PMR

Can't quite believe what is happening to me as now have to see a cardiologist.

I went to GP 2days ago to say wanted them to take me over and not private rheumatologist who I signed off with.

II was getting puffy under eyes (opthalmologist suggested) cholesterol and blood sugar levels should be taken plus my ESR and CRP had not been taken since the onset of PMR.

Told GP I had been getting rather breathless when walking and having eaten (put everything down to side effects of pred).

3 ECG and the treadmill stress test later I am heart attack material am on blood thinners and have had to cancel my 2 week spa relax long awaited holiday on Saturday and seeing private cardiologist tonight. My question is Has anyone had tightness and breathlessness on prednisilone? I am 11 weeks with PMR and on 12.5 mg which I take at night.

As you can imagine my muscles are not liking the stress!

Very fed up DJ

Hi DJ - I'm another heart patient! Not incipient heart attack but atrial fibrillation (a/f) which is common in our age group anyway and more common in patients with autoimmune diseases of various sorts. It's a long story and I'll tell it another time if it is relevant and/or you are interested!

However - I started what I now know were very mild symptoms of a/f after the PMR started and long before i was put on pred. The concensus here seemed to be that the a/f was almost certainly due to autoimmune damage to the bunch of cells that acts as the pacemaker to the heart so the electrical activity if messed up. It was seriously scary at the time and although I was fine and in control as long as I was in hospital (3 weeks here, no messing about until anticoagulants and all other tests sorted!) I found I was a quivering wreck once home - away from the security of a doctor when anything was strange I suppose. Now, 7 or 8 months on I feel great and the a/f doesn't bother me - it hadn't previously anyway - and everything else is sorting itself out too.

It WILL get better and being on anticoagulants is the first and really most important step. I posted on the other forum about this at the time - there were a few other similar cases who were dx'd with a/f and sent home on aspirin which isn't enough according to normal guidelines. I am also adamant that we need far better checking for cardiac problems when we have PMR - especially when we have any signs of GCA which I did - claudication and upper arm pain but the rheumy wasn't interested if I hadn't got a headache. I think I may be whistling in the wind there but it sounds as if you have a decent GP whose brain is in gear!

So yes - I had tightness and breathlessness at night (and more often in the day) but didn't recognise it as being a problem. But it WASN'T the pred - it was almost certainly the PMR and it is likely that in fact I have something more in the direction of GCA which is affecting the arteries in my chest. Not just me who thinks that - docs too.

Eileen

DJ

Oh dear, I'm not surprised you are feeling fed up.

I ended up in A&E with cardiac symptoms shortly after starting high dose Pred - my pulse was all over the place and an ECG confirmed irregular heartbeat.

As Eileen has said, GCA can affect chest arteries, so perhaps your cardiology appointment tonight will look into this possibility - an X-ray or ultrasound perhaps?

Lots of good luck wishes - we'll be thinking about you, and do come back and let us know how you get on.

Hi to MrsO and Eileen H and to any fellow sufferers.

I,ve been travelling a rocky road!

The outcome of the 3 abnormal ECG,s was the cardiologist put me on OMPREZOL , SIMVASTATIN, CLOPIDOGREL plus nitrate spray incase I had tightness in chest plus the pred.

I was to have an angiogram as fairly certain I was in for a heart attack and they would not entertain the idea it may be the PMR causing the heart to race.

3 days taking all these drugs I was a mess and 10pm had all signs of heart attack and had to call ambulance!

3 nights in Charing Cross hospital is enough to give anyone a heart attack, it is a dreadful place so don't go there, ever. Angiogram was finally done (privately in Hammersmith Hospital). NO surprise to hear there was nothing wrong with my heart and I have taken myself off all medication except the pred. Even though the cardiologist said I should stay on SIMVASTATIN as colestrol slightly high. Have not continued as one side effect is muscle pain and pins and needles which was really bad in hospital and which I have not had since stopping the tablet.

Cardiologist referred me to a gastroenterologist because of symptoms. Have had to agree as husband was very fed up with it all!!

I was put back up to 15mg pred when all this started (feb. 2nd) and am now down to 10 from 12.5mg.

Am writing this while on postponed holiday in Tenerife soaking up some vitamin D. All is well and swimming and walking although weight has gone up a bit.

Had real scare yesterday though as went up to 10,000 ft to see mount Teide and had terrible pain in throat stomach and back andfelt dizzy, if I hadn't had my angiogram I would have said I was having a heart attack.

Didn't dare tell husband but just breathed slowly and walked off alone and coped OK.

When back at approx 5,000 ft all started to ease.

Was this the PMR, . I wonder.

Sorry this is so long but wondered if altitude had affected anyone. I read another blog from a biker with PMR who seems to bike up mountains with no ill effect.

lucky compared to many as pain kept in check but wanted to worn others not to panic if you get breathless or heart races just realise PMR can do this to the body.

Best to everyone out there with this tedious condition.

DJ

Hello DJ

It's good to hear from you again but not so good to hear what a dramatic time you've been having. Thankfully it sounds as though you have finally had a more positive outcome. It does sound as though all your treatment was a little OTT although you did say that you'd previously had 3 "abnormal" ECGs. In what way were they "abnormal"? I ask because about 10 years ago, I had 3 ECGs over a period of time and they all showed an abnormal reading, due to supraventricular ectopic beats

I so sympathise with you as some 10 years ago I had a very similar experience when a blood test done in A&E led to me being admitted with a suspected heart attack. The first angiogram was cancelled at the 11th hour and I finally had it on the 16th day of my stay. This revealed no blockages and no damage so I was sent for a lung dye test and eventually discharged with a bit of paper saying that I might have had a pulmonary embolism but perhaps all the twice daily blood thinning injections over the 16 days had dispersed it. As well as the blood thinning injections, I had been put on daily BP meds, statins and aspirin, and I felt so poorly as a result. Within a couple of days of being discharged I had a near fainting experience and developed an irregular heartbeat. I eventually discovered that the blood test done in A&E that led to my admittance and all the unnecessary treatment was a false positive result!

It sounds as though you are doing very well with your steroid reductions but do try and go more slowly and reduce in much smaller amounts now that you're at 10mgs to avoid the risk of a flare and having to go back to 15mg yet again.

You have chosen the best time to have a holiday in the sun - it's absolutely freezing here, the coldest it's been this winter. We went for a walk this afternoon and the northeast wind was so unbearable that we turned around and came back after just 10 minutes. Enjoy the rest of your stay and come back well.

Hi - what a fun time you've had!!!! Think I prefer my version - took some time but the local medical team was overruled by the top cardiologist for the region. Mind - it was pretty obvious there was atrial fibrillation and they have got that right and controlled.

Well done for chucking the simvastatin - of all the statins it in particular is likely to cause muscle pain and is not recommended for anyone with PMR. Although I ended up in a state and a half on Lipitor (atorvastatin I think) and the cardiologist said fine.

Did you go up Teide with the cable car or by 4x4? I went by 4x4 and we got absolutely filthy but it was wonderful and I'd go again like a shot. OTOH - if you went by cable car you were way above 10,000ft. The top of the cable car is more like 12,000ft, 3,500m and that is HIGH! Even in my fit and healthy days and I was still skiing happily at about 2000m I struggled to walk up the slope at the top of the Dachstein glacier when we went up to have a look, it's about 3000m! Teenagers were crawling up to the lift! The change from sea level to even 2000m is hard work - I live at 850m and the first few ski trips at 2200m I take very slowly - as do all the locals. It's only tourists who expect their bodies to work the same!

The oxygen level up there is much lower - and I doubt anyone with PMR riding a bike would be doing so at 3500m. If it were me and I could do that I'd be querying the dx !

Keep a note of the effects PMR/pred has had on you - because you will face fights in the future from docs who will say "that doesn't happen...". I've just had one this morning from a locum - I'd swithered as to whether to go as the proper doctor who knows my history will be back from her maternity leave next week. Except I was scared it would get worse (my back that is) and I'd end up in hospital again like last time plus Claudia will have queues out of the door all next week from the people ringing this week to ask when she's back. Oh dear! You'd think that a) the hospital specialists saying "sorry, there isn't really a painkiller you can take safely..." meant that and b) someone with a 25 year chronic back problem knows about what to do/not do and when it's got too far for self-treatment. I got what I needed - but only after a rather stroppy "Can I have this or must I wait until next week?"

And why on earth don't they check abnormal bloods - treat yes, just in case, but check it was right and adjust! Plus - was it a troponin test that they panicked about? I'm sure I read somewhere that it can be high for other reasons, not just a heart attack - must have a look!

Eileen

Knew it!

"Increased troponin concentrations should not be used by themselves to diagnose or rule out a heart attack. A physical examination, clinical history and ECG are also important. Some people who have a heart attack will have a normal troponin concentration, and some people with an increased troponin concentrations have no obvious heart damage. Troponin levels may also be increased with short term or long term inflammation of the heart (myocarditis), congestive heart failure, severe infections, kidney disease, and [B]some chronic inflammatory conditions of muscles[B] and skin."

And what is PMR? A chronic inflammatory condition!

Eileen

Thanks for all replies, your knowledge and research is awesome!

I continue down my confused path, having seen the Gastroenterologist he seemed more knowledgable about PMR than the ruematologist and GP put together.

Firstly he said taking at night, although he understood why I had changed, was not allowing the Adrenal hormone to do its job. (put in simple terms).

So For the last 3 days I have taken 5 mg at bedtime and 5 mg. with breakfast. This is causing my calves to tingle badly when waking and although no pain I don't feel as good through the day as taking pm.

He also said there is no difference between the enteric coated and non coated, actually he said "it was piffle"!

He has booked me in for a gastroscopy as I am getting reflux (not acid) type symptoms in the oesophogus and blood taken for multitude of tests including ,Vitamin D which he said should have been done by rheumatologist.

I did play one set of tennis last week as felt so good after holiday, hot shower and lay down afterwards and felt OK. Not sure I feel so good to do it this week. He did say weight bearing exercise a must.

All for now and can't find if Troponin test was done and base of cable car 10,000 ft. which was not working due to ice high enough for me!

Hope everyone keeping warm and smiling.

DJ

Helloi Mrs O

Further to my posting yesterday, I have just re read another blog and see you have said exactly what I have been told.

To copy you said "our adrenal glands normally produce their natural cortisol (steroid) in the early hours of the morning"

I am now realising one must follow the best laid out rules regarding taking prednisone and take in the morning

Even though I don't feel nearly so good.

I have developed the moon face look to a certain degree, that In itself is depressing!

Still no pain as such so must be realistic, this is a long haul.

Have read all blogs re pred. reduction and am sticking to 10mg until feel really well.

Keep the info coming although I,m sure you feel you have repeated things so often, we new comers need to hear it all again!

DJ

Well - he may think it is piffle - and that is the official line. However, lots of people would disagree! Including a lot of GPs.

"I am now realising one must follow the best laid out rules regarding taking prednisone and take in the morning"

That ain't necessarily so" to quote a song from the shows! You need to take the pred at the point that provides YOU with the best control of symptoms. Most people do fairly well by waking at stupid o'clock, taking their pred with a biscuit or two or yoghurt and a drink and nodding off again before getting up a couple of hours later. However - do I understand you already have gastric symptoms? Did you have them before starting on pred? In that case you need to take the tablets with a proper meal, preferably in the middle to reduce the gastric effect.

The normal biggest release of cortisol is in the second half of the night, before waking, and then again another dollop just after waking. That is one thing and yes - by taking pred at night it will interfere with that. However, research has shown that the substances causing the inflammation in rheumatoid arthritis and very likely in PMR, cytokines, are released at about 4.30am. By taking the pred much earlier in the day the peak level at about 4am is increased and is ready and waiting to deal with that and the initiation of the inflammation is prevented. The result of the research showed 2am is the best time to take your pred to prevent morning stiffness - the later you take the pred in the morning the longer it will take for the stiffness to disappear. Some people have left it until 9am or even later and wonder why they can't do anything until the afternoon. Some rheumys who know what they are talking about, more often in the USA, suggest splitting the dose taking 2/3 in the morning and the rest before bed so it helps the morning stiffness - and I have seen that suggested in guidelines. The symptoms you mention in the evening are the pred effect beginning to wear off and the inflammation starting up again.

One certain fact that is often forgotten - or maybe not known by many doctors - is that PMR is NOT the same as other illnesses where pred is used. How a gastroenterologist uses it is very different from how a rheumy uses it. PMR, like most arthritises, manifests its worst effects in the mornings and that is a diagnostic factor. Your gastro chap is using it for inflammatory bowel disease most of the time, there is no difference between ordinary and enteric coated pred there, that has been shown in studies and, in fact, in some cases the effect is poorer as the enteric coated version is absorbed poorly if the part of the gut involved is damaged (enteric coated passes through the stomach and is absorbed much further down the gut).

As for staying at the 10mg dose - since it does sound as if the PMR is lurking that is a good idea to stay there as long as possible. In fact, the Bristol group recommend a reduction scheme where you remain on 10mg for a year before the next attempt at reduction - I can't remember if I have mentioned that to you before. The Bristol group, under Professor Kirwan, has been using that using ordinary pred taken in the morning for the last 5 years and have achieved a very good rate of relapse - only about a fifth of patients experience a relapse compared with 60% on other reduction plans. I can give you a reference for your GP to read if you like. They also find the Lodotra version of pred, already used for RA and taken at 10pm, is very promising.

As for keeping the info coming - keep asking the questions! Then we can tell you what we have found out/experienced for ourselves I must say - I do feel very privileged in the doctors I deal with where I live. My GP worked in rheumatology for years, the local head medical consultant has a special interest in PMR and GCA but I don't need him most of the time, and the other doctor is an anaesthetist working in the pain clinic who thinks a dose of 9mg/day is fine even for the long term. I cannot get lower without a recurrence of horrendous back muscle spasming and hip pain which needs pretty hefty injection techniques to resolve. I've have tried about 4 times now over the 3 1/2 years I've been taking pred with the same result every time. That's enough!

Eileen

Thank you Eileen for all this information and help. You have given me the confidence to go back to taking my 10mg. pred at 10pm. I will note down all changes as I do anyway in my daily diary.

Gastro chap is determined to do a gastroscopy to see if heart attack type symptoms were gut related. No symptoms before taking pred. so I know its this wretched but essential tablet which my body is reacting to.

Sounds as though you have had a really rough road, glad you are with people who understand.

Do you have a bone density done and do you think Vitamin D levels play a big part with PMR inflammation?

Thanks for your all your help.

DJ

Are you sure there were no symptoms before taking pred? Some of the symptoms I had with the atrial fibrillation last year could well have been mistaken for a heart attack but would also never have been identified inbetween episodes - to start with they lasted just a few minutes and I thought I'd just overdone it or something and when I asked the GP was told there was nothing to be found. I was always complimented on my BP, rarely anything other than 120/80, but when I had an echocardiogram last year I was told there was thickening of the ventricle wall which suggests I have had increased BP more than I haven't if you see what I mean. An echocardiogram done about the time the PMR started badly was normal - I'd had undiagnosed and untreated PMR mildly for about 5 years by then. Here they are satisfied the most likely underlying cause of the trouble is the PMR, or at least the underlying autoimmune disease which can and does lead to cardiovascular problems, especially when untreated.

I had a bone density done about 3 months after starting pred, apart from a couple of vertebrae which are osteopeneic (the intermediate state) and which is not unusual at our age, everything else was normal enough not to be of concern. The GP gave me alendronic acid on the "prevention is better than cure" grounds but I took it for about 5 weeks, hated it and another GP agreed with my feelings/research and said "don't bother until we know what the dexa scan looks like as it is now being associated with a lot of queries". David (GP) was sometimes a bit of a numpty but when he really put his brain in gear he was very good! Three and a half years after the first dexa I have had another here. Since they were done on different machines you can't make a direct comparison - but this one is, to all intents and purposes, identical to the first. The AA wasn't necessary but had I obeyed that first GP I'd have been on it for nearly 4 years already - the latest recommendations are it should not be used for more than 5 years at a time.

Low vitamin D is associated with many autoimmune diseases but it isn't know whether it is cause or effect. It is however often regarded as an antiinflammatory substance. When you are under investigation for PMR one of the things that is supposed to be looked at is vit D and rectified if it is low. And for real low vit D levels that means starting with a loading dose in the multiple thousands - not the 800 IU we get from our calcium supplements. That barely covers daily needs and won't replenish depleted levels this side of the next century! Low vit D CAN cause muscular aches and pains, it contributes to bone problems as well. MrsK who sometimes posts here actually had GCA originally and never had the typical PMR symptoms but developed muscle pain. The doctors were sure it was PMR but - as a result of looking at a lot of online research (mostly by me) she was insistent she should have a vit D test because she said it didn't fell like our descriptions of PMR. It was very low and her local rheumatology consultant, active with the PMR and GCA northeast group, gave her high dose dekristol to get it up to at least 80. Within days the pain improved. It returned some months later, a vit D test was done again and it had fallen considerably. That pattern has repeated so she is given vit D boosts ever 6 months or so (I can't remember the absolute figures but this isn't far out). It very much depends on the local hospital guidelines: the Gateshead Trust likes to see 44-148 as you can see from the extract below:

"Just an update on my Vit D since my last posting on 25 Oct.

Well after five days on the 40,000 units (taken twice daily at 20,000 per go),

on a scale of 1 to 10 relief 50% after ten days, 95%.

The reading was 20 - it should have been between 48 - 144 in our Hospital Trust Area.

I am now waiting on the result of the second blood test.

Can I say to all of you - ask for and take a Vit D test."

If you use the search function for this site or simply scroll back through the old threads you will find one called "Vitamin D" which is where the discussion can be found together with a pointer to another thread associated with it. It used to be only hospital consultants could prescribe it but now it depends on the local PCT - and above all on whether you have a doctor who takes the vit D story seriously. We come across doctors who hand out AA without looking at either calcium or vit D, both of which must be in good normal ranges before taking AA or it doesn't work (at best) or can make things worse. We have people with vit D well under 30 which is generally accepted as low whose doctors prevaricate - one has a level of 16 and the doctors pooh-poohed her request.

Rough road? Last year certainly was but it's all looking far better now. The PMR is still there though! Some day...

Eileen

Hi DJ

I'm a bit late replying to your post - please forgive me. However, Eileen has as usual given loads of helpful information and advice, so this is really just to touch on your Vit D and bone density query from my experience.

After reading much media reporting of Vit D deficiency in our part of the world and the experiences of others, plus knowing the risk to my muscles/joints of a deficiency, I requested a Vit D blood test last Spring, the results came back with a reading of 42, regarded as low but not yet as an actual deficiency. The normal range set out by Surrey PCT is between 75 and 200. It was decided that I would see out the summer to see if there was an improvement. Probably due to a very unsunny summer, rather than improve, it further deteriorated to 36.

I was advised to take a Vit D supplement of 2000iu daily for 3 months to get the levels up to within the recommended range, at the same time keeping a check on my calcium levels to ensure they stayed within the normal range. I'm now two-thirds of the way through the course and depending on the final blood test results, am expecting to be advised to continue taking a maintenance dose of around 800iu.

With regard to bone density, I did have a DEXA scan shortly after commencing high dose steroids, and all was well. Two years later there had been some reduction but still within the normal range. However, the latest one last year showed a further reduction had just tipped me over into the osteopenic range. I'm not sure that can be attributed to the steroids as I had then been on a very tiny dose for a long time, probably more connected to anno domini! I was never prescribed bone protection, such as the AA meds, whilst on steroids due to my GP thinking the Rheumatologist had prescribed it and vice versa! With hindsight, and knowing the problems that can be associated with such medication, I am quite glad of their confusion. Whilst on steroids, I ensured that I took in lots of dietary calcium and had a fast 20-30 minute walk each day (pain permitting) and still do.

I didn't take the PPI (Proton Pump Inhibitor) prescribed alongside the steroids to protect my stomach either - tried two different types....one upset my bowel and the other caused a weird pain in my side. I stuck with daily live yoghurt for stomach protection and a few squeezes of lemon juice in warm water at the start of the day - no further problems.

I hope those "heart attack type symptoms" to which you refer have resolved.

Hello again Eileen and Mrs O

I am now off the treadmill of medical tests and heart and stomach OK. The consultants have finally agreed my body must be highly sensative to drugs.

The only good thing about going to see gastroenterologist was he did very thorough blood tests, ESR 8, bone density scan etc.

My Vitamin D level was 37 so have been put on 20,000 units, one a week for 12 weeks. I bought a book on Amazon (The Vitamin D Cure by James E. Dowd ) for 0.1p all about vitamin D deficiency. Excellent book and as I need to try to keep weight in check with these steroids I have decided to try and follow a good vitamin D diet as laid out in the book.

Back to the PMR progress! I stupidly dropped from 10 to 7.5 (enteric coated so cant cut) as didn't have any 1mgs but I was feeling good. After 3 days pins and needles to backs of legs, lower back pain, so tired and am now back up to 9mg having seen GP for new prescription.

Have I learnt nothing from all you good advice about dropping slowly?? So stupid of me, I must be patient. I also played tennis while on 7.5 and think it was all too much.

Only been back on 9mg for 2 days ago and am still waking with bad pins and needles in calf muscles and legs feel weak. No pain just very uncomfortable.

Will the body take time to adjust.

DJ

Hi and glad to hear you are officially not entirely falling apart!

However good a "vit D diet" you follow you cannot get all the vit D you need from food - well, not without MASSIVE amounts of wild oily fish every day. Dowd is in the USA where milk, orange juice and a few other foods are fortified with vit D and it is possible to get a fair amount from diet. Food in the UK is not fortified any longer, except some cereals and margarine but that is only so it has the same amount as butter. The trouble with eating such large amounts of oily fish is 1) you are looking at half a pound a day at least which is a lot to eat and expensive (farmed is cheap but has far less vit D in it) and 2) it won't help your lipid profile (the fat present in your body) and although it is what might be called "good" fat it is still fat.

If you end up with stomach problems with "ordinary" white pred tablets - try a daily yoghurt to help your stomach - MrsO swears by it. You don't have to take the same dose every day by the way: to reduce more slowly using enteric coated tablets you could take 10/10/7.5/10/10/7.5, which works out at just over 9mg/day over 3 days, 10/7.5 on alternate days works out at just under 9mg, 10/7.5/7.5 repeated is the same as just over 8mg/day.

And when you are trying to reduce - clear the decks for a week or two, don't commit to doing anything you can't get out of if you need to and then start your reduction. Lots of people find the first 2 weeks or so difficult as their body adjusts to "less added pred". Pain that starts immediately and improves after a week or two is almost certainly pred withdrawal, pain that takes a few days to appear and then steadily gets worse over the next couple of weeks is much more likely to the PMR raising its head again as the inflammation starts up. But don't go and have a game of tennis until you have reduced and feel good after 3 or 4 weeks.

We know doctors tell patients to reduce ever few weeks - it might work, but if it doesn't then you miss the point at which you would have been fine and then end up having to increase above that level to control the symptoms again. It is plain unfair on your body to expect it to reduce its medication fix AND do something energetic! Below 10mg you are entering the realms of the amount your body makes anyway and if you then reduce below what your body needs the adrenal glands need to chip in too. They need a bit of time to wake up and get into business efficiently again - just like us when we have been on holiday ;-)

I have to say though - are you sure it is the PMR and not coincidence? What did your doctor say? If you have low back pain and pins and needles down your legs it could be a muscular problem in your lower back causing a pinched nerve. That can often be helped with appropriate physio - nothing heavy-duty though, not with PMR. Just a thought though.

If, on the other hand, the PMR started to get away from you, maybe 10mg would be more use than 9mg (amazing what a difference 1mg can make) just for a short time until the symptoms have improved and then start your revised reduction schedule.

Eileen