PMR without steroids??

Bones, joints and muscles
1

Hello,

Has anyone managed to control or improve PMR using alternative methods (diet/supplements etc)?

I have just been diagnosed with PMR. I'm 78 and already have osteoporosis so I really, really do not want to take steroids.

I have had my diagnosis for 4 weeks and and have just taken ibruprofen so far.

I totally understand that the vast majority of people need and take steroids, and are grateful for the benefits, but I'm just wondering if there are any oddities like me out there? My whole life I have tried to ward off problems with a healthy diet and avoid taking drugs.

My consultant has explained that I would need to take bone-protective and tummy-protective drugs along with the steroids.

Many thanks, Enid

2

Hi Enid,

I have just been diagnosed with PMR; having the blood test this week - if snow allows - and have been told I will be prescribed steroids if the initial diagnosis is conformed.

At the moment I am taking over-the-counter Ibuprofen which does take the edge off the pain but I am still struggling although I have good days and bad days. I am still working and have to keep going.

I am overweight and taking medication for osteoporosis. I do not want to take steroids which will exacerbate a weight problem and osteoporosis but I have to acknowledge that to continue to work and run a house, I am going to have to find a means of surviving this.

Like you, I am desperate to find a stronger pain killer which will help although I am mindful of Mrs O's caveat about being more likely to develop GCA.

I am looking for information on an anti-inflammation diet - the books on Amazon all seem to be American and would prefer a UK author if possible - and am pursuing another route towards this.

None of this is of much use to you except to show you that you are not alone.

My feeling is that most have to succumb to steroids of necessity and simply to regain their lives.

Please share if you find an answer.

Tilly

3

Hello Tilly and Enid, Good luck with trying to find alternatives to steroids! I guess a lot of PMR sufferers are concerned with trying to do everything they can to help their general health even if they are on steroids. As regards stronger painkillers:- prednisolone doesn't mix with ibuprofen, which of course is now over the counter, so paracetamol is generally suggested. I complained to my Dr that it didn't do much and he suggested co-codamol which is stronger but also a bit addictive. It certainly works for me though.

Diet wise, I've looked up on the internet but so often somebody is trying to sell you something, or one gets the feeling \"this sounds a bit weird. Is there really any science behind it?\" One book I've found generally useful for a long time is The Food Bible, by Judith Wills, it was published 10 years ago tho' so I don't know whether it is still around. She talks about an Anti Arthritis diet but I'm sure that's also anti-inflammatory.

Main points, avoid nightshade family (potatoes, tomatoes, aubergines and peppers),foods high in saturated fats, coffee and alcohol (Oh dear).

Choose foods high in fish oils, Vit A and E , selenium. Particularly good as anti-inflammatory are ginger, garlic and apples. Lots of people on this site would add things like yoghourt, turmeric etc but some of these are to do with the side effects of steroids. It is assumed in the Food Bible that you are on a pretty healthy diet anyway - cutting down on convenience foods, salt, fat and sugar, and going for your 5 (at least) fruit and veg a day. I hope you can manage to get your doctors on your side if you are trying to avoid steroids. Reacting well to steroids is often seen as the main test as to whether you have PMR or not! Keep warm - and well as much as possible, Green granny

4

Hello Enid and welcome although I'm sorry to hear of yet another PMR sufferer.

I do so sympathise with your statement that throughout life you have eaten a healthy diet and avoided taking drugs. You're certainly not an \"oddity\" That describes me to a T. I was so horrified to be prescribed 40mgs of steroid that I immediately asked the GP if I could just take half that amount!

As to controlling PMR without resorting to steroids, there are one or two people who post on this site who seem able to get by on strong painkillers alone and if they aresuffering from low grade PMR, are able to keep their inflammation and pain under control and lead a near normal/normal life by this method, then that is wonderful, however, bearing in mind that strong painkillers also have their side effects. I feel that one of the most important things to bear in mind is 'quality of life'. Certainly, in my case, steroids and a very attentive rheumatologist have given me back my quality of life .

I agree with Green Granny's list of anti-inflammatory foods. One of my mainstays is oily fish which I eat 3-4 times a week and I know from experience that it has helped to reduce my symptoms. Turmeric is highly anti-inflammatory and since hearing that the pharmaceutical companies were investigating ways of manufacturing it into an anti-inflammatory drug, we have added it to all our casseroles, risottos, etc (also acts as a nice warming spice in this freezing weather).

I wish you all the best in making the right choice for you and may your PMR be short-lived.

MrsO

5

Hello Green Granny,

Thank you.

Something rang a bell when you mentioned Judith Wills. I searched my bookshelves and found The Food Bible and one of her cookbooks so I am delighted and will have a good read.

Potatoes don't bother me but I love tomatoes and peppers and adore aubergine! I don't want to talk about red wine trigger. LOL.

That will be a gritted teeth exercise although I am coming to terms with alcohol being contra-indicated with many of the medications likely to be prescribed.

My lunch of mushrooms on toast will have a sprinkling of turmeric! It is a start!

Tilly

6

Hi Enid

I understand your dilemma with taking drugs which is very similar to mine. I can't comment on the alternative food diet but I have had a brief insight into the difference between steroids and Ibuprufen for controlling the symptoms of PMR recently and unfortunately there is no comparison which is why most sufferers are on the steroids. Ibuprufen does no more than take the edge of the symptoms and make them more tolerable, whereas steroids in the right doses can give you your life back and make you feel really well again. I am no expert but in terms of quality of life unfortunately its steroids every time.

I am sure some of our more experienced members will comment further.

Bob

7

Bob

When first diagnosed by GP and then Consultant Rheumatologist they both told me, in no incertain terms. No NSAID's with steroids. This included creams and gels.

I checked this out with my then Chemist and re-affirmed the situation and she also told me that she would check any new drug the GP described for compatibility with steroids. Twice drugs prescribed for other complaints, have been changed after the chemist talked to my GP.

Since then, a new chemist has been appointed, much younger than the last one and he is just the same. No NSAIDS with steroids. Maybe when I get down to a low dose they will change there minds.

They also advised that I check with any alternative medicines that I might want to take, and I must admit my homeopathic shop checks as well.

Chemists know more about drugs that any other members of the medical profession.

Bob this might help also.

Title: BURDEN OF POLYMYALGIA RHEUMATICA

Authors:

Bhaskar Dasgupta

Hilal Maradit-Kremers

Eric Mattesson

\"Nonsteroidal anti-inflammatory agents are virtually of no value for management of polymyalgia rheumatica and are associated with considerable drug related morbidity\" 42.

Worth a read - whole 28 pages on www.pmr-gca-northeast.co.uk

8

Thank you all for your replies.

I have ordered tumeric supplements (a herbalist friend said most effective if in oil capsules) and a book that a PMR-GCA north east support group member suggested called Acid Alkaline Diet for Optimum Health by Christopher Vasey (who is Swiss, not American!).

I would have to disagree with the quote about NSAIDs, for me they are essential at the moment - I could not get out of bed without them.

I am also taking 2000 IU of vitamin D, a magnesium-calcium powder that you dissolve in water and really good quality fish oil capsules.

Once again, many thanks, and I'd be interested to hear anyone's experiences in the future on this.

Very best wishes, Enid

9

Hello again Enid - I do wish you luck on your alternative method to steroids and would be most interested to hear how you progress. At least the Vitamin D should make up for all that lack of sunshine we have been suffering from for the last few of months.......I'm even wondering about investing in a sun lamp!

Do keep in touch with this site.

MrsO

10

Enid

Whilst I agree it is your right to disagree with the quote on NSAIDS. The paper was written by three of the world leading experts on PMR and GCA.

I would not have posted that quote if it had not been backed up with medical research.

I am pleased that you are able to gain relief without taking steroids and look forward to hearing how you progress.

11

I was just joining in as today I found a Tumeric supplement in Holland and Barrett (half price at present ) and thought I would give it a try I have had to go back up to 10mg from 4 before Xmas quite rapidly to cope with the pain and am not 100% with that level so thought I would give this a try At the moment I would take my old horses painkiller if it would help !!!!!!! I am loath to increase my steroids more before my blood tests on Monday and Drs appointment on Wednesday I personally cannot take ibrofen without feeling washed out and muzzy headed but ( fingers crossed ) have been fine on steroids It is only the long term effects on my body that worry me I have had a Dexa scan which was fine and take the daily calcium and weekly tablet for my bones without problem I appreciate it is difficult if you have other underlying health problems The giirl in the health shop was very helpful and said her Aunt had had success with taking Tumeric for her Rheum Arth I do think you need to keep an open mind with this and what suits one doesent suit another I do tend to blame every pain I have on PMR !!!!

12

Hi All

I thought I was starting to understand the management of this condition but I have to admit that I am totally confused by the debate over the effectiveness of steroids and NSAIDs for controlling it. As a newbie with all the problems I am having with my GP not wanting to prescribe steroids, as discussed in previous posts, I have tried several possible combinations of drugs to see what works best for me. Over the past three months I have tried steroids for about 3 weeks, various doses of NSAIDs for the rest of the time and no drugs at all for about 5 days last week.

Whilst the period on steroids was by far the best, I was only on the initial dose of 15mg and not trying to reduce it as you all are which it would appear from the posts on this website to be really difficult as a balance has to be struck between wellness and the aches and pains returning. Few if any of you seem to be saying that you are completely free of PMR symptoms.

My 5 days taking no drugs at all were the worst ever and made me feel dreadful all day and there is no way I could live like that for a long time.

I have tried various combinations of Ibuprufen and whilst they have not made me feel as well as the steroids they do seem to take the edge off the symptoms and enable me to cope. I initially tried 600mg three times a day but didn't want to continue at that dose so have now reduced to just 600mg with my breakfast. At this level my nights are not good and I can barely move first thing in the morning but by mid to late morning I am able to do most things that I could do before and can almost put my aches and pains to the back of my mind.

Whether the future is steroids or NSAIDs I really don't know at this stage but I would be interested in knowing how my experience compares with others.

Bob

13

Steroids for me everytime I'm afraid, nothing else does the job. Starting to reduce them now, slowly, as advised by my Consultant and all going well so far. My fingers are well and truly crossed. Good luck.

Lizzie Ellen

14

Bob

I am sorry if I am repeating myself, but there is no known cause or cure for either PMR or GCA at present. PMR has a mind of its own, it comes when it wants and it goes when it wants to. I look forward to the day when cause and cure are found and it can be removed from the 800 'orphan disease' classification.

Steroids are there to relieve the symptoms and if anything else relieved the symptoms, none of us would be on steroids.

www.pmr-gca-northeast.org.uk has quite a bit of information, factual, about PMR and GCA. It also has people's stories on it written by themselves.

Steroids enable you to regain some, not all, of your quality of life. And, as we are finding out, on this site as well as in support groups, some things are common amongst us and others are not. I suppose it is because we are all different in someway or t'other.

In all of this, I am assuming that you have been given a definite diagnosis of PMR and have been referred to a Consultant Rheumatologist?

It is hard to get your head around these two complaints, it took me six months. And three years later I am still learning.

Lizzie Ellen, the slower the better - a lot of people have followed Ragnar's method and found it worked. His story is on the website.

Try and make the following five days when taking the drop - light ones. Give it five days as you can get sort of withdrawal symptoms, if they disappear then that's that drop done. The hardest drop is when you reach 5mg - the percentage drop is then higher. Good Luck.

15

Hello again Bob As I have said before I felt terrible on Ibrofen I would feel sick and dozey all day but with steroids I felt fine I started on 20mg both times and the first time I was on 2mg and feeling great within just over a year and on maintenance of 1 to 2mg for a year and then I had 3 years of a very normal active life until it came back This time I had managed to get from 20mg to 4 to 5 mg within 14mths but unfortunately have had a blip and am up to 10mg I actually feel better this morning The only thing I have changed is starting Turmeric tablets this weekend ??? You need a Rheumatologiist all the blood tests ( as positive a diagnosis as you can get ) !!! and personally I would go steroids all the way as you should be moniterred have calcium and the weekly bone drug Dexa scans tests for Diabetes Blood pressure etc on a regular basis but not sure what you get if you just take Ibrofen My cousin was in hospital for 2 weeks recently with almost kidney failure caused by Ibrofen and I have had another friend with allergic reaction to it also Its an individual choice but to me its quality of life WHEN I get over this I wont take my body for granted and wont overdo it and pace myself a bit and hope it goes for good Best wishes

16

Hi again Bob

Oh I know it's a difficult choice to make.....none of us WANT to take steroids but as a pharmacist said to me when I was dithering about taking the steroids \"You are between a rock and a hard place\". It's difficult to gauge how much pain people who post on this site are suffering from (it's an individual thing isn't it?) but I had no quality of life at the time and I now know from experience that steroids were the right road for me as my suffering outweighed the risks.

The following may help you to make your choice and which bears out Mrs G's warning

Firstly, I was undiagnosed by my then rheumatologist during the first year of my illness and bedbound for 3 months, existing on the smallest dose of Ibuprofen and Paracetamol for many months just to make my life bearable. I have one kidney, the other having been removed when I was 13, thereby giving me a very healthy existence. During that first year of my illness, I was warned by a Pain Management Consultant that I should be very wary of taking Ibuprofen but stick to Paracetamol (which we all know is of little use!). Within a year, all my blood tests returned to normal and I was back to normal(!!). However, the GP then rang to say that the latest blood tests showed that my kidney wasn't working to full capacity......Ibuprofen?!!!

Secondly, within a further couple of months the pains returned and this time a different rheumatologist diagnosed both PMR and GCA. Apparently, I was at a much higher risk of contracting GCA because I had not been treated with steroids for what was actually PMR the previous year!

After almost 3 years and a starting dose of 40mgs, I am now almost down to 2mgs. Yes, I've had to go up and down the dose a couple of times, and, yes, it's difficult to reduce below 5mgs, but as Mrs K is always reminding us all, PMR will burn itself out when it is ready and not before, plus the body has to be weaned off these low doses incredibly slowly.

I'm sorry this is so long, Bob, but hope that it will help you, together with everyone else's posts, to weigh up the risks and advantages. Do keep in touch for as you can see all of us here don't only help ourselves but help each other as well. I, for one, don't know where I would have been without this help at the beginning of my illness. Good luck

MrsO

17

I was diagnosed with PMR in October. I was in a bad way. I could hardly move my arms at all. I told the doctor I could not take steroids, as a previous experience with them had left me permanently with no smell or taste (I have weird reactions to some medications!) I was put on Arthrotec 50, one tablet twice a day. Within two days the symptoms had eased, and I could use my arms again. I still get pain in bed, but otherwise I am fine. Arthrotec has an in-built protector for your stomach.

18

Hi Tichuk,

I was taking Arthrotec 50 for about a year to relieve pain and swelling in my knee (I'm going to have a knee replacement in the next year so just trying to nurse it along!). I developed PMR whilst I was taking Arthrotec (same dose as you, twice a day) but it had no effect on my PMR symptoms. I had to go onto steroids as I simply could not get out of bed most mornings and the mornings I did manage to get up, even a few steps were agony. As soon as I went onto Prenisolone I had to come off the Arthrotec 50 as, even with the stomach protector, both my Consultant and the Pharmicist insisted I couldn't take both. I'm so pleased that you're able to manage on the Arthrotec alone and providing you get enough relief from your symptoms I'm sure its a good solution. I wish you all the best, keep us posted.

Lizzie Ellen

19

Hi Enid, I was on Co-Dydromol for a few weeks before being diagnosed with PMR with reasonable success, but as someone says they are addictive.

Sorry to hear that you can't take the steroids easily as they were certainly better.

20

Hi sorry you have got PMR too. I am a new PMR patient only diagnosed three weeks ago. And I am on prednisolone and omeprazole to help with the stomach lining. I am on AA and AdcalD3 too. I too trying to look into anti inflammatory to help to fight off PMR if I am lucky. If you look into 'goji berries' although it belong to night shade family but it is antioxidants. And my doctor said is OK to take that with prednisolone. I also take spirulina and ling zhi (mushroom) I carefully spread them throughout the day. The pain has gone 99% just the stiffness on my neck. So I don't really know if the Pred has kicked in or the supplements helps too. Since you are not taking any Pred just wonder are you game to try those supplement? Can get the goji berries juice, spirulina from UK health stores. Is worth checking out.