My main problem is IPF, the loss of lung capacity through fibrosis, in my case very slowly, if inexorably. I am somewhere close to the endgame, say a couple of years at best, and I am quite reconciled to this. The condition is painless and it is given to very few people to know the time and manner of their passing. 🙂
At the beginning of May I developed PMR and I was more or less crippled for a couple of months in my shoulders and hands, with very little sleep. Then blood test; PMR diagnosis; 20mg of pred; and the miraculaous relief so may report here.
Following instructions, I set about reducing the dose and by the end of September I reached 12mg. For a couple of days all was well, but then the pain returned and I went back to 15mg. I tried reducing twice more and slowly, but on the second I only got to 14mg. A return to 15mg was not effective and I gave myself a couple of days at 20mg before dropping to 17.5mg, where I have been for 10 days. I feel good, but 'on the edge'.
Apart from the intermittent PMR, my Autumn has also included both Covid and Flu jabs. In that time the problem I have with sticky lung mucus has been bad, except that is has almost gone in this last period. Coincidence is not cause, but it feel like it. I will see what my consultant says.
My question comes down to whether I would be wise keep to a high dose, removing the hassle of tapering and the intermittent pain it causes and, perhaps, mucus problems. I have none of the shorter term side effects of pred and do not have enough time for the long term problems.
I will certainly have difficulties with my GPs, but might get my consultant onside.
Written by
HissingSyd
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Sorry to read your story, but as you say you seem to have reconciled yourself to what lies ahead.
You do need to discuss with your medical team, but your quality of life is the main objective in my mind -having been in similar situation with late husband.
If you think consultant might be more open to your suggestion then approach them first. Shame about your GP, but a reasoned discussion may change their mind.
The problem with my GP practice is that they are under tremendous pressure. Getting even a telephone appointment is a drawn out daily lottery and you may not talk to the same GP twice in a row. That means repeating my history, with all the misunderstandings that can result. I have talk to them to get the pred.
I am sure the GPs have my best interests at heart, but they are working from the same script, which we know is an inadequate description of PMR. The additional problem is that they are only treating the PMR and, however willing and sympathetic, they do not see the elephant in the room.
After 6 months I am going to be lined up for reviews, rheumy consultation etc., none of which is going to add a jot of joy to my life. I have read what appears here and several of the papers linked. I even know what the GP script says. I am a scientist and I am probably better informed about PMR than a generalist and I know what I have.
Yes it does make life difficult...and mainstream medicine has a completely different view to palliative care organisations as we discovered with hubby. PMRpro has given good advise - as always - and like me "gets" the whole QOL scenario.
Sorry to hear you diagnosis - and hugs for having come to terms with it and faced up to it.
My own personal view is that QOL is all - like DL I faced it with my husband just over a year ago and I so wish I had made more fuss (he wouldn't) as the GP said a few months ago that maybe they could have done better. They could - it wouldn't have changed the end but might have made getting there less traumatic.
Are you not on a palliative care pathway? I know the UK NHS is in a hole but you should have hospice care available to you at home. Palliative care use drugs in a different way - as you say, there isn't time to worry about longterm effects of pred and good QOL is the priority. It isn't end-of-life care - many people are confused and even GPs don't "get" the difference.
and says "Palliative and end of life care should be person-centred. This means identifying and meeting a person’s individual physical, psychological, social and spiritual needs." Your need is for enough pred to function as you wish.
You may be surprised by your GP, especially if you show him that with a well-set-out argument from yourself. But access to the palliative care team should result in the fuss about tapering pred being shelved.
I have been on pred at above 10mg for much of the 13 years I've been on pred. For the last few years due to my husband's health and Covid causing other problems so I was a sole carer (family work in the NHS in the UK, I live in Italy) and I HAD to be able to function. Latterly it was above 15mg, the sort of dose you are looking at. After 3 years at 15-19mg, preceded by nearly 10 years where I only once got down to 5mg for a short time, I am upright and haven't disintegrated yet. I am not diabetic (not even pre-diabetic since I do restricts carbs), my BP is well controlled and I have no signs of loss of bone density. My cholesterol is high - but that is also due to the fact I am now on tocilizumab.
Even at an optimistic estimate, everyone will be on pred for 2 years - but that is for a small proportion. GCA patients start at as much as 80mg. The concern they have about pred is the cumulative dose over the duration of the disease with one expert getting iffy about it at 10g - two years at 15mg day is 11mg. After my 13 years on pred I am way north of 20mg - I've given up counting, that 20mg was probably accrued in the last 3 years.
The trouble with yoyoing, haven fallen into a flare while reducing, is that it often becomes increasingly difficult to reduce again, as you are finding. It sometimes reverses if you taper VERY slowly as we bang on about but you need to be patient. Your journey to 12mg sounds - by our standards - fairly speedy.
Corticosteroids were once the mainstay of management of IPF
and I wouldn't be surprised if that was why the sticky mucous has improved. If so - a twofer ...
If it were me, I would contact the Marie Curie helpline and find out how you can coordinate your needs and the views of your doctors. And me? If I needed more than 15mg pred and there was resistance from my GP - I'd be finding one who does "get" it.
I think that your endgame plan sounds very sensible. I wish you wise doctors who see the sense of it. I wouldn’t be tapering in the winter months anyway. Best wishes, keep in touch. X
>Your journey to 12mg sounds - by our standards - fairly speedy.
So I have learned since joining this group, but it was what I was asked to do.
> Corticosteroids were once the mainstay of management of IPF
The article succinctly summerises the uncertainties of IPF and the dropping of steroids. I am going to be one of the 10 year survivors, but there is no really effective treatment.
Above I said that I might have problems with the GPs. A new GP has only just joined the practice and she is assigned to me.I spoke to her yesterday and what a relief.
Apart from an initial "we must look to reduce these steroids" she listened and by the end left me with a repeat presciption and a timescale for reduction that was longer than even I was planning.
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