Rheumy nurse looses the plot (I think): I called... - PMRGCAuk

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Rheumy nurse looses the plot (I think)

Dontwannabesick
Dontwannabesick

I called rheumy a few weeks ago to say I was not going to take my Methotrexate as, in March, my GP told me to pause it during a nasty (?!?) chest infection. The nurse I spoke to advised against not taking it, but said that if I felt unwell I should go for a blood test. I have been OK. I had already been told not to go for regular blood tests due to COVID. Then last week got a letter saying they had noticed I had not had blood tests and if I didn't go, they might stop my meds. So I went for a blood test. Then Monday this week a call from the rheumy nurse to ask how I was. (In place of cancelled appt). I told her I had slowed down my taper as I was aware that stopping Methotrexate could maybe complicate things, and I am currently on week 3 at 8mg. She urged me to go back on Methotrexate as this would help me get off Pred (yes I understand that). I asked about my bloods, she said "oh yes, just a minute I'll take a look" they were fine ESR 1 CRP 1.2. She said just keep doing what you're doing and I'll call you again in 6 months, and by then you will probably have weaned off". I said, can I ask you a question, I've researched and learned that my adrenal glands may have stopped producing cortisol naturally, and at some point soon, I may struggle. she said, "yes, well that's why we have been reducing you slowly, and the Methotrexate will help with that". The only reason I'm reducing slowly is the advice this wonderful group has given me. Sorry for the rant, but I seriously do not like, or trust this woman. I am going to try again with methotrexate because I seriously hope it will help control the disease, but if I struggle with the reduction in Pred because of adrenal problems, I am sure gonna kick up a stink !! Sorry, I feel better now. Love you guys X

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For a bit of sport, I would have asked her to explain the mechanism by which Methotrexate helps with adrenal insufficiency.

Tempted, and I will. Just so glad I have the guidance and knowledge of this family to support and inform me.

Yellowbluebell
YellowbluebellAmbassador in reply to SnazzyD

Thats the sort of mischievous things I do!!

Suffererc
Suffererc in reply to SnazzyD

I always get to scared to question them. I go along with most things or ignore them until I have been on here. Most days something comes up that answers my worries. I always have the feeling that my questions to them are daft or I have put it the wrong way and they are sneering. Don't always know how to explain things or feel looked at as if stupid.

Can always rely on this forum

SnazzyD
SnazzyD in reply to Suffererc

Then play stupid but apologetic and request they humour you and explain it because you’re soo silly. If they think you’re stupid then they should be professional enough to be able to tailor the information. If you come out feeling that you have to apologise for breathing in their very presence and none the wiser, they’ve failed. Try not to turn it on yourself with a hatchet to your self esteem.

MrsNails
MrsNails in reply to SnazzyD

Nice! 😉

Oh dear! The advice is to stop Methotrexate during infections because with such suppressed immunity it can make them much worse. I don’t know what to suggest, you need much better, more knowledgeable, advice. It sounds like this woman just wanted you out of the door, and was threatened by your expertise.

Do you have any symptoms of Adrenal problems? Sickness, dizziness, fatigue, stomach pain. It’s a bit soon but you need to be alert for them. You need to express your concerns to your doctor or a recommended Rheumatologist ( they are not all great with our conditions) or a Vascular specialist.

It never ceases to amaze me how some people in positions of huge responsibility can conscientiously do their jobs badly and potentially do more harm than good. Now that I know what good, informed advice feels like, I cannot stand anything less. Let us know how you get on.

Thank you Jane, that is exactly how I perceived the call. " Oh Yeah, done that, tick the box", I'm OK at the moment, and if need be, I will take myself to Urgent Care via my GP. I've never liked her, the other Rheumy nurse is totally the opposite, gentle empathetic, and I think, has more experience although less seniority. These are the team at my Rheumatology specialist clinic. I will follow my own instincts and the guidance of my family here. I think I have learned from you guys what to expect regarding the adrenal insufficiency. I will be vigilant and if need be, off to A&E or Urgent Care. Thank you for being here X

The pharmacy attached to my doctor’s surgery has a pharmacy assistant who has taken a dislike to me. This takes the form of putting obstacles in my way at every turn - none of the other staff do this. My husband when to collect my diabetes blood monitoring machine today, coupled with the pin prick things on prescription. Her response to his doing this for me, was to say, you won’t be needing her meds delivered now that you can do it. These are always late and the diabetic nurse wanted me to have this blood testing kit quickly. I have been avoiding her because she winds me up. My husband is a very busy man managing change in universities. He can’t always drop everything. Aargh!

I’m being mischievous here but what do you think her response would be if you went to see her and explained that you felt she disliked you and made things tricky, and you wondered what you may have done to upset her and what to do to put things right? May be worth it just to see the look on her face! 😅xx

PMRpro
PMRproAmbassador in reply to Thelmarina

Like it ...

puffyface
puffyface in reply to Thelmarina

Lovely idea! 😊

I did try being assertive on the telephone and explaining how she made me feel and that I didn’t have this difficulty with her colleagues. She was discombobulated at first and then she moved into a patronising mode, as if I was mentally delicate. The trouble is, she has a lot of power to cause a lot of inconvenience and she does. There is a type of person who does this, I have occasionally come across it in my working life. It is a type of bullying I guess. We are a bit on the back foot with these people and dependent due to our illness. Sending my huge husband worked for a little while. She did not, at first, give him the run around. Just be aware, they pick certain jobs and are out to thwart.

Oh dear. I should think your mental state is delicate after dealing with this obnoxious person. Clerical,jobs are open to this sort of mis-use. Rotten luck for you ☹️ xx

Yet one more example of the many hurdles we have to leap over just to be heard. Having had a pretty torrid time recently I spoke to the senior nurse at the Rheumatology department yesterday just to let her know about recent events and changes to medication.(not sure why or how but I have now become the conduit between visits to hospital,my G.P. phone appointments and rheumy'nurse,)

I asked if she had received the CT scan and X ray results for the 29th June,no Mr Cunningham you didn't have them on the 29th you had them on the 26th. Yes,but I had repeat X rays on the 29th and my G.P. told me to call you and make sure the consultant had them ready/available for the next appointment.

No Mr Cunningham,calm down,you don't understand you didn't have an Xray on the 29th as they are not on your record. Yes I did have an Xray on the 29th and my G.P. asked that I call you because they show the damage to T5,T6,and T7.

By now I had switched to speaker phone with my wife listening in,I tried my best by adopting a resigned tone to my voice,apologised etc, etc, and when the nurse said we have all the up to date information for the consultant I explained that they couldn't have due to the missing X Ray results and these were critical to the conclusions reached. Off we went again.

You may not have read my previous post but the above scenario is on top of the C.T. scan from 6th June showing spinal damage that had not been reported back to me,my G.P. discovered it while we were on the phone on Monday 29th June.

My wife then provoked a discussion with me about Alice in Wonderland.lol.

PMRpro
PMRproAmbassador

"go back on Methotrexate as this would help me get off Pred"

NOT necessarily at all, it may let you get to a lower dose, that may not be zero. mtx does not replace pred in PMR.

And no - the methotrexate does NOT play any role in the return of adrenal function - unless you want to extrapolate quite a bit from the fact it MAY let you manage on a lower dose of pred as that is the only thing that triggers adrenal function. But that takes time. If you are at about 6mg now (just guessing) you are just getting to the stage where the pred is maybe low enough to poke the adrenal function. This is the start of that part of the journey - not the end.

So if this is the best level of advice the lady can offer - I'd be avoiding her assiduously ...

Suffererc
Suffererc in reply to PMRpro

I cannot ever believe these people are in the caring profession. Without suck peeps they would be out of a job

PMRpro
PMRproAmbassador in reply to Suffererc

Outpatient functions do attract the lazy and poor staff - that isn't to say there aren't fantastic OP nurses, but ...

Another problem with gate-keepers. At the moment due to Covid all enquiries have to go through the rheumatology nurse help line. I only wanted to ask my rheumatologist if she could arrange a CRP test when I came down for my depo-medrone injection. The rheumy nurse insisted on reading my whole file and tried to meddle with the treatment plan agreed by my rheumatologist, saying I shouldn't be on long-term steroid injections, you're only supposed to have them twice a year. I had to go through the whole story of why I'm on injections rather than Pred. Then she tried to tell me long-term steroids affect the liver, and I said no they don't. I tried to keep calm and in the end said Look, I'm not asking you to get involved in my case, could you please just ask Dr M to call me and she got all huffy. I've been wondering whether to put in a complaint or let it go, I worry about her giving bad advice to others.

I had poor advice recently from a Rheumy Nurse - ‘Try Paracetamol’ 🤪

So l simply wrote to my Consultant with an update on how l was, he rang me the next morning & changed my dose of MTX (NOT ALLOWED according to same Rheumy Nurse!)

My Nurse Practitioner is working split shifts & at weekends so a bit harder to catch than usual.

MrsN

Yes I email Dr Mackie directly now rather than deal with the nurses. Some are good, but they're not all consistant and that worries me if they're giving out advice to vulnerable people who take their word for things. They (like too many many rheumies) think 'Pred bad, Methotrexate good' as that's what they've been taught as they are more used to dealing with arthritis than PMR.

Just to pick up on blood tests in UK. I see a couple of people here have had problems.

We are constantly told that 'the NHS is open for business'. Well, I'm not at all sure that it is. However, I have made 6 visits to our local blood test clinic (totally over 50 tests!!) during lockdown. I have had no problems at all. Consultant and GP both sent me without hesitation, the clinic was empty on three occasions and people were spaced out on other occasions. (I was spaced-out but in a different way :-))

Am I lucky. Or should you try harder?

Same here, I have to go to the local hospital for monthly blood tests and it's fine. It's a Covid free area, they make me put on a mask and use hand sanitiser and usually check my temperature too. Walk straight in to the blood testing room whereas there is usually a massive queue. And results are back in hours. Ironically I had to go to A&E on Monday at a different hospital and because I cough after I take a deep breath, even though everyone says that it I don't have Covid, I had to go through the red/hot channel which must have put me at more risk? They were all fantastic, no queue, seen immediately and tests organised quickly and again, blood test results within about an hour. One of the nurses told me that many of the patients they see are coming in 'more ill' as they have delayed going until things have got worse eg ignored chest pains and dizzy spells etc.

I had poor advice recently from a Rheumy Nurse - ‘Try Paracetamol’ 🤪

So l simply wrote to my Consultant with an update on how l was, he rang me the next morning & changed my dose of MTX (NOT ALLOWED according to same Rheumy Nurse!)

My Nurse Practitioner is working split shifts & at weekends so a bit harder to catch than usual.

MrsN

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