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.
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.
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.
Oh no I am so sorry, what a rotten thing to happen.
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.
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
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 ......
It does seem that once PMR grabs us we are sitting on a time bomb. I've been "clear" now for more than six years but take nothing for granted.
Can only offer sympathy and best wishes. No experience of Methotrexate. Have been lucky bone wise but no idea why. My diet is ordinary but absolutely no highly processed food, fish a couple of times a week ditto meat, a lot of fruit and home grown veg. avoid white flour, can't seem to digest it. Only ever had one takeaway brought in by a guest.
Sorry to hear that - and what a shame to see you back, in the nicest possible way though.
Are you on medication for the osteoporosis?
Would Actemra be an option for you?
Vits K2 and K1 are different, K2 has very little do with blood clotting and it depends on what sort of anticoagulant you are on.
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.
Amkoffee, I read the supplements list the same as I been taking, but I also take MSM. Good luck on the rest of your PMR journey, try and stay active don't forget walking is good for your bones. 🙂
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?
what is MSM?
https://www.webmd.com/vitamins-and-supplements/msm-methylsulfonylmethane-uses-and-risks#1
Do you have any information on Reclast?
Thank you, Eileen. I don't think I'll be trying it.
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.
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.
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.
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.