Hello! I am a 67 year old woman, still working as a freelancer – although increasingly reduced work load, a very sedentary job. I had a medical referral to the gym and for past year was going 3 times a week (normally!) to strengthen my muscles for my arthritic knees (which were much improved).
Back in September this year I started to have absolutely dreadful pains in my neck and shoulders, making it desperately difficult to get out of bed, raise my arms up and hold my head up to watch TV. The pains lasted all day, usual OTC painkillers (Ibuprofen, paracetamol) did nothing – apart from make me constipated, so I didn’t take them. Also dreadful pain in my coccyx sitting down and getting up again – I am well padded down there, but all I could feel was bone! At night I had to lie flat on my back in bed and my knees would hurt (obviously I had stopped going to the gym) and often my elbows and ankles as well, plus leg cramps. Pain getting into bed so severe I would break out into a sweat.
GP referred me for I think 4 blood tests over as many weeks – each time increasingly raised CRP and ESR levels. She thought it might be RA and made an “urgent” referral to a rheumatologist (apptmt for early Dec – so depressing as seemed so far away, and meanwhile no respite from the pain).
After the 4th test, I saw another doctor who took it on board. Referred me for chest x ray, and stool, urine and blood test to check my ovaries (all were clear) for poss cause of underlying inflammation. Meanwhile, she diagnosed PMR and started me on 15 mg of Prednisolone and a daily Lansoprazole. After the first day, I felt a tremendous reduction in the pain, and after a week, a follow up blood test showed reduced CRP and ESR levels (2 and 8 respectively – previous CRP had been 50). Doctor renewed my Pred prescription and added chewable Calcium and Vit D (and Alendronic Acid - about which later!)
This Tuesday I am seeing the Doc again – 4 weeks on from initial diagnosis and Pred. And I should like to ask you wonderful contributors for some suggestions as no doubt the conversation will be about reducing the Pred. (I am so happy that I found this site as it has provided me with so much info and so many links to different resources that I have been avidly studying to try and find out about this condition which I knew nothing about!)
But at this stage I must make a confession….!! Actually 2!! Firstly I interpreted the instruction of “3 tablets a day” to mean at staged intervals throughout t the day (which I did for the first 10 days) – rather than “all together in the morning”!! (these pages helped me realise the error of my ways!)
But the 2nd is worse…. I am also on 5mg Amlidopine for high BP and 20mg Atorvastatin for cholesterol. And somehow I managed to replace a blister pack of Amlidopine tabs with one of Pred – which meant I was taking my 3 tabs (in stages throughout the day!) plus an extra one in the morning (thinking it was the Amlidopine). Thus for 1 week I was taking 20 mg Pred a day…. No wonder I felt a vast improvement in my pain symptoms!
When I realised my error, I decreased my daily dose (now being taken in the morning 30+ mins after the Lansoprazole and breakfast and taken with yoghourt and lots of water) to 17.5 mg over the next 3 days, and then dropped back to the prescribed 15 mg (which was 2 weeks ago now). I did notice that some pain seemed to return to my neck and shoulders on the reduced dose (but nothing like it had been originally and sometimes more just at the front of my neck), but that has steadily improved – although still there sometimes. I have started to return to the gym (well on dry days anyway!) and do gentle exercises (I never did do weights or high impact and so on), especially cycling and (gentle!) rowing for my knees, which has been good with no subsequent pain.
I am slightly concerned that maybe at this stage (4 weeks) I should be “totally pain free” before beginning to reduce my Pred dose? What is recommended? And what sort of tapering should I be doing at this stage? Is it down to 12.5 mg for a while and then down to 10 mg?
I also have another matter to bring up with the Doc – after reading about the side effects of AA (Alendronic Acid) on these pages – I decided to just add the chewable calcium tabs first and see how I went, and maybe start on it the following week. But after screwing up my doses, I thought best to sort that out first. Should I suggest maybe I wait the next 2 weeks to see the Rheumo first and ask them about it – or for a DEXA scan first? But I am of the age (plus I used to be a heavy smoker most of my life until 5 years ago) where maybe AA is advisable? Maybe I should just start it and see how I get on…?
Again, any thoughts would be much appreciated!
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kalimche
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Many people respond better to 20mg initially rather than 15mg. You sound like one of them! The guidelines state anywhere between 25 and 25mg....whatever works. My gut feeling bearing in mind you did not feel so good on 15mg is to do 20 mg for 4-6 weeks to really get a hold on the inflammation. And then start reducing...never more than 10% at a time. Pace yourself. You have a serious illness. Normal life is not really a possibility. Google spoons theory and follow those guidelines. I wish you the very best of luck
Thank you Mary for your reply. Thank you for the reminders - I think like many "newbies" we think we can "cure" quickly...! So you think I should be back to absolute pain free old normal before I think of reducing?
Hello Kalimche - Initially 15mg was not enough pred for me and GP increased dose to 25mg in March 2018. Worked a treat. Presently on 6mg. All the best 🌻
Wow Meggsy - that is some reduction - well done! I have been writing a "nice" copy of my daily log and I must say that although there was an instant improvement in the pain after day 1, the pain in my neck and shoulders continued (and still persists today) although to a far lesser degree than at the start - it is no longer so debilitating - more a niggle+. But I have realised that the only time I have been entirely pain free was when I was (by error!) taking 20 mg.... At the very least I think I need to argue that I should continue at the 15 mg for a further 2 weeks - making a total of 4 weeks at the "proper dose taken at the proper time" as Blearyeyed suggested. We shall see what happens tomorrow....!
Yes, don’t let them rush you to go down too soon. It’s not worth it in the long run. I tapered in 2.5 mg lots every four weeks from 25 to 15. Then 1mg a month to 10 and then changed to .5mg a month. Now at 6mg and will do the DSNS method from now on. I had a couple of glitches at 10 and made it to 9.5 on the third attempt. 🌻
The shoulder pain could well be tight muscles - and a bit of TLC aimed at it might help. I love deep massage and can tolerate it even with PMR but not everyone can.
could be. I have never had - nor fancied any type of massage (except once on my knee). I don't think I would be a very good candidate - not so good at "om" type relaxing - well again never tried it cos I don't fancy it.... I think I am too much of a "twitcher"!
Just been to the physio - 2nd lot of massage and now I know exactly which of my back muscles are currently not happy!! The lovely Astrid will sor them out!
I don’t agree on this ”normal life is not really a possibility”. I must say I live a perfectly normal life since dec -17 when I started my Pred treatment. So that can stift from one person to another.
I have just had a look at your profile. Perhaps not making some adjustments, however minor, has lead to the many ups and downs and breakthrough pains you have complained of in your posts. As we travel with pmr we can go through different versions of normal.
Yes it is different for everybody , depending on the severity of the original symptoms and if you have other illnesses that cause additional difficulties and add to the Pain.
I always like to think of Life with a Chronic Condition as Living the " New Normal" , as even the people who can get back to most , or all , of their activities after starting Pred still needed to make some adjustments in Pacing themselves through the Day to cope with Everyday Life without poking the PMR Bear.
Hi, My feeling is do not start the alendronic acid until you have had a dexascan . Also you should go to the dentists before you start AA as dentists do not like to treat you if you are on AA.
Also do you know you should not take the d3/calcium at the same time as you take your Pred as it has an effect on the absorption of the prednisolone. I do not feel you want to rush into tapering as you need what you need.
There are many on here who know a lot more than me and I am sure they will be on soon, but they are all a great help.
Thank u for your reply. Re calcium - I have learnt the mantra "Pred for breakfast, calcium for lunch", x
So no worries there! But I do have a history of gum disease + receding - one of reasons (I forgot to mention!) why I was hesitant to start the Aa. Am seeing my dental hygienist next week so shall ask her/dentists about it then.
If you have gum issues and are unsure about AA , don't feel pressured to go it without the Facts.
Ask the GP to give you a Dexascan to check your Bone Health before agreeing to start it. Explain that you have read up on the Potential Bone Issues with Steroids but that with your Medical and oral History you would prefer to know that you need AA rather than taking it " just in case".
If you Dexascan is Normal you can choose not to use AA and just use Calcium , Vit D and good nutrition and exercise to maintain yourself instead.
If you only began the PPI with Pred and had no other health issues causing you to need it you can try and see if you can use the Yoghurt Method to take meds without it.
You already use yoghurt so you can wean yourself off , if you didn't I recommend eating the yoghurt and taking PPI for two weeks before you stop taking it.
You will have a little acid reflux for a few days and possibly a bit of stomach pain as you will have some withdrawal effects , I did . This should settle , and peppermint or ginger tea can help with indigestion symptoms around meals during and after this withdrawal.
If the Stomach symptoms continue past a week or get worse you can always go back on the PPI , knowing you need it and yoghurt or food as well .
Ask for enteric coated Steroids instead . You have a right to them if other Patients in your Country get them. It's just that it's cheaper for the surgery to give you non coated and a PPI .
It is also worth being 100% honest about your original mistakes with your medications and the Pain you felt as you reduced before.
It is understandable , even the best of us make medication mistakes , especially when we are just getting used to a new diagnosis or have Fatigue.
You could politely request that you remain on your current dose for another fortnight before beginning tapering , so that you have had a full month on the proper dose at the proper time , to start from a place that is stable and you are confident with will bring you better Tapering Success. A good Doctor will understand you are being sensible and proactive in your recovery.
You can also print off the DSNS Taper Plan info from the forum and tell them that that is the form of taper you are choosing to do , based on advice from the Charity and other sufferers of PMR/ GCA as this appears to be a more successful thing to do and reduce your time on Steroids in the long term by not tapering too quickly and causing Flares and repeated increases of dose.
Put them politely in their place in your Health Partnership from the Off and going to appointments is less Stressful or Daunting in the future.
No one should take a bone medication unless they really really need it. And far fewer people need one than the doctors will admit. If your DXA scan shows some bone thinning please get back to us before agreeing to take any medication because there are a lot of things you can do to improve bone density which have no side effects - except generally better health!
You may not need the PPI to protect your stomach. Most of us, though admittedly not all, manage very well with simply taking our pills in the middle of breakfast or even with just a small helping of yoghurt. If you do think you'd like to manage without the PPI do decrease the dose carefully over a few days to avoid rebound stomach acid production. The issue with PPIs is longterm use of them is worse than prednisone for leading to bone thinning and ultimately osteoporosis.
You should be taking calcium anyway, but as Koalajane said - not at the same time as pred. Pred for breakfast, calcium at lunch and supper or bedtime (a bedtime dose with a small snack has cured my lifelong intermittent insomnia). Also a calcium dose should be no more than 500 mg at a time as that is the maximum the body can absorb at one time.
As for the PMR which has started all this, sounds like your accidental higher dose was a good thing in the long run But heed the words of Mary, never taper by more than 10% at a time. You are in this for the long haul and going very slowly will result in a lower lifetime intake of pred because you'll avoid flares and steroid withdrawal symptoms.
Thank you Heron. I hear what you are saying about a scan and taking AA - and shall bear in mind... and meanwhile will tell Doctor I want to hold off... Also the PPI - I was prescribed that at the outset and so started to take it - but then I read here about poss side effects... so think I will also start to come off that (but might leave that argument for a later occasion...!). For the moment I have not suffered any diarrhoea or anything - but my system is not working as "normal" or "regular" as it used to .... but that could be down to Pred or anything.... But I do think between taking Pred with breakfast with a few tbs of yoghourt I can get over it - my digestive system has always been pretty good - I love hot and spicy (and rich!) food and never had any problems, so think I will try on my own.
BTW I must say when I first started on the Pred 1 month ago, I kept getting real hunger pangs .... but they have now abated (thank goodness!) and I am trying to cut carbs while keeping an eye on my weight...
Bit concerned though what you say about the calcium: my chewable tabs are "Evacal D3" 1500 mg / 400 iu Vit D3, and I am to take 2 a day (I thought I had read you should have an intake of 3000 mg calcium a day? I have bought on line some Vit K2 90 ug capsules which I intend to start taking to help the calcium absorbtion - I believe that is right?
Yes, I don't know why they make some calcium doses so enormous! I'm only passing on what I have myself been told and have read, and my own supplements come in capsules which allow me to take three approximately 300 mg doses a day, but maybe the chewable tablets are different? The suggested 3000 mg per day (which seems kind of high) should also take into account that you're getting probably quite a surprising amount of calcium from food.
The problem with too much calcium from supplements is it can cause some adverse health problems like kidney stones, although Vitamin K2 (and enough magnesium in the diet) can guard against that. Might be worth a discussion with whoever prescribed it, or perhaps your pharmacist?
The highest RDA for calcium is 1300mg and that is for lactating mothers. It is about 1200mg for over 65s. 3000mg calcium is a massive amount. But the figure on the tablets is the amount of calcium carbonate - only about half is calcium.
I know that's a bug bear with me , they need to standardise the way they show doseages of supplements on bottles and what you actually consume with all supplements , globally to make it easier to understand how much you take.
I think it's like that Traffic Light System with bad foods when Food or Vitamin Supplement manufacturers label their products.
Many like to show it by different scales giving huge figures as the way to convince consumers that their product has ' more in it' than another brand . Usually , when you convert the figures they all contain virtually the same. Doesn't make so much difference for Healthy supplement users but it's a cause if Anxiety and Confusion for Chronic Patients whom need a specific amount as part of treatment.
That would help so much. Half the time I can say the name of the supplement nevermind understand different dosages. I have a real problem remembering how to say glucosamine (!!!)...for the dog not me in this case. 🤯
I know what you mean , and don't even get me started on trying to remember how to pronounce half my medications ; or the illnesses I have that force me to take them.
If I have to go to Hospital and speak to a new nurse or doctor I feel like I'm being forced fed a Medical Thesaurus. ( I actually just ask if I can write the stuff down myself these days , at least I know nothing has been omitted or misquoted) .
Thanks for that. I have checked the packaging and it says 600 mg calcium per tablet. I shall explore further into the 500 mg max dose at a time, and whether I need to take the 2 tabs or get further calcium from my diet.
You are probably on plenty like that since there is bound to be some in your diet - and provided you take the 2 tablets at different times and preferably with some fat around you will absorb all you can. It's isnt a case of the body absorbs 500mg and turns the tap off - it is approximate! You are unlikely to absorn 1200mg at a time though - and there are companies that make a 1x daily dose.
Ah "fat around".... Is that like the yogurt and the Pred - to protect the stomach? And when should I take the Vitamin K - at the same time as the calcium, or morning pills....
And how many? Packaging says they are 90 ug capsules, and to take 1 - 2, and not to take 2 daily if on anticoagulants (which I am not!)
My prescribed start dose was 20 mgs of Pred. You’ll be fine. Invest in a pill dispenser and a pill cutter ( for future tapering) I would be lost and confused without mine. Pred can make you a bit dozy and forgetful. It takes me the best part of an hour to sort my tablets for the forthcoming week. Some people are never totally pain free, but we look for 70% reduction in pain, at least before the next taper. Use one of the dead slow tapers that are pinned on the site. Well done about the gym, what an enlightened doctor - really hard in the winter though, when everything says hibernate!
A DEXA Scan should really be done as a matter of course and every 2 years thereafter.
Thanks SheffieldJane for your understanding about my confusion (durrr!) must say it is a lot easier to take the 3 x 5mg at one time than it was to distribute them over the day.... I also have to note my BP readings, twice a day - amazing how difficult I find that to remember to add into the mix of everything else....!!
And yes you are right - I was so lucky that the Doc I was seeing was on holiday, hence the change of GP.... Her attitude was just so different (but then by then, I think so was mine - I was not going to be fobbed off any longer with "keep taking Ibuprofen and have another blood test..."!)
No dexascan - no AA! And with a history of gum disease discuss it carefully with the dentist because impeccable oral hygiene is necessary when on bisphosphonates - something the doctors rarely comment on. Your teeth are already at risk with gum disease - AA could well add to that.
Were you pain-free at 20mg? It may be ideal to be pain-free before reducing but the reality is that some people are never entirely pain-free. When you start at 15mg it is is usual/recommended to stay at that for 6 weeks before reducing at all - and not overdoing it physically in the meantime. If your blood markers are down to a low level and (preferably) have stopped falling and your symptoms are also greatly improved then you can take that as a yardstick for reduction. You should never feel worse at the end of a reduction step than you did at the start.
Of course, it all depends what you call "normal" but I, like others, have had a pretty normal life with PMR. PMR with pred is a lot easier than PMR without it (and I have plenty of experience of both!). PMR isn't my limiting factor, it is other things. Most things can be got around when you think about it.
The return of pain when you reduced the dose may simply have been your body responding to the change from a dose it quite liked! And you MAY have been doing a bit more because you felt so well.
Personally I think 1mg at a time is plenty - 15mg it should be not more than 1.5mg at a time, 1mg is easier! But 2.5mg works for some people down to 10mg and using a slow taper like DSNS or DL's taper it should be fine:
The WEEEEEEEEEEEE moments have gone! Which is a great relief and has restored a lot of confidence about doing things, especially alone. But the a/f is still lurking. Always starts as a tachycardia and if I notice it and take magnesium immediately it doesn't go any further. If I'm too late like last night it can last a few hours. It isn't BAD, just there and doesn't encourage doing much!!
Yes , spot on , my WEEEEEEEE moments have started creeping back in this week. Only off and on and not everyday , hoping it happens during my 24 hour ECG so I have proof to discuss with the Cardiologist not just my own readings and ' opinion'.
Pretty sure , I still need some drug adjustments , although as you say the increased Magnesium ( and other salts for me ) do help reduce it when it happens.
Although , again , that is totally down to me self medicating , stuff I've seen you discuss and my own research , I got nothing like this from the Doctor so far.
Can't wait until that Kangaroo is under control though , as I miss the independence of going out alone .
Why aren't they giving you an external loop monitor? They store the previous 4 mins of recording on a permanent basis so when it happens and you press the button it sends an ECG to the hospital - or isn't your local mobile phone signal good enough? Though I do appreciate this is Wales ...
Never mentioned it , they probably don't know it exists , and even if they did I don't think it would work from my home , the mobile / internet service is very slow.
Not just the rural broadband but the proximity to an airbase .
Have you got a fitbit? They have started using them as an intermediate stage to be able to monitor lots of people cheaply and quickly so the fancy monitors can be better utilised.
I have my own Rheumy Society recommended Blood Pressure and Heart Monitor , but you know what these medical types are like , they read it but still unless it's on their own test on a given day , they are more than happy to dismiss what the findings to fit in with their own . Thats why I am also stuck with a Rogues Gallery of photos of my visible symptoms on my tablet . Big sigh 😥
Yes, but the point is you need a monitor recording when it actually happens - that's why mine was missed for so long despite me saying what I was fairly sure was happening. Wouldn't a fitbit note asystoles?
You would know , but it's the same concern , they drive you mad , and not just in Wales , for some reason they seem to think that unless it's recorded on a machine given to you by them , you can have somehow managed to fudge the results.
It took many appointments and photos and readings to show at the Behcets clinic for them to acknowledge that I knew what I was looking for and sensible.
With the ulcers , it took photos of ten separate incidents before they were willing to acknowledge they were happening because they weren't there on the day .
Its taken over a year so far to get the Cardio diagnosis I've got now , and only because the Secretary stepped in and organised a second opinion with a Senior .
Exhausting really!
I should probably get a Fitbit , or ask for one tomorrow , thanks for the tip.
Sometimes it takes so long to get a gp appt that when I go in and whatever I have gone with has disappeared (usually until the next day) you can see that look in their eye. Like you I take photos of everything. The next step is videoing yourself with these things are happening... Like the BP monitor, HR so they can see you are sat in a chair when X is happening and not running round the neighbourhood. I even videoed when I posted my pip forms.
I must admit the last two times I went I did consider making a video of me doing a standing test and collecting the results but kept thinking how ridiculous it was that I would need to do it , or they'd just put the results down to obsession and anxiety.
Anxiety ! I'm too flipping exhausted to have the energy to get anxious about anything at the moment.
I'm glad it isn't quite as convoluted to get to see our consultants! The GP will ring as an emergency if necessary. I'm just so glad my final episode worked as it did - and in fact, although the asystole caused the fall, it was getting to A&E without OH and them not having put my reaction to i.v. diasepam on my notes that achieved it all! He'd have stopped them - and it caused a major tachy event which was then interspersed with the bradys with long pauses. I actually didn't notice them and they were up to 7 seconds so lord only knows how long the ones I noticed had been!
I know that's the worrying thing isn't it , if it's left untreated, or you think it's being treated and it's just You , you start to just take the signals and symptoms as something to get on with.
It's pretty dangerous really , but I'd be in and out of hospital all the time now if I went in with the same level of Pain I've been in with in the past.
I must stop thinking of getting a diagnosis if something as just adding a tick on the list to a full result , especially with the cardio stuff , but I've got so matter of fact about it now , I just tell the Family unless something drops off or I pass out it's not worth making the trip.
Thanks for the link PMRPro. I have already downloaded and printed off the DSNS and DL tapers. I certainly had what I think might be called "steroid euphoria" when I was above the 15mg doses - I felt really energised and planning to do all sorts of things (like sort out my wardrobe, the linen cupboard - hey even start my tax return..... most of which are still at the planning stage!) So either purely down to the Pred - or maybe just the result of being pain free and the feeling that at least something had been diagnosed and could be worked upon!
As long as you pace yourself it's usually OK. But often in that initial period people go back t their normal life plus do all the things they have missed whilst getting ill. That when it falls to bits. We always say do the things you enjoy not wSte precious energy on tasks if you get tired and fatigued. Some are lucky they get through without much fatigue at all.
Apart from falling asleep watching tele (something I was quite capable of doing anyway....!) fatigue has not really been an issue. Except that I suppose I did suffer from a certain lack of energy for quite a while - pre the pains (hence all those tasks to do!). Also I had been very stiff upon standing up from sitting for some years - mainly down to my arthritic knees I suppose, but also the rest of my trunk. On the Pred, I find I can stand up and generally move around much better .... maybe just initial dose luck!
I hope it continues. Sometimes we start to realise that some problems we have been having are down to pmr. My ankles and feet were bad for well over a year and disappeared with pred. Now seems to be my new tell that I am having a flare.
I started on 15mg in September, now on 9 mg and plan is to reduce by 1 mg a month if all goes well. I am happy ish to be 80% pain free although it does take a few days to adjust to the lower dose. I have found aloe juice, green tea, cherry juice, Bowen therapy and yoga have all helped in my battle to tame the pmr dragon, hope you find something that works for you.
A good Bowen therapist is a gift! The 2 I saw in the NE of England were wonderful. Unfortunately there seem to be a lot who claim to do Bowen without the slightest idea what it is about - and charge a lot for their "services". It kept me upright and mobile for 5 years with untreated PMR.
Reporting back to all you lovely people following my visit to the Dr today.
Basically I followed all the idea given by Blearyeyed: I 'fessed up about taking the 3 tabs through the day followed by increasing the dosage by mistake to 20 mg, and then reducing it back down to the 15mg she had prescribed! I asked if rather than start tapering now, if I could continue on 15 for a futher 2 weeks to make a total of 4 weeks on the proper dose taken at the proper time, plus that takes me to when I have the Rheumy appointment. She agreed.
I told her how I had concerns about the side effects of the Alendronic Acid and had not started to take it as I had wanted to sort out and see how I fared on the other drugs first. Plus I was concerned about my long term problem with gum disease. She entered my age, weight, height, ex smoker and other factors into some fracture risk assessment tool which showed that I was at the "red" level - which meant AA recommended without a bone scan. She said that recommendation had to be considered against the dental risks. She printed a copy off so I could take it and discuss with the Rheumatologist.
I asked about stopping the PPI Lansoprazole since its long term use can be worse than Pred for causing osteoporosis and she said better to keep on it until I start tapering.
Ah well - you can't win them all....!
Oh and she was pleased with my BP readings I was taking morning and evening - and I no longer need to do them - that is good - something less to have to remember to do/take!
Thank everybody for all your invaluable responses and advice.
The FRAX assessment is only really meanigful when it includes the dexascan result. As soon as you put in "on corticosteroids" it gets pessimistic! No dexascan - no AA!!!!
It may show you do need it - but my bone density barely changed in over 7 years on pred. Loss of bone density at any age isn't inevitable.
Thanks - I shall bear that in mind! She seemed to think too late for a scan anyway - saying "bone damage" occurs soon after starting on the Pred.... Shall discuss with dentist when I go next week....
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But heed the words of Mary, never taper by more than 10% at a time. You are in this for the long haul and going very slowly will result in a lower lifetime intake of pred because you'll avoid flares and steroid withdrawal symptoms. 
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