Hospital postponing check up

[Aeowin777]

Tapering pred and really starting to feel PMR returning down to 4mg was supposed to see consultant in April when I would be down to 1mg - really not sure how I was going to get there - now due to strikes my appointment is moved to end July which means I will be on zero Don’t know what to do feel exhausted all the time, losing weight and so stiff by end of day

[SheffieldJane]

you need to be referred to an Endocrinologist who can take things from here. Your symptoms seen typical of an adrenal struggle towards the end of steroid treatment. See if the Endocrinologist is more accessible in the first instance.

[Aeowin777 in reply to SheffieldJane]

thank you. I guess I need to do that through the gp. Everything takes so long I moved to a different county in uk last September and asked to be transferred for my hospital too. The new gp said they could do that but would have to do it as a new referral which could easily take 8 months so I decided to stay and original hospital and just travel. I haven’t seen the specialist since July 2022 and won’t now see them again till this July now. Just seems like once diagnosed they stop seeing you much. Not had a blood test for a year - just feel unwell all the time and just left to get on with it

[posthinking01 in reply to Aeowin777]

Just re-read your comment - this is totally unacceptable and you can change things by phoning through to the department - I did this and got an appointment the very next day - surprise surprise I thought they were supposed to be busy.

[DorsetLady PMRGCAuk volunteer in reply to posthinking01]

...yes but they may have just had a cancellation, and you struck just at the right time. Why it's always worth trying... good for you.

[piglette]

Do you think it is the deathly fatigue. Your adrenal glands are complaining about not being given enough of their daily steroids, so they are having to do some work.

[123-go]

You have my sympathy. It is not right that you have been left in limbo with your health deteriorating.

I strongly advise you to write to the rheumatology department so that attention can be focussed on your situation. You have every right to do this so please don’t feel you will be discriminated against. Here is a link which advises what to do:

england.nhs.uk/contact-us/c...

To begin with state your reason for writing, eg the length of time between your last appointment and the next one predicted.

How you are feeling in terms of your PMR, how this is impacting on your everyday life and mental health.

What you would like to happen now: To receive written acknowledgement of receipt of your letter: for your comments/concerns to be taken seriously and with respect: that your concerns will be addressed as soon as possible and how this will be achieved.

You can correspond through email or Royal Mail (ask for proof of posting receipt).

These are just suggestions. I have written such a letter and my concerns, which were justified, were addressed appropriately and satisfactorily.

Whatever you decide to I wish you well.

Edited to remind you to keep copies of everything you write and a record of phone calls with dates, etc if these occur.

[Judyliz in reply to 123-go]

This is such a helpful reply for so many of us and for so many situations within the NHS. Many thanks.

[DorsetLady PMRGCAuk volunteer]

hi,

Sounds very much as if adrenals are struggling, so maybe have a look at this -

healthunlocked.com/pmrgcauk...

But you do need medical attention, and first stop is to go back to GP to get some help. By all means follow excellent advice re contacting Rheumy department from 123-go but that is going to take time…..whether old or new hospital.

[PMRpro Ambassador]

The fatigue and weight loss are cardinal signs of adrenal insufficiency and a sign you need to slow down your tapering to allow your body a chance to catch up. The only thing you can do to encourage the return of adrenal function is to get to and remain at a low dose of pred, there are no other treatments that will achieve it or speed up the process.

However, if the symptoms of the PMR are returning it is time to stop tapering. You are not reducing the dose relentlessly to zero come what may. You are tapering in a process caled titration to find the lowest effective dose, the dose that gives the same relief from PMR symptoms as the starting dose did - that should apply all the way through the process, you should never feel worse at the end of a taper step than you did at the beginning. Other pains may appear - not only PMR is dealt with at higher doses of pred, OA is too.

Your GP can deal with the basics: you need a basal cortisol blood test, cortisol measured on a blod sample taken between 9am and 1pm. That is a good indication of the situation and whether you need to see a rheumatologist or endocrinologist urgently. It also should show whether you need some educaion in what to look for should you experience an adrenal crisis - most likely if you were to be under severe stress, whether physical, mental or illness/injury.

It is ridiculous that existing patients who move house are left in the same position as undiagnosed patients, In the meantime - should you feel really unwell, confused, dizzy, faint, get medical advice immediately.

[SnazzyD]

Sounds like your dose is too low (stiff/weight loss) and now you are hitting low adrenal function too which can make you feel dreadful all over. What dose did you feel better at? It may be worth going back to there and reducing way more slowly while you are waiting so you don’t get into a mess with resurging PMR and unmanageable adrenal insufficiency. Do read DL’s link, it’ll make that bit clearer. Sometimes it helps knowing why so the worry doesn’t fill the gaps.

I won’t add to the good advice about contacting doctors. An endocrinologist can be helpful in slowing that Pred down if the rheumatologist wants to go like the clappers as I found. I was left in the lurch by my rheumatology Dept which got me really stressed but actually it enabled me to reduce at my speed very successfully once I decided to take control while the hospital cogs ground into action.

[posthinking01]

Hi well done for getting that far but as someone who has adrenal insufficiency (Addison's) please be careful - if you are losing weight then you could be approaching an adrenal crisis - please take it slowly and stay at the amount that doesn't make you lose weight - then if I were you I would find out the phone number of the secretary to the consultant you see and speak with her that you need help. You cannot be expected to do this on your own it is too risky on your own.

[Koalajane]

it seems to me your rheumatologist has tapered you far too fast. PMR lasts as long as it lasts and you should not taper as fast as he wants. He seems to want you off pred in 2 years. We wish PMR thought the same.

Would you be happy with your doctor taking over your care as many of us in uK are looked after for PMR by our GPS.

I hope you can get sorted soon as you need sme help now

[posthinking01 in reply to Koalajane]

Totally agree with your comment - it is so risky what they are asking her to do without medical guidance - I am also being asked to come down on my steroids for Lupus/Addison's - what is this latest fad - I was also asked to switch my steroid from methyl which suits me for prednisone which may take over a year and I will be in extreme pain etc. - I have declined !

[PMRpro Ambassador in reply to posthinking01]

I was switched from prednisolone to methyl pred - it was the methyl pred that didn't work as well. On switching to prednisone - all was fine and at a lower dose. Why do you think it "may take over a year and I will be in extreme pain". They are both corticosteroids and can be substituted for one another directly.

[posthinking01 in reply to PMRpro]

I am going on what the Professor said - how strange methyl didn't work so well. I am pleased you are feeling better though.

[PMRpro Ambassador in reply to posthinking01]

What did he say? Itls the "may take a year" that seems really strange. My problem was that I had steroid-effects that I have never had with either prednisolone or prednisone. The methyl part of methyl pred is supposed to increase the antiinflammatory effect - for me it increased all the other effects! Methotrexate is also supposed to do something similar - again, it increased all the pred effects and in some cases introduced some I'd never had, even with methyl pred! It wasn't a pleasant experience either!

[posthinking01 in reply to PMRpro]

Can I ask what the other effects were in case I can recognise any I might be experiencing without realising it is the methyl.

[PMRpro Ambassador in reply to posthinking01]

Joint pain, massive weight gain which led to Cushingoid appearance, severe steroid myopathy, a lovely black beard - I have been white haired for the last 30 years! Hair went mad. All things you would associate with corticosteroids - but I don't have except on methy pred.

[posthinking01 in reply to PMRpro]

Actually how did you do it - immediately or slow switch.

[PMRpro Ambassador in reply to posthinking01]

Overnight - I was on 20mg methyl pred I think and went straight to 15m prednisone the next day as suggest by my rheumy trained GP. I was sceptical but the pred effect was exactly the same as the one I had had years before starting prednisolone from scratch.

[posthinking01 in reply to PMRpro]

At first I thought wow 20mg is a high dose of methyl but I think it might be the conversion - methyl is 4 mg x 5 of HC so 20 mg equiv. That gives me hope then - he is doing research into how he can get people off steroids altogether - but wants me on pred first as he says it is not good for the heart - I have had no problems whatsoever. I was on HC and got down to 30 mg from 200 mg after Sepsis and could not walk as my legs filled up with water.

[PMRpro Ambassador in reply to posthinking01]

I was on 20mg simply because I had had to increase to that to get any relief, I also had to take it in the evening or I got no relief before afternoon. Why we don't know - I had been fine on enteric coated prednisolone at a much lower dose but moved from the UK to Italy and prednisolone of any sort wasn't available here, Medrol was usually used instead, Maybe it was the fillers but it just didn't suit me. Then I was switched to Lodotra, a delayed release form of pred which you take before bed and it releases at 2am to be present early morning for optimum relief of morning symptoms. No more problems,

[posthinking01 in reply to PMRpro]

Thanks for all the information very interesting. Are you still on the slow release in the UK or are you still in Italy.

[PMRpro Ambassador in reply to posthinking01]

Yes - but I am also on Actemra to try and get the dose down. I live in northern Italy and hope to stay here as long as I can. My husband died just over a year ago so it is inevitable I must think about the UK if I can no longr live alone - both daughters are in the north, one in Yorkshire and one in Scotland, it takes a while to get here and both work in the NHS.

[posthinking01 in reply to PMRpro]

I am so sorry you lost your husband - my hubby is Italian - Northern Italy Padova - hope everything works out for you.

[PMRpro Ambassador in reply to posthinking01]

Mine was a Brit -we moved here 15 years ago after he retired from the NHS and we both worked freelance for some time.

Padova - one of the holiday flats in the block is owned by people from near Padova. I live almost on the Austrian border - REALLY north It's about 4 hours drive to Padova - I drive to Treviso to fetch visitors now and again, love the drive!

[posthinking01 in reply to PMRpro]

Sounds fantastic - hope you are able to stay if that is what you wish and are able.

[Purpleazalia]

If your PMR symptoms are not under control at 4mg, the NICE guidelines (for medical professionals) say you should return to the previous dose that did control them. ...then allow the symptoms to settle before tapering again at a slower pace and/or with smaller reductions. Here is the link

cks.nice.org.uk/topics/poly...

If you can't get advice from your rheumatology department, perhaps you could show this to your GP and get their support to increase your dose in light of the long wait to see your rheumatologist.

Your GP can also authorise a blood test to check your inflammation levels and other aspects of your general health.

I hope you have a successful outcome and get the PMR symptoms under control again soon x