Last February my mother 84 was diagnosed with PMR.Her starting dose was 15mg.
Gradually tapering successfully... And now after 9 months she's had a set back. Currently down to 2mg daily and about to taper down to 1 when she has felt ill again with typical symptoms of PMR coupled with the previous week that she had caught some flu-like virus... The telephone Dr instructed her to go up to 40mg a day for a week to help her breathing as well as the PMR. We all were a bit a shocked at such an elevated dose and questioned the dr about the amount. The Dr confirmed she had said 40mg. She was very concerned for my mother's breathing and said that if things did not improve we were to take my mother straight to A&E...
Reluctant to go for 40mg, we all agreed she should try only 4mg to begin with before I consulted here with more experienced people.
Within 24hrs of increasing from 2mg to 4mg she now has a great improvement in her right arm and shoulder but her neck is still stiff and painful. Her breathing has also improved.
Although I do read about PMR on this forum (I am Hashimotos thyroid), I can hardly pretend to understand exactly what it is. I know how serious it is and from reading what I have, I am aware that there are extremely knowledgeable folk here upon whom I feel I can rely upon more.
Any advice please would be most welcome.
Many thanks
Poppy the Cat
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Pred is used at such doses for acute issues [and that includes respiratory problems] … and a week is fine - she’ll be able to drop back down - maybe to 3 or 4mg rather than 2mg.
On another point, she has reduced very quickly, so maybe that needs to be addressed once she has got over this blip.
Thank-you for your prompt reply.It's good to know that such a dose is correct given the circumstances.
Over the last 9 months my mother has gained an alarming 15k at only 4'11". So we are obviously also concerned about the diabetes risk. Prior to PMR she had brought down she her score to 38 from 42 by following Dr. Moseley's regime of a low starch diet and weighed 70k. She now weighs 85k. We know that when taking prednisolone this is allowed for, by pushing up the threshold to 53, before being judged as 'diabetic'; nonetheless is is still a concern hence why she has been eager to taper down.
However, after reading what I have on this forum, I also had suspected that maybe she had tapered a little too fast?
So just yo confirm she could adopt this higher 40mg dose just for a week to help her breathing and then come straight down to 4mg? Would this be correct?
The GP is clearly giving much higher doses than you would expect for more reasons than the PMR, it is being prescribed to reduce chest inflammation and improve your mothers breathing as well.I believe that starting the higher doses sooner , rather than later is important in these matters to reduce various problems , also linked to your Mother's infection which could increase her risk to require hospitalisation.
You could double check or get a second opinion from your Mother's Rheumatologist about the dose levels but because your mother's condition is more complex and not just caused by PMR it wouldn't be appropriate for anyone on the forum to answer in relation to doses or at what to do except for recommending that you get a second professional opinion and as soon as possible so that you don't delay urgent treatment any longer than necessary.
You could voice your concern about the higher dose , and possibly ask if it is possible for your mother to take the 40 mg in two doses , if that would be easier for her or if she is concerned about side effects.
It's likely she wouldn't be requested to take these high doses for very long , but only until the crisis with her breathing and current infection has been resolved.
If you can't get hold of anyone to speak to you may need to take her to A and E to resolve her treatment.
Are they planning any other tests?
Is the GP concerned that she could also develop pneumonia ?
Does she also have other breathing or respiratory problems?
All of these things will have made a difference to the GPs decision and would be reflected in the choice of dose.
Hope you get answers quickly and you Mum improves soon , take care , Bee
Thank-you for your equally informed and very caring reply.
Yes my mother's lung situation - not knowing exactly what else to call it, is rather strange.
End of April '22 she caught Covid.
The rest of us all improved but suddenly she became worse. On 7th April we rushed her in, unable to breathe and she was admitted to hospital.
A scan revealed that she had suffered a pulmonary embolism - in both lungs.
70 mg Rivoroxaban treatment followed for 3 months. Things improved.
In June she experienced a horrific nosebleed and had to go back into hospital. It bled for 2 days and she was in hospital for a whole week and naturally took her off the anticoagulants.
In the July she has a strange pain in her wrist that she out down to RSi??
February '23 we took her back to A&E.
She was diagnosed with PMR and put on 15mg of Prednisolone.
On 3rd of March the Consultant suggested tapering down to 12.5 mg daily.
On 17th of March reduced under instruction to 10 mg and then to reduce 1mg per month from there in.
Mid April she became ill again with covid. Her diary states that on 19th April '23 her oxygen saturation fell to 82%. On the 28th April she was sent in for a CT Scan...and kept in till the 4th May.
The results showed there were still blood clots in her lungs.
She resumed the Rivoroxaban.
This breathlessness has never resolved itself since and indeed has become worse.
Throughout this time many auscultations have pronounced her lungs to be 'clear' but she continues to experience difficulty breathing.
The anticoagulant Dept insist that the issue cannot be blood clots due to being on treatment. However, one GP has said there is such a thing as micro-clots but the anticoagulant Dept dismissed that.
We all consider Covid to be the Gift that keeps on Giving but nobody can explain after so many tests what this breathlessness is?? Could it be related to PMR in some way?
So just to recap, increasing to this higher dose will help my mother's breathing? As daunting as the prospect of climbing to 40mg is for my mother it seems the only thing to do. She is clearly very concerned about such a high dose... And if tapering is intended to be so measured and so gradual what will the effect be of going from 40mg after 7 days, down to 4mg? It feels like falling off a cliff?! Needless to say I am also very worried.
Many thanks for your extremely perspicacious insights and advice.
Slow tapering is for PMR and longterm patients at a dose above about 8mg. If you are only on a high dose for a week, you can just stop it immediately - or, in our case, return to the baseline dose you were on before the short course.
Your mother may be on higher doses for longer than a week if the steroids are to treat her breathing . It would all depend on how well she responds to treatment.I would say in your case you need to follow the doctor's or specialist guidance on this because you are not just following " sick day" rules for PMR, it appears the steroids are also meant to help with chest inflammation.
When it finally comes to her reducing , we usually recommend that people do not instantly jump back down from short term high dose they are on to the original dose because this can cause more side effects, or as you say if you made such a drastic drop over 24 hours the feeling off falling off a cliff.
It's easier to reduce in steps over a number of days to a week.
The sick day rules can last upto 14 days in some circumstances without it complicating your ability to get back to the previous dose.
With your mother's age and fragility a graduated reduction over a number of days would be easier on her system.
But it's probably better to post again at the point that your Mother can reduce her dose for advice on that when you have more information about what dose she would be expected to return to.
Depending on what is happening with your Mum and her coexisting conditions and infection you may find that the GP would not be expecting her to return to 4mg but they may suggest that she has a higher dose until she has improved. But anything we can say on the forum can only be speculation because we aren't privy to the thoughts of your Mother's doctor's, the possible diagnosis they are considering and the strategies they need to use .
If you Mother has got a respiratory specialist, or had one in the past I would suggest that you get hold of the email for the named Consultant and send them a letter via their Secretary explaining what is happening and to request their opinion and some extra advice. Or you could ring their Secretary, explain the situation and ask for an urgent call back. In the situation I am sure they would help.
That is a perfectly normal dose of pred for patients with breathing difficulties - and you do need to accept the doctor's instruction on something not related to PMR, which chest problems are not. We know about PMR and its vagaries but when it comes to other medical conditions, do listen to the GP. In her case there is also an element of protection against adrenal insufficiency after 9 months on pred and the body's demand for more corticosteroid to deal with the acute illness.
She will be able to drop back to a low dose after the short course of 40mg. However - since you say she feels much better on 4mg, the 2mg is obviously too low for her PMR and you should consider remaining at 4mg at least.
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