I'm back
Posted , 14 users are following.
My PMR is back. It went in to remission May 2019 and it's back and it's not even been a year. And during the 2.5 years I was on prednisone I developed a bad case of osteoporosis and ended up with 10 broken bones in one years time. I've sent my rheumatologist an email but I was hoping for some advice. Like what anti-inflammatory diet do you recommend. And does methotrexate work to lower inflammatory? Is there anything else I can do that I have thought of?
BTW my last inflammatory blood test was just last month and they were
SED 42
CRP 2.6
At that time I wasn't symptomatic.
0 likes, 49 replies
Kdemers amkoffee
Posted
I hated Methotrexate--husband had to give me shots on Sunday--miserable for 3 days. On the otherhand if they are worried about your bones....Just started some K2 vitamin (180 mg) plus aronia Berry and ginger. Woman claimed it really helped her bone density and her body work with calcium. (Must say this was only today and from a random woman in COSTCO)
I also took an antiviral for a year and I think it kept PMR and GCA at bay. I am at a loss at what to say except that whatever prednisone you take should be at a low dose. I hope that bone can recover. I know that after I did weight bearing exercises my bone density actually improved.
Keep us posted and good luck to you.
amkoffee Kdemers
Posted
I took methotrexate in pill form for just a month and don't like it. If it's my only option I may do it again. I can't do weight bearing exercise because my back is a big mess. I did get Reclase back in August for my osteoporosis and it's just a once a year thing. I'll ask my doctor about K2. My only concern with that is that it thickens your blood and I am already taking a blood thinner because I've had 2 stokes. But thank you for the info.
ptolemy amkoffee
Edited
Oh no I am so sorry, what a rotten thing to happen.
nick67069 amkoffee
Posted
Just like you never left 😃. I have had PMR for more then 4 years and still take prednisone without negative side effects on the bones. I think that there is really no substitute for prednisone . People had mixed experience with methotrexate . Few were helped, but mostly not. It is used to help reduce steroids more quickly, but it has it's own list of side effects. I had not tried it, so wont talk more about it.
Most antiinflamatory diets are based on low carb (sugar) diets. What helps bones is added vit D and K2 either in supplement or natural form. That coupled with weight bearing activity (walk, etc) will help your bones. There is a lot of info on this site about both subjects.
jillian92038 amkoffee
Posted
My gosh I am so sorry that you are going through such a rough time. 10 broken bones in a year must be so awful. I so wish I could offer advice but unfortunately have none. Just wanted to offer my thoughts and wishes for a better year to come. Hope you have lots of events/opportunities to smile too . Best wishes . x
Reeceregan amkoffee
Edited
I'm afraid I am your twin. 2.5 years on pred for PMR and GCA, remission in May 2019.....and severe osteoporosis. .....amongst other nasty pred-induced side effects; ( cataract surgery, glaucoma stents, hair loss, I could go on but won't) although no broken bones. I was then diagnosed with seronegative RA and although now pred free, I take a cocktail of Prolia bi-annual injections for the osteo, and weekly methotrexate for the RA. I have had 5 Prolia injections since Feb 2018, no side effects, and MTX since October 2019, also no side effects. (must take Folic Acid while on MTX to counteract side effects). I also take calcium, K2, D3, magnesium, Q10, Tumeric and Fish Oil. I eat well, trying to cut processed sugars as much as possible, but I still have an occassional pig out. Alcohol is almost non existant because of the MTX but an occasional wine is allowed providing my monthly liver function test is clear.
My 2 yearly follow up Dexa scan last month showed a fairly substantial improvement in the T scores for osteo, some going from the osteoporosis range back to the osteopenia range...just.
I can only do limited strengthening excercises depending on whether my RA is acting up or not, but most days I can tune in to Spotify music and dance around the house like no one is watching....its a bit like a wild gypsy crossed with a lame duck.....but its fun and gets the joints and muscles tingling. I also walk as much as possible but that irregular. To give you an idea of my T scores:
NOV 2017 JAN 2020
lumbar spine-3.3 -2.5
left hip neck -3.7 -3.3
total hip -4.0-3.4
right hip neck -3.5-2.5
total hip -3.4-2.7
my left distal radius was not done in 2017 but is now -4.8. I can only shudder at what it may have been 2 years ago prior to Prolia.
Good luck whatever you decide but just remember to look down when you walk, and look about 2m in front of you. If you do find yourself tripping and falling try to flop and roll, don't brace yourself or put your hands out to break the fall, just go into it. You don't want to be a lame duck ......
Kdemers Reeceregan
Edited
What apowerful and detailed response. I must print it out to remember the precise details. I see the K2 listed. The lady at COSTCO claimed the doctor could bot believe how her T scores inproved. Thank you for all of your information.
EileenH Reeceregan
Posted
What is the intention with the Prolia? will you remain in it indefinitely or switch to a bisphosphonate ?
I ask after writing this reply elsewhere:
https://healthunlocked.com/pmrgcauk/posts/142712534/prolia.-info-please.?responses=142712816
and wonder if you have been given this information?
peggy_56092 EileenH
Posted
Do you have any information on Reclast?
EileenH peggy_56092
Posted
No more than you could find by googling it. I happened to have done some research for someone else on the Prolia/denosumab question - though zolendronic acid (Reclast) seems to be the recommended first line before switching to Prolia.
Reeceregan EileenH
Posted
Hi Eileen,
I haven't seen the rheumatologist since the second Dexa scan, so on my next visit in April I had intended to discuss what's next for me, although at this stage I'm guessing it's staying on Prolia a while yet, probably at least to the 5 year mark. He originally said 3 years, but after reading many articles I questioned him about this just before the second injection and he admitted it would now be for life, or "something" else.
Reeceregan
Posted
I should clarify that I wasn't given that information to start with, and although reading as much about it as I could, I honestly don't remember reading back then that if you stop taking it you are at higher fracture risk etc. I did try to refuse the Prolia until he went through all my risk factors and explained my scores. He didn't believe pred had caused the osteo as I had only been on it 6 months at the time of the first scan but it was only going to get worse while taking it. I was quite frightened really, and wasn't game NOT to. For me it was damned if you do and damned if you don't situation....and "it was only for 3 years" so I thought it the best way to go at the time.
amkoffee Reeceregan
Posted
Well I live in the US and am on Medicare. The Prolia was cheaper by far then the Reclase a difference between $600 per year for the Prolia or over $1000 a year for Reclase. And Reclase will make you feel like you have the flu for a day or two. I ran a fever, ached all over and just generally ill. The reason I could do Reclase is because the hospital charity paid for it for me. I had no side effects from the Prolia. And I haven't had a Dexiscan since April 2018. Medicare requires one ever 2 years so I'm due for one soon.
Reeceregan amkoffee
Posted
We are lucky here in Aus, $40 for the twice a year Prolia script, injection given by the nurse after the dr checks things first, no cost for the dr visit or the nurse. The weekly MTX (self injection) is only $10 per injection. Dexa scan every two years free if already diagnosed with osteoporosis and on treatment.
nick67069 amkoffee
Posted
Sad to say but in US patient is the profit opportunity... The most expensive health"care" in the world. Those medications are the same, companies that make them are the same, but they charge much more in US because they can. Hopefully next election brings someone in who wants to change things for the better.
EileenH nick67069
Posted
And are intent on doing the same in the UK now the NHS is a more minor player than with EU back-up.
Plus not just the most expensive - but with poorer outcomes for most things. Fabulous when you want something difficult and money is no problem. Otherwise - tough ...
EileenH Reeceregan
Posted
The interesting thing I found somewhere else - the link is a bit further down that HU thread - is that it should probably be zolendronate FIRST, then Prolia for speedy bone building and then either Prolia for life or bisphosphonates again. Starting with ZA seems to reduce the rebound effect when the Prolia is stopped.
Suppose they think we'll be too scared if we think it will be for life ...
Reeceregan EileenH
Posted
I just wish that research and option was around when I was first diagnosed. I always had in the back of my mind that the rheumy was as shocked by the scores etc as I was and he felt there was no time to waste. To say I was worried at the beginning is an understand but I've accepted it now.
EileenH Reeceregan
Edited
It probably was around in the ether if you have been on the Prolia for 3 years - but being disputed wildly I suspect. Research does take a long time to filter through to real life - OH has had a gout attack at the weekend. He didn't get much sympathy, he's had milder attacks before, wouldn't go to the GP to get uric acid tested but they found it in hospital recently and put him on allopurinol. Then he forgot to take it for 3 days. It has always been colchicine to treat acute gout - but it causes havoc with the gut, NSAIDs replaced it as first line, not much better for older, frailer, multimorbid patients so a study was done some time ago and it was found that a few days of high dose pred was just as effective and safer for these patients. But the rheumy nurse told me this morning that wasn't the right way to treat it. Really? This study was widely disseminated in 2008!!!!
But we are criticised for using Dr Google.
EileenH Reeceregan
Posted
Just to add:
The earliest publication I can find is October 2016/February 2017:
https://academic.oup.com/jcem/article/102/2/354/2972082
It was being flagged up about 6 years after it began to be widely used after approval.
Reeceregan EileenH
Posted
My goodness! I think if I had read that particular paper when first diagnosed November 2017 I would have begged for biophosphonats instead. That is an incredibly scary piece of paper. I remember asking if there was anything else but he said none that was as effective and Prolia had less side effects and seemed to be more tolerated by patients. His initial suggestion of only 3 year duration seemed acceptable to me at the time. My t scores have improved significantly, although my BMD is still very low , but I intended to ask him on the next visit in April about where to from here.
amkoffee Reeceregan
Posted
Great to hear from an Aussie. Not that I've ever been but I've a good friend that lives in Queensland. Where do you live? Were you effected by the fires?
amkoffee nick67069
Posted
I hope so because our country has really suffered since the last election. But I don't expect affordable health care to come in my life time.
amkoffee EileenH
Posted
Yes I hear horror stories of patients waiting 6 months for a simple MRI or other diagnostic services. I don't know which is worse, the waiting or the money.
Reeceregan amkoffee
Posted
How lovely of you to ask, thank you. I'm in NSW, on a property just on the outskirts of Newcastle. We were safe as far as the fires not being directly near our home(it has in the past) but they were not far, the closest was about 15 klms away in any direction. Roads were blocked, powerlines coming down, the winds were horendous, and the smoke just choked the air so it was a struggle to breath. There was so much thick dense smoke all over Australia even if the fires were no where near you. The smoke even made its way from Australia to NZ.
amkoffee Reeceregan
Posted
Gosh that sounds awful. My friend in New Queensland might not have experienced that because she never mentioned the air quality.