Update on my polymyalgia
Posted , 8 users are following.
Hi there just thought I would update you how things are going on now.
I was diagnosed with PMR in July after weeks of really bad pain and stiffness I was put on 15mg predisilone on the wed which I took at 5pm with my main meal re dr instructions on the Thursday morning 85% of the pain had gone it was like a miracle over the next week the pain had disappeared almost completely I took this for 5 weeks in total had another blood test inflammation levels were much improved I thought gp told me to reduce then to 7.5mg although people on the forum were saying the reduction was far to much however I took these for two weeks with no breakthrough pain but I had to check something with my GP and she told me I was wrong she had said 12.5mg although I said I had no breakthrough pain she still wanted me to go up to 10mg which I did for a month I have just reduced again and I'm now on 7.5mg all well at the moment except for the side effects although the dizziness and the slight shaking hands have gone sleeping is a big problem although I have switched to taking the pred with my breakfast it has not made any difference to sleeping also I'm fed up of having the headache.
I made a decision not to take Alendronic Acid that the GP perscribed in the absence of a bone scan to prove I needed it and which they seem to think I don't need I do take Adcal 2x daily.
0 likes, 23 replies
Anhaga olwen2
Posted
Well done, sounds like things are good at the moment.
It's advised never to drop by more than 10% at a time, so even if this drop goes well it would be a good idea to check into some of the slow taper plans which have been developed by people on this forum and use one of them as you get to lower levels. Your adrenal glands will have gone to sleep and at 7.5 they will be starting to wake up again. As this can be slow, slower for some than others, you may experience increased fatigue while your body readjusts. That's another good reason to make sure any further reductions are much smaller and eventually slower as well.
I refused the AA also and am now making sure to get some of the other micronutrients besides D3 to make sure calcium does its job, including magnesium and Vitamin K2 as well as a few others. A lot is available in our diet, but probably not enough K2.
And exercise of the right sort to stress the bones but not the pred/PMR weakened muscles, like walking, Nordic walking, tai chi, some kinds of yoga, etc.
?I found my sleep quality improved a great deal when I started taking one of my calcium doses with a small snack at bedtime, and that seems to have broken a bad pattern of sleeplessness so I've been sleeping well for maybe ten months now!
Good luck with your journey. So glad things are going well so far. ?
olwen2 Anhaga
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Anhaga olwen2
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Yes, well at an organics foods store which has a large section of supplements and other natural non-food products. There are two kinds, mk4 and mk7 and I think the jury is out on which is really better but I've read if you have to choose get mk7. Some foods have mk4, although only small amounts. Some supplements will have both. Best source is, apparently a fermented soy, Japanese, which is described as an acquired taste!
Anhaga
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olwen2 Anhaga
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Thanks for the information don't think we have a local organic food store but we do have Holland and Barratt shop
Anhaga olwen2
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I looked up their site and they have 2 brands listed. It is expensive, but what price a healthy skeleton? After all, that's what everything else hangs on! You may also find supplements which include K2 with other things, but I think your calcium is covered by NHS is that right? So you probably don't want to change. I take extra K2 along with a special bones calcium supplement which includes it because I have a very high D level, which can lead to misplaced deposits of calcium, so hope the extra K2 helps counteract that. Most people won't have that problem, of course.
nick67069 Anhaga
Posted
I have started to take natto, which is readilly available here ( I live in Japan). It is fermented soy and smells and tastes awful for us westerners, but what I do is add some soya souce, and mustard which covers taste and smell
. After adding those, mix it until it becomes softer and also develops some sticky liquid, which is also (apparently) very good for you. It comes in 75gr package and one needs about 3 packages/week. I take 1/2 package every day and the other half goes to ( you will never guess) to my dog ( without additives). He loves it as it is!
nick67069
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iellen32 olwen2
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Did you have it done?
olwen2 iellen32
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Hi there I havnt had one I have asked to if our doctors the first said I didn't need one as I had never had a fracture and the other one who perscribed the AA said to just take it has by the time the appointment came through the pred might have already done the damage so there we go
diana21296 olwen2
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It's a good idea to have a DEXA scan anyway so you know the state of your bones.
Anhaga olwen2
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I don't understand doctors.
EileenH olwen2
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After 4 years on pred my bone density hadn't changed at all.
He's wrong - it's in the guidelines for patients going on potentially long term pred, not just post fracture. And it is to be done to see if you NEED AA or whether you are likely to be fine initially with calcium and vit D supplements which also prevent the changes in bone density for many people. Long term AA isn't good - it too can cause specific forms of fracture - the recommendation is to not take it for more than 5 years, and recently I was told it was now down to 18 months although I've not seen that myself.
If you are in the UK there are several places that do DEXAs scans privately for about £55 - Southampton does and there are also places around Bristol. There are others, just you'd have to look. There are other places that charge more.
olwen2 EileenH
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That's a idea we have a small private hospital by us I I'll ask them how much it is don't know why I havnt thought of it thanks
EileenH olwen2
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They may not have a dexascanner - it is a very specialised and pretty expensive piece of equipment! The little things that look at your heel are useless - don't waste your money on them.
I googled dexascans privately and a site called privatehealth gives a search thing to find ones near you and get prices. As I say, Southhampton does them very reasonably - but privately the prices vary widely.
olwen2 EileenH
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Hi there I have just been onto that site but there not coming up with anything local just looked on spire health which there is one in Solihull Birmingham but it is £200 carnt afford that so when we go home on Thursday I will give the private hospital by us a call but I am thinking now they won't have one I am really annoyed that I should have to go down this route I have worked all my life shouldn't have to pay I don't want to take the Alendronic Acid but on but on the other hand don't know if I am doing the right thing by not taking it that's why I think I should have bone density scan that would be the decider
diana21296 olwen2
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olwen2 diana21296
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Anhaga olwen2
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EileenH olwen2
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I'd get tougher with the GP - and try a different one if there is that option in the practice.