I’ve had a right hip issue since about mid May. It makes me waddle like a duck. So a couple of weeks ago I emailed my rheumy about it and we had a telephone consult (given Covid 19 times). I’ve got osteopenia at the level where it’s on the cusp of osteoporosis. Thank you pred. However in 2017, I had two unexplained stress fractures in my pelvis and last summer I had 3 compressed lumbar vertebrae fractures. All horrible painful. Far worse than this present hip issue. That history of ‘fractures’ though means medicating the osteopenia which is now finally happening.
Anyway given all this, rheumy says please have an x-ray and please have an MRI. X-ray shows nothing. MRI however appears to show quite a lot, namely that the right iliac wing of my pelvis exhibits abnormal bone marrow SI with inflammatory changes in the periosteum. and a transverse fracture trace is identified. Incidentally I was exceptionally impressed how fast these appts came through given Covid 19 times in the UK. So thank you NHS as well.
So after three days, having given pints of blood and urine to be tested, myeloma has been ruled out, thankfully. That was a mighty relief frankly. I don’t ever want to revisit those three days again.
I still have to undergo a CT scan of chest, abdomen and pelvis which should hopefully happen within the next two weeks. And possibly thereafter a bone biopsy. So has anyone any experience of PsA doing this? It appears it can inflame the periosteum (thanks to a member on here who found that for me - you know who are) and it appears osteoporosis can mess things up too.
But I’m just interested if anyone else has had such weird out of the blue issues. I have to admit this one has been quite a rollercoaster this far.
I haven’t experienced anything like this, it is kind of fascinating - though I wish it really wasn’t happening to you, but soooo glad that myeloma has been ruled out.
Agreed, they ruled out myeloma, but this is a lot to be going through. I’m glad that you are slated to start treatment for poor bone density.
It’s so interesting comparing health systems between the US and UK. I would have been offered meds for osteoporosis after the first round of fractures, and actually, I was offered them, even without low bone density. But it looks like things are moving along really nicely for you, and you’re getting full coverage management it sounds like, and of course, a health care system that covers everyone regardless of employment status.
I was offered them @Stoney once they had confirmed bone densisty issues again after the lumbar vertebrae fractures. Prior to that I was put on prescribed Calcium plus vit D after the original pelvic fractures as that’s what the bone densisty results then warranted. I was fine with that then.
But I was just out of a 8 week hell of side effects with the biosimilar to Humira last Autumn namely Imraldi and walking in to start Cosentyx. I baulked at starting two new meds to me at the same time. I was somewhat taken aback at how much the biosimilar humira hated me (as was everyone else) and of course we had no idea how Cosentyx would treat me. So it was me who decided one at a time. And then I decided to question the first choice osteoporosis med I was to take which was weekly, as I preferred to deal with any daily side effect issues it might throw up on a monthly basis instead. That persuasion took a little time. Not helped either by Covid 19 which distracted everyone - me included.
Remember too I was hospitalised with a fight between Benepali (biosimilar to Enbrel) and Sulfasalazine, at Christmas 2018 so I had good reason to be wary of mixing meds too much. The NHS just wanted to bash on, it was only me who slowed it down a little, with cogent reasons then.
I’m very good at accessing the NHS and I don’t suffer the lack of care some people do on it as I won’t put up with any nonsense as you can imagine. But neither will I put up tunnel vision or a silo mentality of just treating condition A without looking at the whole effect on the patient of treating both condition A and B. As I appear to exhibit a level of sensitivity when overloaded with too many meds.
So it was nothing to do with the failure of the NHS to want to prescribe for me. It was to do with me saying with my history of meds not liking me, we’ll deal with issues one at a time so we’ll be clear which is causing what if anything untoward occured.
I’m totally convinced I have ‘nightmare, fiesty, argumentative, questioning patient’ written all over my notes in code. Along with ‘be prepared for detailed discussion and questions you can’t answer along with wondering why you can’t.’
I’m glad to say having started the osteoporosis med other than wiping me out for the day it’s taken, it’s behaved itself fine. A day a month being wiped out is perfectly manageable. Cosentyx wipes me out for a weekend every 4 weeks - that’s also manageable. But for me I have to be total control of things as far as possible too or at least have a decent understanding of things along the way.
Hit it. It sounds like your made a very good decision based on your experiences with new meds. I certainly would not say that if means that you’re a difficult patient, but I’ve seen the type of things that gets written in medical records, and it’s not always pleasant. I’m glad that your sorted it out in a way that works for you.
Actually to conclude this thread. Having had an x-ray, MRI, CT contrast scan, PET CT scan and having ruled out myeloma, they can’t find anything to have caused this fracture to exhibit bone marrow abnormalities. I don’t have anything indicating cancer anywhere, thankfully. All blood tests and all these scans are just normal.
The last resort might be to biopsy it but I’m happy not to rush that one.
One amazing benefit of the PET CT scan was that it found no PsA inflammation anywhere which further indicates what I was saying anyhow is that Cosentyx really is working very well indeed just now.
I wouldn’t wish the experience I had over the last 6 weeks on my worst enemy - it was stressful in the extreme, but I’m pretty delighted with the end result most definitely.
Thanks for sharing your journey @Poo_therapy. You sound relieved and with the elimination of some of the stressful issues, I hope you can find rest of mind and body. Your experience and life stories as you walk with PsA have been very helpful to all of us. Does anyone know how long it takes before losing “newbie” status?
That made me giggle. Given the nature of our disease and the utterly weird things it can throw up sometimes, I think most of us remain newbies to some degree far too often. So I wouldn’t worry about that aspect.
