Hi All, just yesterday I finally got results from my DEXA .scan which I had done on 3rd of April. My T Score was T-2.3 (osteopina). My last DEXA scan showed my T-Score as -1.7 and deemed to be ok. This is quite a hike and I'm quite upset by i seeing that T-2.5 is Osteoporosis. I am Prednisolone for just over 4 years now having been up and down a few times. Started on 15 mgs and currently on 8.5mg daily. Also on Methotrexate 20,mgs for the last 15 weeks (once a week) as a steroid sparing drug.Doctor has advised that it might be worth starting a bisphosohate to prevent further steroid induced osteoporosis. Checked the side effects which stated reflux and inflammation if the oesophagus. I often get reflux if I eat late or too much or some spicy food. Wondering if it's worth adding another drug? Is it even possible to keep the osteoporosis at bay at this late stage? Was upset at how fast this progressed. I do take calcium but not as frequently as I did at the start and a lesser dose than originally prescribed. The original dose I took was 1000mg)600iu calcium/Vit D. I take Vit D3 spray every morning, 3 pumps (3000iu). My question here is should I be taking K2 to direct the calcium to the bones and not the arteries? I intend to go back to the original higher dose of calcium. Concerned about the development of heart disease and high calcium intake.Did read Tangocharlie's post earlier and all responses but too much info re drugs that I got confused a bit. Good for info purposes however but this is new to me. I'm still learning! Thanks in advance
Hike in T-Score due to steroid use. Worrying. - PMRGCAuk
Hike in T-Score due to steroid use. Worrying.
It seems one of the best ways is to increase the weight you carry. You can get weight type jackets on such places as Amazon.
Thanks Piglet. I hadn't heard about the weighted jackets. I will look them up on Amazon. I'm attending a rehab centre nearby for resistance training. The machines carry weights (not too heavy), suited to what I can push and pull/lift. The manager of this gym has told me that they help build muscle which will help support my body. It's a long term thing I believe. It feels like a positive thing for me to do. I also have some aqua dumbbells for the pool which I find a little hard to use so I don't do it very often. Jogging up and down the pool is possibly good. Have to keep trying 🤗
Id be inclined to go go back to original doses of VitD/Calcium... were they prescribed by doctor at outset along with Pred. Seems a different amount as that usually prescribed in UK.. and yes add in Vit K2.
Osteopenia doesn't necessarily become Osteoporosis, so you may be able to help yourself with going down the AA or similar route .. this from ROS - gives exercises etc -
theros.org.uk/information-a...
Thanks for the advice Dorset Lady. I will probably go with the AA for a while and see how it goes. I already get reflux, very unpleasant but think that's down to eating late at night and some spicy foods. Happens less these days. If AA causes more of this then I'll have to reconsider it. I think I just got a bit of a scare at how quickly the osteophenia move so close to osteoporosis. If I could even hold it at that (T Score - 2.5) it would be something.Brilliant article on the exercises. I have printed it out for reference. I can't jog with the OA in my knees but I can do some jogging in the swimming pool so that may be as good. I am heading back to the pool tomorrow after a 4 month absence (due to work). I'm also giving up work in 2 weeks time and will be focusing a lot more on my physical being.
Really appreciate your response.
You’re welcome and think your approach to AA is spot on. Try it and see- if it works, great-if it doesn’t, then no problem stopping it and looking for other options.
Good luck
Although I’m off steroids and my last DEXA scan was ‘normal’ one of the GPs at the practice advised continuing with CalciChew D3. I’ve halved the dose to one a day. The radiologist who reviewed the DEXA also recommended continuing Risedronate but I stopped taking it 18 months ago.
The GP said the body uses calcium to repair damage to the arteries, typically induced by smoking and drinking. He offered no advice about K2, they consider it to be alternative medicine.
Before starting Bisphosphonates it is recommended to have a dental examination.
Thanks Exflec for your response. It is helpful for me to know this U. I must talk to my doctor about the bisphosphonate. Think the bone structure if my gums ain't that good either! I will pay more attention to my diet as I'd prefer to take more calcium from food than the meds. Also I will check out K2 to a greater degree.
Great you are off steroids and your DEXA is normal. Continued best wishes with it.
All the best, Lucia
As side note, I used to have extremely sensitive teeth. A few months after I started taking Vitamin K2, not long after starting my PMR/pred journey, I realized they were much improved, and this improvement has lasted, and become even better. I took pred for about 8.5 years, ending only in February this year. Had a lot of dental work done last summer, some of which required a healthy jawbone,* which apparently I have!
*Implant to replace a tooth which had been broken (then repaired, but dead) in an accident about 20 years before, because it was becoming resorbed.
Followers of this thread may be interested in this article. Incidentally, dentists more than doctors are usually convinced of the benefits of Vitamin K2. They see bone changes up close when working on jaws!
I don't think there is an associated risk of heart disease if you get your calcium from food sources. I believe yogurt is an even lower risk than dairy milk in a Swedish study. I was prescribed calcium/vitD but I persuaded my GP I was getting enough calcium in my diet and so I just take a vitD supplement- although it is added to plant based milk alternatives like soya milk.
I now take Alendronic Acid bacause my DEXA scan came out similar to yours. I also had a marked drop after a year on pred above 10mg. Inactivity and poor appetite in the early days probably didn't help ontop of the effect of pred on bones. I shall stop taking it when I get down to 5mg. I do take vitK2 but the research in Western countries is inconclusive. A daily handful of prunes is also meant to be beneficial.
The prunes are a source of boron, one of several micronutrients important for bone health.
Years ago DorsetLady (I think) posted about some research which showed we actually absorb calcium supplement more effectively if we have a little yoghurt with it. I always have a couple of tablespoons of plain yoghurt with my bedtime calcium dose.
Might have been included in post somewhere - but cannot remember specifically-but this is general info -
Yogurt is a dairy product that contains calcium, so it can be part of a meal that helps your body absorb calcium supplements. In general, eating food with calcium supplements helps your body absorb most of the calcium because stomach acid helps. However, calcium citrate can be absorbed well with or without food
Hi Oh-my. Thanks for your response. I must be more careful with my diet. Tend to neglect it from time to time. I could do better and would prefer by far to get my calcium from a dietary source. I always take the D3 without fail but reduced the calcium as found it hard to take and fear of calcification if the arteries. K2 supposed to be helpful in that regard. I will most likely take AA for a while at least but if reflux becomes an issue then I will have to rethink it.Thanks for your response 🤗
Can you reduce yr pred dose
That’s easier said than done when you have PMR as lkcreedon does. 😊
On Methotrexate for last 14 weeks as a steroid soarer. I think it's starting to help, still to confirm this. Now in 8.5 mg this week (last 3 days) from 9mg which was fine. Did have few PMR twinges this am. Keeping an eye on this. Plan is to stay on 8.5 for a few weeks and then do the DSNS taper from there on in. Fingers crossed it will work 🙏
Hope so..,
I have had p mr and it's not easy but it's doable
Of course it’s doable -but some find it easier than others..😊
It's so much better to get off steroids
I know it’s better to get off steroids - I’ve been off them for 8 years… but your illness has to let you, that’s what I was saying.
It is doable once your PMR has burnt out and gone into remission and many have. However - if the PMR is still active - you can end up very disabled, in constant pain and also at risk of developing other problems due to the unmanaged inflammation. To insinuate people aren't trying to get off isn't helpful. And some can't because of poor adrenal function - then it is essential to life.
Have a look at my story as you may find some ideas there to help you. Also, make sure your doctor has checked you for secondary causes of osteoporosis. It seems that the biggest effect on the bones is early in our pred days, partly because our dose is usually highest then, but I think also because our body adjusts somewhat after a few months. So it would be good to confirm that pred is your only medical risk factor.
And, yes, take Vitamin K2!
healthunlocked.com/pmrgcauk...
osteoporosis.ca/medical-con...
Heron, that is a great read. So interesting and informative. Thanks a mil for that. Also the attachments are if great value. IA on both knees so jogging will be confined to the pool which I find easy enough.Lots of info now which I will print out as a reference copy
Thank you
1) I think taking vit. K might be a good idea. While that vitamin is found in green vegetables, are you getting enough in your normal diet, or would a bit more help?
2) I think it would also be helpful to return to the dose of calcium supplement originally prescribed. Taking vitamins D and K should help put calcium back in your bones - but only if there is enough in your diet.
3) I also took alendronic acid (a bisphosphonate) to protect my bones. I had no problem with acid reflux, but that might have been helped by my daily (10 mg) omeprazole tablets (proton pump inhibitor to regulate stomach acid).
4) Now that you are on methotrexate, are you able to decrease the prednisolone?
It is vitamin K2 not K1 which is a totally different thing - it is confusing, it is like the B vitamins which are all different and do different things, While vit K1 is easy to get from green veg, vit K2 is mainly found in fermented foods such as sauerkraut, natto and kimchi which are not common in diets in the English-speaking world but also in offal, beef, pork, egg yolk - it is fat soluble so lean meat is not useful. It is also produced by the action of bacteria in the gut.
medicalnewstoday.com/articl...
Hi, PMRpro.
Thanks for that helpful clarification. And it is very important, from my perspective, as I eat plenty of green vegetables, but not so much eggs or meat of any kind.
When you say K2 is found in fermented foods, I don't suppose that includes beer or cider? (No, I was just hoping.)
Cheese??? Apple cider vinegar? So cider that going "off" ... Not what you were hoping!
This widens the choice to include cheeses (gouda and blue) and chicken breast.
health.clevelandclinic.org/...
It is also an great example of not trusting google searches without checking - the bit on the search list gives green veg as a good source - and of course that was taking the list of foods for K1, not K2.
Again, thank-you. Yes, I do like salami and cheese: they go nicely with a drop of cider - although I try to keep to moderate amounts.
One interesting point from the link you sent, I might already be getting enough K2 from my gut biome. But, I don't suppose there is an easy way to find out, short of some careful biochemical analysis
Yes I will get Vit K2 and start on it straight away. Im not much for fermented foods. I do like pickled beetroot a lot and balsamic acid is supposed to be good too.
Hi PRL1957! Yes I think the methotrexate may be helping a bit in my reducing the steroid. I'm now at 8 5 mg daily having been in 10mgsfir months and not been able to reduce without pains and aches. I went from 10mg to 9mg for a number of weeks without pain and now on 8.5mg with occasional ache but will persevere on this dose for a few weeks and continue with the slowest DSNS taper. I'm in no rush. Don't want to go back up the steroid dose if possible.As for calcium, well I probably didn't have enough in my diet. That changes now and I'm taking D3 spray all the time since start if 2020. Is it true or not that PPIs can thin the bone as well?
I believe I do need to take a good luck at my diet to reduce the reflux I get every now and again.
I will start the K2 -7 +I think) as well. Tnx for your response
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