I was diagnosed with PMR 5 years ago and have been taking predisilone (steroid) since then. I have managed to get down to 8mg per day but have found it almost impossible to reduce the dose further. I have had cataracts in both eyes induced by the steroid intake and recently had a total hip replacement which I'm sure is connected as the onset of hip pain etc was very rapid. I really hate taking the steroids but without them find I cannot even lift my arms. Damp weather is a problem as it high humidity. I have read about Emu Oil and wonder if anyone has tried it? and did it work? I also have a heart condition and have found many people with heart problems also have/or have had PMR - is heart medication the link ?
Dear Carole
Sorry to read about your horrible experiences with PMR and the steroid medication. I have posted experiences on here in the past and have sounded off about these 'miracle' drugs that yes, do enable us to lead a (more or less) normal life but leave us with a legacy of side-effects. I've had experience of terrible hip pain, but when I raised the steroid dose again it faded away almost completely.
Since joining this website I've made contact with other sufferers and we are working to set up a network of self-help groups. There are groups around, but they are pretty unco-ordinated at the moment. Hopefully, in a few months we'll have a much more established network. We would like to see much more research into the causes and treatment for this life-changing disease.
So far we haven't been able to come up with any convincing evidence for any dietary supplements that might help, but we are ever hopeful! I'm pretty convinced that the more humid the atmosphere, the more achy and immobile I feel. Several of us also have a hunch that there is a connection with the circulation system more generally - not necessarily the heart itself, but we've noticed that several sufferers we are in contact with have raised cholesterol. I must stress that none of us are medics, we just have the knowledge of living with pmr and/or gca.
If you'd like to get in touch, please follow the links to my personal email or send a message to pmrfighters@yahoo.co.uk
Best wishes
Kate
[quote:41f6376aee=\"Carole Ann\"]I was diagnosed with PMR 5 years ago and have been taking predisilone (steroid) since then. I have managed to get down to 8mg per day but have found it almost impossible to reduce the dose further. I have had cataracts in both eyes induced by the steroid intake and recently had a total hip replacement which I'm sure is connected as the onset of hip pain etc was very rapid. I really hate taking the steroids but without them find I cannot even lift my arms. Damp weather is a problem as it high humidity. I have read about Emu Oil and wonder if anyone has tried it? and did it work? I also have a heart condition and have found many people with heart problems also have/or have had PMR - is heart medication the link ?
Hello Carole - I was interested to read the question at the end of your comments \"Is heart medication the link? I have had PMR for 2+ years and at the beginning of last year was changed from a Beta Blocker to an Ace Inhibitor which was considered to be better at controlling blood pressure - the result was that within four weeks I became very ill and 3 weeks later was diagnosed with GCA (Giant Cell Arteritis) which is linked to PMR. Definitely in my case the Ace Inhibitor either caused or brought out a dormant GCA.
[quote:f4063a4274=\"Carole Ann \"]I was diagnosed with PMR 5 years ago and have been taking predisilone (steroid) since then. I have managed to get down to 8mg per day but have found it almost impossible to reduce the dose further. I have had cataracts in both eyes induced by the steroid intake and recently had a total hip replacement which I'm sure is connected as the onset of hip pain etc was very rapid. I really hate taking the steroids but without them find I cannot even lift my arms. Damp weather is a problem as it high humidity. I have read about Emu Oil and wonder if anyone has tried it? and did it work? I also have a heart condition and have found many people with heart problems also have/or have had PMR - is heart medication the link ?
Had to join in this one as although I have high blood pressure now, it is steroid induced. After a lifetime of somewhat minor problems with LOW BP, I was flabbergasted when informed that the situation had reversed. I was actually quiet for a whole five minutes. At the time I blamed Sainsbury's. Being a very reluctant shopper anyway I could feel my blood pressure zipping up every time I set foot in there as they were refurbishing/refitting it and NOTHING was ever in the same place for two minutes together. I also found that nothing was ever in the logical place for it either. I did hope that when they got their act together things would improve, but I still have to go from one end of the shop to the other just to get milk and eggs. It still sends up my BP (shopping, I mean) but was told a few months later that the steroids were responsible. I believe they're also responsible for my white cell count playing silly whatsits on occasion and also that my cholesterol/triglicerides are up this time.
Prednisolone - Your best friend and your worst enemy!
I was diagnosed with PMR in May 2011 after going through 5 months of horrendous tests to reach a diagnosis. I was put on Prednisalone and things went fine until the doctors told me to reduce it. I got down to 3mg per day and started to feel unwell, pains in arms neck and tired a lot. however I persevered and eventually 2 weeks ago I came off them altogether. I am now suffering some of the symptoms of PMR but not all. I think I am anemic as I am tired all the time, I have pains in arms and neck. The doctor is doing a synacthen test next week to see how my adrenal glands are working, he is of the opinion that they are and my symptoms are PMR and that I should go back onto a low dose of steroid, I am in a quandary, does PMR go away by itself eventually or are you stuck with for life.
Hello Wardy
To answer your question, yes it is possible for PMR to go into remission by itself....... eventually. I know of one person who without treatment spent a year in bed, and I spent several months in bed due to undiagnosed and therefore untreated PMR.
BUT, without steroid treatment to control the inflammation, you are at high risk of developing the linked condition GCA (Giant Cell Arteritis) which can lead to loss of eyesight without emergency treatment with very high dose steroids. I speak from experience as without diagnosis and treatment for PMR I went on to develop GCA.
There are also other possible nasty health conditions if inflammation is allowed to course through your body without treatment.
I had a severe flare in symptoms at 5mg and not knowing better at the time continued reducing down to 3mgs when I was on the point of becoming bedbound again. My steroids were increased back up to 10mg and slowly I reduced again but remained at 5mg for many months to ensure that this time the inflammation was kept at bay before continuing reductions and eventually getting off Pred. This took 5 1/2 years.
It seems a shame that when you started to feel unwell again with fatigue and pain in your arms and neck, you then continued to reduce, whereas if you had just increased slightly for a short while you would have stayed on top of the inflammation and eventually gone into remission.
It will be useful to get the results of your adrenal test, but if it was me I would get back on to a medium dose of steroids very quickly as if you leave it much longer the inflammation may gather pace and you will be back to square one.
I do hope this helps and I wish you well. Do come back and let us know how you get on.
Hi Wardy - MrsO has said most of it so I'll not repeat it.
However, maybe there was a misunderstanding about the reduction. The pred hasn't cured the PMR, there is no cure, but it is used to manage the symptoms so you can have a better quality of life. The dose you are started on is one that is enough for the vast majority of patients - and then you should reduce slowly to find the lowest dose that is enough to control your symptoms. And that is YOUR symptoms, not mine, not the neighbours, not the cat's :D Everyone is different and some will manage to get down to 5mg or even less - others don't, I cannot get below 9mg/day without the symptoms returning and that is after 4 years and trying several times.
As soon as you felt the symptoms starting up, the stiffness and so on you should have stopped at that dose or slightly above - that is your lowest effective dose. It is also common for doctors to recommend staying at 5mg for at least 6 months, sometimes more, and that does seem to help people get further down after that stabilisation.
As MrsO says, letting the inflammation that causes the symptoms get out of hand is a risk. I too would ask to go back to at least 5mg for a week or two and see if that works - you may need an even higher dose though and almost certainly will if you leave it much longer.
Eileen
Spot on, Eileen, I think.
I was diagnosed with PMR about a year and a half ago after several months of increasing pain and a load of blood tests. Sure enough, ESR and CRP were higher than normal. I'm Type 1 diabetic, so my rheumatologist started me on a lower dose tham most would go on, at 10 mg/day with breakfast. Prednisolone tends to raise blood glucose levels and everyone thought my insulin doses would have to rise. In fact, the loss of pain meant my system was under less stress and I have had to reduce my insulin doses gradually back to normal for me. At time of diagnosis, my insulin requirement had risen by about 75%. A huge increase and my BG's were still tending to be high. It seems T1 diabetics are more prone to things that appear to have autoimmune-like characteristics.
On start of steroid, it took about 2 days for symptoms to be bearable, followed by steady, slow improvement. I was pain free after about 2 to 3 weeks. After 2 months, I started reducing the steroid dose as discussed with my rheumatologist and GP at the rate of 1 mg down every 2 months. When I reached a dose of 5 mg/day, I reduced the reduction rate to 0.5 mg every 2 months. I'm now down to 2 mg/day and all still OK. Hoping to be steroid free by the e/o 2013. Also, I want to get off the alendronic acid and calcium/D3 that help protect my bones from the calcium depletion caused by the prednisolone. Will be off 3 more pills by the end of this year. Hooray! But at least I have had no serious side effects from the steroid.
Hi Steve - welcome to the discussion (at least I don't remember your name, assuming Steve is male you tend to stand out!)
T1 diabetes is an autoimmune condition anyway - there is a big difference between the causes of T1 and T2. It doesn't matter what autoimmune disorder you develop - you are then at more risk of developing another. Sucks a bit really!
One group in Italy did a study starting their patients at 12.5 mg/day and achieved similar results to what are found with 15 or 20 except it took a bit longer to achieve maximum relief, the dramatic improvement in under 48 hours found with most pure PMR patients (as opposed to the ones who have added extras in the form of other arthritic problems) was still seen. Overall, that will make a massive difference to the total dose of pred which is what they are attempting to achieve.
I've taken daily calcium/D3 religiously since I was put on steroids but only took AA for about a month. I have no objection to it being used if there is evidence of loss of bone density but I do object to the concept of prevention is better than cure which, in fact, is now felt by many experts to be a false one. Over 4 years with at times quite high doses of pred my dexa scan is unchanged. It would have been 4 years of unnecessary AA - and that is approaching the maximum period it should be used without a break. Plus - it occurs to me - had I taken it what would that have done? There is a suggestion that the bone formed can be brittle because it has a different structure and is prone to atypical fractures - is that something that happens in bone that is actually normal but subjected to AA?
As for blood glucose - mine have remained normal the entire time. Cholesterol has gone up and I was persuaded to take a statin last year by the hospital - it was very against my will and I was proven right! Within a couple of weeks I could barely walk 50m and was in so much pain despite high doses of Medrol. I stopped taking it, the cardiologist approved - but it took months for me to recover to the state I'd been pre-statin.
Good luck for the rest of your reduction - do hope you are successfully one of the 25% who can get off pred in 2 years!
Eileen
I was thinking of asking my GP about coming off the alendronate, too, for the very reasons you give, Eileen. And yes, I'm male. Both my GP and rheumatologist wanted to prevent potential loss of bone rather than to reverse osteoporosis, which I don't have. Alendronate, in effect, bonds to calcium semi-irreversibly, thus progressively coating exposed calcium atoms in the bone matrix with an organic chemical (I mean in this context a chemical classed as organic rather than inorganic. I'm a chemist by profession). The interruption of normal bone cycling could lead to, I suggest, a potential for changes in mechanical properties of bone over time. I would not like to suggest demonstrable adverse changes are caused but I want to be cautious for my own health.
I think I'll book a telephone consultation with my GP, shortly. I have no problems with continuing the Ca/D3 tablets.
I'm also taking a statin (simvastatin 20mg) and had no problems with it. When I developed the PMR, before diagnosis I tried stopping the statin as I was aware that some were associated with severe muscle damage in a few people. No effect so I restarted on the simvastatin. Diabetics are very prone to health problems affecting the cardiovascular system, so I have no quibble with taking preventative measures. T1 is tough enough without risking all the complications.
I should mention also that a hint of a cataract was detected on my last diabetes retinal check. Another good reason to end the steroid. I believer there have been some small studies that show that regular doses of ginger may reduce or prevent formation of cataracts. As I love ginger and it's harmless and cheap, A couple of ginger biscuits per day or a stir fry with fresh ginger or ginger and orange marmalade or honey & ginger tea all seem rather acceptable. Even if ginger does not help, I'm not doing any damage.
Hi Steve
I thought it might reassure you to know that I didn't take any AA meds during my 5 1/2 years on Prednisolone, starting dose 40mgs (PMR and GCA). A private DEXA at the outset (NHS refused!) revealed normal bone density. The test was repeated 2 years later (courtesy of NHS this time 
and this showed a very slight reduction to osteopenia levels. Another 2 years later, and a further scan showed it to be in the same range - quite possibly a normal age-related result rather than due to the steroids, but no treatment needed.
Neither was I ever prescribed Ca/D3 meds - my GP thought my rheumy had prescribed them, and vice versa! A lucky escape maybe as I've since learned that supplementary calcium may have aggravated my sole kidney (CKD3). A recent Vit D blood test, however, revealed a low reading of 36 (in common with many of us in this sun-starved corner of the world, it seems!). I have just completed a 3-month course of Vit D (colecalciferol) and repeated blood test has shown a great improvement to 89, so I'm a very happy bunny!
I wasn't able to tolerate the usual PPIs prescribed alongside the steroids (Lansoprazole, Omeprazole) - horrid bowel problem especially with one, so my tip for tummy protection is a 'live' yoghurt with breakfast each day before taking the steroids. I also drink a glass of warm water with a few squeezes of lemon first thing each morning, and take a teaspoonful of Manuka honey - all good for the digestion.
Like you, I have also developed small cataracts (my ophthalmologist believes this is age-related rather than due to the steroid) and have high eye pressures - although that can be a side effect of the steroids, I think I had the tendency pre-steroids. I was very interested to hear the "ginger" tip re the cataracts - also love ginger, and a good excuse to indulge in a ginger biscuit or two!
It's wonderful to hear how well you are doing with your reductions, Steve, and long may that continue - best of luck.
Thanks for your experience, MrsO. I had a radiological bone scan during the tests for what I turned out to have (i.e. PMR only). As a youngish male of 56 years, my bones are pretty dense. So I appreciated the caution of my GP and rheumy to protect my bones. But I will be discussing this with my GP quite soon. My general health is robust and the 'ole kidneys are working well within parameters.
Luckily for me, I don't seem to suffer obvious side effects from any medicines I've ever taken, like nausea, stomach aches, dizziness, etc. I also was acutely aware of how the alendronate should be taken in order to avoid stomach irritation.
Fingers will remain firmly crossed for the eventual end to the steroid treatment.
I am really not convinced of the "protective" aspect of AA - and as time goes on increasing numbers of medical people are also beginning to wonder. A lot of the work was done by the company who developed Fosomax so personally I am sceptical for that reason alone - I'm not saying they are lying, merely selective. To cut a long story very short, they dished out basic bone density measuring devices and showed how all these people didn't develop osteoporosis and a generation of medics believed the sales pitch. My husband is a medical physicist (my field is physiology) and his department had looked at these things that measure calcification in the achilles tendon area - and they came to the conclusion that if they show osteoporosis it was already VERY advanced. Only a dexa scan is anywhere near accurate - and there is variation between machines even with them. There are several other wonder devices that are equally inaccurate, not least the tympanic membrane thermometers.
It is one thing to hand out a drug like sweeties that has been used for decades and where the long term side effects are well known. Alendronic acid hasn't been about long enough for us to have any idea what a substance that is never going to be removed from the body can do. It is very firmly fixed as part of the structure of our bones - nothing will remove it. Noone knows what will happen to that in 30 years.
And for your consideration: only some 40% of people on steroids actually develop serious degrees of osteoporosis and that includes the people who are on pred from a very young age. . Not sure what the figure is for the general population though by no means everyone does either. However - I am of the opinion that they are working on old parameters. This current generation has had a better diet and far more weightbearing exercise in later years than previous ones. We also tend to be bigger - not always a good thing but in the context of osteoporosis it is! Things may change in later generations of elderly but that remains to be seen.
Put it this way - I'd rather take pred with its 50 year history than AA
Eileen
My telephone consultation is booked. I will let you know how this goes. I am not going to prejudge but I might just stop the AA unilaterally. On 2 mg pred per day, I should think my steroid induced decalcification is on the very low side.
Does anyone know the half-life of AA binding to bones? It shouldn't be infinity. All chemical reactions have an equilibrium position, even at the extremes. There will be a position for almost zero AA serum concentration with that bonded to bones (mass per unit area). Is the time until equilibrium known, I wonder?
The mhra document on alendronic acid 70mg tablets says:
"CLINICAL PHARMACOLOGY
Since alendronic acid is rapidly taken-up by bone shortly after administration, plasma
levels are below the level of quantification, thereby ruling-out a conventional
bioequivalence study with measurement of plasma levels of the drug. It is also known
that the mean terminal half-life of elimination of alendronic acid from bone was
exceedingly long (estimated to be 10.9 years with a range of 5.4-19 years). This may
potentially rule-out the conduct of crossover-type trials because of the possibility of
significant urinary drug levels from the first dosing period being present when the
subject returns for the second drug period. However, in practice it has been found that
the maximum rates of primary urinary alendronate excretion occur between 1-3 hours
after dosing and that over 90% of drug to be excreted renally is recovered in a 0-72
hour urine sampling period, giving a half-life based on urinary excretion data of 33 +/-19 hours.
Furthermore, it was shown that the release of drug from bone is not a
significant cause of carryover effects, thus permitting the use of crossover designs."
Infinite not - but exceeding long! The bioavailability is quite low and the urinary half life not exceptionally long but tied to bone it's a different matter. Will there be chunks of bone with patches that survive long after the rest has crumbled one wonders? It is absorbed preferentially in areas of bone where there is active osteoclast activity so will those bits be resistent to the effect of time?
The Wiki article on it mentions a few of the cases that have given pause for thought. After 7 years or so a femur can just snap - no need to fall. Just put your weight on the leg. Tell me my bone density is falling and I'll start taking it before it gets to a parlous state - that sort of prevention is acceptable. But not giving it to an otherwise healthy person "just in case"of something that is known to only happen in half of us. I live in northern Italy and here I can have an expensive form of pred with no question since the other offering of methyl prednisolone gave me very unpleasant side effects. I assume being on pred they also tend to hand out caclium/vit D supplements - I continue to get that as I did in the UK. They are, however, horrified at the idea of using AA until there is evidence it is needed. If I had taken it now with no real need the situation may arise later when I do need it, I'm only 60 and have been on pred for 4 years, I trust I won't have to take it for the rest of my life - and I've already used up my recommended allocation.
Eileen
Ok, that more or less helps me make up my mind. The AA stops prety much right away. I should live long enough to see my bone AA levels drop a bit and I may not have saturated them if I stop now after about 2.5 years of treatment. The Italians seem to have a quite different attitude to use of AA as well.
Eileen, what prednisolone analogue do you take, if you don't mind me asking?
I go to the gym quite a lot, training with quite heavy weights, and walk for miles most weeks. Maybe the frequent stress on my bones will help protect them from the risks of AA brittleness.
In my limited experience, British GP's are very resistant to using some of the latest, possibly more advanced drugs, probably due to the higher costs. But it seems their conservatism may store up problems for the future for some people At least my diabetes treatment is more or less up to date with use of the latest insulin analogues, which work very well for me (e.g. Lantus & Humalog).
I take Lodotra. It is a formulation that has a very thick specially developed coating which, when taken within 3 hours of food takes 4 hours to disintegrate, releasing all the pred at one go. You take it at 10pm before bed and it releases the pred at 2am so that the peak blood level is 4am. This is based on trials done with RA patients in hospital for some reason who were being disturbed overnight for monitoring anyway and they gave them their pred at various times to find the optimum time to take the pred to minimise morning stiffness. They established that the best time was 2am. This is in line with the concept that the substances that cause the inflammation, called cytokines, are released about 4.30am. The pred is there, lying in wait and pounces on the cytokines ;-) But noone wants to set their alarm to take their meds at 2am do they?
Lodotra was developed by a German company and approved for use in RA in Europe a few years ago, the USA is possibly going to get it soon (but it doesn't speak 'merican so it's struggling). There is about to be/already is a trial going on in the UK to judge its benefits in PMR and possibly GCA - I can't see any great benefit in GCA, most GCA patients tend not to have PMR morning stiffness and that is the primary advantage of Lodotra. It is anticipated that a lower dose may be possible, I haven't managed yet!
The BIG disadvantage is it is EXPENSIVE compared to common-or-garden pred: a tub of 30 pills costs about 27 euros, £25 thereabouts. That's near enough a euro per pill - and 2mg tabs and 1mg tabs cost the same so my 9mg daily dose costs 3 euros, £75 a month. You can't cut the pills because of the essential nature of the coating. But I like it - and have lost a shedload of weight since I went onto it. The other side effects of the Medrol have disappeared too.
Your exercise regime would probably obviated the need for AA anyway - the impact makes your bones bend a tiny bit and that stimulates bone formation. And all I can say is I know a load of PMR patients who would be bight green with envy! Most of us struggle to walk to the corner and back! Pre-PMR I went to the gym daily and skied 3 or 4 days a week in winter so I wasn't a couch potato either. I have got to the stage of managing 2km almost every day at a decent pace. Still not enough given where we live!
My experience is that many UK GPs simply don't do the reading they need to do - and are stuck at the level that they were taught at medical school. They are also very gullible about what they are told by reps. When they are sent the latest updates from, say, the rheumatologists, I know some just file them in File 13 - I've seen it done. So they are NOT using the latest knowledge. There is an excellent review of PMR diagnosis and treatment from the group in Bristol from last year. Do they want to know about it? Like heck...
Eileen
Wrong diagnosis. PMR is a sel-limited disease, generally lasting no more than two years if untreated. It may be the presentation of giant cell arteritis (sometimes known as temporal arteritis), which is a potentially morte serious condition......and more rarely, rheumatoid arthritis. Regardless, you've been on prednisone too long. Need to taper off it under supervision of a RHEUMATOLOGISTand see what remains. Then you can be diagnosed correctly (if symptoms remain). Good luck.
Hi VOC guy
Yes, you are right in saying that PMR is a self-limiting disease but I'm afraid I have to correct you when you say that someone can be "on prednisone too long" - unfortunately, we have to be on prednisolone for as long as it takes, and for some lucky people that can be just a couple of years but for others it can take much longer. PMR will go into remission when it wants to and not when we want it to - it took 5 1/2 years on steroids for my PMR to go into remission. In fact I actually had PMR for 6 1/2 years but because it remained undiagnosed and therefore untreated during the first year, I was put at high risk of contracting GCA......and unfortunately I succumbed!