

Sorry to hear that your doctor is rushing the reduction. The ladies here will give you excellent advice and I could not have survived my PMR without their wisdom. My doctors, which I love, will keep me on a new reduced dose for at least 4 weeks to see what the effect is before lowering it even more. Good luck, hope you stay pain-free.

[Janll]

I will go armed with my own agenda tomorrow morning. Thanks to this forum I have learned a lot and I am more confident. I will report back with my blood levels and what tests they have done to discount which diseases. Thank you all.

Janll

[piglette in reply to Janll]

Good luck Jan and stick to your guns.

[Janll]

Disappointing appointment. 😩 I like my Rheumy but he said he is super busy and has to go to a meeting a half hours drive away and he is stressed. So, not as relaxed a meeting as I had hoped. He did say my crp was good but my hemeoglobin was getting progressively low and he wanted me to be referred to a specialist. He is more than happy that I play around with my pred dosage as I feel comfortable with. So PMR and blood playing up too. Sure explains why I feel like I've got weights in my shoes. Out of breath.

Anyone else have blood problems as well as PMR?

[PMRpro Ambassador in reply to Janll]

I'd try a new thread with the question Jan - then everyone will see it, only people following this thread will see this.

Anaemia is a common symptom of autoimmune disorders - my haemoglobin has fallen in the last few years but only minimally from a very high level to start with so is still well in range. I think mine was so high because I spent a lot of time in the winter above 2000m which encourages an increase in Hb - not been skiing for 4 seasons now so at a lower altitude all the time.

[Janll in reply to PMRpro]

Thanks PMRpro. I'm still kinda New and don't want to miss seeing the thread. Clue to find it?

[PMRpro Ambassador in reply to Janll]

I meant YOU should start a new thread with your question, one of your own rather than asking the question in the middle of another thread where people may not see it.

If you aren't sure how to - scroll to the top of this page and at the top right corner you will see a green box with "write a post". Click on that and the field comes up to write your own post rather than a replay. You just need a title and you are good to go!