At the third attempt to reduce Prednisolone down the Osteoradionecrosis in my Right jaw has flared up causing intense pain, sleeplessness and inability to eat. The great Vision of my various professionals is for me to reduce to 5mg and then commence Hydrocortisone 5mg morne/10mg nocte as apparently Hydrocortisone helps my issues better but when i get to 8mg this happens despite me having started Hydrocortisone earlier this time to provide a better overlap. The worrying thing is there is a new development in that I have numbness in my lower lip going down to the jaw both inside and outside my mouth which came n quite suddenly and is now of four days duration. If any of you have had pain like this you will know the desperation it causes and I have been trying to quell it with an arsenal of Co-codamol interspersed with Nuerofen and have had to increase the Prednisolone again to a degree. I have phoned the various departments to inform them but as usual despite virtually three times the defence budget being thrown at it no one is answering the NHS phone so I get to leave a message and cross my fingers. I have since discovered there are risks taking NSAID's with Methotrexate but I am not on a high dose so will run that gauntlet in the short term, god what a labyrinth.
It's not working.: At the third attempt to reduce... - PMRGCAuk
It's not working.
The state of the NHS at present is truly scary - my daughters are slowly realising that my desire to remain here as long as I can is not unfounded!!!! They work in the darn edifice!!!
I can only sympathise - I wonder if intractable pain might qualify you for a trip in an ambo to A&E and a bit of prodding at those phone lines that are inaccessible to you?
Thanks, I worked in it for 33 years so am well aware that starteigically designed contact obstacles lead to "waiting times" that limit the flow of work volume going higher up the tree.
And can also make things worse in the medium term as patients who weren't particulalry ill originally are denied access and deteriorate until they end up in the ED. The ED daughter says she's fed up hearing "I can't get to see my GP ..." and has had a few truly distressing situations where she has had the job of the "Sorry but we've found ..." conversation.
I would honestly brace myself for a day in A&E. You will find that you are in the top percentile of justifiable cases in there. This must be addressed and urgently. All good wishes.
Thanks, I will do that if my DIY healthcare interventions have no impact. The numbness may be due to inflammation putting pressure on nerves and is known to occur with Osteoradionecrosis also I was advised and supplied with Benzydamine Hydrochloride mouthwash and a rare side effect of this (I get all the rare stuff except for useful things like lottery wins) is numbness which I had used earlier in the day. However I am not sure it should last four days! and given part of my profile is that I was treated for throat cancer in 2018 I am mindful of others developing and numbness in the mouth is an early warning sign of mouth cancer. The latter is probably the least likely given the overall picture but as it is the worst it needs tackling first, that is why I was onto the ENT dept. this morning and got an answerphone. I am sill awaiting histology reports after two months from two colonoscopy removed Polyps despite contacting twice and also talking to the Hospital media centre about the delay. This sacred cow is quickly loosing it's Halo and should stop hiding it's long standing internal inadequacies behind Covid whilst it chews up the National budget. I feel very much for the medical secretaries/ frontline workers on whom backs this decrepit monolith is built.
Not sure it is LOSING the halo so much as having it chipped away by THOSE WHO SHALL REMAIN NAMELESS! But you're right - Covid is being used as an excuse far too much.
I also think the big numbers of money going in isn’t going to the front line. People in different parts of the NHS that I know only see cuts. I think its being set up to fail in order to justify private organisations to run it. Also, if people are totally fed up, they’ll take the measures made to supposedly whip of back into shape. Besides, privatisation has done so well for our railways and utilities! AM - Good luck with A&E!
Oh definitely - been here so many times before. OH left the NHS 15 years or so ago purely because of the cuts to what made it worth it and the heaping of paperwork onto his desk.
I can recall that the bulk of the paper work I used to have to undertake was around risk, always risk assessment after risk assessment. I recall having a teaching session on this risk tool comprised by two University Graduates who compiled this by touring all round European health networks gathering examples of their risk tools to collate a "comprehensive" risk assessment portfolio we were compelled by management to employ. It took them three years at god knows what cost and the huge tome it produced was like War and Peace and almost as long to do as to read the book, useless, unworkable and was quietly pushed aside, all on the ever accommodating taxpayer.
His was working out how to provide increased diagnostic services with a budget that was cut year on year and the CEO was palming god knows what. He was eventually caught in fraud - but only sent on gardening leave. So dispiritng ...
Yes, and it's not just the NHS but just about any department run by Civil Servants.
Any department is run by the government (the Secretary of whichever one, be it Health, Defence etc) - civil servants are merely carrying out their duties as best they can, very often in difficult circumstances. not making the rules.
There are a lot of ex civil servants on this forum that would take exception to your comment….
I say as I find. My Sister died suddenly last week and the problems I've had getting through to the various departments has been shocking. Calls not returned, information not received. The excuses have ranged from short staffed due to Covid to "keep trying as "he/she" is working from home so only one telephone line and "he/she" only works three days a week.
Commiserations on the loss of your sister, and I can understand your frustration and upset, and I’m sure I would feel the same in your situation.
However, all I’m saying is the issues you describe are not exclusive to public run organisations.
I completely agree but the conversation started with the NHS of which I haven't a bad word to say as the treatment I have received, from both Hospitals and GPs, since developing PMR has been truly excellent.
That however has nothing to do with the civil servant themselves. Just as a lot of the NHS problems cannot be laid at the door of the staff.
How can failing to return calls and provide necessary, and urgent, information after promising to do so - and not just once - not be the fault the staff concerned?
I recall also being sent on a Trust diversity through food teaching session run by two, yes it needed two, presenters who were championing this and we had to do this infuriating exercise organising a buffet accommodating every possible nuanced dietary affectation you could imagine. I pointed out that the vast majority of the worlds population of whatever background subsisted on either food aid or a very limited spectrum of sources, It went down badly but I was satisfied I had made a pointed remark about WASTED resources.
I cannot comment on your numbness, but will say that I was advised by GP and Rheumy (separately), to not take NSAIDS with pred, or with Methotrexate (I am currently on both). Living with your symptoms sounds downright miserable.
Sounds like 8mg is where things go wrong. I was “stuck” at 9mg for almost 2 years, flared every time I tried to lower pred down to 8.5mg. On-boarded Methotrexate (25mg) weekly to help me taper and it’s worked fairly well thus far.
Hoping you figure out some medication to address your symptoms without negatively impacting your current medications.
Thanks, I just read through the potential interactions between the two and will cease the Ibuprofen immediately and may just have to ramp up the Prednisolone which will annoy the Ophthalmologist who keeps pushing me to reduce it but can't seem to grasp I am managing another condition too. If they had to endure the pain, sleeplessness and inability to eat anything they would get the picture.
"If they had to endure the pain, sleeplessness and inability to eat anything they would get the picture"
How true - and it is something I spend a lot of time trying to explain to doctors! I think we are getting there with a certain population of rheumies heavily involved in research ...
I can't offer any advice, but just wanted to say what a rotten time you're having yet you still keep your sense of humour, which is a great credit to you. I'm presuming the necrosis is from radio therapy with the throat cancer - I so feel for you, and keep my fingers crossed things will get better for you really soon xx
Thankyou for your kind thoughts.
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