The title is a bit dramatic but, following up on my last post I put my big girl pants on ( with difficulty because my hands and wrists are quite sore and not working right) and had an appointment with the mental health nurse. She was lovely but said if I'm in pain we need to address that rather than giving me happy pills. That sounds reasonable to me and she booked me a phone call with my new GP. To be fair to new GP he didn't know my history too well, he knew I have a uncertain diagnosis of rheumatological disease.
I explained in no uncertain terms that I'm not coping with life, work and being in pain and that I can't live like this. He allowed there is nothing he can do...I'm already taking co codamol (30/500) which they very generously prescribe two per day and I'm not allowed more opiates because it's a rheumy disease.
He lost his mind when I said I'd put my steroids up myself and when he suggested they'd run out I just told him I'm a vet and have access to steroids. Probably shouldn't have said that.
He tried to lecture me about the risk of steroids and I had to tell him just at the minute I don't care , I can't live as I am and if I become diabetic I'll cross that bridge when I come to it.
I didn't hold back and still the answer was he couldn't do anything. Where does this leave me??
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wilbertjellyfish
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Hi the nurse is right Some of these nurses are very good now a days
Better than som docs pity she was not allwed to prescibe
I'd keep at docs
The pain hss to be addressed as nurse said
The Co.codamal may help some ,but for some The Co.codamal woould not even touch the pain
The opiods not sure there either ,everyone's history is different though, but lots of pain meds and opiods are the only way ahead for lots as well suffering from long term pain and needs addressed and sleep if any issues there ,I'd keep knocking on that door
It sounds like the GP was at a complete loss as to what to do, as he said, but that's no help to you. There must be something that can be done.
If a higher dose of steroids helps to relieve (at least some of) the inflammation, surely your prescription could be increased or a systemic injection offered while the underlying condition is further investigated?
If pain relief is needed beyond the current prescription, there must be other options besides cocodamol. I don't have experience of this myself but am sure others on the forum know about pain relief in the context of rheumatological disease.
Some of this might need attention from rheumatology, but steroids and pain relief don't obviously seem to be beyond the scope of GP practice. Is there another GP you could see? (maybe leaving the self-medication options out next time?!). Could they make an urgent referral back to rheumatology or a pain clinic?
Really hope you can find someone who will look into the situation further for you, and identify some sort of solution even if it's an interim measure. It is so hard (and frustrating) when medical professionals throw their hands up in defeat and leave you no better off.
I do understand the consultation doesn't know what's actually wrong and nothing seems to work other than steroids, so there isn't much hope for the GPs. But yes you'd think there was something
You would, and for some rheumatological conditions - I'm thinking of polymyalgia rheumatica here - steroids ARE the primary treatment. So it's hard to understand why you couldn't be prescribed a higher dose for symptom relief while the further investigations are still ongoing. We all know that steroids aren't ideal for lots of reasons, but if they're the only thing that works...
I think from the gps perspective issuing more steroids, prior to a diagnosis, may mask symptoms and make getting a diagnosis more challenging. I had a severe stroke due to long term steroids. I had polymyalgia and GCA for which steroids are the only treatment. If you’re a vet, you are probably aware of the risk of adrenal insufficiency, which is life threatening, and interferes with every aspect of your life. I can become very ill with hood or bad stress, and need to carry an emergency injection for vomiting, injury or severe illness, it’s not fun. So I always urge others to try different meds if available. Are you on a nsaid, you could try brufen or naproxen, regularly for a few days, to see if it helps. I’m on steroids for life, as my adrenal glands are 90% atrophied and will never recover. It’s also meant many of my other hormones are non existent, and contribute to my fatigue and difficulty shifting weight.
Applying heat or ice often helps, or use of supports on painful joints. Generally most rheumatologists treat the condition, but expect the gp to manage pain. Are your inflammatory markers raised, if so that suggests an nsaid would help. You could always ask for a second opinion from another gp. Hope you find something to ease your pains soon.
I'm on an n'said daily, 8 paracetamol daily with some codeine. My adrenals aren't working either, I've been on steroids for. 7 years. I do understand there is a risk but I felt awful before the increase. Not just the pain and stiffness all over.
I've tried really hard to reduce my steroid dose and twice last year ended up in hospital.
I was hoping for something else but I just couldn't cope any longer.
Perhaps you could try changing to an alternative nsaid, Etoricoxib is one that rheumatologists like, and many rheumatology patients use, and it’s only once a day. The issue with steroids is that if you have an ultrasound or mri it may not detect the inflammation needed to obtain a diagnosis. If you get down to 5mg pred, it would be worth getting your cortisol levels checked, unfortunately tit can’t be checked when taking a therapeutic dose. Checking would let you know if tapering lower is possible. Have you tried tens machines
Yes the acth test will register undetectable at doses above 5mg, because your body recognises your getting adequate cortisol from your steroid. You won’t be able to check adrenal function till you’re taking less than your body needs, which endocrinologists say is 5mg or less. I had to switch to hydrocortisone for testing as the assays don’t detect prednisolone, unless you send to the Imperial in London, then I switched back after the second SST. So if you ever get down to that dose that’s when you will know how your adrenals are. Hope you find something to settle things for you. If you eventually get a diagnosis it may be that you’d be eligible for biologics, which would help getting your steroid dose down. 🤗
I got my Co.codamal halted, for takeing the Paracetamol yiur dose as doc said not allowed got taking off repeat ,Was not doing much anyway ,I had choice
Picked the Paracetamol as that's my first port of call ,then the add ons other pain relief
Seemingly I've been told by a few the
Paracetamol helps the other stronger pain meds work better
I only wish I knew, this sounds like a desperate situation as a vet I’d assume you’re not given to panic or irrational decisions so I believe you need to see a specialist. It might be nothing to do with RA but something else going on. I wonder if you’ve got any private consultant GPs who might be able to give a second opinion? I know it’s not an ideal solution but starting again with a GP who might have a more open mind could be helpful. Are you not taking any RA medications at the moment ? Surely the RA consultant must see that you need help and pain is not a mental health issue but very real especially when visible in swollen and damaged hands. Soon you won’t be able to practice with this issue unless you get help so it’s vital to do all you can to stop things getting worse. It’s bad already so don’t stop or give up in desperation. But keep going and find some help you need and deserve it. X
Thank you. I don't think I'm irrational but I probably don't complain enough and just try to get on with it. I'm on lots of meds but nothing really works. I've been considering getting a private appointment with a rheumatologist...I'm considering flying to London or something. Work is a real struggle at times and I can't afford not to work.
Gosh, I really feel for you. You may well be right that you are stoic and don’t complain enough.
M-L has made some good points, it’s a question of how you can find a ‘good’ rheumatologist, last thing you want to do is travel a distance and not find the help that you are looking for.
Does your hospital have a pain clinic? I’ve heard mixed reviews about them though.
What is really ironic is that a lot of us on Thyroid U.K. used to joke that we would get better treatment from our vets. It’s really tough that you are in this position. I hope you can get the help and support you are clearly needing.
Actually it’s so funny but our cat was neutered and had an unexpected complication. So rang vets they said bring her in now and they operated and she recovered well. They used to see her weekly and were so lovely. So I said to my husband if I ever need a hysterectomy I’m going to a vet there’s no waiting list and they really look after pets!
Here abouts even vets are hard to come by. We’ve been with Roland for years but I’ve heard his receptionist tell people they have a waiting list for pets to become patients. Our cat is diabetic on insulin twice a day and lets him take blood but a locum tried and had to ask me to come back as the huge Australian vet rugby player vet had been bested by a 4 kilo moggy. lol He said tomorrow theirs 2 vets plus 2 nurses so one for each limb of that bundle of spitting fury. The earn their money!! My in laws farmed as did my mum and dad. But not livestock only arable. Although my husband remembered his dad’s first tractor that he talked too and they kept the heavy horses as pets. We’ve some lovely photos of the horses at ploughing matches and all his dad’s ploughing certificates. My dad was useless he never won.lol xx
Mine is only independent vets where we are . It's only a small practice but we have a waiting list because all the other practices are corporate and charge a fortune.
It’s hard these days I don’t know about London but RA Consultants are like hens teeth here but pay and no problem. As you say you need to work so perhaps it’s time to put a stop to this GP and the angst but take things further. I know if I were you I’d see someone who actually doesn’t put things down to mental struggles but a very real issue with physical health. Xx
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Fears.
PMR
Fran Takes the Bulls (Rheumy, Chest, GP Docs) By the Horns
Normal inflammatory markers - this is getting boring
