Am I being stupid?

[Urtica]

Your expert opinions would be appreciated. I started 15mg pred in Dec 2016 after being diagnosed with PMR. I had Dexascan in Feb 2017 which showed

Neck of Femur TScore: -2.6 ZScore: -0.9, Total Hip TScore -1.9 ZScore: -0.5, Spine TScore -3.0 ZScore: -1.0 Scan interpretation: Vert L1-L4 Osteoporosis, Total Hip - Osteopenia, Neck of Femur - Osteoperosis

I took Alendronic Acid daily for about 9 months but started to have slight trouble swallowing so decided to stop. About 6 months later I mentioned it at a check up with GP and told her I wasn't going to go back on it and she wrote to Hospital for further advice. They advised in February 2018 that I continue bone treatment so I had an infusion which has been fine with no side effects. I am now due for another infusion and I would much prefer not to have this. I have reduced to 1mg of pred and walk on average 2 hours a day, either on the flat or on rocky steps in the hills where I live. I am about to take up swimming again and feel pretty fit most of the time. I have no idea if these results are high or low level osteoporosis but would like to try to improve it by exercise, equally I do not want to risk broken bones! I am not due for another Dexascan until Feb 2020.

Any advice please?

[fmkkm]

Hi,

Just curious, what medicine was the infusion? Was it a different med?

[Urtica in reply to fmkkm]

hi, it was Zoledronic acid I think which is the same.

[Soraya_PMR]

Are you taking vitamins D3 & K2?

[Urtica in reply to Soraya_PMR]

Hi, No, just Adcal once a day

[Soraya_PMR in reply to Urtica]

Ooh-err! Not even Adcal D3?

You need the extra bits to get the calcium firstly absorbed and then sent to your bones rather than the wrong places.

I’ll see if I can find Heron’s thread re improving bones, she’s our expert.

[Soraya_PMR in reply to Soraya_PMR]

healthunlocked.com/pmrgcauk...

[Urtica in reply to Soraya_PMR]

Sorry, brain fog is my excuse! I am on Adcal-D3. Thanks for link, I am now going to read it.

[Soraya_PMR in reply to Urtica]

Good. Was going to say it would be neglectful of your docs if not. Unfortunately the K2 message hasn’t got through to GPs yet! Things grind slowly in the world of medicine

[Urtica in reply to Soraya_PMR]

Thanks for your input. I have read Heron's article and shall investigate the supplements route and the best food to eat. (Not so many croissants from the wonderful bakery in town we have recently moved to!)

[Dancingrosie]

Hi urtica. I’m the same as you. I had t score -3.5 so osteoporosis of the spine. Was given AA but couldn’t tolerate it. I was told must have something to help bones . I was given infusion in 2017 then second 2018 and due third this year with no side effects. I’m currently taking 3mg pred but had to go up for a while due to tender scalp and neuralgia but will go back down slowly. I will have last infusion and was told I won’t be able to have anymore. If osteo p not improved was told another treatment maybe needed. What this means I don’t have a clue. Have to wait and see. I have gca/PMRGCAuk for over 3 years.

[Urtica in reply to Dancingrosie]

Thanks for your reply. I wasn't told the infusion was for only 3 years. I wonder why if it is so effective and safe?!

It is probably wrong but I can't help thinking if I had not had PMR then I would be none the wiser about my bones and would not be taking the 'poison'.

[MhairiP in reply to Urtica]

Oh yes - I'm with you 100%! If I didn't have PMR, I wouldn't have had the scan, so wouldn't have known I've got osteoporosis... and so wouldn't have to take the dreaded AA. Ignorance is bliss!

[Blearyeyed in reply to MhairiP]

It's nice to think that those scans would not have been done or been needed if PMR hadn't happened , but unfortunately that's unlikely.

You may not have had the scans because of PMR related checks , but if your bone density gets bad , and you have osteoporosis or bone fragility for whatever reason eventually you would have had symptoms presenting that meant the scans were done and advice would have been the same .

Steroids isn't the only reason for reductions in bone health for us all.

Using those bone health diet and lifestyle tips via Heron and the links will help reduce the possibility for continuing needs for infusions though for many sufferers.

[Urtica in reply to Blearyeyed]

Thanks

[MhairiP in reply to Blearyeyed]

In my case I can't blame pred for osteoporosis. I had obviously had it for a while without knowing. But back in those days I didn't worry about fractures or having to take AA, but now I do. So in that respect, ignorance was bliss!

[Blearyeyed in reply to MhairiP]

Yes , sometimes ignorance feels like bliss , especially when you are already tired of dealing with PMR.

But , at least you know where you are now , and can use the knowledge to choose the infusions or try the exercise and diet / lifestyle tips instead and see how well they work.

Take care xx

[Thelmarina in reply to MhairiP]

It does have to be said that osteoporosis is no joke either! 🙂

[Casia in reply to Urtica]

I think many people post menopause are osteopoenic and osteoporotic without realising and continue without too many problems. Personally I have refused bisphosphonates as there is a view that they actually prevent your bones from regenerating which they naturally do and don’t particularly prevent fractures. I was diagnosed with very borderline osteoporosis a few years ago after getting a coeliac diagnosis. I took calcium and continued with walking, Pilates etc and 3 years later my Dexa showed a reversal of the osteo. The doctor was surprised. Now I’ve been on pred for 2.5 years and I’m due my next scan this month but I have no intention of taking these drugs and will do my utmost not to. I’m on such a low dose of pred (2mg) I hope that my bones aren’t too badly affected. Cross fingers. There’s a very good website saveourbones.com which gives lots of tips and natural remedies.

[Urtica in reply to Casia]

I hope your next scan is good. I have decided not to have another infusion and will learn as much as I can about improving my bones by diet and exercise and see what my next scan shows.

[Casia in reply to Urtica]

I forgot to add I take 1000 mg most days.

[Urtica in reply to Casia]

Hi, you say you took calcium. What strength was this. Do you buy it online ?

[Casia in reply to Urtica]

I take calcium citrate as it’s easier to swallow than the large tablets, vitamin K2 and vitamin D. I get them online.

[sandrathecat in reply to Casia]

Morning everyone. I am interested in the mention of Vit K2 as I have not heard of this and wonder if I should be taking it as I have been on pred for two years. Thanks for any advice.

[Casia in reply to sandrathecat]

Hello! I started taking vitamin K2 as I read on this forum it’s important to take it with calcium . I don’t remember why but I know it was based on sound research. Perhaps someone else can enlighten us?

[PMRpro Ambassador in reply to Casia]

It is said to ensure the calcium goes to the bones rather than into artery walls and other places calcium is less helpful.

[Blearyeyed in reply to Casia]

I definitely agree on that.

It's much better to try Herons tips and use exercise and diet to restore the bone health than have to take AA or other infusions.

Unless the scan results are very low , trying to use other methods would be my personal choice .

Glad that has worked for you too , alot of people have enjoyed the same results with more natural methods.

Hugs x

[HeronNS in reply to Dancingrosie]

What was your infusion?

[Urtica in reply to HeronNS]

Zoledronic I think

[HeronNS in reply to Urtica]

I don't think Dancingrosie actually said did she?

[Rache]

This is my first post but I understand your dilemma. I was recently diagnosed with PMR and am currently on 12.25 prednisilone. Prior to my diagnosis I knew I had osteopaenia. My last scan about 2 years ago showed -2.2 everywhere. I am due another one soon and have been told it is likely I will have moved into the osteoporosis category. I have been offered a prescription for Alendronic Acid but have not started it yet. I have just joined this site and seeing so much negative information about Alendronic Acid etc is really worrying me.

I agree it shouldn’t be taken unless it’s necessary and a scan should be arranged first to assess your bones. I admire people who are doing so much, walking with weighted vests etc. but I really don’t feel up to doing all this at the moment. I fractured my shoulder (proximal humerus) a few years ago while I was having radiotherapy for breast cancer and was unable to raise my arm to continue treatment for several weeks. This was very concerning (as well as very painful!) as it has increased my future cancer risk. At the fracture clinic, I was advised to have a dexa scan but I already knew I had osteopaenia which may have contributed to the fracture as it was a ‘simple’ fall, not from a height. By the way, I was told my osteopaenia would not affect the healing process of my fracture and it didn’t. Am also taking lanzoprazole which I believe can interfere with calcium absorption.

I have always tried to avoid unnecessary medication but I suppose there comes a time when we just have to bite the bullet!

[Urtica in reply to Rache]

Hi Thanks for your input. It's a pity we don't have a crystal ball to help us with these decisions. I am unsure what I am going to do. I might try to improve my scores as Heron did and if I have got worse at my next Decasan then I will have to think again.

[Rache]

Hi Urtica, could your doctor maybe request an earlier scan so you know the facts? It seems like there will be a three year gap between your scans - surely they could refer you for an earlier one. I have a problem with some oesophagitis which dates from my chest radiotherapy so am thinking maybe the infusion would be better for me. Did you have any side effects at all from it?

[Rache]

Sorry, just re-read your original post and see that you didn’t have side effects from infusion.

[Daffodilia]

I think you need to go to a PMR support group for advice in person if GP not able to help

[Hildalew]

Hi Urtica,

About K2

I have an appointment next week with my rheumy where, if he asks, I will have to confess that I have not been taking the Alendronic Acid he prescribed when I last saw him 6 months ago. (The dexa scan after he prescribed it showed that I had ostopoenia so his letter to my GP's practice (I did not know the name of my, theoretically, 'allocated' GP when I saw him.) confirmed the prescribing of AA. In my researches for reasons for not taking it, or rather for saying that I thought there was good evidence for alternative therapies for calcium loss in PMR I came across the following article about K2.

ncbi.nlm.nih.gov/pmc/articl...

Main Message

Vitamin K2 may be a useful adjunct for the treatment of osteoporosis, along with vitamin D and calcium, rivaling bisphosphonate therapy without toxicity. It may also significantly reduce morbidity and mortality in cardiovascular health by reducing vascular calcification. Vitamin K2 appears promising in the areas of diabetes, cancer, and osteoarthritis. Vitamin K use in warfarin therapy is safe and may improve INR control, although a dosage adjustment is required.

I have found one or two other such encouraging references but I'm not sure where to find them in my computer, if I have kept them, so I would earnestly encourage you to KEEP LOOKING.

[skb4skb in reply to Hildalew]

Thanks for posting this article on K2. GCA diagnosis and as I travel this road I feel I'm in the Twilight Zone of unknowns. I seem to have side effects to the standard treatments in addition to the diagnosis. I've always had a good diet, exercise and a positive upbeat attitude..amazing how within 48 hours none of this seemed enough. I also try to stay away from additional medication both over the counter and Rx yet it seems from research both my and others (who I greatly appreciate) have the possibility of making it to the finish line faster and with better results. Currently tapering the Prednisone. I just hope and pray there is actually a finish line for me

[Hildalew]

Fractures with AA

Me again. one of the first things I learned about AA was that if you have a fracture after you've been taking AA it is likely to be worse than if you hadn't taken it because AA, in effect, stiffens the bone and makes it snap/shatter (my language) more easily*

People on this forum have posted about practising exercises to improve their balance.

*I guess that may be different if you already have osteoporosis and already have fragile bones.

[Urtica in reply to Hildalew]

Hi, thanks for your posts. It is good to hear peoples' thoughts and experienes so I can make an informed decision. I have a lot to learn and am not sure my brain can cope!

[Libra-girl]

My doctor prescribed AA for me as a matte of course because I'm on preds. I asked for a dexa scan to determine where my bones were as soon as I started the steroids but was refused because '...only authorise tests if it will change the recommended treatment.' Regardless of what my scan might have showed the dr would still want me to take AA even if my bone health/density was good. It didn't make a whole lot of sense to me to take a drug if I possibly didn't need it but I couldn't convince her. As a result I have no idea what state my bones are in and I have refused to take the AA because of the possible side effects. I'm 48 and have only just started menopause. I am active and walk/exercise daily. I am taking lots of supplements (Cal, K, D, Omega 3 and Mg) and concentrate on having a good diet. I suppose I might regret it later but for now that's what I'm doing.

[Urtica in reply to Libra-girl]

Hi, it sounds as if you are doing the right things and you have to decide for yourself what seems right. At least that it what I am trying to do. Good Luck.

[yogabonnie]

You sound fit and strong. I had osteoporosis before taking prednisone... and I have NOT taken AA or anything other than calcium D3 and Vit K27 and some magnesium and I do HEEL drops (youtube it) and when I was diagnosed with PMR started taking adult (very adult) beginner TAP because I read it was great for balance, brains, and bones! And apparently it is. Even with a year and 1/2 of prednisone (still taking at 4.5) my BONES are NOT worse. in fact.......... drum roll please......... .001 better! Keep on walking and swimming and consider a tap class. Add that Vit K2 so the calcium lays down on the bone. Onward!!!

[Urtica in reply to yogabonnie]

Hi, will definitedly look up HEEL drops, not sure about TAP! Will also try Pilates or similar. I have bought some Vit K2 tablets today so fingers crossed I can manage and improve my bone density.