Latest visit to my Physio, part 2.

[pmrgcavictim]

One month on from my joint physio appointment, my usual Rheumatology Physiotherapist, and the Spinal Physiotherapist. My post a month ago, "Latest visit to my Physio", explained that it didn't go very well when the Spinal Physio asked what dose of Pred I was on. She wanted me to reduce 1mg per month to zero. Have been on Pred 5 years at this point. My latest joint Physio appointment this week, the Spinal Physio wasn't happy that I had only reduced from 7mg to 6 .5mg. Now comes the good part, or should I say, unbelievable part. "If you don't reduce, ( I assume at her 1mg per month ) I will write to your GP, and ask or tell him, ( can't remember which she said ) to withhold your Prednisolone Prescription. I need help from the very knowledgeable experts on this forum, to point me towards some information that I can download, in an attempt to educate this person (being polite then ), as to how long term steroid users need to reduce their dose. I have had a brief look at FAQ, but not found what I need yet. Thanks in advance for the help that I know will be on it's way. Thanks again. Trevor.

[SnazzyD]

So, is this physio a prescriber and qualified to make rheumatological clinical decisions then? It’s unlikely. So they are going to write to a doctor who does prescribe that they should stop your Pred and in doing so, put you at real risk of adrenal crisis? The FAQ’s section on adrenals will tell you why this idea is not safe. PMR aside, this is a silly idea. Here are some guidelines to this effect. In the key points you are said to be Prednisolone dependent (as in you can’t just stop it) if you have has 5mg or more for more than 4weeks.

rcpjournals.org/content/cli...

I’m sure someone else will come back to you from the PMR perspective.

[piglette]

Surely a doctor is prescribing you steroids and they are in charge of your dose ? How knowledgable are your physios about PMR? Do they work with a lot of people with the illness? I don’t know if your physios have heard of an adrenal crisis, hopefully your doctor has. If you just stopped the steroids you could end up in hospital or worse.

[PMRpro Ambassador]

I would preempt the "child" with a "distressed" phone call to your GP, reminding them that you are a longterm steroid patient and the physio is threatening to have your pred prescription stopped which is dangerous and would probably result in the PMR symptoms returning into the bargain.

This is the NHS document relating to steroid use and adrenal insufficiency

sps.nhs.uk/articles/advice-...

which says:

Summary

The NHS England and Improvement national patient safety alert (NatPSA) has specified a number of actions that organisations need to implement.

To support implementation, the Society for Endocrinology, the Specialist Pharmacy Service (SPS), and the British Association of Dermatology (BAD) have produced more detailed guidance.

This can be used by primary and secondary care providers as necessary to implement the NatPSA in a more consistent way.

The guidance addresses the following clinical questions

- Which patients are at risk of HPA axis suppression from exogenous steroids

- Who should be issued with a Steroid Emergency Card and have sick day rules

- Advice for intercurrent illness, procedures and surgery

- Who should have steroid cover for procedures, surgery and acute intercurrent illness

- Who requires adrenal function assessment

Further information

The link below may be disseminated as appropriate. Any queries from a pharmacy perspective please contact [e-mail]

The link they supply is:

endocrinology.org/media/409...

I have to say that in your situation I would send an email to David Erskine telling him your situation and asking HIS advice as to how to deal with it. I would print off the last link and highlight the bottom of page 4 where polymyalgia rheumatica and GCA are specifically mentioned and give it to the physiotherapist requesting they read it, And I would send the link with a covering letter to the head of the physiotherapy department at the hospital and ask for them to deal with the situation. I would also ask if it is possible to be switched to another spinal physiotherapist as you are concerned the professional relationship is compromised because of their intransigence and attempt to interfere in something that they are not qualified to decide.

[MDT1]

I have no words!! Such ignorance and lack of care is disgusting!!