HELP WITH PMR MEDS

Hi, I am a newbee and think I have had symptoms for about a year. Eventually diagnosed 3 1/2 mths ago with PMR. Have read on this great website how Dr said take these steroids and if you are pain free in 48 hours it is PMR!! Well, I was and was thrilled until I then realised what taking steroids meant. Was given 30mg and am now down to 18mg reducing by 5mg and then 1 mg but at the moment am feeling same as before I started on steroids, aching all over. Dr wanted me to take Alendronic Acid for my bones which on reading literature and looking on this website I refused. He was not happy but gave in to me by prescribing Adcal D3. What I have found out from all of you is that I should be taking Magnesium and K2 for the calcium to be properly obsorbed by my bones. Is this correct and what quantities? Something I have also heard is turmeric capsules for inflammatory illnesses. Has anyone heard this as well or tried it. I just want to get off these steroids, so any help and advice would definitely be appreciated.

27 Replies

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  • Hi Jenda,

    Welcome to this thing called PMR. Glad the initial dose helped your aches and pains, unfortunately would guess that your reduction to 18mg was a little too quick which is why they are back.

    What you have to understand, and what the doctors aren't very good at explaining, is that there is no cure for PMR- and the inflammation caused can only be controlled by steroids until such time as the disease burns itself out. That can take anything from 2 years upwards. The balancing act for you is to reduce slowly until that happens, but making sure that you are taking enough Pred to keep that inflammation under control at every reduction.

    You can do things to help, like learning to pace yourself, not doing too much on days you feel good otherwise you'll suffer the next day. Gentle exercise is good, but not too strenuous. Eating a healthy diet.

    Lots of people use turmeric in cooking, not sure how many take capsules, but I'm sure those who do will be along with advice. Know HeronNS is a great advocate of alternative therapies/medicines so I know she'll advise you.

    As for your current aches etc, if they don't improve then you may have to go up again to the last dose you were pain-free - don't let things get out of control.

    I know you WANT to be off steroids, but that's not the best way to look at things. You need to accept it is the only thing - whether a drug or other remedy that is proven to control your symptoms effectively.

    Whether we like it or not, when you have PMR, steroids become a way of life! So go with the flow.

  • I really find it helps enormously to be able to read about other people's symptoms and how they cope . Especially Helpful is the knowledge base and experience of DL and PMR pro. I am on my second attempt at pred. reduction ,now on 8 . I followed suggestion of cutting the one mg. in half and found it helped. I also take a magnesium now and it might help. I have to get the steroids down cos. I now have steroid induced raised intra ocular pressure diagnosed by eye consultant. Struggle on patsy 69

  • Hi again,

    Sorry to hear about your raised eye pressures - quite common I'm afraid, but they should reduce accordingly as you lower the Pred.

    Although you want to reduce because of that, you are reaching the levels when your own adrenal glands need to start kicking back in, so just be aware that if they're a bit lazy in doing that you may suffer from fatigue a bit more than you were/are.

    Personally I found it quite difficult between the levels from 6mg down down to 3mg (taken in 0.5mg steps) but I did start on high doses, and had been on Pred for some time!

  • If what you have is PMR there is not a lot that will speed up the process of getting off pred I'm afraid. It hasn't cured anything, it is just managing the symptoms until the underlying cause burns out and goes into remission. DL has explained most of it.

    There are people who take turmeric and swear by it - there are people who have tried large doses and had a nasty reaction. If you try it, use dietary turmeric and not capsules and start with just a small amount and build up gradually. Dietary garlic and oily fish are also helpful according to some people.

    We all want to be off pred - but the alternative is managing PMR without and having done that for 5 years I really don't recommend it.

    However - either the fast reduction has caused a flare/steroid withdrawal rheumatism. At 18mg you SHOULD be fairly well managed but you can't go back to your normal pattern of behaviour. Your muscles remain intolerant of acute exercise and you must learn to pace yourself:

    healthunlocked.com/pmrgcauk...

    You do need a dexascan to get a baseline of your bone density - with that you can see if you need anything more than AdCal and exercise. In 7 years of taking pred my bone density has only changed minimally - without alendronic acid. It isn't essential and SHOULDN'T be taken if your bone density is good.

    You need to spend a bit of time at your current dose - to see if the symptoms settle with a few lifestyle changes. If not - you probably should be asking for a referral to a rheumatologist if you are currently being cared for by a GP. There are several causes of the symptoms - not just the PMR we discuss here and which should respond well to pred.

  • Yes, you are right, there is more to keeping bones healthy than calcium and D3, although these are important. Magnesium and K2 help the calcium go to the bones where it belongs, rather than accumulating on the walls of blood vessels or in organs where it isn't wanted. Most things can be got from a good, well-balanced diet but sometimes K2 is hard to get and you will probably need to supplement it. Check with a health food or organics food store regarding supplements. There's a lot of information online these days so I suggest you do a bit of research over the next little while. Avoid the sites which are trying to sell you a specific supplement. It's apparently true that the first few months on pred can cause the greatest problems with regard to bone thinning in susceptible people, but for the most part bone changes are very slow and there is quite a lot you can do to maintain them. Weight bearing exercise (as simple as walking) is very important. Here is a link to a nice clear explanation of Vitamin K2.

    authoritynutrition.com/vita...

  • I was given Alendronic as I have osteopenia but had a bad reaction. A details scan confirmed I need something and so after seeing a wonderful specialist who seemed to understand PMR far more than the last Rheumatologist did we have agreed I am to have injections six monthly.

  • Alendronic Acid didn't agree with me either. My GP put me on Ibandronic Acid, 1 tablet, monthly. No problems.

  • Hi Jenda, I have been adding Turmeric to rice for years, long before it became known for its health giving properties, just sprinkle in a good dollop at the beginning of cooking, it gives extra flavour and a good colour. Friends and family love it. Lol

  • I have been taking tumeric capsules for over a year. I don't know if they are helping but the problem is that if you stop taking things like this you then find out that they are doing a good job!

  • Can I just throw in here that if you are on ANY other medications, prescription or OTC, you MUST check with the pharmacist (not the counter staff) that it is OK to use anything.

    In this particular case, be very careful if you are on anticoagulants as turmeric can "thin the blood" and if you already take something to do that you can end up bleeding. If you are on warfarin it probably just means checking your INR more carefully/frequently but even so, it can swing wildly even over a few days (as I know to my cost). With the other newer medications you may not be monitored and only find out when it happens.

    If you carry a card in your handbag with your medications and doses, always include any supplements you take on a regular basis - because should you be taken ill it may have a bearing on the medication they use.

  • What a great Forum this is. I am understanding this PMR more and would like to thank you all for your very quick responses to my questions. Heron for your help with K2. That is so worrying about calcium attaching itself to our arteries and organs. PLEASE READ THAT ARTICLE EVERYONE. A real eye opener. I think all the information I have received re PMR has come from you all as I feel the advice I received from my GP was pretty grim as it was literally take 30mg for 6 weeks, then 25mg for 2 weeks, 20mg for 2 weeks and on my query of there being a 1mg tablet, down 1mg every fortnight till I am now at 18mg. After 2 weeks on 18mg the pains all came back so on reading your advice I took 19mg today. I only hear from the GP by phone every 2 weeks so will have a few questions to ask him next time. No mention of a scan or referral to a rheumatologist and no mention of Magnesium or K2 needing to be taken as well as calcium tablets so I will be bringing that up with him. He is a really nice doctor but like so many of you have said, do they all know about PMR. Maybe they need to read this Forum!! I suppose they cannot specialise in every illness! I have a couple of side effects which you might be able to help me with. After 10 days on 30mg I started having palpitations, heart rate going from 70 to 100. Had an ECG which showed the heart was fine so GP said it was down to the steroids so just accepted and learned to cope with it. About 3 weeks ago I developed a delightful pred buffalo hump. Really attractive, just what you need. I have now realised from this great Forum that this is not going to be over quickly and have to learn to pace myself but still enjoy my life. Things can be put off till tomorrow, not everything has to be done today.

  • Did you actually have an episode of your palpitations during the ECG being done? If you didn't it wasn't going to be particularly informative!

    I do wish that GPs (and other non-cardiologists) would actually understand that an ECG that looks normal does NOT always mean there is nothing wrong! They generally only look abnormal during an episode of whatever or when you have had a heart attack that has damaged tissue - and not even then always as there is one that is actually called a "nonST-elevatedMI".

    That aside - yes your symptoms could well be due to the high pred dose and providing they don't interfere with things too much then you just get on with it. However, autoimmune disorders can also cause problems with the electrical system in the heart - my PMR was accompanied by me developing atrial fibrillation.I had had several vague episodes of palpitations, the GP saw nothing so dismissed it nothing to bother about. This was long before pred by the way. It was eventually identified after a bad reaction to a drug but once the a/f was pretty well controlled with medication I realised how often I had had episodes.

  • I asked my Dr today a iut turmeric and she confirmed what you have written- turmeric can help eliviate inflammation.

    I then went to see my Pharmacist who was quite adamant that turmeric does reduce inflammation. He recommended capsules obtainable from health shops, but my Dr recommended sprinkling over food.

    I'm going to try the capsules.

    Why has no-one told me before?

  • There have been discussion all over the forums - I'm really surprised you haven't seen one before!

    Do be careful with the capsules - you can have reactions to turmeric too! You may be better starting with adding it to food and building up slowly.

  • Hi PMRPro, I am new to this Forum and have noticed that Whiskey2 is new as well so maybe it has not been discussed since us joining. Will not go mad with a high dose, just will start slowly and see what happens.

  • Thank you for noticing - I only joined yesterday.

    I could be leaving after that comment from PMR pro!!

  • I'm very sorry - you made it sound as if a bit of info hadn't been imparted. If you only arrived yesterday - no-one has had an opportunity to do so either. Lots of people lurk and then post much later.

  • Only joined forum yesterday!!

    Thanks for your advice though!!

  • Hi Whiskey2, pleased that you have confirmation of the benefits of turmeric. I was told a few months ago by friends when first felt bad with the PMR and have since mentioned it to my physio and he also has confirmed so am going to try a small dose to start with to make sure there is no bad reaction and slowly increase. I have checked with Holland and Barrett who do stock the capsules as well as teas and powder so will give it a try. Speaking with the Dr later this week so will check with him before I go ahead. Like you, why is there not more information about the benefits of turmeric. Anything to help with the pain.

  • Don't expect miracles though - it doesn't replace pred, but it may mean you feel better than without it!

    Celtic used turmeric and garlic in cooking, just adding them to stews and casseroles and things, and ate oily fish 3 times a week - and said she really noticed a difference if she missed her usual routine. I can't use turmeric and my husband objects to garlic - but I do try to have oily fish - but living where I do all I can get is farmed salmon which is said to be less good than wild (and it costs a bomb!).

    Good luck - and enjoy!

  • Re oily fish - you might be better off taking a fish oil supplement, sorry to say, than consuming farmed salmon, depending, of course, how the farmed fish are fed.

    health.clevelandclinic.org/...

  • I only eat fish because I like it - no other reason!

  • Fair enough, but the contents of farmed salmon can be questionable. They certainly are here, I never eat it any more, but hopefully your source is better.

  • Funnily enough I've just been reading about turmeric. You might want to do a little research before proceeding with capsules as apparently they aren't as effective as the actual spice. Some are better than others. Make sure no matter in what form you take it that a bit of black pepper is included. The anti-inflammatory components of turmeric aren't very bioavailable, but the presence of piperine makes it exponentially more effective.

  • Hi HeronNS, Had my call from the GP today and ran past him all the queries we have written about. He said Magnesium plus K2 for the bones benefiting from the calcium was correct and when I asked him about turmeric he said both he and his wife take it so tomorrow I am off to Holland & Barrett to get some supplies in. I am going to try Curcumin C3 Complex 60 Capsules as they contain piperine. Will let you all know if I feel any benefit. Of course with the Magnesium and K2, there will be no outside evidence but hopefully my bones will take the calcium they need. Anything to avoid Alendronic Acid.

  • Well done Jenda! I plan to post my DXA scan results when I finally get them. Hopefully I'll have done all right. Fingers crossed.

  • Best of luck with your results. Will look out for them.

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