Have just received a copy of Rheumy report to my GP from last appt. She confirmed outlined my various conditions and has confirmed tapering by 0.5mg every two months. Blood tests that were done at the appt showed CRP at 5. Rheumy also looked at my various scans and X-Rays and thought that I might have another compression fracture in L4. Letter says follow up in six months. Saw GP f2f regarding stomach pain which does not seem to have altered after 2.5 weeks of elimination and Mebeverine as per previous GP appt. Different GP this time. Is going along the lines of IBS stress related. At her suggestion, I’m now going to try 10mg Amitryptiline at night. She also mentioned about possibility of problems with back causing messages through nerves and causing stomach pain. Had to raise problem with repeat prescription for 5mg Pred, which yet again came back with 1mg instead of 5. Almost every month when I request repeat prescription, I get sent 1mg not 5 and I have to ring the surgery to get it sorted so as it coincided with my appt I raised it again. She couldn’t understand why they’d sent 1mg either and re did the request. She is happy for me to stay at 6.5mg till after Christmas before starting to taper, given I’ve got the extra stress of hubby’s operation. As an aside, I’ve also had visits to the dentist with a loose crown, which I’m going to have to have replaced with a bridge. Can’t have crown replaced as there is a fracture in the root. Am due to get a temporary tooth on a plate before Christmas, followed by a bridge after about 3mths when gum has settled down. Its all good fun isn’t it?
Rheumy report and stomach pain before- update - PMRGCAuk
Rheumy report and stomach pain before- update
On the whole though - positive on the part of the rheumy and the GP?
What have they done with regard to the ?compression fracture? As soon as mine was noted, I was given a zolendronate infusion which works much faster than tablets to stabilise the bone. I was very surprised how my back pain - not apparently bone pain - improved steadily after it.
No action regarding fracture. I’m not too sure when it happened. It could have been in January this year, when I was nearly immobilised with pain and it was thought to be muscular. It felt as though my back had gone into a spasm, but it could have been before that. I’m assuming that it was after I had an X-ray done in 2021 as I would have been noted with the thoracic fractures. I have been seeing a chiropractor once a week to see if I can improve the strength in my back and it seems to be getting better. She has given me some light exercises to do and I’m doing those, carefully. Positive outcome with the GP and Rheumy, but since they are both locums, I may never see them again. Its a lottery.
"It felt as though my back had gone into a spasm,"
Apparently the most common cause of muscular back spasms is a spinal fracture - so I found out when reading up about it! But it doesn't appear to be common knowledge. I have had them for years and the worst were nearly 3 years ago, shortly after my husband died and we assumed then it was a massive PMR flare contributing. The spinal x-ray done then showed nothing in the way of bone damage and it was difficult to identify when it had happened in the meantime, but it is there - even I can see it on the x-ray!!! I had seen a chiropractor with some unusual techniques (to me at least) and I have tortured myself wondering if that was it - the pain had changed after seeing him but wasn't worse, just different.
I would ask about bisphosphonate therapy - to reduce the risk of more.
Bisphosphonate therapy - is that in addition to Alendronic acid? I don’t really know anything about that. The chiropractor that I’m seeing seems ok. She is familiar with dealing with osteoporosis and says she has dealt with PMR patients. I think its slow progress due to my conditions but she took before photos and then more after several treatments and my posture has improved. So I think my back must be getting a bit stronger.
Are you already on AA? In that case you'd imagine you are already protected. However - when I was doing my homework before having the infusion, I got the impression that the oral bisphosphonates are less effective than the infusions. I don't know if that is true. Maybe this is something to take to the ROS Helpline to see what they would advise. Maybe another option is better for this situation.
Your chiropractor sounds good.
I got the impression that they are going to leave me on AA until I have another DEXA scan. I enquired about that recently and I wouldn’t have been called back automatically, so I asked the GP to refer me again, so I should get another scan done in 2026. The first report in 2021 said a follow up should be done in 5yrs. I’ll check up on the ROS.
I think the gaps are fair enough UNLESS you have a problem - and you do. Normally there is no point doing dexas more than 2-yearly because of the slow rate at which bone density changes. BUT, on pred we are in a different world - and once you have one compression fracture, the stakes are even higher. I'm very fortunate here - there are now 3 or 4 scanners in the region, one state-owned and the others private so they are quite happy to sell you a scan - and even privately you are talking about £35!!!
Unfortunately, I got the report from the Rheumy after I saw my GP on Tues so I couldn’t raise it with her then. There is a 17 mth waiting list for and NHS scan so I wouldn’t get one any sooner than 2026 with the referral that I asked for anyway. Last time in 2021, I had a private one done as the wait was 14 mths then. Unfortunately, the nearest place I could get is over 100 miles away and cost £125. I’d have to see if there is anyone a bit nearer if possible.
It is appalling. The more I hear of the state of the NHS, the more I know I need to keep my entitlement here as long as I can.
I fear you are right. It is in a parlous state. Hang on to what you’ve got as long as you can.
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