I haven't posted for a while as I've had a very poor 2024 with multiple issues and now a suspected 4th rib fracture, along with bursitis under my scapula and a multitude of other issues.
I saw my rheumatologist 2 weeks ago who informed me that he was only permitted to MRI one area of my body due to costs, and the wait would be around 5 months. The appointment was at my request.
I decided to go private for the MRIs. I received the results this morning.
To cut along story short, I have Florid, active inflammation with bone erosions in my hands and wrists. My feet, particularly my ankles are similar with an inflammed Achillies tendon in the left ankle too.
I'm waiting for the full report to be sent to me.
I'm being changed from JAKs to biologics ( Adilumabab) which will take a few weeks to organise.
Overall a marked deterioration since my last scans a few years ago.
Money well spent going private. What a sad state the NHS is in.
But, I'm delighted that the MRIs have showed active inflammation as I am now being taken seriously.
My mantra as ever, if you are in pain / deteriorating / need better care....don't give up, keep going, keep saying you are unwell.
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Mmrr
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sending hugs as just ongoing issues is so so tiring and all you want is some let up, so you can be part of this World rather than NHS and private hospital appointments 🥰
Thank you for posting - only yesterday I was wondering how you were. Sorry to hear that you're still having to fight your corner but really hope that the new medication works and gives you some respite 💐
It is a sad state of affairs, the state of the nhs. I chased the gastroenterologists secretary as I’d never been reviewed since the rectal bleed 3 month ago. She apologised and said I’d slipped through the net. Seen him yesterday, to be told it was due to an artery beside a diverticular pouch that caused it, and due to my blood thinners, it’s likely to happen again. Told me not to bother with 111, because in cases like mine where I need to stay on blood thinners, it can be life threatening. Sobering thought. Hubby is quite anxious, whereas I’ve just taken it on the chin. Needing further surgery on my foot in September, so at least he feels it wasn’t related to stopping my immunosuppressants, which is what was concerning me. I’m having a pretty shitty 2024 too. Would be tolerated better, if we had the weather to sit out in the garden. Hope your ribs are starting to heal, take it easy x🤗
So when you say if it happens again you have not to bother with 111 do they mean to go straight to A&E? No wonder your other half feels anxious!
Well, the temperature went up to 21C this afternoon as we went to a local garden centre for a bit to eat - by the time we got out we were in the middle of a massive downpour and the temperature had dropped to 13C. As you say if on.y we could sit out in the garden. Hope things start looking up for you too Runrig.
Hi, yes I’ve to go straight to A&E, because of the blood I lose, made worse from being on blood thinners since I had my stroke. Last time I lost the equivalent of 1.5 units of blood, then over the following week lost another 250ml. I’ve been quite tired since it happened, as my haemoglobin not recovering to its normal levels. I’m quite complex, because I have adrenal insufficiency, and dehydration can trigger a crisis. My hubby is a godsend, he was recently on gardening leave, when I had my foot surgery, which wouldn’t heal. He had to drive me twice a week to the hospital to see the consultant, which was a 40 mile round trip each time. That was for 6 weeks then I took over the dressings, it took 10 weeks in total to heal. I’m never straightforward 😂
I love browsing garden centres, and popping in for coffee and cakes. Thankfully it’s brightened up here, so I’m snatching some time in my swing chair. Glad you got out for some lunch, it breaks up the day. Take care 🤗
Sounds very grim and not to mention really stressful. At least you know what the problem is and that you need to be fast tracked through A&E if it happens again - you can only hope that it won’t.
You really have to be the expert on your own health and its treatment nowadays don’t you. I’m always amazed at the people I know who trust their doctors implicitly and who show no interest at all in their condition, on the other hand they think I’m a bit odd for wanting to know as much as I can.
Like the sound of that swing chair. No chance of that here - the rain is pouring down like some sort of tropical storm without the heat and it is cold and absolutely foul here - I need to hibernate - the only good thing is that the garden is well and truly watered, probably well enough watered to last it for the rest of the year.
Thankfully I tend to remain calm, and take things in my stride.
It’s been a washout of a summer so far. I have an allotment out the back of my house. Usually by now there would be loads of veg to harvest, but nothing is growing well this year. It seems to have tripled the slow g population. On the good side, I’ve not had to go round every day to water the veg. Hoping it brightens up for the weekend, and take hubby somewhere for Father’s Day. Wishful thinking though. At least everywhere is looking green, ndtead of the hay like grass we get here in the southeast 😂🤗
I know, I found a photograph of the grass from the summer before last at first glance it looks like you’re on a beach, the grass is the colour of sand. All the hedges and trees are just going mad at the moment, like you say so green which is quite nice as is not having ti water all the time.
I think I started to sow my veggie seeds to early - I finally got courgettes to grow after three sowings. My cosmos and zinnias have failed so miserably I can’t face trying again. I’ve never had that problem and the seed is all new. My tomatoes eventually came up but they are sad little things.
So far the only good thing is that 🤞 the slug / snail population seem to be leaving everything alone. I’ve got friends who go out on midnight slug / snail hunts so so far I have been spared that.
Have a lovely day out for Father’s Day. Hopefully the rain will stop for the day.
Oh M it really has been a 💩 year for you . I know from your previous posts that you knew things were active. Why can’t they listen and preempt things before there’s irreversible deterioration. Have they re diagnosed you ? I know you thought you might have axial spondyloarthritis . Your MRI results especially the tendons indicate a possibility. Yes NHS is a mess a Hugh mess . I don’t know if things can change it’s a worry.
So sorry to hear this. Was wondering how you were. Glad you got to get the diagnosis and just sad you had to do it privately. Understand entirely though. Hope you can somehow alleviate the problem areas and I hope Adalimumab starts to work fast for you and dampens down the inflammation. 🙏🩷
oh dear you are having a torrid time of it. So pleased you could have your scans done privately, it is a sad state of affairs in the NHS!! Wish you well with adilumabab. 🤞
Do you think the 1 MRI rule is down to each health authority? I only ask because recently I was in hospital with pneumonia for 7 weeks. During this time I had 3 chest infections, 2 MRIs, 2 CT scans, 2 ultra sounds and a PET scan. The pneumonia was cleared up in the first 4 weeks, but the bloods kept showing a higher than normal infection rate. I questioned whether it could be RA related - a higher than usual ESR rate,
Yes, I think each Health Board will have their own strategies for saving money. I have an NHS MRI next week on my lumbar spine due to increasing altered sensations in my legs. I only waited 4 weeks for it.
I suspect rheumatology have been identified as an area that cost cuttings can be made.
How depressing! Isn’t it awful that we are delighted to find out we have something seriously wrong. I remember feeling like that back when I was diagnosed with Graves’ disease. After a very long time being given the run around and be8ng made to feel like a pesky hypochondriac there I was - I actually had something very serious wrong and there was I delighted to be told that.
Thankyou.It is all the more frustrating as I have a 100 % track record of being correct. If I complain about something there is a serious problem, no ifs no buts. You might think this would account for something?
I was having an ultrasound today and in the corridor waiting for her lift home was a very old woman she was dripping blood everywhere. They had just taken her cannula out and sent her home. I must have spoken to 5 doctors walking along the corridor. None would help all said sorry I’m busy . In the end a porter got her a wheelchair rang her daughter and took her back to the ward . The oath fo no harm means Jack 💩these days.
So sorry to hear your situation - I can feel your frustration and to hear that you can only have MRI on one part of your body due to cost is shameful. In the end it costs more because the situation deteriorates and inevitably ends up costing more anyway. Sending hugs to you and hoping for an improvement soon.
It’s nice to hear from you but not good that things have been so difficult 😔. It’s bad that you had to pay for a private MRI but glad you managed to find out what has been happening and hopefully the consultants can do something about it! Broken ribs sound very painful and make breathing difficult.
I’m not a fan of hot weather but all this rain and low temperatures is making me fed up too 🙄🙄. I’ve had the heating on a few evenings this week and got one of my winter jumpers out!!
Oh sweetheart, it pains me to hear that you have so much to cope with. I was going to say that you deserve a break, but that's not really appropriate is it? Seriously, I admire your strength of spirit and tenacity. I know from my own experience how frustrating it can be when you have to take control of everything and collect data to convince doctors. I send you tons of very gentle hugs and my best wishes. xxx
Sorry to hear this. I don’t understand why dr won’t listen to us. It’s more than frustrating. They never apologise either when they get things wrong. I’m glad though that they are swapping you to Adalimumab. I hope it helps settle things a bit. It worked well for me for 12 years. Take care.
After all you’ve been through I’m so glad you have got some answers but it’s a sad indictment on the state of NHS that you have had to pay to get much needed MRIs.
I hope Adalimumab gets to work quickly for you and you make good progress.
I’m pleased to hear from you Mmrr, as I had been wondering how you were, but obviously I am not pleased to hear how difficult things have been. I will keep my fingers crossed that a change in medication brings some much needed improvements for you. 🤗
What can I say? I'm so sorry to hear you're having such an awful time. You know what's going on, have had to pay for something you should have had on the NHS and they're only now believing you. It's a shamful position for a once wonderful service and the most poorly are paying for it.
Couldn’t agree more, we have to advocate for ourselves. I’m so sorry to hear you’re having such a difficult time. I hope your new medication relieves this although sadly, as always, it’s not immediate. Take caree
I am so sorry Marie, I had been hoping that no news was good news. I do hope you manage to get proper treatment now. Things are definitely going from bad to worse in the Lothians.
I haven't been around much, had a terrible year 2023, had sepsis 4 times, ended up on dialysis when my kidneys stopped working. Hospitalised 5 times, worst one for 7 1/2 weeks. Can't even remember a lot of what happened. Latest stay came home a month ago. RA not under control. It's so depressing isn't it, when life just seems to be lurching from one crisis to the next? Thank goodness you had the means to have a private consultation......but it's shocking that it becomes necessary.
Good luck with your forthcoming lumbar MRI. I do hope that with that as well, you will get appropriate and speedy treatment. Please do keep us posted. Take care, M xx
I’m glad you are now being taken seriously and that hopefully you can get the help you need. My rheumatologist told me I was in remission, I didn’t think so and a couple of months later I had a huge flare. You’re right, we have to be our own advocate, always question and keep going if you think/know something isn’t right.
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Poor feet
How do you tell the difference between the pain from RA joint damage and the pain from RA being active/having a flare?
Inflammation in the lungs ?
I really, really, really miss my booze :-(
RA enthesitis and achillies problems, anyone got the same?
