Posted , 4 users are following.
Hi. I was doing well on 25mg but last 2 days lots of pain back.
Have been great after each increase whether it's days or weeks but then 50 per cent of pain returns.
I know my doc won't want to increase more, & I am having some further investigations but this last period of wellness has barely lasted a week.
Thanks in advance. Smiling though 😀
0 likes, 16 replies
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EileenH Sars77
Posted
Honestly, this makes me wonder if it is PMR or, at the very least, "just" PMR. So it may be a case of waiting for these other investigations.
Sars77 EileenH
Posted
Yes thanks Eileen I agree. The pain in the neck arms & shoulders don't trouble me anymore, and there's no jaw pain either but back, legs, feet..anything below the waist basically, is a problem!
Anhaga Sars77
Posted
Sars, I'd be reluctant to increase any more as 25 mg is really the upper limit for PMR pain relief. Have you done anything which might have strained your back? Sometimes the best solution for things like this are some appropriate exercises (the really boring ones a physiotherapist will prescribe, probably) and techniques to relax tensed muscles. one of the problems we have when we suffer chronic pain is our fitness level goes down and it is much easier to hurt oneself but that doesn't necessarily mean the underlying disease is any more active. Be very kind to yourself.
Sars77 Anhaga
Posted
Thanks Anhaga.
Yes I've been referred to physio twice now via the NHS & an Osteopath. I tested positive for the Ankylosing Spondylitus gene. They told me it doesn't necessarily mean anything & didn't pursue it. Might be time for me to bring it up again!
EileenH Sars77
Posted
Aaaaaaahhhhhhhh - it is not uncommon for AS to be misdiagnosed as PMR to start with. So yes - they SHOULD pursue it. It would make sense.
What you are describing is similar to what happened to another lady on the forums, just couldn't reduce the pred - until Dr Sarah Mackie had a lightbulb moment when she mentioned night-time pain. Which happens more in AS than in PMR. The right sort of MRI scan found it, Naproxen helped the pain in the short term (also more likely in AS than in PMR) and now she is on a biologic. There is a choice of 5, the anti-TNF biologics.
Sars77 EileenH
Posted
Ah thank you! I shall pursue it again & not give up this time.
They won't refer for MRI, they tell me it's very difficult to get one now due to funding. I did ask due to all the pins & needles, numbness, & muscle spasms. He said they need to follow other avenues before they resort to MRI. It's been a long ten years but waiting patientally! Kind regards & thanks
EileenH Sars77
Posted
What a load of cobblers...
EileenH Sars77
Posted
Should have said "RESORT to MRI"? It is a diagnostic tool and isn't something you "resort" to. Is this your GP? If so - he's trying to save his practice money. If it is a rheumy - you need a better one!
Sars77 EileenH
Posted
Hi Eileen, I'm in Kent. You really have to push for anything here as there are strict procedures they follow. And when I push too much I get stressed & tearful so try to avoid that.
I'm waiting in a hospital right now with my daughters whos been waiting for an emergency scan since 7pm last night & is nil by mouth. Theyre now saying could be tomorrow. Just an example 🤔
EileenH Sars77
Posted
Oh yes - don't tell me about Kent!!! I have a couple of contacts through the forums who were failed left right and centre by the rheumies they had in Kent.
One of them finally gave in to my nagging and asked for a referral to Sarah Mackie, a professor in Leeds - who finally found the right diagnosis, not GCA and PMR as she had been told for 5 years but ankylosing spondylitis. In the early stages they can be very similar but AS responds to other drugs.
Now Leeds is a bit far maybe but Rod Hughes in Chertsey is a reasonable trip and in England you ARE entitled to an NHS referral by your GP anywhere you like. If they haven't found an answer in Kent after 10 years they need a kick. And you need a new option.
Sars77 EileenH
Posted
EileenH Sars77
Posted
You can arm yourself with the NHS website info on rights to referral:
"If you are referred for your first outpatient appointment then, in most cases, you have the right to choose which hospital in England to go to. This will include many private and NHS hospitals that provide services to the NHS.
You are also able to choose which consultant-led team will be in charge of your treatment, as long as that team provides the treatment you require.
Therefore, if you wish to be treated by a particular consultant for a procedure, you can choose to have your first outpatient appointment at the hospital where the consultant works and to be treated by that consultant's team. But this doesn't necessarily mean you will be seen by the consultant themselves.
This choice is a legal right, if you are not offered a choice at the point of referral, ask your doctor why and say that you wish to go through your options. If you are still not offered, or refused, a choice, contact your local CCG."
You can find the page if you google a phrase from the quote. If you can't find it tell me and I'll pm it. In fact - Ill pm it anyway.
EileenH
Posted
http://www.nhs.uk/NHSEngland/AboutNHSservices/NHShospitals/Pages/HospitalsSummary.aspx
This is the page.
EileenH
Posted
Good lord - the NHS site isn't moderated....
Sars77 EileenH
Posted
Thanks Eileen. Sorry for late reply have been hanging around hospitals with my daughter! I've been called in to GP today about latest results so will have a chat with them about a referral. Thanks for all the info.