Is there any one out there who is using completely alternative therapies and not taking steroids. Would love to hear from you.I am finding it really hard to find out what others are trying as all seem to be on steroids.I am 57 and have had PMR for a year now and have been working with various alternative people.just wondered if any one had found a quick fix
Hello Kiwi.
I was diagnosed with PMR just over 9 day's ago and have been started on Steroid's, I must admit I don't like the idea of steroid's but since being on them I am not in all that pain, I can walk up the stairs instead of double stepping, I can get out of the chair and put pressure on my upper arms instead of crying out in pain, and I can get up in the Morning out of bed not like before when I was in so much pain even trying to move when I woke up, and it took me ages just to walk. some Morning I am still stiff though.
I have had some good days in the last nine days and other days I have had stiffness and in some pain especially down the back of legs groin area at the back, I do feel tired though but the Doctor said that can happen with PMR, I am a bit anaemic too.
It would be good to know if there is an alternative, I am on a learning curve with PMR, I wondered if a massage would be good for this? by a Therapist, I am just glad that I am not in that terrible pain anymore, and if I have to take Steriod's then I am resigned to that.
I saw the Doctor Thursday and he said it might be 2 Year's that I will be on Steroid's and he said he would like me to see a Rheumatologist.
Its early days for me and I have found this site so helpful, Mrs O, EileenH & Lizzie and so many others have been a great help to me and kindly replied to me, when I was in so much pain and feeling absoluty awful with pain.
Mrs O I have got my blue card now thank you for telling me about it.
Annie.
*absolutely* spelling ops.
Annie
KIWI
There are two or three people who post fairly regularly here who I know are trying to get through their PMR without steroids and I'm sure they will reply re their experience with alternative therapies when they see your post.
I have recently been in contact with someone who says she and her sister recovered from PMR by taking Evening Oil of Primrose and following the Hay Diet (no not what they feed horses!) which mainly believes in separating carbs from protein and adding different types of fruit to each meal to change the acidic environment of the body to an alkaline one.
I think it's probably more a case of trial - what might suit one person might not suit another!
I'm sure someone else will join in soon with some more advice for you.
ANNIE
So glad to hear you are still feeling improvement. One more little tip: I have always kept a diary of symptoms, appointments, blood test results and steroid doses on my computer - I have found it helpful to be able to produce it when either the rheumatologist or GP have queried anything.
Best wishes to you both.
MrsO
Annie. I do the same as Mrs O and keep a record on Excel. Its helped me figure out why I have good days and bad days sometimes. I have a 'notes' section (I am so boring sometimes!) where I put things like 'day in France' 'visit to the inlaws' and 'day out with Grandchild' and it wasn't long before I twigged that if I had a busy day I would probably suffer for it the next. Helps me plan. Really pleased to hear that the steroids are starting to help you get back to some sort of normality. As time goes on most of the aches will go away for most of the time (well they did in my case). It was instant relief, then a few days/weeks of intermittent pain then it became pretty good. I haven't tried anything alternative. I did have several sessions of acupuncture when I had dreadful eczema three or four years ago but I'm a bit nervous of rocking the boat with the PMR as its pretty stable just now, so have decided to stick with the regime I'm on which is gradually reducing the steroids, having regular blood tests and looking after myself.
Kiwi As Mrs O has said, I'm sure you will get good information on this site from those who are battling PMR without steroids. I wish you luck but I don't think any of us have found the secret to the 'quick fix' yet. Keep well and keep in touch.
Lizzie Ellen
Hi Kiwi!
In the 4 (or so) years before I was diagnosed with PMR I coped reasonably well without any drug treatment but I was never totally pain-free as no painkillers worked effectively and what I was able to do was quite limited. Life without a car was almost impossible and made both the pain and the tiredness far, far worse (it was being temporarily stopped from driving that made me realise how much I had adapted my lifestyle). I just didn't do things if I couldn't use the car and had to choose between exercise at the gym (mainly aqua aerobics, Pilates and yoga) or doing things in the house (er - the gym usually won as it helped get me mobile!).
In addition, every few months I would have a few Bowen technique treatments in combination with a couple of treatments from an osteopath (not a chiropractor, she ONLY did manipulation and ultrasound treatments of very inflamed spots) which kept me reasonably mobile and reduced the pain. I have seen chiropractors in the past who insisted I needed weekly treatments on an ongoing basis. The intermittent Bowen and osteopathy wasn't cheap but the chiropractic option would have cost about 5 times as much and they insisted on dietary supplements which were also expensive. I'm sure they would say that I didn't persist with it long enough to get any benefit but a friend had spent hundreds of pounds over a few years and her problem never seemed to get significantly better. Bowen technique stems from Australia originally and you'll find info about it and practitioners if you google it. It is basically \"manipulation\" of soft tissues (muscle and their attachments) and is now being adopted by many traditionally trained physiotherapists. The main objection people have against osteopathy doesn't apply - it's pretty difficult to damage anything with Bowen as the technique is very gentle massaging movements of the muscles to realign them in their correct positions. The results can be quite dramatic and you can feel pretty wiped out for a day or so as the muscles settle down again but I did get a lot of relief longer term.
Pilates and Iyengah yoga were also good for relief of the stiffness - especially done after an aqua class - and the effects lasted well between weekly classes. I was a member of a gym that offered all these classes included in the membership price - the cost if I had had to pay for them all individually would have been astronomical. I no longer live there and haven't found an all-inclusive option here in Italy and since we are now retired there is no way I can afford the indiviual way as those sort of classes are not only quite novel here but also seriously expensive when you do find them! The winter was fine - I find skiing is the perfect movement to get the shoulder and hip muscles moving but can anyone come up with a summer option? Walking would be nice but is still an exhausting exercise for me.
But I don't think there is any \"quick fix\" - other than steroids which don't cure, just make it livable with by reducing the inflammation.
good luck and keep us up to date with anything you do find,
Eileen
Hi Kiwi
I started PMR in November and steroids in January, but, like you, didn't want to and looked into alternatives first. I made a private appointment with a homeopathic doctor who is also an experienced GP. After making the appointment, I emailed him describing my condition etc and he kindly emailed me back saying that in his experience as an experienced homeopath, there is no alternative to steroids for PMR. He did himself out of business by saying this to me and I decided to go with the steroids especially as my GP (and this homeopath) described the dangers of possibly getting Giant Cell Arteritis as well if not on steroids. Also, you can get joint complications if you are immobilised for a length of time because of the PMR, whereas the steroids allow you to keep moving normally, which is clearly better in the long-term for your joints and muscles.
All the best
Beev
Great advice from you Beev - I am your typical example of someone who developed Giant Cell Arteritis because PMR wasn't diagnosed for over a year......until I got GCA! I was totally immobilised in bed for 3 months of that year, as you have also stated \"putting my joints at risk\".
MrsO
Hello fellow Kiwi
I have had PMR for 8 months and as I already had osteopenia (thinning bones) I felt really determined to find an alternative to steroids to help me out of my distress.
I started with cranial osteopathy, then herbalism, homeopathy, then Chinese medicine (acupuncture and herbs) but have been getting gradually worse all the time.
All this time I was relying on ibuprofen (just one 200 mg tablet every four hours) and a cocodamol at night and in the day if necessary. That meant I could get out of bed and kept me going, just about, until recently when my muscles got so weak I could hardly get out of a chair.
I also have massage once or twice a week, take high dose, very good quality omega 3 fish oils, vitamin D, evening primrose oil, glucosamine and tumeric. I don't know if any of these help. However, I do know that research shows that omega 3 fish oils do help reduce inflammation in general, that's the one thing I would suggest taking.
My rheumatologist has been very patient with me while I have been trying out these alternative options and rejecting his steroids. He says I am resistant but in a \"nice\" way.
Two days ago in total desperation I accepted a slow-release low-dose steroid injection, which should last for 3 months. Since then I have not had to take any painkillers but my stiffness has not got any better yet - still hoping. My consultant assured me that I will get no side effects with this one injection, but what I will do after that wears off I don't know. My CRP level had gone up to 150, and he was not keen for me to go on without medication.
I realise my story so far does not sound very optimistic for alternative methods, but I did hear on the Radio 4 'You and Yours' debate about alternative medicine, a man phone in and say that Chinese medicine had made his PMR better. (I tried to contact him via the program but they did not reply, I guess they get overwhelmed with listener emails.)
Do keep in touch, wishing you all the best, Enid
This is the post that I hoped not to be writing and I hope I do not discourage the others, like me, who would like to avoid steroids.
I stopped taking Pred. under supervision and at my request 0n 17th Jan. and there was an immediate lessening of the side effects. No more panic attacks, nausea, mood swings ( bad ones ) and improved sleeping.
The pain increased but was bearable, I thought. This went on for a couple of months.
There were three days when there did seem to be an improvement but then the symptoms returned with a vengeance and on 24th April I could bear it no longer and went back to 15mgs. Saw different GP on third day as normal man stranded somewhere exotic. She wants me to see rheumatologist just so I can be in the system in case of future necessity. This has never been suggested before as my usual GP was100% certain of diagnosis as am I in my non-medically qualified way. Typical pain, raised ESR and very rapid response to steroids.
This has again proved to be the case and I am virtually pain free and walk upstairs like a grown-up. Might revert, though, having read Eileen's thoughts on load bearing exercise!
For a couple of days I felt almost no reaction to the steroids apart from dramatic pain relief but now the old symptoms are returning. A couple of hours after taking the tablets I feel light-headed and weak. By early PM things improve and I swear that it is connected with having eaten ( toast mid morning, wholemeal bread and three different fruits for lunch. ) Dr. says he cannot account for that as my blood sugars are normal ( well, they are when he tests ).
The symptoms seem milder on the days when I do something physically demanding early in the day, maybe getting rid of some of the surplus cortisol ?? I did post on this topic a week or so ago but there were no responses so I guess this idea did not ring bells anywhere. It was this perpetually jazzed up feeling that made me keen to stop the steroids and reluctant to resume but then the pain was so bad that that alone was making me feel ill so the choice seemed to be ill and painful or ill and relatively comfortable.
I am making a big effort to remember to breathe properly, not to clench my teeth and keep my shoulders relaxed. Any other suggestions welcomed. I have this old fashioned convent educated idea that it is disgraceful to lose ones self control and have been advised to be kinder to myself but it's easier said than done.
Lizzie Ellen. Why did I not think of Excel.? I shall re-do my diary that I am going to keep this time round. Shuffling through all my considerable collection of blue cards to answer the new GP's questions decided me to improve my record keeping. I shall, of course, carry my blue card as usual.
I have been allowed to organise my own tapering regime and the experiences of posters to this forum will be a great source. I am wondering how long to continue on 15. In 1999 I was started on 30 for 4 weeks, 25 for 2, 15 for 10 days 12.5 for 2 weeks then 10, at which point pain returned so back to 12 and then 13 for 4 weeks after which I reduced without problems over several months and then more pain at 4.5 and took 6 months to reduce to 3. More stiffness at 1.75 ( had a pill chopper ). Back to 3 then 27 weeks to my final dose. Looking at this schedule after all this time I realise how slow it was. The figures for my second bout were not so patient and I think I have suffered for it.
Sorry this is a bit long winded.
Good night and sleep well all. Betty
enid
I know this is going to sound awful, but men do react and respond differently to women with pmr. No, there is no scientific viewpoint on it, but the more men I meet the more I see a distinct difference.
Whilst you are trying everything else and are getting less and less mobile, muscle wastage kicks in.
I was unable to walk for three months or even put the foot to the ground, whilst I recovered from a 'snapped tendon' operation. Luckily it worked, but my right leg muscles took a long time to get back into operation.
Then GCA struck another story.
Has your Rheumatologist referred you to the physio department for exercises?.
Visit www.pmr-gca-northeast.org.uk and under Useful Information read The Benefits of Exercise.
thank you Beeev, Annie-P Mrs O Lizzie Eileen H Enid Betty and others for responding to my post. I appreciate the time you have taken to respond.good to hear what others have tried and I have found similar things useful . I have had it for a year but have only had a diagnosis for 8 months. I have found 6 fish oil capsules a day useful and have had some adrenal support tablets full of vit herbs and minerals. tried all the alternatives including accupuncture and am managing it but just interested if any one had found a quick fix. really appreciate your responses.
Hi Betty!
Tough luck! Let's hope for a reduction in everything - except feeling better in some way!
I started originally on a programme of 15/10/5 mg/day with each dose for 2 weeks. At 10mg/day it was really great, at 5 I was reasonably OK, some pain in my feet again but livable with. I stopped and within 2 days was back to the original level of pain and exhaustion. I went back to 15 for a few weeks on the grounds it would take some time to reduce the inflammation again (although I had no raised inflammatory markers, CRP is also low) and have been reducing steadily to now 13.5mg/2 days. Below that the symptoms start to come back. In retrospect I think I could have gone down the upper levels quicker and now 13.5 is good, 13 is NOT, the pain builds over a few days and continues to get worse, not settle down.
Why not try 12.5 or 10 (depending on your tabs, no cutting enteric coated remember) and see if there is any pain and drop again if there isn't until you DO have some return of symptoms? In my experience as long as you go back up to the previous level at which you were comfortable fairly quickly you don't need to go any higher - does that make sense? Have you tried my alternate day version? That might give you at least alternate days where you feel better as we excrete the steroids within hours although the anti-inflammatory effect lasts for up to 48 hours - but I don't know how long the neurological effects last. If you could get to 15mg/2 days quite quickly that's halving the dose you're on at the moment, isn't it?
I don't remember seeing your post about feeling better on the days you'd done something but I'll have another look and think - and have you tried a less carbohydrate breakfast? Bacon and egg would be my choice - that would be a very simple way to reduce any possible blood sugar swings, the wholemeal toast isn't too bad (as long as it's really wholegrain but British isn't really and is finely ground, our stuff is the whole lumps, really takes time to digest!) but the fruit is not good for smoothing blood sugar jumps. I'll keep thinging but I need togo to the shops before they close!!!
cheers
Eileen
Thanks so much, Eileen. Much to consider and think about. I'll be back and keep you informed. Betty
Hi Betty!
Next thought: I assume your doctor does fasting blood sugar levels, does he? I need to go and see if I can find info about how steroids affect the way the body produces insulin - they do have an effect on carbohydrate metabolism and in some people puts them into a quasi-diabetic state, hence the need to monitor blood glucose. However, when I first worked in the labs in the NHS I remember there being something about how for some people a fasting BS was of little use except in frank diabetes and we used to do loads of glucose tolerance tests where the patient was given a measured amount of glucose (in the form of Lucozade) and the BS was measured at intervals over a few hours. The resulting graph was supposed to have a specific shape and divergences indicated if other tests were needed.
There is something which used to be called \"dumping syndrome\" where the body produces too much insulin in response to a carbohydrate meal and this results in a peak of glucose in the blood (from the meal, inducing the production of insulin) followed by a very rapid fall to lower than normal (because of the excess insulin) and then a slower recovery back to normal levels. This may be a cause of the craving for sweet things some people experience - and the result is a see-sawing of the blood sugar level if it is sugary sweets and/or cakes which will just cause a vicious cycle to become established. It's not normal - but only continuous monitoring (definitely) or samples taken every half hour (maybe) are likely to spot it.
In some people that is associated with feeling dizzy and sweaty - my mother always felt like that if she had to wait too long for a meal after the time at which she was used to eating. It was never investigated so it might have been a mental fixation on the concept of \"having\" to eat at a specific time or it's bad for you. But if you eat a meal that is protein-rich and carbs-poor there will be less of this high/low swing - if that is what is happening.
Exercise also has an effect on how our body metabolises food which might also account for how you feel better when you've exercised. There is also lots of evidence now to suggest that a lower carbs diet is helpful in weight reduction - not Dr Atkins's no carbs diet which is too extreme, but starting the day with bacon and egg rather than porridge for example and German doctors have said for quite some time that if you want to lose weight, the evening meal should have as little carbohydrate in it as possible - for example, lean meat and salad is ideal but very unlike the usual German bread-based evening meal. And of course, a diet like that was originally the only way of dealing with diabetes before insulin was developed as a medication.
So there you are Betty, more to digest 
The other thing is: my palpitations and sweats problems start at LOWER steroid doses, I felt full of beans at 15mg but not anxious etc as you describe, that must be really yucky,
EileenH
Thanks Lizzie and Mrs O that's a good idea keeping a record I am on a learning curve here.
I know my first ESP result as the Doctor told me it was 65 I don't know what is normal for the ESP result though is that high 65?, the CRP test was normal though and I have a bit of anaemia, so I have kept that on record now and the date I started on 20 mg's per day of the Steroid's.
Had a bad day today though is that normal? I have been on the Steroids 2 Weeks this Thursday, I was very stiff when I got up and had a bit of trouble walking but that improved as time went on Today.
I did ask about the red coated tablets, the Doctor said that they do not absorb so well in the stomach?, and he said he will start me on some acid medication for the stomach, and some calcium tablets and vitamin D tablets next Thursdaym when he wants to see me again, having a blood test before my Appointment on the 13th of May, I have now applied and paid for my exemption Certifiable as I still pay for Prescription's.
The Doctor said I was in the lower age group for PMR I am 58, but reading here there are People with this younger than me.
Annie
I came up as a guest on my Post above I forgot to put Annie-P, ops.
Hi AnnieP,
ESR normal levels are about up to 30-ish at our advanced ;-) ages! So yes - 65 is pretty high. Mine is 4! My CRP is also stubbornly normal. I too was told I'm too young for PMR at 57 after having it for about 5 years - I'll restrain my language for public consumption - and I am convinced the only reason it tends to be diagnosed predominantly in over 50s (by some over 60s) is because they're not looking for it and that it remains under-diagnosed in younger patients. We also tend to be atypical in the way we present, putting it down to the menopause, working hard and being older, looking after the grandchildren etc - and only the really severe cases are registered.
And yes - having the odd bad day is absolutely typical. What had you done the day before? What was the weather like? all sorts of things affect you the next day.
And guess what I was reading on Sunday on the internet - that's right, tablets versus pills and the evidence!
The enteric (red coated) tablets: yes they don't absorb as well from the stomach - that's because they are designed with the coating so that they are absorbed further down the gut supposedly to prevent the gastric complications. However - what the dr probably really meant to say (I'll allow him the benefit of the doubt) is that the enteric coated pills are absorbed more variably and it apparently takes longer for a stable level to be reached in the blood. The total amount absorbed is the same but instead of the blood level going up quite quickly and falling quickly, the rise is slower, it stabilises and then falls more slowly. In some diseases where steroids are used as the treatment this is a disadvantage and the effect is not so good - it all depends on you and your disease!
It is also said by some (in several studies) that there is no real evidence that using the enteric coated pills prevents gastric irritation because the development of the gastric ulcers is not due to mechanical irritation of the lining of the stomach but is an effect of the steroids being in your body (I suppose a bit like the effect of stress making you produce more acid and so doing the damage). The drug company makes lots more money out of the newer version of the pills - so they have a vested interest in drs prescribing them rather than the cheap as chips uncoated ones. The recommendation from health authorities (all over the world not just the NHS, in fact) is that the better option is anti-acid medication combined with the plain tablets because they are more evenly absorbed by the majority. I also noted that it is recommended that the enteric coated ones are taken on an empty stomach 2 hours before a meal to improve absorption - I don't and am doing fine with them but I'm just experimenting with some uncoated tablets to see if there is any difference - will report back later!
Remember - don't take your calcium and vitD tablets within a couple of hours before or after your steroid tablets as that will also affect how much you absorb. Nor should you mix antacids with most things! You'll need an Excel table to record the times at which each tablet is to be taken :roll: I have to agree with MrsO that yoghurt is a good thing though.
all the best,
EileenH
Hi again Annie
I think Eileen has said it all in her post to you.
However, do not worry too much about the anaemia as I also became a bit anaemic during my first year with undiagnosed PMR but once the inflammation subsided the anaemia problem resolved. Hopefully, this will be the case for you as well. In the meantime you could perhaps add to your diet foods known to contain iron such as spinach and watercress.
Very best wishes,
MrsO
Hi Elieen,
Thank you for your reply.
I will do what you said about the stomach Medicine etc when the Doctor starts me off on them next Thursday.
Yesterday I done a huge pile of ironing I don't mind doing it at all normally, then this PMR hit me for six, but it took me ages and ages I did slowly it might have been that?, I do seem to get tired lately, I am going to get a little light weight Hoover as my Dyson I can't hardly lift it its so heavy, shopping on line at the moment too, as I still feel a bit rough but its early days, I have had good days and some not so good, and its a learning curve, and not to over do it and listen to your body as suggested by Poster's on here, I have always been so active too, so I am going with the flow not over doing it at the moment, and to think positive too.
The Doctor said it will be about 2 Years of Steroid's, I don't like the idea of taking them, but I am all for taking them if I can get about and be free of pain, its a nasty thing this PMR a little devil, I had never heard of PMR before.
I am going to get the Honey Mrs O suggested, and I do have live yogurt and yakult first thing in the Morning, then I take my Steroid's with water then have the rest of my breakfast.
I will look for you report on the enteric coated tablets.
Thank you for your kind reply, this Site has helped me so much.
Best wishes
Annie