Hi everyone. I have Pmr and am now down to 7mg on the Dead Slow and Stop method. I have just been diagnosed with two Spinal Fractures due to the Pred.
I tried Alendronic Acid when first diagnosed and the side effects were dreadful. As a result I don't really want to take the Hard Drugs again. Has anyone had any experience with Calcium, Magnesium and Vitamin K Tablets. I know I should be taking the stuff the Doctor wants me to, but to be honest I am frightened to death of it.
Thank you, Attic x
You should have been put onto calcium/vit D supplements as soon as you were diagnosed with PMR and put on pred. That is the basic "bone protection" and is where you should start. Then a dexascan should be done before alendronic acid is considered - your bone density is not always low enough to justify it and it should only be taken for an absolute maximum of 5 years because of long term side effects. And you should be on the calcium/vit D supplements at the same time anyway. Most of us take the supplements - I've been on them alone for 6 years and in nearly 4 years there was no change in my bone density at all. I refused to take AA quite early on, I took 4 tablets I think. I like my calcium/vit D tablets, like sucking a sweet! Some people say they get wind and bloating with some but there are several sorts.
If you had severe side effects with AA there are other substances for bone protection that should be looked at IF you need them.
Are you in the UK? If so, the National Osteoporosis Society has a very good helpline
and they will talk you through all your options.
I had been taking calcium citrate in a formula with D3 and magnesium for many years, upped the dose from the minimum to the maximum when starting pred. With (incorrect) diagnosis of osteoporosis three months into pred I turned down OP drugs, started research (ongoing, learning more all the time) and now taking a more complete bone protection supplement, plus Vitamin K2-7, cod liver oil (small amt) for the extra D and natural Vitamin A, etc. I am also undergoing an alternative treatment to help reduce inflammation (low level light therapy). I have been doing this for a couple of months. Now at 7 mg, feeling a little better every day. Not sure which of the strategies is most effective, maybe they are synergistic, but I am content with my progress so far. My osteoporosis diagnosis was actually osteopenia, so still serious but not dire! Only the next scan, a year after the first, will show if I have made right choices. I do feel that everything I do to help my bones is helping with the inflammation, too. I'll private message you a little essay I wrote to help me keep track of my journey.
Thank you HeronNS.
Can you possibly tell me the name of what you are taking, so that I can have a look on line.
I have never had a scan, as my GP flatly refuses to refer me for one. He also wouldn't send me for an Xray when I started getting the agonising pain which has turned out to be two fractured Vertebra, he just prodded me in the back and said "it's your Ribs" and gave me a packet of a Painkillers. I have had to pay £130.00 to have an Xray done privately.
I am not letting him get away with this, I am in the process of making an official complaint about him.
We could really do without this sort of thing, couldn't we. PMR is enough to deal with.
Take care, Attic
If you are within reach of Southampton or Bristol - and probably other places too - it is possible to have a dexascan done privately for about £55 or a bit more. Not that once should have to but heigh-ho!
I'd have tried going to A&E with agonising back pain rather than having a private x-ray - and I'd be changing my GP pronto! Anybody would think he was paying for an x-ray out of his own pocket - though I suppose if he is the senior partner, he effectively is. But it is appalling and all the best with your complaint.
Hi PMRpro. You are not going to believe this but I did go to A and E with my agonising back pain after being fobbed off with painkillers by my GP.
I waited for three hours to be seen and when I was he poked me in the ribs as my GP had done and said " I think it is a slipped disc". I told him I was at high risk of a fracture as I am post menopausal and on long term Steroids and could I please have an xray. What I am going to tell you next is unbelievable. He said o no I don't think so, we don't want to expose you to all those harmful rays do we. He then proceeded to give me a packet of painkillers.
I am in the process of making an official complaint about the Hospital and my GP.
I will let you know how it goes.
Attic x
P S. Did I say, I have two fractured vertebra.
That is utterly disgusting - and all the best with your complaint! That actually sounds patronising in the extreme - and an x-ray isn't that much of a big deal, as you'll see here:
"We are exposed to radiation from natural sources all the time. According to recent estimates, the average person in the U.S. receives an effective dose of about 3 mSv per year from naturally occurring radioactive materials and cosmic radiation from outer space. These natural "background" doses vary throughout the country.
People living in the plateaus of Colorado or New Mexico receive about 1.5 mSv more per year than those living near sea level. The added dose from cosmic rays during a coast-to-coast round trip flight in a commercial airplane is about 0.03 mSv. Altitude plays a big role, but the largest source of background radiation comes from radon gas in our homes (about 2 mSv per year). Like other sources of background radiation, exposure to radon varies widely from one part of the country to another.
To explain it in simple terms, we can compare the radiation exposure from one chest x-ray as equivalent to the amount of radiation exposure one experiences from our natural surroundings in 10 days."
Most of us don't have x-rays that often - so that doctor could do with a few physics lessons.
I don't feel comfortable recommending any particular product (and we probably don't live in the same country) or dosage. If you check the sites I sent in my message you will get loads of information, and a reputable health foods store should be able to give you good advice regarding supplements - that's where I got mine, although I do go to the drugstore for some of the really basic stuff. All the best!
My rheumy prescribed an alternative to AA, given as an infusion, annually for three years. I've just had the first - I posted about this a few days ago. I've also had AdCal for four years but despite this, a Dexa scan revealed osteoporosis in my left hip. If all else fails, it's worth asking your GP about infusions.
Hi Attic, I am as confused as you are, I was taking AA from end August to beginning October; going backwards and forwards to GP as I felt terrible. I put it down to Preds until I came onto this site and did some reading and asked a few questions. I could hardly walk by this time. I think there were a couple of suggestions of stopping AA so I did, what an effect that had, within 24 hrs I started to improve, the muscles in my thighs came back to me, palpitations eased, fatigue eased, started to sleep a little more at night so started getting more than th 2 hrs that I had been having. I dutifully told my GP what I had done in a telephone appointment to which, after the pause and the yawn he replied 'but you should be taking something' , I told him what had been recommended on this site and he asked me when I was seeing consultant again, I replied in 6 weeks, he suggested I discuss with consultant! At another appointment, with another GP she suggested I should be taking AA as she would, and learn to tolerate and give the body a chance to get used to the medication, I did say I had taken them for 6 weeks before removing them from my regime, I was told I was putting myself at high risk as I was poste menopausal and should be taking AA or something in that family and no, I don't need a dexa scan as she hasn't read that it is necessary! I have just had my second appointment with my consultant. I explained what had been going on, he has ordered a dexa scan, he has given me a prescription for calcitrol 0.25, he has written to my GP to make a note that I am allergic to AA and probably all of its family and has also said I must be tested regularly for rising levels of calcium. He suggested that the GP had been treating a 63 yr old as though she was already 75 yrs old. What I now do not understand is why does all this take such a time? why is it so different from one doctor to another? Where is the consistency of diagnosis (mine was GCA Clinical after biopsy, but had been going backwards and forwards to GP for couple of years with different symptoms of PMR and do believe that it progressed to GCA but how do I know) who do I sit down and talk to, to get to the bottom of everything. I still have the problem of the Preds, which I have managed to reduce 50 mg to 20 mg since August with one really bad experience of flare symptoms. The consultant wants me to reduce by 10 mg a month, so suggested the 10% reduction and he asked why I can't do it by 10 mg, I explained about the bad experience going from 40 mg- 30 mg and He said it's a case of the body getting used to it, so we agreed I would try 5mg beginning Jan and 5 mg every 2 weeks after! Still not sure about that but will see! I have started seeing a medicinal herbalist, who gives me the time to discuss things and prepares a tincture to help with fluid retention, immune system, sleep and to strengthen my liver, she has assured me that nothing she gives me will interfere with what GP prescribes, I am also following an anti inflamatary diet (no sugar of any kind, no processed food, if it not whole food I have to have prepared it, many green veg, (I cannot follow organic totally as it is impossible and would be too expensive). Sorry about the rant but there seem to be so much with this complaint that has no cut and dried answers, I have wondered also if I should be taking K2 vitamin, the trouble is , getting bogged down with all the recommendations that you read but everybody seems to have a different experience!!!! GOOD LUCK!!!!
It is overwhelming. I have heard that we can get some Vitamin K2 from fermented vegetables (things like sauerkraut, kimchi, etc.). Haven't found confirmation of that anywhere, but as fermented foods are good for us anyway it wouldn't hurt. They include aged cheeses, kefir, as well.
Go to Useful Documents on the PMRGCA website to see the BSR guidelines for PMR and GCA. I do wish these could be mandatory rather than just guidelines! Anyway, might be worth printing off and giving to these doctors who are talking such nonsense.
Perhaps these doctors have never had to take drugs with strong side effects? They certainly are diagnosing/failing to diagnose in the dark of ignorance it seems..... DEXA scans should be ordered, if possible, before starting Pred and treatment should be based on the result. Discussions should happen if AA does not suit as there are other options.
The issue with supplements is that the UK NHS won't advise to take them because there is no scientific proof that they work - so we are on our own there. However if you go to a reputable health shop and find someone who has had training on what the supplements they sell do, then you can better judge whether to give them a try. I take food supplements, have changed my diet a bit and do exercise and my Consultant said that probably (note 'probably') what I had done had meant that the Osteoporosis caused by Pred was less than it would have been without..... but who knows scientifically? I can only go by what I'm seeing/feeling unscientifically in my body. So each individual needs to find what works for them - and find the strength to keep going back to health professionals until they do some listening......sigh. Good luck!
Pffft! How often do some of these people put their brains in gear I wonder?
I take nothing besides the calcium/vit D supplements - and my bone density did not change at all over a period of nearly 4 years on pred. I have read somewhere that less than half of people on pred develop osteoporosis - so unless all of us had had dexascans done every so often before PMR and then again during treatment with pred there is no way they can say it was definitely the pred that caused the decrease in bone density. There is no real evidence that low bone density is the direct cause of fractures - people with poor bone density don't always have fractures, people with normal bone density do sometimes break bones. Far too much of what some doctors believe about osteoporosis is based on a marketing campaign by the company that developed Fosamax - who had an agenda: persuading doctors that it was totally safe and would miraculously prevent broken hips. They medicalised looking after healthy people. As they are now trying to do with statins.
My granddaughter takes highish dose pred for asthma. Every time they reduced the dose - she had a major attack. I'd already realised that if you change the dose by smaller amounts your body doesn't protest as much and suggested that to her mother - who poo-pooed the idea. However - when she persuaded the doctors to try doing it in smaller steps the asthma didn't flare so much.
It is well known that there is something called pred withdrawal rheumatism - why is it so wrong to want to reduce by (for example) 2.5mg per week rather than 10mg per month all at once? If it means you DON'T spend a couple of weeks feeling like death warmed up getting used to the new dose - what is wrong with that?
It's common sense - why do so-called experts have such a blind spot about it?
I know what you mean. If there isn't a wad of money to be made, little to no research is done to confirm (or debunk) the various strategies we are all independently working on. Our "health" care is really sickness care, and what we want and need is "wellness" care! Plus the system is weighted against us. Have done some reading lately about one of the (non-psychoactive) compounds in marijuana, which is supposedly very effective against inflammation. But is there an easy way to get my hands on this (although as it won't give me a high it isn't illegal). No. What if it is a substance that could allow many of us to reduce our pred doses significantly? How can we ever find out?
This also interests me as I lost my husband to cancer last year, diagnosis to end in less than 3 months, and have since read some articles about the uses of marijuana for anti-inflammation and for treatment of cancer. Amazon actually import and sell CBD Oil, but unsure about it being suitable. It seems to me, that they (medical professionals) tell you to research on the Internet, because they don't have the time to explain, then when we find out more than they want us to find out and challenge their decisions, we are in the wrong for finding out what we did and asking a few pertinent questions!
I had never heard of CBD oil until a few days ago, and since then it seems to be coming up everywhere. Just this morning there was an interview on the radio about it. Apparently there is a (legal) medical MJ clinic in my community where one can get advice, and where they will fill a prescription. If it meant being able to reduce, even if not eliminate, pred I would certainly like to try it. It doesn't have to be smoked, fortunately! I will sound out my GP when next I see her in a couple of months.
Hi HeronNS, I think you are based in Uk, but is that N, S, E or W? I'm SW but would be interested if you can give any detail of MJ clinic?
Sorry, Lillegirl, I'm in Nova Scotia (NS), Canada. As we now have a liberal (yes, and Liberal 😉 ) government the prospect for easier access to medical marijuana is greatly increased.
Hullo all, I have had pmr now for 18 months. I am down to 3 1/2 g pred., and now only have pmr in my shoulders mainly right one. I can garden all afternoon with no problem or effect.
Discussing bone density, I had a test before pmr and was over the top of their scale. My Dr just suggested I could take vitamin D if I wanted, but as it is summer here (NZ) at the moment and I am out in the sun a fair bit he thought I probably wouldn't need to take a supplement.
I have always had yogurt most days. My mother also had yogurt everyday and whenever she had a fall never broke any bones.
One tip for strengthening our balance was given to me by my brother ( his wife is a nurse ) so I think that is where he got this tip from. Stand on one leg while brushing top of your teeth, then change leg for when brushing the bottom teeth. Feels strange but it strengthens the muscles in your feet. My balance is much improved now.
Thank you for all your very helpful information.
Just re the Vitamin K2 (seems like I'm on a bit of a crusade here, sorry!) - apparently it is available in fermented foods, of which yoghurt is one. I also wonder, although I've not come across any commentary supporting the idea, if our own gut microbiome is in good working order maybe we become more efficient in producing our own Vitamin K2. Makes sense as surely we must originally have evolved to be able to do that.
I'm sorry to hear about your spinal fractures. I too had issues with Alendronic acid, but since being prescribed Risedronate I have had no side effects or bad reactions to it, but don't really know if I need it or not. I've never had a bone density scan.
I had real problems with the Alendronic acid, as apparently many people do.
I take Calcium and Vit D supplements as well, but that is because they found me to be very low in vit D. I don't know about Vit K, but I also take a mineral supplement which contains magnesium as I read somewhere that it was often deficient in people with PMR, but can't remember where I read it. I'm sure someone with more knowledge than I will answer your questions much better than I can. Have a restful Christmas.
Yes, magnesium is one of the elements that helps calcium to do its work. Vitamin K2 is not readily available in the modern Western diet, and our bodies are not very efficient at converting the Vitamin K1 into the K2 form, so supplementation is usually necessary. It can be got from grass-fed animals and related products (eggs from truly free range, not grain fed, hens for example) and obviously a food source would be best if you can find one.
Calcium and Vitamin D
Warfarin reduces vitamin K, which aids calcium build bone
Vitamin k
