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....