Hi have recently been diagnosed with pmr after constantly being fobbed off by gp with pain killers like Gabapentin, amitryptaline, no investigations just pills, so i decided to see a Rheumatologist privately to find out exactly what is wrong with me, although i have some osteo arthritis, i could no longer stand the pain in shoulders, neck upper back arms and hips, i hade MRI on spine , blood tests and thorough examination, my blood tests shown my CRP to be 58 i was put on 15mg prednisilone for one month then it will taper to 12.5 mg then 10mg and be reduced by 1mg each month, i am pleased to say within a few days the pmr pain was so much better although my arthritis pain in other places still remains but i can cope with that, it was the first time i have been pain free in neck upper arms and shoulders and hips, however i dont feel well in myself, tired and not sleeping and feel rather anxious in the mornings, i just wondered if anyone else has exp this, i was also given Alendronic acid to be taken weekly and cali D chewable tablet daily whilst on the steroids, this seems a horrible journey we are all going through and i am finding it all quite scarey and daunting
Recently Diagnosed PMR: Hi have recently been... - PMRGCAuk
Recently Diagnosed PMR
Welcome to the forum. You have come to the right place for advice and support. There is a wealth of information in FAQs (see ‘Related Posts’) which you will find helpful: healthunlocked.com/pmrgcauk...
It may well be overwhelming at first but take your time and please ask any questions for clarity.
It is not unusual to feel anxious at the beginning of what we call the ‘PMR journey’-after all, very few of us had even heard of PMR before diagnosis. It is a good idea to keep a diary with dates and medication doses, symptoms and appointments, etc.
If you haven’t yet become a member of PMR/GCA and wish to do so, please read this:pmrgca.org.uk/how-to-help/b....
Welcome to the group. Your story mirrored what I experienced last year but glad you are on board now and hopefully for an eventual recovery.
I found this link very helpful and sent it to my family members so they understand what PMR is , and not believe the hundreds of myths.
topdoctors.co.uk/doctor/rod...
There are two things which did not resonate in Dr Hughes' talks - one that people under 50 dont suffer. We have several members who are younger than that and the other point is he states that tapering at the rate of 1 mg each step is fine. The general advice from our experts is 0.5 mg and even 0.25 mg is safer as we get to under 10 mg I think.
Having watched his talks, I dont think I will spend out on a private consultation with him. My GP refused to refer me to a specialist from the outset and I can understand why a little more.
Thank you again Dorset Lady and our Ambassador. You always give fast succinct advice and key into any problem that is flagged up. Even my young GP who is about 4 years as one, was impressed with the advice you gave me. She read it in front of me and within the 10 min. appt. slot!
Hi and welcome,
123-go has given you links to look at , but maybe start with this to give you an overall view of what to expect - and maybe hold off on the AA until you know you really need it - have you been offered a DEXA scan - or do you know if you have osteoporosis?
Also do ask any specific questions when you’ve had a browse through things - always someone about to answer.
healthunlocked.com/pmrgcauk...
Thank you
I’m glad you got there in the end! Welcome.
Do read the links you will be given. The main thing to know is that the Pred is supportive only, it doesn’t cure the autoimmune activity bubbling away, hence feeling tired. Instead it deals with the resulting inflammation and if your dose is high enough and provided you don’t over do it, you’ll feel comfortable. The common mistake is to assume that no pain means back to normal when actually you need lots of tlc and rest. The Pred can make you think you have extra energy or make you feel wiped out or both. Take each day as it comes and it does get better.
My worry is that your GP is sending you off on a too optimistic reduction plan which would have you off in just over year, even though the usual misconception amongst doctors is 2 years. This condition fizzles out when it is ready, not when the GP decides and that can be 5 years, sometimes less, sometimes more. You reduce the Pred slowly to find the lowest dose that deals with the inflammation your disease is causing and that is individual. It isn’t like a course that you reduce to zero and it’s all done. Your starting dose is at the bottom of the usual range for PMR so keep an eye on symptoms. Anyway, you’ll get lots of information soon. It’s feels like you’re having to study for an exam just when you are reeling with all the changes, but it’s worth the effort. Lastly, start a low carbohydrate diet as it will really help the weight gain and diabetes risk, which many docs think is inevitable. Plenty of people here beg to differ!
Thank you
As a long term diabetic type 2, I can state that a low carb diet, started 2 weeks ago has certainly and significantly help contro my blood sugar.
Wonderful and so sensible as ever.
I have a couple of questions please, Some people said they thought my tapering plan was too fast, i have been on 15mg for one month come next week, then due to reduce to 12.5 for two weeks then down to 10 for 1 month then by 1mg per month, do you think i should be taking it slower? secondly, i dont understand what prednisilone does to your adrenal gland but sometimes i feel fine, then get a worried anxious feeling just like you get when you are nervous about something, is this normal? im sorry to ask but it would help if someone could explain this to me, many thanks
Your plan as it stands has you off Pred in a year (assuming the 12.5mg is for one month) and it is rare that people’s autoimmune activity is done by then. Although most recommended plans, that do differ by the way, suggest a drop of 2.5mg in one go from 15mg, it is often too big a drop, especially if you’ve been on the 15mg for only a month. By too big I mean people can feel unwell because of the withdrawal symptoms or the dose has dropped lower than is needed. Sometimes it is difficult to tell which. The idea is to find the lowest dose that manages your symptoms and at a month in, you are likely to be still going strong with inflammation. So, if you drop 2.5mg and have a flare, you don’t know where in between 15 and 12.5mg was your sweet spot. You may then be faced with going back to 15 when you could have stuck at 13 say. Another reason is that it can sometimes it takes a couple of weeks for the too low dose to show itself. So if you are tanking down the dose ladder and you flare you have not the foggiest where the dose started to become not enough because of the lag. A rule of thumb used here is drop no more than 10% of the last dose.
I ask PMRpro or DorsetLady or anyone else to post some guidelines. I’ve got gremlins and can’t open my stock.
The adrenal glands - Pred is a more potent artificial version of your own cortisol. Your adrenal glands make your cortisol and it relies on the feedback that your body is low in order for them to work. This is usually about midnight and that triggers a fresh output for the morning. If your body is swamped by a high dose of the artificial ‘cortisol’ your own production stops because it doesn’t need to work; there’s a whopping great surplus. Your adrenal glands lie dormant and this will kick in about 3 weeks after you start your Pred. When the Pred gets to about 8mg or below (it varies a bit) your body needs to make up the shortfall. Unfortunately this doesn’t always happen seamlessly and can take months, or in my case a couple of years, to come back on line. If you are one of the many for whom this is the case, 1mg per month from 10mg may well make you suffer from secondary adrenal insufficiency and what is often described here as “deathly fatigue”. If you go to the FAQ’s and look up adrenal glands, you’ll get a full explanation.
This
rcpe.ac.uk/sites/default/fi...
is a good typical reduction schedule. The author is now Prof Vanessa Quick at Luton and Dunstable hospital and she still uses it - because it works!
Many of the schedules you find from NICE or BSR for example speed through the starting weeks and that is when the disease activity is likely to be at its greatest. It is as much the only 2 weeks at 12.5mg that is optimistic - which is the word I used. It can take 2 weeks to be sure the new dose is still enough. There will be people who manage it, others won't, This is a point where we think it is important to be stable, not ending up flaring, having to go back to the start and getting into a yoyo pattern with the dose as each time you have to go back up, the harder it may be to go down again. Some doctors would complain it is slow - we say it isn't slow when it works!
1mg per month below 10mg is a standard instruction - but for some it is too fast so you need to be watchful. A basic rule is not more than 10% of the current dose - so at the start the 2.5mg step is more than 10% to start with.
You aren't heading relentlessly to zero come what may. You are looking for the lowest effective dose - the lowest dose that works as well as the starting dose did, Eventually you will almost certainly get to zero but it is very unlikely to be in a year, it may not even be in 2 years and a common time is 4 to 5 years. And allowing the inflammation to flare often just adds to the time so it is important to avoid it.
See this re adrenals-
healthunlocked.com/pmrgcauk...
Tapering, as I explained before I think- 15-12.5-10mg may be in guidelines, but doesn’t mean everyone can manage it. .. and I certainly don’t think 2 weeks at 12.5mg is enough… but you won’t know until you try.
Hi and welcome!
Is your tapering plan from the private specialist or your GP? Either way, it is optimistic, even if it is what NICE and co quote as suitable. Some people do manage the reduction to 10mg but far more struggle. If you do - go back to the previous dose, settle again and reduce by 1mg at a time sooner. You aren't heading relentlessly to zero, you are looking for the lowest effective dose - the lowest that works as well as the starting dose is doing. In the early days it will be higher than it will be later and especially if the diagnosis has been delayed as your obviously has been - the inflammation builds up and takes a bit of time to be all cleared out. Then, if it takes a while to get to 10mg, 1mg a month may be a bit fast as well - PMR and your body are not machines, some are slower at sorting themselves out than others.
If you are unsure or worried after reading the links you have been given - ask, someone will help.
The pred deals with the inflammation - but has no effect on the underlying autoimmune cause of the inflammation. It chugs away in the background and makes you feel as if you have flu. Fatigue is common and however you feel on pred - DON'T believe its tempting feeling you can conquer the world - you have a serious systemic illness and your body needs some TLC. Pacing is the most important thing you can do for it and don't overdo things. Try to avoid stress - PMR really doesn't like stress - whether it is good or bad stress!
This post is included in DorsetLady's welcome post but it is well worth reading again and again - at any stage of PMR!
healthunlocked.com/pmrgcauk......
Thank you
Yes, the Rheumatologist told me how to taper but i will be seeing him again in a couple of weeks to see how i am getting on, when you mention stress are you referring to mental stress? as i have been under a considerable amount of stress by a problematic neighbour who recently moved in, causing boundry problems etc which i feel i do not need at the moment
Any stress-mental and physical …. As I mention in my intro post.
ANY stress, physical, mental, emotional. We had a similar neighbour once - and a wonderful solicitor. We let him deal with the silliness and built a 2m closeboarded fence and ignored him.
Oh we have one of those. Nothing resolved but he’s fizzled out for a bit. We have two lots of new neighbours on the other side and because there’s no defined boundary owner, we have to deal with the latest rash of people thinking it must be ours. He we go again. Boundary law is a bit of a mess and our issues liable to chunter on and once where we used to be super stressed by it, we now just roll our eyes and deal with each chapter when it inevitably comes. It can feel like the last straw if one is not feeling great already.
My GP kept saying I had a virus and after three months I went to see a rheumatologist privately who diagnosed PMR in under 30 seconds. We have recently set up a gardening group you might like to drop in on at facebook.com/groups/6288051... which I find cheers me up with the bright photos.
Welcome. You have my sympathies. I was 'fobbed off' for 9 months and thought that I was going to end up in a wheelchair and almost housebound because of the increasing pain and stiffness in my legs and hips. And I was only 59! Then a new GP at my practice prescribed 15mg of pred and within a few hours, I was almost free of the symptoms.
It took my nearly 3 years to reduce to zero. Very slowly using a 4 week tapering plan and waiting for a few weeks before starting to taper again. Don't rush it; if you try to race to zero, the PMR will overtake you and win and then you have to go back and start again.
Good luck.
Docs sure seem to love handing out Gabapentin like candy nowadays..it's for nerve pain anyway..not muscle pain. My pain Dr did the same and I kept telling them it's NOT nerve pain (I had that before my spinal fusion from bone spurs compressing nerves coming down the neck into the arm) it's a VERY different pain than PMR. I made sure to tell them they were wrong once I got the PMR diagnosis and felt 90% better on Pred. 
Your taper plan sounds way too fast from what I read on here, maybe you'll get lucky, who knows? But at least now you won't get too upset if you find you need to slow that down or stay on a higher dose longer after reading round on this great site.
Welcome to the forum, lots of great people here..I am fairly new, also.
Trouble sleeping is common at the higher doses of prednisone. You should find that improves as you drop your dose. Take life slower and add in naps if you can. As others have advised, you may need to taper slower than suggested if your symptoms return. Especially once you hit 10mg. It’s not uncommon to need to drop by 1/2mg and to take several months at each dose.
Welcome! I’m glad you’ve found us as we “get it” better than others with no lived experience of PMR/GCA. I found this forum so helpful in the early days when I was recently diagnosed and filled with a range of emotions and questions while it all sank in. I had so many questions answered and learned so much about my condition from these fine folks.
I too was sleepless and didn’t feel myself on higher doses of pred however this lessened as my daily dose did. I’ve learned how to cope and made adjustments in lifestyle to accommodate for having an autoimmune disease, but find things to be much better as I’m able to best manage my PMR. Pred helped me return to a “new normal” after 6 months of worsening pain and stiffness however tapering at times presented the biggest challenge.
As others have mentioned stress (even good stress like getting married and retiring in my case) can cause a flare. Pacing your activity and patience are key. You’ll hopefully get to a place of acceptance and with it will come some peace.
Till then feel free to post anytime. You are not alone.
Hi.I have just been diagnosed with PMR...
I feel like you....so I unsure of everything...
I haven't seen a Dr yet as mine was found with blood test so only had phone consultation.....
But I was in agony I couldn't even get out of bed without help.... certainly couldn't dress myself...
I'm down to 15mg prednisolone but still in discomfort...
I think like you I feel sad, lethargic and worried.... hope the Dr will be a help.
It would help if you’d added this in your recent post… not everyone will read this . What dose did you start on- and for how long? And if you are in discomfort then 15mg is obviously not enough.
That isn't really acceptable - the blood tests only show there is inflammation in the body - not what exactly is causing it. There is no specific test for PMR. There must be AT LEAST a physical examination which can't be done on the phone even if a clinical history can be. There is a range of other things that can mimic PMR and which should be ruled out. If you are in discomfort now it suggests 15mg is not enough - but without knowing more, there isn't much else I could say.
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