I just can’ t believe it. My new dexa came back worse than the last one, and this is after 2 years on Forteo. Now I have to take reclast and that is very scary. After 9 years of dealing with this,and many fractures, I am very tired of it all.
How much can a person take🫨
Sorry for the rant
Sorry to hear that. Extremely disappointing for you. Rant away!!
Good afternoon,
There is a new drug been cleared by NICE in August and will become available around now. Its called abaloparatide. I understand that it has less side effects than some other Bone building drugs. The Royal Osteoporosis Society is well worth joining to get up to date information in the UK and to find local groups
I hope before all this started you were at least tested for "secondary causes of osteoporosis"? I like to send people a couple of links, one about secondary causes and the other something that should be helpful both for people like yourself who have to take a medication, but also for those who are in a position where non-drug means can be helpful. Perhaps you'll find some ideas there? 🍀
Secondary causes of osteoporosis:
osteoporosis.ca/medical-con...
My story:
healthunlocked.com/pmrgcauk...
Thank you for your reply. I have looked at the info you offered. Thanks for sharing. I will study it. I don't seem to have any other condition except arthritis and pmr.
Thought I'd share because you've shown no improvement on the current med. For example, trouble with parathyroid glands (nothing to do with thyroid btw, just their position in the body) can mean no medication will work until the problem is fixed. I expect that this would have been checked, but worth looking into if you aren't sure.
Sounds a bit cockeyed to me. Why use Forteo first and now switch to Reclast (zolendronic acid)?
However - what is scary about zolendronic acid? I had evidence of a spinal compression fracture last New Year so finally started a bisphosphonate (I had never had a dexascan that justified being put on one). The choice was zolendronic acid infusion. It did cause minor and brief atrial arrythmias but that has cleared up and otherwise I have no other problems. I find the concept of Forteo far scarier.
Thanks for the reply. Forteo builds bone and reclast saves the bone you just built up. Reclast does not build bone. Unfortunately I waited 2 months after finishing the forteo and lost bone in that time. I had no trouble with the forte. It did not carry the femur fracture risks the other did.
But what I'm saying is - it isn't scary. Why didn't your doctor give you an infusion BEFORE you finally stopped the Forteo?
And there are other newer options now.
The protocol is to finish the forteo and start the infusion immediately after. What newer options?
Romososumab/Evenity is being used more. I think it has been around a bit longer in the USA than in the UK but they seem quite enthusiastic about it. But your doctors should know.
Evenity comes with a black box warning. Can increase risk of heart attack, stroke and death.
So do NSAIDs
Well I didn't know there was an actual black box warning but have avoided ibuprofen for the reason it is more likely than aspirin to cause stroke. Easier to directly protect stomach than brain!
Fortunately most people will only use NSAID sporadically to treat something like a headache or other short term condition. Not like a bone med you could be on for years.
For those following this thread, here's some information. Note they specifically mention non-aspirin NSAIDs. So glad that I've been avoiding the ones mentioned! I was prescribed Celecobix for pain prior to PMR diagnosis and never filled that prescription.
fda.gov/drugs/drug-safety-a...
The anaesthetist who does the Pain Clinic is very itchy about painkillers, virtually nothing we could find for me that worked that she'd allow. But if a couple of mg pred helps, I'm actually almost encouraged to use it!
After all the years we've been on pred, and still here and doing as well as can be expected for our age, I'm certainly in the pro-low dose pred camp vs any other longterm painkiller, for PMR at any rate, (A few years ago I would never have believed I'd think that 
) It will be interesting to find out if my doctor feels the same way about my suggesting a return to a couple mg pred for my skin condition, which is worsening, and is almost certainly auto-immune.
If you aren't already following the bone health communities here, I recommend you do. They share information about experience with various drugs which you may find interesting and helpful. Seems like your doctor's error was in not making sure you got the stabilising medication soon enough. Evenity, like Prolia and Forteo, would also need another drug if discontinued, and frankly its black box warning would make me try very hard to find something else if it were offered to me.
So sorry for your experience. I was on Boniva quarterly infusions for couple of years & my dexa was way worse. Now had 2 annual reclast infusions. Some improvement in spine, hip same & they don't test both hips anymore so my worst hip with t score of -3.3 two years ago, I have no idea if improvement. All frustrating but do your research & listen to experienced ppl here. I started with giant cell arteritis and esophagitis & gradually added more medical issues. Have a pacemaker for 2nd degree heart block, lifelong coumadin for 3 dvt in leg. Just had lumbar root block & 6 weeks ago cervical epidural. But, I'm still walking, talking & living b/c life moves past you if you don't stay in the game. Sure didn't know old age is so painful, and I was a supposed expert in the field of gerontology. Ha,ha. I was the "expert" in the field of gerontology when I was in my 30's. We'll, Anyway, hope you can get some answers. Great doctors really help but so far and few between. I've been lucky with drs.
Sorry you're going thru this. I'm due for my second annual Reclast infusion this month. I'm reassured by my OP Specialist that the side effects, i.e. bone necrosis, etc. are extremely rare. Hoping the second one is more successful than the first, as I'm still fracturing. Evenity is extremely expensive and in Nova Scotia, as I was informed, it is extremely difficult to get a different one covered by healthcare. When I asked about Evenity, she asked me if I was rich. I had no side effects from my first Reclast (Zoledronic Acid) infusion; so far at least. As far as how much we can take? Don't ask. They've just added Fibromyalgia to my list. One day at time. 🌻🌷
The care costs in the long run for multiple fragility fractures FAR outweigh the cost of Evenity - even the NHS realises that!
There are "special circumstances" and a "meet the criteria" referrals that I'm sure she could give me. She's one of the better known OP specialists in Canada, with awards for papers and such. What grinds my gears with my caregivers is that it seems like I have to walk them through every step and if I don't ask the right question, the right way, I hit a wall. Like asking for an xray because I'm pretty sure I have another fracture. "What good would knowing do?" was her response. So I explained that I can deal with things much better if I know. So, in knowing, I've ordered myself a lightweight back brace on line. It may or may not help, but at least I've tried. May I ask Pro, if you're doing any muscle building for your back, and if so what?
Sorry to hear this.
And are you taking vit D3 with K2.?I do think it might help.
I am taking it all and have been for past 20+ years
Have you looked into eating more fatty meat as opposed to drugs (most of which have adverse side effects)? Here's a super short video from a doctor:
youtu.be/2xGdiOufinc?si=g5o...
Think Linny3 situation has gone beyond that…
One way to find out.
If you read this and previous posts you will see that author has had osteoporosis and many fractures over a number of years… so it is too late for your suggestion. Even if it was feasible. To suggest ditching drugs at this stage could be damaging.
I, like you, I suspect, am not a doctor. But I have done quite a bit of studying. It is well-documented that many drugs, including those used to treat osteoporosis, can make bone health worse, causing brittle bones and higher risk of fracture. It is never "too late" eat a healthy diet. At this point, what does she have to lose?
I’m not a doctor…but at the end of the days it’s Linny3 decision, so suggest we leave it there.
Yes, especially since this is a forum for the exhange of ideas.
Hi Linny3, the same has just happened to me - bone density worse after Forteo. Was told only 4% of people fail to respond (I think it's even less as it presumably includes people who stopped injecting) but the doctor had no suggestions as to why. I have also been advised to start on Reclast now, though alendronic acid (another bisphosphonate) also failed to do anything after more than 4 years.Incidentally, although my scores are terrible (average -3.8), I have never broken a bone, despite knocks and one bad fall, although I have had one collapsed vertebra. Bone strength is different from bone density, although they all swear by DXA. I sometimes wonder if I even need to be on such strong medication. I am also 'only' 65, so there is the constant worry of what comes next.
Anyway, just wanted to say you're not alone.
Dexa Scan
Private Dexa Scan 
Dexa Scan
Dexa Scan Results/Quandry
Dexa scan refusal 
