Three weeks ago my doctor phoned me and told me that my blood tests showed that I had been diagnosed with PMR, and was given 15mg prednisolone to take daily. My shoulders were really painful, and the steroids certainly helped.
Yesterday I saw the doctor, and told her that I felt better than I had felt for a long time. She then said to drop the steroid dosage to 10mg each day which I started today.
Is this the best way to go forward?
Regards,
Grace
Hi Grace, welcome to the group although I'm sure you'd rather not be here!
Let's start at the beginning: here is a link to a post on here with links to other useful places:
https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316
There are links to a support group site with a lot of info, all medically approved and from experienced PMR-ers. The third link is a paper from a group in Bristol, aimed at GPs with advice on reductions. They recommend 6 weeks at 15mg, 6 weeks at 12.5mg and then a year at 10mg - and this tends to reduce the amount of flares their patients suffer. The pred has not cured your PMR, it is allowing you to manage the symptoms. if you reduce too far or too fast, the symptoms will return.
If you manage OK on 10mg over the next 4 weeks, all well and good. If you don't, go back to 15mg and take a copy of that paper to your GP and ask to remain on 15mg for longer before reducing much more slowly. I was given 15mg for 2 weeks and then dropped to 10mg - it was OK, but not the following drop to 5mg and then zero - when I was worse than at the start. I've never got below 9mg again until very recently when I started dropping 1mg at a time, and that over 4 or 5 weeks. Now I do 1/2mg at a time, also over 4 weeks. It isn't just me, others have found it works for them too. Even the doctors in the UK are beginning to realise it works better. My doc here in Italy knows it works better - she even worries about the rate I'm going!
You should have had at least a 70% improvement within 24-48 hours and it should have got better than that afterwards. You need to have the symptoms well and truly controlled before a reduction - and the recommendation is that a reduction should never be more than 10% of the current dose, so really never more than 1.5mg at a time, and that should be smaller as you go down the dose.
However - good luck, let us know how you get on and we're always here to answer questions.
Eileen
Good morning Eileen,
Thank you so much for your reply.
Since my doctor dropped my steroids from 15mg to 10mg daily, I have been very sore. My shoulders and arms ache, and only get a few hours sleep before wakening, and feeling very uncomfortable.
I go for more blood tests in 11 days, then have a phone appointment with my doctor a few days later who is hoping to lower my steroid dosage.
When I was on 15mg, I felt wonderful, and had no pain, and am hoping that as time goes on the 10mg will work, and I will then too feel good with no pain.
Kind regards,
Grace
That is enough to suggest 10 mg is not enough or the drop was too big. As you'll know I've already pm'd this - I'm copying the answer here for anyone else looking in:
A 5mg drop from 15 to 10 is (in our collective opinions) too big. It is recommended by top experts that any drop should never be more than 10% of your current dose - so 1.5mg at the moment.
You have symptoms - so whatever the blood tests show - you still have PMR inflammation at the moment and the last thing you should do is reduce again. I would go back to 15mg and try reducing just 1mg at a time with at least 3 weeks between each drop to see if that dose is holding the symptoms.
Pred has not CURED anything - it has damped down the inflammation to manage the symptoms the inflammation causes. You must never forget that. The next step is to find the lowest dose that does that - and dropping by 5mg at a time means you are very likely to miss the best dose. 15 works well obviously - 10 doesn't. But you might have been fine at 11mg - still far lower than 15mg. It doesn't mean you won't get lower - just not yet.
The autoimmune disorder that causes the inflammation that leads to the pain waxes and wanes and when it is less active you can go to a slightly lower dose - but it may come back. The most common cause of a flare is reducing the dose too fast.
And don't be misled by the blood results - they can lag behind a flare happening and in some people may be raised at the start but not go up again if you are taking some pred but not enough to deal with the inflammation.
Oh Grace I'm so sorry to hear that you've been advised to reduce from a 15mg starting dose straight down to 10mgs in one leap and are suffering again as a consequence. You are not the first person to have been advised in this way and sadly probably won't be the last. If the advice had been to drop to 17.5mg at the most, it is very likely to have been more successful.
As Eileen has said, Pred is in no way curing your PMR but just damping down the inflammation to enable you to have some quality of life whilst the PMR takes its course. However small the reduction, it is of course possible to get some withdrawal pain immediately following that reduction, but the smaller the drop the less likeliihood of that happening.
My blood markers were very raised at diagnosis and were checked before each reduction - if there wasn't an improvement then I didn't reduce any further for a couple more weeks, following which my blood tests were repeated. I was never completely pain-free down through the doses (some very lucky people are) so both my rheumy and I were guided mainly by the blood tests and that proved successful for me. However that does rely on a GP or rheumy being co-operative in carrying out the necessary repeat blood tests before each and every reduction.
I agree with Eileen - you definitely need to get back to 15mg - perhaps stay there for another few weeks until you feel well again and then just reduce in tiny steps back down to 10mg. If you miss the level again at which the inflammation is stirring up unnoticed, then you will end up yoyo-ing the dose and make it even more difficult to get on an even keel with the reductions. I do hope you feel better soon.
Hi,
Thank you so much for giving me lots of information.
When my doctor dropped me after a fortnight from 15mg to 10mg, I had a flare up which was worse that the original problem. I could not get in touch with my doctor until a phone appointment on 4th December, and during this time I have gone back to 15mg as I was so sore. Although it has helped a little, I am still aching, and waken up in the early hours very sore, and have to get up and move about. This helps with the stiffness, but not the aches. I get another blood test tomorrow, and then my doctor said that she will take the dose down again. I really am worried about this, and would like to take the 15mg until the pain goes away and drop very gently so as not to have another flare up. I don't really care how long it takes if I could stop this pain which the 15mg does not really do at the moment.
Regards,
Take the paper by Quick and Kirwan in Bristol (I gave you the link for in my first reply) with you when you go to see the doctor. If you can't print it off at home yourself, take the reference or the title and make the GP google it - he doesn't even need access to PubMed so he can't wriggle out of it.
It's called:
"Our approach to the diagnosis and treatment of polymyalgia rheumatica and giant cell (temporal) arteritis by V Quick and JR Kirwan"
If the GP still insists on telling you to reduce and/or refuses to read the paper - insist on seeing another doctor immediately to discuss the treatment. Reducing from 15mg to 10mg after 2 weeks is heading for trouble if you have PMR - I know, I've been there. Once you go too low and suffer a flare dealing with it a second time is often more difficult, the experts say that and I know it to be true from personal experience.
If the GPs still won't help - insist on being referred to a rheumatologist. Unfortunately that will probably take some weeks at least - unless you are lucky enough to be near Bristol when they aim to see new PMR referrals quickly (as you will see in the paper) within 2 to 3 weeks instead of the normal 8-10 weeks.
As for having to wait over a week for a telephone consultation - that is disgusting and if it were me I would turn up at the practice and tell them, calmly and politely, that I will leave once I have been seen. There is no wonder the ambulance service and A&E are under siege if you have to wait that long. Telephone consults are bad enough - but they need to be same day to achieve anything. Is that how they treat heart patients as well?
Did you by any chance do too much when you were feeling well on 15mg? That will make things worse too!
Good luck
Eileen
Moderators - sorry for the 4 versions of that post (though I guess it makes it fairly emphatic)! Can you delete 3 for me please!!
The site kept throwing me out with a strange server error message and when I did get back in the post hadn't been entered. Then I couldn't get in at all.
Eileen
Same happening now with this post - slow and then runtime error after about 10 seconds
Grace
I'm so sorry to hear you are still having problems in spite of having returned to the 15mg starting dose.
You appeared to have a good response to the initial 15mg starting dose but the big drop to 10mg didn't help, and returning to the starting dose the second time around can often be problematic.
However, I think I'm correct in believing that you haven't been back on the 15mg dose for more than a few days, so give it a bit longer to see if you get further relief. Don't expect it to get rid of your pain completely - most of us experience that early morning stiffness whatever our current steroid dose. Only a few very lucky people become totally pain-free down through the doses.
Certainly don't consider dropping the dose again whilst you are still really suffering - yes, it is important to get the steroid dose down but if you reduce whilst the inflammation is still raging, then you will be back to square one, and continuous yoyo-ing of the dose just creates never-ending problems.
If it was me, I would be asking for referral to a rheumy and hope that he has a better idea of how to manage a patient with PMR and on steroids! Be strong (difficult I know when you are suffering) - it's your body.
Whereabouts are you Grace? There are various support groups dotted around the country and there may be one near to you and you will get lots of support and comfort by meeting up with other PMR-ers.
Hi all,
Sorry about the errors/repeat posting. The patient site in general was getting an update yesterday and I assume it was to do with this. If you do still get issues such as this please send me a message and I'll get the devs to have a look.
As a by the way changes to the forums in this update are here https://patient.info/forums/discuss/changes-to-the-forums-61733
Regards,
Alan
Good morning,
I have been sitting in a chair since just after 4am due to aches and pains. The problem now is my stomach, as it has been very sore for the past couple of days. I am still on 15mg pred. and during the day, things are not too bad, apart from stomach pains. Is this normal? I take one lansoprazole 15mg each morning, which is not having a great effect. I have a phone appointment with my doctor on 4th December, and will ask her about it, but just wondered if anyone else had this problem.
Regards,
Grace
Hello again Grace
If you have stomach pain that is bad enough to have you sitting up in a chair in the middle of the night, then if it was me I wouldn't wait until the phone appointment on 4th December but would ring and ask for an emergency appointment today explaining that you are on steroids for PMR.
It might just be the PPI, Lansoprazole. I was taken off both Lansoprazole and Omeprazole very quickly in succession - one caused severe problems with my bowel within just a couple of days and the other caused an uncharacteristic pain in my side. I then relied on daily 'live' yoghurt eaten before taken the steroids to protect my stomach and that proved very successful for me throughout my years of steroid treatment. Good luck and do let us know how you get on.
MrsO is absolutely right: Don't wait until the 4th December - emergency appointment today and face to face. It isn't good enough and I certainly wouldn't be messing with stomach pain that keeps me up in the middle of the night, particularly with the weekend coming up because if it gets worse you'll be in A&E which is bad enough anyway but worse alongside footballers and drunks!
Eileen
I started on 15 mg for 4 weeks, then dropped to 10 mg for 4 weeks. Since then, I've been on 9mg for 4 weeks, and am now into week 3 of 8mg. The results were miraculous within a day, with the pain subsiding. I have pain, and some days it's worse than others, but nothing like it used to be. I'm determined to get off the steroids asap, and really hope that the regime of dropping 1mg every 4 weeks will keep working out. Incidentally, I have also had a frozen shoulder for a year, and 3 days ago had it manipulated under anaesthetic. It's still sore, but not too bad, and it's great to have the movement back.
Sorry to hear about your experience, Grace. I agree with the others. Don't wait - get yourself back to the Dr to get the stomach pains checked out
Fiona - don't take the attitude of being "determined to get of the steroids asap" because all that will happen is the symptoms will come back., possibly even worse than to start with and since pred is just about the only answer you may need an even higher dose to control it and it is even more difficult to reduce the dose each time you yo-yo the dose. I'm speaking from personal experience - the rheumy didn't believe it was PMR so I got a fast taper and it was back with a vengeance.
As I explained further up the thread - there is no cure for PMR, you have to wait for the underlying autoimmune disorder to go into remission. The pred controls the symptoms to give you a decent quality of life and used properly you may get by on a reasonable dose with few side effects. Not everyone has problems of any magnitude and after more than 4 years, most of the time at over 10mg, my bone density is unchanged. I'm still taking 6mg/day (reducing VERY VERY slowly), having managed to get below 9mg for the first time by going slowly.
I have been on different sorts of steroid - ordinary prednisolone in the UK was not too bad, Medrol here in Italy was awful and I put on a load of weight and had muscle wasting, the current version of prednisone (called Lodotra, taken at night not in the morning) is fantastic and I have lost 13kg, my skin and hair are back to pre-PMR states and I'm a happy bunny. It is being trialed in the UK and is already used widely in Germany for PMR and it is hoped it will give rise to fewer side effects and allow a lower dose to achieve good control in the mornings. In my book: it does just that!
But DON'T rush to get off steroids because of the horror stories - some of which are exaggerations and others unnecessary fears. There is a lot more to it than just controlling the pain and stiffness because not doing so with PMR puts you at an even higher risk of developing GCA (you are at increased risk anyway if you have PMR) for which there is no alternative to taking very high doses of pred to prevent the loss of your sight and then reducing. If you want a bigger support story for pred I'll give it - just ask.
Eileen
Hello hiyaitsfiona, and it's good to hear from one of the fortunate few who has managed to reduce successfully from 15mgs in one fell swoop to as low as 10mgs.
It's fair to say that those like you who manage these early drops well perhaps don't feel the need to search for answers so we don't get to hear about too many 'textbook' recoveries.
I do hope all continues well for you BUT without wishing to put too much of a dampener on things, you would be very wise to slow the reductions a little from here on, especially as you mention you are experiencing "some days of worse pain than others". That means your inflammation is still active - steroids are not curing that inflammation but just damping it down. If you reduce too quickly to a level where the steroids lose control, you will need to return to a higher dose which then makes it a longer process altogether.
I hope your shoulder continues to improve. It's interesting that you experienced problems with that for a long time before PMR was diagnosed. I assume your PMR pain hasn't just been confined to your shoulders and arms but to your hip girdle/legs as well?
Hi MrsO - yes, pain in legs and back as well as shoulders and arms - especially the legs! You may be right, and I may need to slow down, but I guess only time will tell. It's a right double bind, this, when the medication is so fraught with its own side effects. In between the frozen shoulder onset and the PMR onset, I was also involved in a car accident when someone ran into he back of the car, resulting in some whiplash. It's been some year.
Hello again - yes you're right steroids do have a long list of possible side effects, but no-one gets them all and some lucky people don't get any. It's also worth bearing in mind that untreated/uncontrolled inflammation coursing through our bodies can lead to other nasty illnesses far worse than PMR.
"It's been some year" - at least 2014 is just around the corner and I hope it proves a happier and healthier one for you.
Good morning,
I have just had a phone appointment with my doctor, and am very happy with the outcome. I explained that when I dropped from 15 to 10 mg, I had a massive flare up, and as I could not contact her, I went back to 15mg. We had a long talk, and now I will be taking 15 and 14 on alternate days for two weeks, then 14 mg for two weeks, then another blood test. I then will have another telephone appointment with her, and if all is well, I will go down very very slowly.
My prednisolone will be on repeat prescription which is great, and makes me feel more in control.
Regards to all.
Grace
Hi Grace - that all sounds good, especially the 'listening' GP! Hope the stomach pain has resolved too.