Today is my last day of 10 mg twice a day. My GP has me going to 5 mg twice a day. I had to ask to have even that much since I don’t have an official diagnosis and see a rheumatologist next Wednesday(1st visit). I was feeling better so went ahead with a 4 day family trip so I’m not at home and will be flying home the 2nd day of reduction. Yesterday while still on 10 mg I had severe pain and overwhelming fatigue return. I took the rest of my dose quickly. Is that possibly due to over exertion from driving, flying, walking and pulling a suitcase behind me? If so the flight home could be quite horrible. Dare I ignore GP and stay at 10 mg twice a day? Today is day 15 of Prednisone and I’ve been reduced to original pains twice already! Still confused but thankful for this forum! I have been reading the humorous takes on PMR along with the serious helpful suggestions! I am so grateful!
GP tapering me......pre PMR diagnosis.....and I’m... - PMRGCAuk
GP tapering me......pre PMR diagnosis.....and I’m on a trip!!
Oh dear vnett. I wouldn’t want to reduce whilst doing a gruelling journey at all. Ask him if the reduction can be postponed. I am not familiar with the reduction method he is using. Maybe he wants you to be symptomatic for the Rheumatologist. The main way to get a diagnosis is your response to Prednisalone. Blood tests can actually appear normal in a significant number of cases. To me it seems like needless suffering. A split dose would not suit me either. I would take my 20 mgs early in the morning, altogether.
Oh thank you for quick response. I wondered why he had me splitting it. I’m having such insomnia as well and wondered if it was the late day 2nd dose. Unfortunately or maybe it is fortunate that I cannot contact him. I’m out of town and he is in Thailand till after my rheumatologist appointment. He reluctantly gave me the script for 5 mg and told me to not be tempted to stay at the 10 mg until my travel day(and only if I absolutely could not manage). I like your take on it better! Thank you!
“Driving, flying, walking and pulling a suitcase”! Oh dear, so much stress on the body and, if it is PMR, stress doesn’t help. If it were me, I would follow your instincts and stay on 10mg twice a day (or better still 20mg all in one dose in the morning) until you are home and then tell him you “absolutely could not manage”. Good luck with the rheumy appointment next week.
Hi,
Yes definitely due to extra stress from flying etc.
To survive I think you need to stay at 20mg until you get home...think I suggested you do that until you see a Rheumy in a reply to your previous post. And that before you said you were going on a trip!
Not sure if I sent this before, if not have a read.
healthunlocked.com/pmrgcauk...
I do believe you did tell me to stay at higher dose but he did not prescribe enough for me to do so. My daughter actually brought 4 20 mg tabs leftover from a sinus infection as a backup for me. I’m not certain what his reasons are other than that he still does not thinks it’s PMR even with my symptoms and response to the Prednisone. I also am too often the follower of the all knowing doctor’s instructions! Time to rethink that! Thank you!
Hi again,
It’s very difficult for all patients at the beginning, so we do as the doctor says- we assume he knows best! Unfortunately they very often don’t understand PMR, as my intro says it’s not like other illnesses, and therefore cannot be treated in the same way. They also seem to have a irrational fear of Pred, unlike other medication which they seemingly dish out like sweeties (candies).
You thought you were going to be okay for your trip, but use this as a warning that the Pred doesn’t cure the underlying illness and as ammunition to prove what you have actually is PMR.
Plus on your way home request assistance at the airport - no more lugging heavy suitcase. If you can, ring 24hours beforehand (either airline or airport) if not, just turn up at help desk and ask nicely. 😔
Thank you for the airport assistance suggestions. I had not thought of that and will make arrangements. I did use the elevator and needs assistance entrance to an event last night as well as valet parking so as to walk a shorter distance. I have another grueling day (of fun things to do) and have heeded the advice. There will be no reduction of the Prednisone. We worked it out so I will have enough to get me home and to my rheumatologist.
Good on Pred front. And ask for any help you need...I find normally people are very kind!
Enjoy the rest of your stay.
Thank you so much and yes kindness is all around me! You enjoy your day as well!
I had to ask assistance last year as I was travelling with a walking boot. The assistance was great. Escorted everywhere, wheel chair for the long distances at the airport, and all luggage carried. Don't be afraid to ask.
He cut your dose in half? OMG! I guess I can understand the twice a day, as people often split their dose if they need to, although it's unusual for a doctor to prescribe it that way. But a reduction of 50% is nothing but a recipe for disaster. And to have you swinging up and down like crazy after just days on pred is not competent care. If anything you should not reduce at all until you are feeling as good as you are going to get, nothing worse than 70% of your pain should be gone, and many achieve better than that. Then reduce by only 10% at a time, staying at each dose long enough to make sure that you are still controlling the symptoms. Ten per cent of 20 is, of course, only 2 mg. It's not our place to tell you to ignore your doctor, but we can tell you to pay attention to your own symptoms and treat them accordingly if you have enough pred. And when you get home maybe find a doctor who knows what s/he is doing?
Over exertion, driving, flying, walking, pulling suitcases.....absolutely will increase your pains and stiffness. When I’ve flown, which usually messes up my daily routine of doing not much 
I have upped my dose of pred to cope. (Don’t tell my GP!!)
So you’ve been on 20mg a day and your GP expects you to drop to 10mg/day after only 15 days. You and I know that’s not right. That’s an invention of his. Not a taper. It’s asking for trouble. I started at 20mg and after 4 days (brilliant reaction to pred) my GP had me drop to 15. Of course it backfired, back to 20mg! Such a waste of time, effort and pain.
Do you have enough pred to stay at 20 til Wednesday? If so, think of it this way, 4 days out of a potential 4-5 years is nothing. Fingers crossed your rheum will come up with a better taper for you.
If your ESR and CRP were raised, you should have them rechecked before reducing. If like me you have ‘normal’ values you have to go by symptoms, which you already have, so no drop. Even if your blood is ‘normal’ but you still have symptoms, symptoms rule.
I left out attending an all day athletic event that involved more walking, sitting in unforgiving seating and countless stairs, not to mention poor dietary choices!!! Maybe I should have my head examined too!😂
5 days at 20 mg twice daily, 10 days at 10 mg twice daily(last today) and 5 mg starting tomorrow. Another walking, sightseeing day, pulling suitcase, driving, flying, driving. Then I wait one day before seeing rheumatologist. I would not have enough to up my dose to get by so it will be rough! My inflammation markers were elevated though not the high numbers others have. I do have the 4 leftover tabs from my daughter so I could accept them and get by. I believe either a bit of deceit is due my GP or some brutal honesty!! Which should it be? Thanks for wise advice!!
He gave you an out by saying unless you really can’t manage. Well I’ll save you the pain you can’t manage.
I believe I will be letting him know that! And if I were to back down (doubtful) I have a ferocious husband to say it!!
I'm in no way an expert here's but have read stuff on this forum for several months from the "wise ones" and what your doctor is advising you seems shocking. Poor you, hope you have better luck with your rheumy 🤞
Thank you! I’m been given so much good advice that I feel better prepared for the appointment with the rheumatologist and I owe that to the generosity of this forum.
Dear vnett,
That's an heroic reduction in my experience. I've been on pred for about 15 months and don't look like coming off anytime soon. I'm down to 5mg from 6mg and am starting to suffer again. Awful fatigue and pain. It won't take much more of this for me to go back to 10mg and taper again. My GP wants me off pred asap but I don't think he understands the symptoms and their severity, I started on 25mg one dose per day for your info. I stayed on that for months. I don't know whether pred is the monster the Dr says it is but life would be extremely challenging without it. Good luck to you!
"My GP wants me off pred asap ... I don't know whether pred is the monster the Dr says it is"
Not really according to a study done by a top Mayo Clinic PMR/GCA expert. Give this link to your GP and tell him to read, mark, learn, and inwardly digest it:
medpagetoday.com/rheumatolo...
You need pred while the PMR is active - and that is a median duration of 5.9 years. You might get off sooner, lots do. But it won't be "asap".
I now know that the swift reduction seemed to be my GP’s issues with the Prednisone and his apparent dismissal of PMR. He has always been an excellent physician but as you’ve said he doesn’t seem to understand the severity of the pain and fatigue. I hope you find your necessary dose and relief again. I’m truly starting to see the complete picture of PMR. It takes time and a good plan in place with your physicians. Thank you!
My daughter is a pharmacist and she told me Prednisone is a miracle drug not a monster! The side effects can be managed better than allowing the devastation of many illnesses and conditions!
Your daughter may qualify for honorary membership here!!!!!!
Wow! A daughter Pharmacist who sounds more knowledgeable about steroids than many doctors! A big pat-on-the-back to her! And what a great comfort it is sure to be for you to have her around as you go through the maze that is steroids and PMR. It was a pharmacist who eventually diagnosed me after a whole year being failed by 4 doctors and a rheumatologist. A good pharmacist is worth their weight in gold. And they know more about the drugs we take than our doctors. Roughly, whereabouts are you? There are loads of PMR support groups dotted around the UK and I’m sure if there is one near you, you would find a great welcome among others who understand exactly what you are going through if this is PMR. Also, they would welcome your daughter with open arms to hear her share her knowledge of steroids. Just a thought.......
I am most fortunate, having a very well informed pharmacist daughter and another daughter who is a school principal and works with special needs children, many of whom have multiple health and meds issues. My educator daughter was visiting me on one of my first and worst days and within a few minutes had diagnosed PMR. She then proceeded to confer with her sister. They had it wrapped up before I saw my GP. Oh if only there was one more child with a medical degree! 😂. Between them and your marvelous support forum I have such comfort. I would love to share them and there knowledge but I am far away. I’m a Yank! I live in Chicago. My maiden name was Gee and I know my family came from England(does that count)? I have not found a support group here with the vast knowledge you all so graciously share. I’ve shared information on your forum and I’m certain they both will read and possibly post! I will tell my daughter her value again, gold!!
" Is that possibly due to over exertion from driving, flying, walking and pulling a suitcase behind me?"
Quite simply: Yes. After 14 years of PMR and 8 years well managed on pred, if I did that, I'd be on my knees. AIRPORT ASSISTANCE!!!!!!
Have you tried taking 15mg just once a day? The way he is dosing the pred is most unusal - all the recommendations are for a single dose per day, as early in the morning as possible. That deals with the daily batch of inflammation more effectively. Splitting the dose should only be required in some cases where the effect doesn't last the full 24 hours - but for most people taking 2/3 in the morning and the rest at some later point, a couple of hours before you expect the pain to return.
Your GP is a poor doctor - he didn't check guidelines and he isn't treating his patient, he's treating a robot. He wouldn't be my doctor for long - unless he went through a considerable attitude change.
Oh my! 14 years! I’m sorry to hear it has been such a long time for you but I now understand how you’ve become so knowledgeable! I will heed your advice. I took my full morning dose but am now taking the remainder of it rather than splitting. I believe my GP said something about the later dose getting me through the night. I was having the usual intense morning pain and it would worsen around 9:00 PM again. The 2/3 makes more sense. I have to hope that the rheumatologist is familiar with the guidelines and has fewer concerns about Prednisone and the better attitude regarding PMR. I’ve read her bio and PMR is one of her areas of expertise!
It is a better idea to see if you need a later dose first! Many people don't - I never have for example. But beware - there are a lot of doctors who don't approve of splitting the dose at all so just follow your instincts!!!
I will try to listen very carefully to what my body signals tell me! Right now they are screaming go home! I’m sorry to say I can’t and I have another trip in a little over a week! I’ll be better prepared for that one! You’ve managed this for a long so your instincts have served you well. I’m in training and hopefully a quick study. And if I’m fortunate, I will get better medical assistance next week. Have a wonderful day/evening.
Is your GP nuts? That is a mad reduction of 20mg to 10mg per day. What is he suggesting after that?
He’s handing me off to a rheumatologist next Wednesday and I assume another round of tests. Hopefully I’ll get a diagnosis and sensible treatment plan!!! Even though he himself mentioned PMR/GCA he then said he did not think that’s it. I truly believe he wants it be be a stress induced inflammation. I’m going to rest my hopes on the rheumatologist!! I now reaize l from reading this forum that it could be a long process and I’m ok with that if I can have faith in my doctors.
I do hope you have a sensible rheumatologist. I know what you mean about tests, I have had dozens of them and all that happens is that they then suggest more to see if anything has changed, then they seem to ignore it all anyway!
I do hope so! I’m emboldened by the knowledge you’ve all shared and will endure the tests but I will not let her be as dismissive as my GP has been. All of my doctors are in one location, a very fine medical community. If not confident in her I will seek another. Are you in good hands now for your treatment?
My mother has PMR and we have found that tiny steps in reduction is the way to go. Cutting your dose by 50% seems like madness to me and it could result in you being increased back to where you started. As for not prescribing enough tablets to cover you while you are away, shocking, I would complain. What if for some reason you were delayed getting home? You should never be put in a situation where you don’t have enough steroids.
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