Guys, this is going to be a long one....I need help, but things are so complicated that I feel as if I'd better explain the background to this question fairly fully, so here goes;
I saw my gp this week about treatment for osteoporosis. She & I have been discussing the many reasons for concern regarding my bone density + the possible treatment regimes including bisphosphonates since 2001. Back then my osteoporosis risk factors were so high that our local rheumatology clinic had advised 3 yearly dexa bone density scans. This was way before I'd taken any oral steroids....way before my version of lupus was diagnosed by another top rheumatology dept a bit further away, & treatment for lupus began in 2011 (so far this treatment is helping me feel better than I have since the 1970s when I was 20-30)
before long several NHS 3 yearly dexa scans established I had osteopenia & a high rate of loss of bone density, so my local rheumatology dept recommended bisphosphonates via their dexa scan report letter to my gp. I tried bonviva but it aggravated my chronic upper GI conditions, so I stopped & my GP agreed I could try lifestyle methods to slow loss of bone density (nutrition, supplements, excercise & weight bearing activity etc). Meanwhile a lifetime of untreated SLE was giving me major symptoms in my feet & legs which severely limited my weight bearing activities
Ever since 2011 when my lupus was recognised & treatment began, I've been reminding my GP & rheumatology clinic that my next 3 yearly dexa scan would be due this year. So, Rheumatology arranged this scan, which I had on oct 1. During the scanning process, the dexa scan tech noticed something strange on screen in my abdomen to the left of my spine & asked me what it could be, saying did I have kidney stones or something. This week the dexa report finally came through & I saw my GP who gave me a copy.
In this report there is no mention of the "something strange" the tech had asked me about. But the report scan results indicate my femur is now osteoporotic with a T score of -2.5, and rheumatology briefly acknowledges that although IV bisphosphonates are appropriate due to my chronic upper GI conditions, first my GP should try me on oral bisphosphonates, + make sure I avoid smoking & drinking etc etc. (i.e. Sheesh, that's all the lifestyle stuff I've been conscientiously practicing since 2001 when my bone density became a concern), AND rheumatology makes no mention of my risk of osteonecrosis of the jaw due to my history of osteomyelitis treatment in which their was closely involved during my first year on lupus meds
Well, my reaction is:
Before I start any bisphosphonate treatment, I need to see rheumatology to discuss the character of my individual version of bone density issues. This discussion should take all relevant factors into consideration including:
-the underlying causes of my loss of bone density
-my chronic GI reactivity & jawbone osteomyelitis etc
-the prescription meds I'm on for lupus + secondary conditions (hydroxy, myco, pred tapers, amitriptyline + various steroid topicals & antibiotics) & their interaction with bisphosphonates
-what was that bone scan tech seeing on screen (do I need an ultra sound scan to check for stones....and if stones are there what is their possible significance re calcium absorption?)
- etc etc etc
So, it's clear from rheumatology's dexa scan report that they are happy to leave my GP to discuss all this with me. But my feeling is that although my GP really is great and v helpful and reasonably expert in my case, really I need to discuss this whole bone density subject with rheumatology before I try any osteoporosis treatment....because after all, I am a complicated case with outstanding questions and they are the experts.
i see rheumatology for my 3 monthly clinic in late December. Meanwhile my GP agrees I need to avoid oral bisphosphonates due to my chronic GI conditions, so she immediately is referring me to rheumatology's metabolic bone unit where I'll be assessed for IV bisphosphonates treatment.
As you can see, I'm trying hard to think this thing through AND take into account the restrictions imposed on my drs by NHS protocols & pressures etc.
I'd be very grateful for comments & advice from anyone who has experience of this sort of thing....especially thoughts re whether I should feel confident that it is reasonable & appropriate to get rheumatology to discuss all this with me, rather than just my GP. I feel a bit silly even wondering if this is appropriate, but my lifetime of being bullied by drs until only relatively recently has turned me into a very cautious but increasingly assertive & confident 61 year old who believes that prior planning makes for best performance & results....so, here I am asking you for help in planning my next move on all this....
Thanks in advance to all who've managed to read through all that....
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Barnclown
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I appreciate your dilemma! I don't have an answer but a few things stand out for me.
Whatever happens you must get some treatment for your oesteopenia, the pain associated with Lupus is nothing compared to the pain that oesteoporosis and associated fractures cause.
If you feel that your GP hasn't the appropriate experience to help you make decisions re the best treatment then it's totally reasonable and appropriate to discuss it with your Rheumy. Your jaw oesteo myelitis complicates the issue, have you ever had any max fax input?
Good luck with it all. Unfortunately we have to develop the hide of a rhino and push for all we are worth to get the best care from the NHS these days, things very rarely fall neatly into place!
Thanks so much Keyes! Your reply does help. I need input like yours from forum friends to help me believe in my own instincts. I agree: I really do need to engage with my Drs to negotiate the right treatment for my osteoporosis, even if my femur T score of -2.5 is only just in the osteoporosis range....despite all my efforts, the rate at which I've been loosing density since 2001 has been unusually rapid, which is not good. And I've seen close family cope with osteoporosis fractures...yes, these really are dreadful
Yes, during my 5 months in 2011 of daily antibiotics treatment for osteomyelitis of the jaw, I saw a lot of drs & consultants + had lots of tests. I saw: : my dentist, my oral surgeon, rheumatology, a maxillo facial consultant & ENT. because all these specialities needed to give their input on my case.
Now we know this osteomyelitis probably has been a long & drawn out experience which began in the early 1990s with root canal on a molar that never totally was successful. But the jaw bone aspect of the problem wasn't confirmed until 2011 just after my lupus treatment began
I recently amazed the osteoporosis department of a major center by graduating from osteoporosis to osteopenia with strontium citrate. I was expecting them to put me on a drug for it, but the chief doctor (there were three in a tiny room ) shocked the others by telling them II should just keep taking it. I saw the two younger ones look at him in amazement and he said "well, it's working." There' a version of this sold by prescription in Europe called strontium ranalate. There are a number of things that can be done to actually bring back some bone, including vitamin D, vitamin k2 and excersize. Even standing on one foot three times a day is supposed to improve bone health. But I would look up natural treatments on line. I do use steroids in low doses periodically, but I believe I have osteoporosis because I have lupus that goes after my nerves (neuropathy). All the drugs for osteoporosis seem to have awful side effects, so Im glad I found an alternative that really did work. By the way, I have had a number of fractures. I broke my ankle two weeks ago. lupus hurts worse!
annNY: this is good news (except for your breakages). and many many thanks for these tips!
i will look into all strontiums especially and definitely mention this at my rheumatology appt. plus I'll be phoning the National Osteoporosis Helpline once i've finished this round of research, and i'll see what they have to say about brit use of all forms of strontium
i am fairly knowledgeable about lifestyle techniques of building bone, because i've been avidly researching this since 2001...and since then have been doing all i can re diet & supplements...but weight bearing exercise has been a prob until this past year's daily rehab regime (for SLE tendon tightening causing club feet) + in jan 2014 i started myco which has also helped these tendons to stretch out again.....which means that finally, after 8 years of severe limitations, i can actually stand on my feet & walk without toppling over (ok, I used a cane most of the time) + dreadful pain (hooray).
I'm curious: how is neurological lupus implicated in bone density loss? Like you my lupus goes after my neurological function, and my cerebral function too...some symptoms of which I've found respond v well to 4 week low dose 10mg pred tapers, but rheumatology don't want me on pred full time, so instead put me on daily 1000mg mycophenolate cellcept which mainly keeps the most spooky of my NC symptoms damped down....and when they flare (usually because I've pushed my limits too far) I'm allowed up to 3 of those pred tapers per year. In 2014 I've only had to take 2 of these tapers...which must be somewhat sparing my bones. I've read about the USA FDA not approving myco for lupus....I'm well aware of the reservations some bodies have about myco, but I'm grateful to it for giving me the best year of my life since the 1970s...
I've had a lot of fatigue these last two years, so I wasn't doing much exercise at all, but with strontium, I did build bone. Most of the drugs that are available just stop bone loss, and then have bad side effects, including fracture. So as far as I'm concerned, this is a case where the natural route seems to be the better route. The doctor also asked me if I ate nuts, which I do. I don't know what nuts have to do with it. I just like nuts.
I'm a nut person too! And yes I also favour the natural route...which nuts do you eat most?
Yes, I've been following the debates & developments re bisphosphonate treatment closely since 2001 when my bones saga began to hot up....and feeling relieved I wasn't on these relatively new (back then) cutting edge meds: for instance, you're referring to the fact that now the standard protocol is for patients to be taken off bisphosphonates after only a few years due to various progressive serious side effects including predispositions to weird types of fracture?
After replying to you the first time, I checked my notes from my chat with the NOS helpline earlier this week: the nurse actually urged me to ask rheumatology about strontium, but warned me specialists have reservations due to cardiovascular risk...but I will still talk to rheumatology about strontium (although I have infant onset heart murmur & immediate family history of cardiac disease & I'm Ehlers Danlos-type globally hypermobile...ARGH)
Hmm, I didn't know there was any cardiovascular risk. I do know that in some places there is naturally more strontium in the water, and they found there were fewer cavities there. I think that is where the research began. I did have one episode of something likely pericarditis, but it was relatively mild, since they didn't see any fluid. Now I seem to have some kind of rhythm abnormality that I don't understand and don't know if it is lupus related. However, I don't seem to have any CAD. I also don't take it every day, since the bottle seems to move around the house.
I wonder if it is the ranalate that makes the drug patentable, versus the natural form of citrate.
The other day on the phone the NOS helpline nurse was vvv keen on strontium ranelate (protelos) for me, but said the cardio issues would be addressed by my drs. She vvv much felt this was THE osteoporosis med for me. I have downloaded the NOS leaflet on strontium renelate.
So i'm extra glad you've replied about strontium. the nurse was a bit concerned whether I could cope with the rule re taking it 2 hours after food, but we felt that would be easy before bed...what do you do?
I just try to take it spaced from when I eat something calcium rich. If I just have toast with butter in the morning I take it in the morning. I all gets complicated since I take synthroid too. A lot of people do take it at night. But I guess I've done all right with the chemistry set that is my body, since it did work for me.
I have osteoporosis and take Alendronic acid oral solution once a week. I have never had any problem taking it. The key is to keep your upper body upright for about an hour and having a glass of water straight after taking the alendronic acid. I usually sit at my table to maintain a good body position rather than sitting on the settee, and read the paper or a magazine.
I should be having my next bone density scan very soon as I have them every 2 years. It will be interesting to see whether my level has dropped or not. I was -2.8.
Btw I have lupus (over 20 years) and Hughes Syndrome. Apart from the Alendronic acid, I take Hydroxy, warfarin and statins. I refused to take a short course of steroids because of the osteoporosis.
This is good news! Thanks jane. I know others who successfully manage their oral Bisphosphonate taking this way.. It is wonderful that patients can & do benefit from this form of treatment without running into significant side effects. I hope things continue to go well for you & all who manage your osteoporosis this way. It's vvv important to remember that many patients succeed as you do. And my drs are bound to remind me of this
I guess my job is to confidently make sure my drs appreciate my individual issues: e.g. that I so far have tried oral bisphosphonates & established that they significantly long term severely aggravate my chronic upper GI conditions even though I took my dose daily in the way you do, except mine were the bisphosphonate ibandronate (bonviva) tabs not alendronate (fosamax) oral solution, so i must ask about the solution. Also, due to my osteomyelitis, even IV bisphosphonates are realistically likely to put me at greater risk of osteonecrosis of the jaw. Then rheumatology can give me their considered opinion on how best to treat my osteoporosis & monitor the effects of this treatment.
My version of systemic lupus is infant onset but went without systemic treatment except for emergencies until 4 years ago
i'm v grateful to you for helping me think this through
Bone density is implicated in neuro symptoms of Lupus because one of the treatments is steroids and they work well for nerve problems. Your very fortunate that your hip score only just pushed you over into osteoporosis, testament that your lifestyle management has worked over the years. When I had my scan the technician said to me any walking is better than none at all which gave me great heart as I'm severly restricted.he's seen people in wheelchairs with crumbling bones!.
You do need to discuss this with your Rheumy team. You also need to ask your GP about the 'strange thing' they saw on screen if your worried. They shouldn't have alerted you to it!. You have enough to worry about!.
Thanks so much misty: this is exactly the counselling I especially need. and experience like yours makes your advice extra significant. Am wishing you all the very best managing your version of all this
I was in a lot of pain yesterday when I typed your reply so apologies if it was a bit grumpy!. I have been lucky to have had the right treatment for my bones over the years and I'm sure you will feel better when you can discuss Bios with your Rheumy Team, not easy waiting for these important appointments!. Let us know how you get on and good luckX
You're lovely to say this...I had totally missed any grumpiness & am still vvvv grateful for your counselling. Hope the pain is less today.
anyway, i am still feeling anxious about this appt & especially about discussing the ins & outs of my complicated version of this bone density issue. but I do feel better prepared & more confident thanks to everyone's' help. It's embarrassing to admit that even though I'm a 61 year old, I feel like a student back at school terrified of getting things wrong and flunking out almost every time I have a clinic appt (and that's any clinic appt: Gyn, ENT, dermy, eyes, rheumy...whatever).
I hope you had another good phone call to the NOS helpline. I feel exactly as you do when going to these appointments, especially the Rheumy one if I have to admit I haven't reduced the steroids!. It's just like being in front of teacher and hasn't got better over the years of doing it. Pain is better thanks. Best of luckX
Forgive brevity; fingers not working well today. Strontium worked well for my mother who was told she'd nerve walk again and hasn't been in a wheelchair for 5 years - let us know what happens and Huge Good Luck!!
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