I was wondering if anyone has had or been offered a bone scan?
After 3 years of being ok on 10mg Mthx, had a bad flare in July - ESR high and CRP elevated a bit, so had a steroid injection in my bum and Consultant put my Mthx up to 15mg. Now steroids have worn off Iām very stiff again, mainly hips, but also knees, right wrist and fingers, no real swelling as of yet, but there was back in July.
Have persevered at work, but Monday I felt awful, fatigued and generally unwell, plus walking like Mrs Overall from Acorn Antiques š. So phoned Consultant and also GP who signed me off for a week.
Consultant called yesterday, seems my last bloods a week ago, ESR now elevated to a new high, CRP quite low (itās always been like this, CRP for me is almost never reflects the ESR/high).
Anyway, now sheās asking me if I have lost weight, night sweats? She says sheās not happy with the bloods, so wants f2f to examine me properly and get more detailed bloods done, plus a bone scan.
Of course now my mind is running away with me, is my hip pain something else (which she kind of intimidated sheās worried)?
I wouldnāt have thought a bone scan is just a routine test.
Iām really grateful sheās taking the time to double check these things and to be looked after, but Iām really worried now.
Xx
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Chockyuk
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I had a bone scan (DEXA scan) to look for osteopenia or osteoporosis because I had been on steroids for some time until we got my RA under control. It showed I have osteoporosis and Iām now on alendronate treatment for that.I think it is fairly routine to get the scan if youāve had to take steroids over several months or if youāve had some broken bones and are post menopausal/getting old!!
Hi, thanks for that, Iām sorry to hear you have osteoporosis š
But the one she wants me to have is not the bone density scan, but the one where they inject you with dye, then ask to come back 3 hours later, for the actual scan. This is normally used to detect bone cancer, this is why Iām worried, hence her questions about losing weight, night sweats. She says itās not normal to feel so fatigued, but after reading all our posts here, I would say it is normal š¤·āāļø
I've had the nuclear bone scan a couple of times in the past. The worst part was trying the to kill the 2-3 hours between going back for the second scan! Mine was done each time just to check on level of joint damage etc, so it could be that's what your doc is doing (or just checking to see if there is any damage)? So, please don't suspect the worst (I know how easy that is, and I've done it myself)!
As for asking about night sweats and losing weight, my previous rheumatologist used to ask that at every visit. He also had a thing about checking for lumps around lymph glands, and testing reflexes! He was very cautious and was always worried about infection risks.
So hopefully, she is just being conscientious and extra cautious. I can appreciate it all feels a bit alarming, but try not to worry too much as extra stress won't help your health. I hope you start to feel better very soon. Take care xxš
Not until I broke both bones in my wrist and discovered I had osteoporosis and realised that my inflammatory arthritis and the steroids and omeprazole I was prescribed along with my overactive thyroid etc, etc were all warning signs that I ought to have been offered a scan years ago especially as no one bothered to ask if I had a family history of osteoporosis which I have. If someone had done that while there was a chance I could have worked on building bone strength before it was too late I might have had better bones now.
Iām always grumbling that people with overactive thyroids and rheumatoid arthritis ought to be given MRI scans and should be warned about how bad steroids and PPIs are for their bones. So have the scan.
Just seen you think it isnāt for osteoporosis- thatās the trouble when doctors donāt bother to explain to you why they are doing particular tests.
I had a nuclear bone scan recently too, due to levels of pain my rheumatologist felt was not consistent with my blood tests. My CRP and ESR are always moderately raised and keep rising despite Abatacept, Sulfasalazine and Hydroxychloroquine. She insists I have improved DAS score wise although still moderate/severe disease activity. I flare roughly every 6-8 weeks. My scan came back as active inflammatory disease in most places. She insists this is only because I missed 2 weeks of Abatacept prior to the scan due to infection. The scan whilst looking for possible cancer can also be used for underlying occult infections too so try not to worry š
Thanks all for your replies. I suppose I will just have to wait and see how I get on.In the meantime Iām feeling atrocious, just took my dog for a hobble to the park, on the way home I dropped my walking stick and couldnāt bend down to pick it up. A man got out of his car to help me š. Iām 59, but feel 99......I cried all the way home.
Oh Chockyuk, I really, really feel for you. I reached that same stage recently. Iād had sacral pain along with buttock pain and nerve pain for ages. Really agony. Then I fell over backwards and landed on my bottom - the pain from then on was unbelievable. It felt like someone had put all my pelvic bones into a Tesco carrier bag and was rattling them around. I had to lift my right leg to get it into the car and definitely no jay walking for me. The rate I was walking the green man had turned to red by the time I managed to reach the other side of the crossing.
Iād phoned my GP begging for an x-Ray - nothing doing! I ended up like you were out for a hobble as if to prove I wasnāt really in as much pain as I was and came home on the verge of tears. That day I got dropped off at A&E and was told it was sacroiliitis which sounded like a decent guess to me. He prescribed naproxen which sorted the pain and physio - that was in June and it hasnāt happened yet so I went for private physio.
To cut a very long story short, I ditched the dreadful GP surgery I was with, found a new one, also ditched the first physio I saw who told me the agonising pain I was having (and that I told them all felt like my sacrum was split in half) was ā justāreferred pain from my lumbar spine!
Then I got myself a great physio who referred me for a private MRI scan and three scans - lumbar, sacrum and pelvic later, it turns out that Iāve got a sacral insufficiency fracture plus burstitis along with a lot of really nasty stuff involving discs etc in my lower spine.
By that time I was convinced it was a whacking big tumour somewhere but fortunately there wasnāt. So hopefully your scan will throw up something that is causing your pain but not whatās in your worst thoughts.
Have you been given anything for your pain? My good physio was insistent that I needed to get the pain under control as fast as possible. He was right - once I got decent pain relief things improved. So if you havenāt been given anything get in to your GP and ask for something.
Iām still in pain - mainly because Iām trying not to reduce my painkillers - but not the agony that I was in and that you sound as if you are in. Good luck. x
Oh gosh, that sounds really awful. Iām glad youāve got a better GP and physio now. There are so many diseases around, we canāt keep track in them - Iāve never heard of sacroiolitis, Iāll have to do a Google.But I need to stay away from Dr Google, my ESR is 111, which doesnāt make good reading.
No my Consultant isnāt offering anything, sheās hoping to get an appointment to see me next week, she said she could give me Pred, but wonāt yet as she doesnāt want anything to mask the problems. Meanwhile Iām so stiff, knees, hips, shoulders (I also have tendonitis/rotator cuff in my left shoulder, thatās so sore).
Iām prostrate on the sofa now like a dead thing š
The surgery problem happened because our long established doctors gradually retired and in January they were bought out by a big company and all the GPs and nursing staff left as soon as they could - even the one doctor who said she would stay. The new surgery have their door onto the street open so that you can walk in and they answer their phone quite quickly but it still feels like I donāt have a GP, just somewhere that sends prescriptions to the pharmacy. Itās very weird on top of all the lockdown stuff. After the broken wrist healed I ended up with CRPS then I got a painful shoulder - physiotherapy and time have pretty much sorted that out I can fasten my bra behind my back again but I couldnāt even put my hand behind my back at one point, it was pretty awful - so I feel that pain for you too.
Itās a good idea to lie down when you can. I lie on the floor a lot usually with my knees bent, thatās quite comfortable, sometimes on my Pilates mat, sometimes on the carpet. The only thing is that at this time of the year I do worry about spiders! We get enormous, fast moving, big, black, hairy scary ones coming in. I think I would do myself some serious damage if I see one and have to move in a hurry.
Are you able to get into a nice warm bath? I spend a lot of time in the bath - itās not doing much for water conservation but hot baths and Volterol - my new body lotion help a bit, itās not how you imagine things will be is it. At 72 Iām a lot older than you - you are just a young thing.
Sacroiliitis is an inflammation of one or both of your sacroiliac joints ā they are on the sacrum where your lower spine and pelvis connect. It can (and does) cause pain in your buttocks or lower back, and can extend down one or both legs. In actual fact it turns out Iāve got a fracture of the right sacral ala which if you look at a skeleton are the sort of little āwingā bits on either side where your sacrum sort of joins your pelvic bones.
Turns out there doesnāt seem to be much you can do for it other than try to keep walking, I do Pilates three times a week for an hour, my teacher is a physiotherapist and takes really good care of me and my actual physio said to do some Pilates stretching exercises every day - not just on the days I do my Pilates, that and taking painkillers. Itās a case of finding that fine line between helping the pain and making it worse.
Anyway, Iām sending you virtual hugs and Iāll keep my fingers crossed that your consultant fits you in ASAP - she sounds good - and you can get some sort of relief soon. š
Funnily enough, thatās how Iāve been trying to sleep when the pain gets bad, with my knees up, does help.
I only have a bath at home, I wish I had a shower too as I am finding it hard sometimes to get up, especially as our bath is one of those roll top ones so quite high - Iāve bought a little stool to help me.
Iāve got a handle with suckers on it for on the wall, I wouldnāt say it is as good as a proper āscrewed into the wall oneā and I always double check before I lean on it but that helps too. I have one of those foam things to put between my thighs / knees you see advertised on TV for sleeping on my side and thatās good, I used to use a pillow but thatās a bit unwieldy, I bought a big foam cube / wedge thing to drape my legs over for when I just want to relax and that is comfortable too.
Iāve got āgrip stripsā stuck on the base of the bath too and just to be on the safe side I never use bath oil!
Thanks for the advice šI have never heard of the handles with suckers.
At the moment I canāt make any alterations to the house as probably next year Iāll be starting my divorce off and will sell the house. Another stressor!! š
Mine are this sort of thing. Saves drilling walls - I always check them regularly though to be sure they are really gripping amazon.co.uk/2018-Upgrade-S...
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