No Prednisolone

Bones, joints and muscles
1

Have been off the drug for six weeks under supervision after GP agreed my body had had enough of steroids. Felt really ill, quite apart from the PMR pain.

In myself feel much, much better but pain is severe in the morning,only relieved by a long, hot, massage shower. Walking is slow and painful; I walk upstairs like a toddler. Gradually improve and by supper-time pain level is tolerable.

What I want to ask is has anyone experience of beating PMR without steroids. I have read that it can be self limiting in 1-4 years!!!

This is my second bout. The first responded to a starting dose 0f 30mgs tapering to nil after 3 yearsbut with all the usual side effects. Second bout started on 15 mgs but response far less successful and much worse adverse effects.

2

Oh Betty I'm sorry to hear of the discomfort you are going through but I suppose it's good that your GP is experimenting by taking you off the steroids after so long. Have you had recent blood tests to see what the inflammatory markers are?

In answer to your question re PMR resolving without steroids, yes during my first year of very severe symptoms, I was bedbound for 3 months unable to move a muscle in my body and travelling to hospital by wheelchair and ambulance but the rheumy I was under failed to diagnose my condition. My inflammatory markers were off the screen (way over 100). I got by on Paracetamol and Ibuprofen for about 7 months but when I say \"got by\", I can remember being in agony from the jolts of the ambulance on the way to hospital. By the end of the year I felt I had completely recovered but on the change of blood pressure medication all the symptoms returned plus added head and jaw pain, sickness and rapid weight loss. A different rheumy diagnosed Giant Cell Arteritis and PMR and was of the opinion that the BP medication had possibly caused a flare up of the dormant PMR together with the linked condition of GCA. The BP medication widens the arteries to let the blood flow more easily in order to reduce the BP.........GCA is in the arteries!Again I had very high inflammatory markers. I was started on 40mgs Prednisolone daily and after 3 years am now down to 2mgs.

I'm sorry this is a bit of a long-winded answer to your question but you will see that yes it is possible for PMR to burn itself out without steroids but at terrible cost to quality of life. I now know that although I would far prefer not to be taking steroids with all their possible side effects, I am so thankful that they are available and that they gave me back my life.....not perfect but 100 times better than without them.

I'm sure another poster, MrsG, will be along to tell you of her experience, like you with a second bout.

I do wish you well and hope that your predicament will be resolved one way or another soon.

MrsO

3

Oh Betty I'm sorry to hear of the discomfort you are going through but I suppose it's good that your GP is experimenting by taking you off the steroids after so long. Have you had recent blood tests to see what the inflammatory markers are?

In answer to your question re PMR resolving without steroids, yes during my first year of very severe symptoms, I was bedbound for 3 months unable to move a muscle in my body and travelling to hospital by wheelchair and ambulance but the rheumy I was under failed to diagnose my condition. My inflammatory markers were off the screen (way over 100). I got by on Paracetamol and Ibuprofen for about 7 months but when I say \"got by\", I can remember being in agony from the jolts of the ambulance on the way to hospital. By the end of the year I felt I had completely recovered but on the change of blood pressure medication all the symptoms returned plus added head and jaw pain, sickness and rapid weight loss. A different rheumy diagnosed Giant Cell Arteritis and PMR and was of the opinion that the BP medication had possibly caused a flare up of the dormant PMR together with the linked condition of GCA. The BP medication widens the arteries to let the blood flow more easily in order to reduce the BP.........GCA is in the arteries!Again I had very high inflammatory markers. I was started on 40mgs Prednisolone daily and after 3 years am now down to 2mgs.

I'm sorry this is a bit of a long-winded answer to your question but you will see that yes it is possible for PMR to burn itself out without steroids but at terrible cost to quality of life. I now know that although I would far prefer not to be taking steroids with all their possible side effects, I am so thankful that they are available and that they gave me back my life.....not perfect but 100 times better than without them.

I'm sure another poster, MrsG, will be along to tell you of her experience, like you with a second bout.

I do wish you well and hope that your predicament will be resolved one way or another soon.

MrsO

4

Betty

There is an alternative to prednisolone it is called Methotextrate, but you need to see a Consultant Rheumatologist perhaps its worth exploring this with your GP?

If you can visit www.pmr-gca-northeast.org.uk and follow the link to the BSR Guidelines for PMR issued June 2009.

I was told of one person who took to her bed for one year and it burned itself out.

5

Hello Betty Sorry to hear you have had 2nd bout of PMR like I have ( the only other person on here I did feel very odd having it twice ) !!

My first bout I started on 20mg and was free of it after 2 years and had 3 years being \"normal \" and back it came Again I was put on 20mg and after a year I was on 4mg but since Xmas a complete flare up and back on 15mg but blood results good yesterday My Doctor was very happy to give me a Rheumatology referral after the flare up but as she is so good I am sticking with her

I have been lucky ( so far ) not to have side effects from the steroids so am OK Can you get by with Ibrofen ( I cant take it ) and Paracetamol in the mornings ?? to get you moving We all know it is supposed to burn out in the majority of people within 1 to 3/4 years but none of us wants to take to our beds for all that time

Have you seen a Rheumatologist I would have thought you should have done if the Dr cant control the pain and also what are your bloods doing ??

Having seen what has happened to others who havent had the steroids with GCA it really needs careful control The other thing is how slowly did you come off the steroids Could this be part of the problem if it was too fast

Im afraid I cant help with any knowledge of people who have managed without steroids as most people give in and take them in the end (obviously if that gives you side effects you cant ) and the only other drug I have heard of is Methotrixate also some people seem to be having steroid injections periodically but this is all Rheumatologist level not your DR

I hope you feel better soon and sorry I cant be much help Mrs G

6

Many thanks for all your replies. I still have L plates as far as forums go so please forgive if I am not getting it right.

I am very unwilling to embark on any drug treatment whatsoever. In my family if there is an adverse reaction, we will have it. Wasp stings, bee stings, hay fever injection (full-blown anaphilactic shock, my sister, not me ) ibuprophen ( another sister ) bisphosphonates penicillin ( me ) I try not to be paranoid!

The thought of bed for a year SOUNDS blissful but not for me. I have always been very active and try to remain so. Although it can be very painful, exercise IS a tremendous help. Came back from country market shopping today in great discomfort but after an afternoon rest was able to cook and attend to my poor greenhouse and am now quite comfortable.

Have not asked to be referred to rheumatologist as I know more drugs would be offered and if you are not prepared to take advice I feel you should not take up appointment times.

I watch closely for GCA symptoms. A friend in his fifties was diagnosed eventually ( wrong age, wrong gender ) so have an experienced reference. He was prescribed 60mgs and took eleven years to taper off but no recurrences and no adverse side effects. Some people have all the luck. I think my tapering times have been quite conservative. mg a month. My most recent ESR was 30

Thank you all again and I wish you all a pain-free life ni the near future

7

Hi BettyE!

I have posted a fairly detailed description of my experiences getting diagnosed so I won't go into that again. However - I had had the PMR for at least 4 to 5 years before it finally got a name. When it first became apparent I was a member at a ladies gym and was participating in a fair number of classes including aerobics. I hate the gym as such (SOOOOO boring!) but I did use it fairly regularly. When I realised I was becoming less and less able to do the classes and the ones I could do started to disappear I changed gyms to one with a pool which was reasonably warm and which had a lot of aqua aerobic classes. I used the gym a bit for the things that I could do but relied on the aqua for real exercise.

Looking back on it, I definitely had better days in terms of pain when the aqua class was first thing in the morning - I enjoyed meeting the new friends I made there so there was an incentive to get out of bed despite the agony I experienced doing so. At that stage if I didn't get dressed within 10 minutes of being out of bed I was going to struggle - lassooing my foot to get my knickers on sort of struggle!! Having a hot shower helped - except I had to get dried, by which time I was back to square one. So I got into a swimsuit and easy clothes very quickly and drove to the gym, showered there and did the class. After the class I could move so much more easily. Right from the start I also did Pilates with a superb teacher who had trained in rehab. Eventually I was up to daily aqua classes, Pilates twice a week and an Iyengar yoga class which was immediately after an aqua class and even at the level I was able to do was amazing. Some days were better than others. Sometimes after the classes I was so tired I couldn't do anything else - but I just learned to ignore the dust. After a while you will note that the layer doesn't get any worse - dust is very patient, it will always wait!

In addition, I had, for years, been indulging in visits to a Bowen practitioner which I think kept me at a liveable-with level of shoulder/back/hip pain. Bowen technique works on soft tissue and the muscle attachments to the bones. It is very gentle and carries none of the risks of \"bone manipulation\" but basically returns muscles to where they are meant to be (best way I can describe it, Google it). An hour of that left me feeling as if I'd had a good massage. I went for one or two treatments every few months - I couldn't afford to go more often but that was a great help, I'm sure. Occasionally I went to an osteopath and the combination helped too. I have spent a lot of money over the years - but there weren't any undesireable side-effects! I'm lucky, I can use ibuprofen and did so, if necessary, to be able to get out of bed to start the physical therapy.

A year last Christmas, we were expecting to move here to Italy within a few months so I stopped my gym membership, thinking I would be spending most of the winter here skiing. The best laid plans, and all that, but I had a TGA (transient global amnesia) and was stopped from driving at the same time as moving from a house with a toilet upstairs and downstairs to one with one upstairs only. Whether the stress of the TGA contributed (not that I knew anything about it! Far worse for my husband) within days I was worse than I had ever been. Nothing worked without hurting! Stairs - oh my God! Again, Bowen helped some.

In early March I took the bus from the northeast to London. the plane to Innsbruck and the train to here! Alone! I thought I was dying by the time I got here. It was snowing even in the valley and for 3 or 4 days I stayed in and slept and rested. No stairs! Bliss! Then I managed to get up the mountain to ski. It was hard work getting there - a 5 min walk to get the skibus. I stored my skis and boots at the lift and for nearly 2 weeks went up almost every day for an hour skiing followed by a bit of sunbathing. The action of skiing is fantastic mobilisation for my

8

Betty - Just a thought, you say your latest ESR was 30 but you did not mention having had a CRP blood test. A lot of medics are now looking on this test as the more important one as an indicator of inflammation. I have always been tested for both during my 3-4 years of PMR/GCA.

I have found that a strict diet containing anti-inflammatory foods has helped me with relief of pain. Oily fish 3-4 times a week and daily beetroot, pineapple, garlic, olive oil, amongst others.

As you have been taken off the steroids I am wondering if Evening Oil of Primrose might help. I have heard of a couple of sisters who when diagnosed with PMR refused to take the steroids, did some research and started taking this oil. They both recovered from PMR! I intend to give it a try when and if I come off the steroids, hopefully some time this year as I am now down to 2mgs. However, perhaps there is someone who may post and say they were taking Evening Primrose Oil before being diagnosed with PMR! But, even so, everyone is so different and I just thought that as you have been taken off the steroids and do not wish to take Methotrexate, that the above would be an option for you. Good luck and do let us know how you get on.

MrsO

9

\"No Steroids\" update.

Mrs. O, you said to let you know how I get on so here is my latest.

Now have been without steroids for two months.

Thank you everyone for all your responses.

TENS I find of some but limited use as the pain is so widespread and also moves around. When I broke a small bone in my foot, though, it was very helpful. The idea of early morning electric blanket was inspirational. If I get really, really toasted before attempting to get up it is a big help.

Straightening my legs on waking is the most painful part of the day ( or bending them if I have slept \"straight\".) Actually, this persists all day and I try to keep moving but there are limits. I have found that it helps to vigorously massage my knees, front and back, before getting out of my chair or bed or the car but I still have to give them time to do as they are told! I grab any available trolley at the supermarket if we have to park far from the door. Having a \"pram\" is a big help and I now bless, instead of condemn,those who abandon their trolleys far from the trolley-park.

The quite severe pain in my neck has all but gone which is a big plus. Shoulders still need careful consideration and I continue to sleep on my back ( Not a problem. ) Back can sometimes be painful but does respond to rest. Still go up and downstairs like a toddler.

There do not seem to be any adverse effects if I make an especially demanding effort, eg vacuuming, gardening, changing bed covers. It hurts at the time but, if anything, pays dividends later.

Although I still get times when I need to rest or even sleep during the day, I feel generally ok and intend to persist with the no steroids regime unless there are any extreme events.

As Eileen H has said, some of us are at the A and F ends of the Normal curve which is doubtless a great inconvenience to the professionals but as this was one of the very first considerations when I trained as a nursery and infants teacher many years ago should not be beyond their comprehension.

Will report again in a couple of weeks though will doubtless feel the urge to jump on someone else's bandwagon before then.

Best wishes to all and keep warm.

10

Dear Betty, Thanks for keeoing us all up to date. I am well down the steroid road now but it is still interesting to know how you are getting on. One thing that strikes me immediately is that I certainly get confused as to what is causing my aches and pains, PMR, steroids, other medication e.g. alendronic acid lists muscular aches as a side effect, steroid withdrawal, doing too much, doing too little, \"old age\", or just one of those off days for no obvious reason! You do seem to, mostly, be much clearer! And I wonder whether that makes you feel a little more in control of it all?

And, even on steroids, I sometimes have to crawl upstairs on my hands and knees!

So all the best - I hope it works out for you, Green granny

11

Hello Eileen and thank you for a very comprehensive explanation of your current experience \"sans steroids\"! It is wonderful to hear that your pain levels and quality of life are enabling you to manage without steroids and I think you can consider yourself one of the lucky ones. In fact, there seem to be a few people posting of late who are in a similar position to you and it does add another dimension to this forum. It is enabling us to learn even more about not only PMR/GCA but also the different effects of steroid and non-steroid treatment. May you continue to make good progress.

MrsO

12

Betty - so sorry that last message should have been addressed to you and not to Eileen - perhaps it's time to go and lie down in a darkened room!!!

MrsO

13

Hallo Green Granny and Mrs.O

Thank you for your responses. I was interested in GG's ref. to alendronic acid. When second PMR bout began these were prescribed in place of the Cacit. ( Calcium and Vit. D ) which I had first time around. They had caused no problems except inconvenience of finding a patch in the day when I was willing to fast 2hrs before and 2 after taking it. Finally setlled on bed-time. Alendronic acid was an altogether different experience. OK for six weeks ( one dose a week ) then suddenly numb lips and wheezing. Went to GP who prescribed penicillin as he thought the wheezing lungs indicated infection. ( I've never had a chest infection or even a cough in my life ) On the morning after taking the fifth pen. woke to find what looked like chickenpox spots. Knew this was bad news on steroids but also knew I'd had CP as a child but was unsure if it could recurr. Saturday, so saw out of hours Dr. who was very sympathetic and, I sensed, a bit worried. He referred me to MAU at local hospital who were also very kind and sympathetic. Did I feel ill? No, just itchy. Spent the afternoon there and was a source of much interest. Moral: have something not run of the mill! By now the rash was just about everywhere and I really don't think that they believed that I was not feeling ill. They wanted me to stay overnight and have steroids boosted back to 15 ( I was currently on 7, I think ) I pleaded to be allowed home and promised to obey instructions re Pred. dose as I had animals to feed and greenhouses to water!! I was given instructions how to get re-admitted in a huury if neccessary but all was well.My notes are now marked forbidding Penicillin and Alendronic acid. Whether it was one or the other or a combination that re-acted I do not know. No complications of any kind ensued but the rash took nearly a month to clear.

Interestingly, a friend who was pescribed Al. Acid after a radius fracture and who demurred after my experience, was denied a bone scan ( not by GP but presumably local PCT ) to see if the bone boost was really necessary as she was over 65 so deemed an open and shut case. She still refused and had the great satisfaction of hearing the fracture clinic consultant say that the outcome \"is far better than we expected\".

Sorry about the long spiel but it does illustrate that we really do all respond individually and are not necessarily defined by gender and age alone.

Mrs. O I certainly do consider myself lucky to be able to manage without steroids at least for the time being. I'm going to keep a detailed time-line diary and see what sort of pain pattern, if any, emerges. Betty

14

Hello Betty on a sunny morning which makes me feel energetic, so will need to try and not do too much sadly.

Re Alendronic acid. When I had to go back up to 15 mg. again I was getting really bad indigestion and wasn't sure whether it was the Pred or AA. I asked my doctor if there was any alternative and was told clearly \"No\". And he actually added on Calci Chews to my prescription. In my case too it was implied I didn't need a Dexa scan, clearly on the road to osteoporosis as I am 73. Well I don't want that , my mother had it and used to say, poor woman, \"I feel as if my back's broken\". We all said of course not but I guess it was.

I actually felt the Calci chews were adding to my gastric problems so I have stopped them for the time being. I was also taking various supplements (Omega 3 and 6, turmeric, etc) and thought if I eliminated everything except what I had to take i.e. pred and AA I could then try and see what was causing the indigestion, which at times really did feel like a heart attack. I know if one starts to look at the possible side effects of any medication it has this psychological effect and you immediately feel you've got whatever!! BUT.......

My husband is at the moment on 7 medications (cardiac) and my son aged 31 was not sleeping because he was worrying about his PhD and job prospects, in each case they have finished up taking other pills to cope with the side effects. I guess we expect a bit too much from the medical profession but it doesn't surprise me that complementary, or alternative, medecine is attractive!

Do keep in touch, I wish I had known a little more about PMR, steroids etc when was first diagnosed! Knowledge is power as they say, Green granny

PS Anyone else on Calci chews?

15

Hi Green Granny,

I am also on Calcichew with no apparent side effects. I was taking it combined with A Acid for 2 years. The second year scan showed a huge improvement in the bone quality but as I was cutting back on the steroids (ie below 7mg) I asked the GP could I reduce the number of pills! We agreed that I would drop the AA for the moment but continue the Calcichew. In terms of AA my rheumatolgist was insistent that it should be taken in the morning and not to eat or drink within a 1 hour period. Also she said it was v important to stay upright and not lie down as this could cause inflamation of the digestive system. I am now having to add Alopurinol to deal with kidney problems- just when I thought I was cutting the pills down! Hey ho...

16

Hi Green Granny!

I'm on Calcichew too at the moment - I had AdCal first of all, then a few weeks of some Italian ones when I ran out (nice - Pernod or lemon flavoured!) and the last prescription was for Calcichew. I was on AA to start with but the GP stopped them as he said there were some queries about it (there have been cases of necrotic jaw syndrome and something else nasty associated with its use but it's claimed it's more likely in association with high doses in cancer) and said to just continue with the Ca/Vit D and see how I got on. Just had a look online and calcium tablets shouldn't do anything except maybe cause constipation, if you have wind-type problems it's more likely to be too much calcium!

I'm not impressed by the idea of not having had a Dexa scan as it's the only way to monitor the progression of the bone density whether it's going up or down. There should at least be a basis reading before starting treatment with steroids. What seems more of a concern is I see that you shouldn't take AA if you have low blood calcium or vit D levels - mine were low, so obviously I needed supplements, but I never had them checked again, so the question remains: was I not eating enough or was I not absorbing it from the gut? PMR is often associated with low blood levels of calcium and vit D - is that part of the autoimmune aspect of the disease? At least I'm not taking the AA any more and I have plenty of weight-bearing exercise. My Dexa scan was absolutely normal last August - wonder if it still is.

The other thing about AA is it persists in the body for at least 10 years and (I think) continues having its effect - how much do they know about that - and it also appears to be unclear whether it does help prevent fractures in steroid-induced osteoporosis as the mechanism is different from post-menopausal osteoporosis.

I also noted that you shouldn't take the calcium supplement at the same time as other drugs, there should be a 2 hour gap. You're supposed to take it morning and evening, it's better not on an empty stomach, so you need to take one at breakfast - but you've also got to take the steroids then, which also need to be taken with food to avoid stomach problems (especially if, as I do at present, you need to use 1mg tabs which don't come enteric coated). I've noticed a big difference in gastric (dis)comfort since I started taking the 1mg tabs even though it is such a small amount. I wouldn't say I had indigestion - but it feels different. I had no bother at all with the enteric coated ones. How on earth are you meant to manage it - other than eating more often, and I've enough of a weight problem without doing that!

Brain strain!

E

17

Hello Green Granny

As if we don't have enough of a dilemma just dealing with PMR and steroids, let alone the added supposedly protective medication.

I remember my bad experience of bowel problems with what were supposed to be two different stomach protection tablets when first prescribed Prednisolone. My rheumatologist told me not to take them, and I said I was worried about having a 'burnt out stomach' from the steroids to which he replied that he'd never seen a case of that yet! Instead I have taken a daily live organic fat-free yoghurt immediately before the steroid dose, plus the added milk on my muesli. Have you tried the yoghurt as I'm sure it would help with the indigestion?

I was never offered calcium supplements and as I had never had a DEXA scan and being aware of the steroid risk of osteoporisis, I asked for one at the outset of Prednisolone treatment. I was refused by both the rheumatologist and the GP, who said I didn't need one and that in any case there was a 9-month waiting list. The only alternative was for me to pay for the scan. The results were normal. However, two and a half years down the line of steroids, I dared to suggest another scan and this time the rheumatologist happily arranged it! This time the results were normal hips but osteopeania of the spine (the stage before osteoporisis). When I mentioned to the radiologist that I had never been given calcium supplements but that I had only one kidney which was showing up a lower than normal reading, she confirmed what I'd already read that if anyone had any kidney problems they should not be prescribed calcium supplements. So, I just do as much weight-bearing exercise as I can, ie daily walking, Tai Chi and now a new exercise class called \"Extend\", and nurture the hope that I may at some time soon have a future without the steroid risk. What I don't know, and maybe someone out there does, is whether the risk to the bones is negligible when on the very low doses.

Do hope this helps.

MrsO

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18

Hello again Greens and it was lovely to meet you in London last Thursday - I do hope you had a good, even if very long, journey home.

Just to say that I'm sorry to hear to hear you have developed kidney problems. Although I'm not aware of your particular problem, I just wanted to ensure you were aware of the risks of calcium supplements to anyone with reduced kidney function, as outlined in my reply to Green Granny..

Best wishes and take care.

MrsO

19

Hi Mrs O,

Yes, had a v good trip back but PMR has been playing up a bit since I got back! It was good to have a chance to meet up in London.Thanks for the comments about Calcichew- I will raise it with the GP when I see him. I think my kidney problems are fairly mild but to be honest I am not sure when it was first diagnosed and whether it ties in with the start of Calcichew.- Greens

20

Thanks MrsO, it was there at the back of my mind that there was maybe a problem with calcium supplementation and kidneys but I wasn't sure enough to mention it without looking it up first.

In my reading I saw info that the main bone density loss is in the first few months of treatment, slowing later, and that once the dose is down to \"physiological\" levels rather than the \"pharmacological\" doses we start on the bone loss slows to a stop. I'm counting on that as I've stopped the alendronic acid on the dr's recommendation and I really didn't like it at all. Mind you, no doubt, there is a variety of opinions on that like everything else!

I remember you saying about the alleged wait for a dexa scan - I was told it was 3 or 4 months at least in the NE where I was living at the time. Interestingly, I knew better: it was my husband's department that did them and he told me they'd NEVER had that long a wait and would have been in serious trouble if it had been - our sort (prior to steroid treatment) would have been done within a few weeks.

Interestingly, too, despite support from all the departments who needed dexas done, his business plan for its replacement (due to its advanced age) was turned down by the powers that were. At the time the GPs were being told the \"preferred supplier\" of the scans was a company with a certain ex-Health minister featuring amongst its board!!

Eileen