I have found your community and would like to join, please! I can see much information which I need to absorb but also have several questions which perhaps someone will be able to help me with.....
After having pain, becoming more acute by the day along with fluctuating temperatures, painful hips (I was waddling, not walking!), being unable to lift anything as there was no power in my upper arms and being unable to rise from a sofa etc., I (not the world's brightest, obviously) thought that perhaps the pain was not from helping to lift a piano, as I had originally thought and could be from something else! Doh!
Last week I contacted my doctor who kindly called me in within the hour and did blood tests. The results the following day showed that I had many raised inflammation markers and he diagnosed either PMR or Rheumatoid Arthritis. He then sent me straight into hospital for a day whilst the Rheumatologists worked out the diagnosis which is indeed PMR. Rheumatoid Arthritis has now been ruled out.
I have been put on Prednisolone (initially 15 mg but the pain did not clear, so two days ago it was raised to 20 mg), Lanoprazole 30 mg, Alendronic Acid 70 mg and Adcal D-3. This is my third day on 20 mg of Prednisolone and the pain is better but has not gone entirely: I am hopeful that it will soon dissipate altogether.
I am familiar with taking Prednisolone, as I have been a life-long asthmatic but have taken it usually for a short course (if for one week, stopping completely or if a longer course, tapering it off) but am dismayed to find that I will need 18 months to two years to complete the PMR course. Prednisolone makes me ravenous so I am having to be extremely strict with myself as a hand keeps trying to sneak a crafty mince pie from the cupboard...
I realise that I have much to learn but I am struggling with a few basic things: all my new medications (except Adcal) say to take 'first thing'. This is impossible, as I have been told not to take them together and some are before and some after food with varying lengths of time between them. I am a natural night owl and my bed time is around 1.00 am which means that 9.00 am is first thing for me (although of course, I would be happy to try and change my sleep pattern if it would really be of benefit.). I was intrigued to see information here regarding the production of cytokines around 4.00 am and that it has been suggested that to pre-empt these one could take some Prednisone around 2.00 am or even split the dose with some during the night and some in the morning. I presume both doses would have to be preceded by food? Perhaps this is too ‘advanced’ for me at this time?! My question here really is that if I didn't take Prednisolone during the night but at 10.00 am instead (after Lansoprazole), would I lose any of its benefits as it would now be several (six-ish) hours since the cytokines were produced...?
I should mention that I have an additional problem, that of my thyroid (it is neither over, nor under active): I have a large nodule on it (so far benign) against my oesophagus. This makes swallowing tablets extremely difficult, particularly the Alendronic Acid. Later today I have another ultrasound with biopsies and I hope to find out more but swallowing pills is an issue. I have just taken my Alendronic Acid and I have been told not to 'push' it down with any food so it is a concern that it will actually 'go straight down' as I think it may be sticking. If anyone has ideas on best how to swallow in these circumstances, I'd be grateful! I have tried leaning forward and lying down as seen suggested but it is still difficult.
As mentioned, Prednisolone makes me hungry but reading up on PMR, I understand that I ought to watch carbohydrates and sugars, so am taking myself in hand and giving myself a good talking to! Counting carbs is new to me but I have been trying to keep below 130 each day. Would you all agree that this is a sensible figure? There seems to be much debate as to what limits should be.
Would anyone know about phytic acid? The literature regarding Adcal-D3 mentions that this should not be taken within two hours of eating foods rich in, amongst other things, phytic acid (e.g. whole cereals). Does this imply that bread should not be taken during this period, even if it is mass-produced, such as a seeded wholemeal loaf? I had never heard of phytic acid!
Finally, am I now in the immunosuppressed category with regard to Covid? If so, should I expect to hear something officially? If I am, I am not quite sure what this actually means. Should I be even more cautious about being around others whilst on 20 mg Prednisolone and I suppose, the length of the course, which seems a rather long slog?
I believe PMR is an autoimmune disease but does anyone know how or why some people have it? I am just curious!
Apologies for such a long post but I have had all of this racing around my sleep-deprived (pain) brain for the past week since diagnosis. I am delighted to find this forum and to see that there are so many knowledgeable people who are kind enough to respond and reach out to people such as me. Thank you.
Regards and thanks again
Rostom
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Rostom
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Welcome to the place no-one ever wants to join, but you will find people very helpful.
Others will be along (and add with more info) but 'Alendronic Acid'.
Before you take this ask for a Dexa Scan - it is a 'just in case'. That scan will tell you if you need to take a bio-phosonate and there are others. If you do need it then a visit to the Royal National Osteoporosis Website site will give you alternatives. Including a' once a year one' which would help with the 'swallowing' difficulty.
I had GCA and on high doses for quite some time - had a Dexa scan and bones OK and then every two years and they never moved.
Take the time to go to the Frequently Asked Questions (FAQ's (right hand side of page) and read up as much as you can. Knowledge is Power. .
Talk to your pharmacist and make a friend, some tablets come in soluble form - I don't know which ones but the pharmacist is the best person to ask. They know more about drugs than any other medic.
Come back and ask away, does not matter if the questions sound odd. That is why we are here and PMR GCA UK the registered charity was started.
That is enough from me and I assure you others with more knowledge will be along soon with good advice.
There is a DVD 'You are NOT Alone' on PMR & GCA, the link can be found in the FAQ's section. No jargon at all and made by patients and medics.
Hello jinasc and thank you for taking the time to reply to me.
My GP told me that I should have a DEXA scan in three years time (which sounded a long time to me...). Probably not relevant but I broke my left leg and right foot simultaneously (I don't do things by halves) eight years ago and I had no osteoporosis at that time. I will check out the RNO website and further read the FAQ's.
Yesterday's ultrasound showed a small increase in my thyroid nodule (to 3.5 cm) but unfortunately, there was no one to undertake the expected biopsies but they are trying to arrange those for next week. This means that I am not much further on re. swallowing problems. My GP has prescribed Orolansoprazole, so that's one less to worry about! I will most certainly deep further into the joys of alendronic acid.
Personally I think it makes no sense to be prescribed a serious medication like AA without assurance it is really needed, and no followup for three years. Furthermore were you warned that longterm use of a PPI like omeprazole also contributes to bone thinning and possibly nutritional deficiencies?
First off - if you have ANY swallowing problems you should NOT have been prescribed alendronic acid! You won't crumble in the next few weeks and there are non-oral alternatives anyway. But I would insist on having a dexascan first - I didn't need it and 12 years on still don't need it. Not everyone loses bone density when on pred. You must not lie down when you take AA or use anything other than 250 ml of tap water to wash it down.
Don't worry about the phytic acid story. It is the manufacturers covering their backs
To be honest, I doubt the usual UK diet has enough wholegrain cereals in it to cause serious problems - but it WOULD apply to people on the supplements in areas where large amounts of grains are eaten and there is a risk of nutritinal deficiencies such as Africa and Asia.
You must not take the pred and the calcium supplements at the same time - the calcium is thought to wrap itself around the pred tablets and stopping them being absorbed effectively. Our usual recommendation is to take pred for breakfast and the calcium supplements with lunch and dinner - separates them nicely.
In your case - why not try taking your pred after midnight before bed? Most pharmacists say a glass of milk or yoghurt is enough to take it and if you are taking lansoprazole it certainly will be.
130g of carbs wouldn't be low enough for me (or Snazzy) - we both need something heading for a keto level but everyone is different. 130g carbs is certainly low compared to a normal western diet, especially in the USA and UK. Most important is cutting processed carbs and added sugar, and when you do that, cook from scratch and take out root veggies, fruit, pastry and desserts you will probably get pretty low. Think more of what you CAN eat than what you can't. I find this site very helpful and easy to understand:
Once you cut carbs a lot, you will find the hunger pangs recede as the spikes of blood sugar are reduced - it is the insulin production that sends the BS level tumbling to too low a level and your body craves carbs to bring it back up. When you are on pred the liver is triggered to release random spikes of glucose from body stores in liver and muscle and that triggers release of insulin in anticipation but since there is no meal to use it up, the excess insulin encourages the sugar that is around to be deposited as fat stores and then the blood BS level is low so you crave something sweet.
Why do people develop PMR? No-one knows but it is postulated that all autoimmune disease results because throughout life our immune system is subject to insults that upset its functioning - everyone knows that a stressful job or other situation makes someone more likely to catch everything going. Those insults include illness, infection, trauma, physical and emotional stress, environmental and chemical factors including vaccines and even drugs. Is it coincidence that a/i disease has increased along with enironmental pollution and more stressful lifestyles? Eventually a factor is the straw that breaks the camel's back and the immune system goes haywire, turning on the host's own body and causing inflammation and tissue damage. What you are diagnosed with will depend on the type of damage and what reduces the symptoms.
If you have to develop an a/i disorder, then PMR isn't a bad one to be landed with. Unlike most a/i disorders it does burn out and go into remission sooner or later - but for only about a third of patients in under 2 years. Half are permanently off pred in under about 6 years - which suggests that half of us may be on it even longer, albeit mostly at a low dose. We have a few people on the forum who are still here north of 10 years - it DOES happen, but it isn't terribly common and forums by their nature tend to have members with problems. Once most people are off pred they sail off into the sunset and aren't seen again. You rarely hear the recovery stories.
Thank you for responding to my rather plaintive message - sorry if I seemed a little worried.
Gosh, you have provided so much information, thank you.
One point, I because I have an issue swallowing at the moment, I took far far more than 250 mls of water with the alendronic acid and now wonder if I have swung the other way and negated its effect?! I must have drunk close to a litre of water to try and push the pill down without any food.
Thank you, too, for the information on phytic acid, who knew there was such a thing?! I thought it amusing that many of the suggested bedtime snacks in the link were carbs!
Thank you for advising about not taking the prednisolone near the Adcal. It is still a juggle for me to accommodate these pills - and I have others to fit in too but it is not the end of the world.
We do cook from scratch but a low carb diet is almost diametrically opposed to our normal meals of 5/7 vegetarian food with two days of meat or fish (generally low fat with little butter or cheese). We love all the carbs I can't now have, root vegetables, pasta with vegetable sauces, fruit and not least occasionally a stonking veggie sausage toad in the hole with baked beans!
I found the diet-doc website really helpful and no doubt I will get to grips with everything but at the moment I am pining for what I don't have. Not the attitude, I know, so I will give myself another talking to!
On why one develops PMR,: you mention illness and I was musing that I had a whole series of antibiotics from mid-2020 to mid-2021, I think somewhere in the region of 21 courses. This problems has been cleared up but did these contribute to PMR starting a few months later...? Suppose I will never know.
Mmm, six to ten years of PMR? Poor people! I was sent reeling at 18 months - two years but am beginning to understand that this is indeed not a race and that I just need to think about sorting this initial problem out (I still have arm pain), the carbohydrates so I don't gain weight and gently gently tapering off. Fingers crossed...
It's a shame that you don't hear of the success stories. I guess that when well, memories of an illness just melt away.
Thank you very much for your help and advice, I really do appreciate it all.
Please come back at any time with any query, there's always someone about....and please can you add date of diagnosis, and starting dose as well as country on your profile, helps us to help you and saves us asking in future....take care...
I will most certainly read everything that I can on PMR (she spits).
I have updated my profile - I was just slightly nervous at having information 'out there' but it's done now.
I am overwhelmed with all the help and advice here and just want to thank everyone. I really am grateful and feel a little less 'alone' than I did yesterday!
See you are on other forums as well so yes you have had a rough deal…,but hopefully we can help with PMR - so just ask - any time, anything. Don’t ever sit and fester over something - just get those fingers tapping 😊
We do drift off at a tangent at times-but soon get back to the matter in hand.
I am so sorry you have been diagnosed with PMR. I just take steroids and vitamin D with calcium. Although I do have a continual fight with my GP about alendronic acid. My Dexascan results are good but he feels I should take AA just in case! I have the coated variety of pred, so do not need a PPI like lanoprozole either, although a lot of people who take uncoated pred manage on just yogurt. I am a night owl too. I take my pred at around 2am with a piece of hard cheese. I would talk to your GP about a Dexascan and forget the alendronic acid until you get your results.
Piglette - I was amused to read that you too take the tablets with a piece of cheese, just like me! It gets over the problem of swallowing them very well. Mind you, when I informed my GP of this method in order to get the statins down, there was a lot of eye-rolling………😉😄
I read somewhere that you should use hard cheese, Swiss preferably. I swap between Comte and Emmenthal. If I ever come off steroids I will miss my slice of cheese. Someone also said cheese helps clean your teeth. I am not sure if that is true or not.
Me too - but it doesn't get a passport! There was an article in the Guardian this week that Wensleydale was a good substitute for Brie on the xmas cheeseboard.
I’m guessing that you might have tasty alternatives in your part of the world tho’?! Having reached Club Zero earlier in the year, I haven’t being paying as much attention to the forum as previously - unfortunately I missed your own very sad news
So - whilst I’ve ‘got you’, I want to thank you for all your dedication in getting so many of us through the curse of our condition and to wish you all the best for the years to come.
Thank you. Getting there - bit more company now and again wouldn't come amiss but that isn't really any different from last winter and at least I don't worry about bringing Covid home.
We do indeed have some lovely cheese here but it is different. I can often get cheddar in the village now - limited amounts have appeared twice now alongside the little jars of Stilton which have always been on display. They seem to disappear rather rapidly - might have something to do with the GKN factory in town!
BC I drove along the valley to Austria where a small supermarket chain stocked it. I have found an alm cheese from the side valley that is very similar to UK cheese in flavour but the texture is more like aged Gouda than a crumbly English cheese. Crossing the border is out again - Mr Draghi is being hardline on that!
Could well be - I eat far more cheese than I should ... Xmas dinner in this household has only been turkey about twice in the last 20+ years! The first year we were back in the UK after Germany because the MIL was there and she expected it! The year she died and OH was ill we had a chicken - turkey would have fed we three for a fortnight. Other than that we were here and skiing! Latterly Christmas day had become a tradition of pizza - only place open in the village on the 25th. The hotel closes the week before xmas - nearly 2 weeks this year - and reopens on the 26th. Everything was closed last year - but might get a takeaway pizza this year. That'll do 2 good meals ...
I suspect there may be one in the cellar courtesy of the camper van. Though really the pleasure of grilling/raclette is the taking ages over it while chatting isn't it? But don't worry - I have an excellent mini-cellar of Sekt and prosecco and I trust the girls will video call with a glass to hand - Nat will at least!
After reading advice here, I will speak to my GP to ask for an earlier Dexa scan (three years seems a rather long long time) to see the state of play with my bones and perhaps be able to do away with the alendronic acid...... When I speak to my GP next week I will discuss missing a dose or two of the acid until I hear more about my thyroid/oesophagus.
My doctor has just given me oralanoprazole, which has made a difference to my morning timetable.
My prednisolone from the hospital was uncoated and I have yet to pick up the follow on prescription so don't know if it is coated or uncoated. Obviously the enteric one sounds much better.
Another night owl - how exciting! I will probably wait a week or so until I can get on top of the symptoms of PMR but then think about a night dose of prednisolone. I think I am too 'new' to undertake this immediately... so much to learn!
Thanks, too for the idea of cheese to push pills down. I was taking dried prunes (tastes like fruit gums!) but guess what is really high in carbohydrate?! Just my luck.
Thanks again for your kind advice, I am very grateful.
I would simply refuse to take the alendronic acid given your swallowing difficulties - it is a clear contraindication. There is no neeed for you to take it at all - there are non-oral alternatives but they don't offer them without a bit of pushing as they cost a bit more. But nothing like as much more as it will cost if the AA causes oesophageal problems because you can't swallow it easily!
It's unnerving how things are different depending on surgeries and where you you live, my last chat with my doc, ended with I've got when you had your DEXA scan and I'll be booking you in every year for a follow up one. If only these things were consistent across the NHS.
They might find that doesn't work - I put in for a repeat because by the time I wanted it it would have been 2 years and I would be in the country. Because the request went in a few weeks too early it was rejected by the rheumatologist who screened them.
He is a she, but that's irrelevant, and yes you may well be, in fact probably are correct, but at least she is understanding and trying to do the right thing. Not a problem at the moment anyway. Who knows what will happen over the next few months?
I was involved in raising money for out Dexascan. They are like gold dust in my area. The operator said that they have people coming from miles around.
You've heard a lot from our most expert members, but I'll chime in about a couple of things:
Wait until your pain levels are reduced before attempting to meddle around with reductions or dose splitting. You've got a high level of accumulated inflammation to clear and start approaching "normal" function. If you do decide to split your dose, do it slowly, transferring a couple of mg at a time until you reach a balance that's right for you. You'll know when you hit it when you have little trouble sleeping and have little pain upon waking.
Drop the AA unless you already have osteopenia or osteoporosis. If you do, ask your medical team about non-pill forms of administration. There are a lot of options. If you don't know, ask for diagnostic tests for bone density.
I always eat a full meal before I take pred, and I don't take any medications or supplements along side it, or for 4 hours before or after a dose. I've never needed anything to control acid.
Take vitamin D and calcium with meals and outside of the 4 hour pred window. I've not had any digestive issues in the 5 years I've been at this.
Don't be in a rush about anything. This is a "Go Slow" condition. Those who try to force their bodies to get better fast wind up taking a lot longer and experience a lot more pain. It take most of us 6 years to successfully get off the pred, and all the pushing in the world isn't going to make your PMR leave your body one day earlier.
Hello Good_Grief and a huge thank you to you for responding to my pathetic plea for advice.
I do still have some arm pain so am not 'there' yet. I would rather not have a yet higher dose of prednisolone as this will obviously take me even longer to drop down again. I guess that the pain will gradually go. In any case, it is nowhere as dreadful as last week, so the prednisolone has worked to a great extent. As far as I know my bones are fine but when I speak to my GP I will be asking if it is possible to have a Dexa scan.
I have been eating a boiled egg before taking my Prednisolone which to my my mind is not a full meal but I have not had any indigestion/reflux issues so I guess it must be working!
I do now understand that this is not a race and that I will have to be a patient patient, so will rule out any thoughts of racing to finish - as is said nowdays, 'what will be will be'...
You may well find that a higher dose of pred now results in an easier course later with fewer struggles. And that is worth a lot.
In GCA some patients get a 3 day pulse therapy of 1000mg/day given as an infusion and then switch to oral pred at 60-80mg/day. It has been found that the patients who start with this massive dose actually often need less pred altogether!
A little footnote to Good Grief's helpful reply: In fact prescribing bone medications for osteopenia (low bone mass) is generally not considered best practice, although a lot of doctors worry about potential bone thinning effects of pred (although oddly enough not concerned about bone thinning effects of omeprazole and co). If you are looking through the FAQ post you will find my story under Bone Health.
Hi Rostom! Just to add that I have a lot of issues with digestion, rather indigestion. I was given AA for a yr, but then it was felt this might be adding to the indigestion, so it was switched to 6-monthly injections of denosumab - AA is not the only way to prevent bone loss if you are vulnerable.
I am sorry that you suffer with indigestion: I think that bodies are like cars and some people have absolutely no trouble whatsoever and others are like a Friday-built Ford in the 1970's!
I have just had a call from my GP regarding my thyroid/oesophagus/swallowing issues with alendronic acid and she has suggested and prescribed effervescent alendronic acid which will solve yet another problem for me. I am fortunate to have a great GP service.
I will keep in mind the denosumab just in case for whatever reason I don't get on well with the new tablets.
It really isn't a complex problem: there are annual infusions that can be used and avoid ALL problems with swallowing. They also save the hassle of planning the morning to take the tablets once a week.
There are many reasons to avoid denosumab unless you definitely need a bone medication and none of the others are suitable. It is a medication which should be used only in special cases. There are one or two others which are similarly problematic but denosumab or Prolia is the best known. Please read up on medications you are prescribed. There are several excellent medical sites which give clear information about medications as a place to start. Patient experience is available on several bone health communities in Healthunlocked.
Welcome ! I wouldn't say 'not the brightes' for blaming a piano, I was convinced I had simply aged 30 years very rapidly. You will find a lit of help here, there is also a good book, I think it's called PMR A survival guide. Useful to have something to highlight.
Welcome to the club no one wants to join. This forum is THE BEST. Supportive and they know what they are talking about. You can't be in the UK (fill in your profile) as whoever had a GP say come right in....
Best of luck and once you get your head round things you will get on with it.
Hello Rostum, I have a nodular thyroid and some tablets feel as if they have landed on a shelf in my throat! I tried alendronic acid for a couple of weeks then insisted on a bone density scan. I do not have osteoporosis and there was no need for me to be taking AA.I initally did not respond to 15 mgs of prednisolone, nor 25mgs. Eventually, after ruling out all other possibilities for my pain, I responded immediately to 40 mgs.
Hi Vaggers and thank you for adding to this thread.
I am sorry that you had to have such a high level of prednisolone: I am hoping I stay on at least the 20 mg now prescribed......
You may be interested that a short while ago, my GP called (still working!) and I have now been prescribed effervescent alendronic acid tablets, due to the problems with my throat. I wonder if this may be benefit to you, too? Perhaps something to consider?!
looks like you now have a full response from those in the know Rostom. Welcome to the "club". No one wanted this and you will discover the guessing game as you progress. All sorts of new conditions rear their heads to annoy and challenge us and this forum is a godsend in clarifying them. Sometimes you just have to soldier through and hope it's better the other side. As others have said it is a "take it slow" approach rather than a push through so be patient. It is not something I am good at but have had to adjust as it is the only way. Good luck on your journey.
Yes, what a wonderful body of people. I have helped out on occasion in Health Unlocked but this forum is amazing and I am learning so much. I don't particularly WANT to learn it all but hey ho!
I do now understand the slow approach is the one that will work best and am now committed to the 'what will be will' be approach.
Hello Rostom and welcome to the forum - I’d echo the reply from Whitefishbay exactly!I’ve looked at the all the previous comments and would say that if you’d had all those contributors in your GP’s consulting room with you (bit of a squash, admittedly!), you would have got 99.9% of all you needed to know about PMR in one sitting! The remaining 0.1% you can get by asking questions on this site.
Swallowing tablets - see Piglette’s reply.
Dexascan - definitely ask for it, I ditched the AA as soon as my scan results showed no problem.
2yrs duration - not particularly likely, I managed ‘club zero’ after 4.5yrs
Lifting a piano - I thought mine due to some heavy(ish) diy….😄
You are absolutely right about having so much knowledge within one consulting room! That would have been great.
I will check the scan out when my throat/swallowing problem is sorted: it'll be first on the list - three years seems far too long. Hopefully I could ditch even the effervescent acid, then.
4.5 years?! Poor you. It is indeed a long hard slog. I am pleased that at least now you have been able to join 'club zero'.
Glad also to see that there are others as stupid as me with regard to self diagnosis!!! Hope at least that you managed to complete your diy.......?!
Thank you very much for taking the time and trouble to contribute.
Hi Rostrum, welcome to the forum, I'm not going to try and add anything to the excellent advice you have already received, other than to reiterate that we have members across the continents as well as a number of "night owls" so don't worry about asking questions at any time, it is likely that someone will be around to listen and help. This can be a scary/worrying time when first diagnosed but no question on here is regarded as being silly so don't hesitate to ask. FAQ's are a brilliant resource and well worth spending time perusing.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
and I trust the girls will video call with a glass to hand - Nat will at least!
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