Pain on reduction

Must be very confusing Mrs G, but I don't think you need to start worrying until you find your old horse sitting next to you in your GP's waiting room :lol:

Mrs G - I've just had an image of you arriving at the Vet for your own appointment! :? :lol: Years ago we had the most gorgeous Vet and my husband used to swear that I invented problems with our dogs just as an excuse to visit the Vet. Must admit I often used to wish he was my doctor! :lol: Do hope your horse isn't suffering though. MrsO

The drug she was given meant she wouldnt eat so perhaps I should take it !!

Now cut down the dose and she is back to eating Thank goodness Yes I have had some very good looking Vets in the past but my present one is female !!

Best wishes

Mrs G

Hi all. I was diagnosed with PMR in sept this year, although I have been unwell for the last 18 months. My doctor started me on 15mg pred on 6th sept and what a difference it has made, felt like a new woman, of which I was talking up until 19 Oct when she told me to reduce them down to 10mg, ( in between this I've had a chest infection and have been on antibiotics which I finish today). I seemed to be ok for the first couple of days but then started to get pains in my upper arms and shoulders and have felt a lot of pain when going up and down stairs in my knees, do any of think I should go back up to the 15mg tomorrow or wait till this friday when I have my first visit to the rhuemmy.

Rita

Hi Ascotlady and welcome!

I don't know how much else on this forum you have read so if what I now write isn't news to you I apolgise!

Google pmr gca uk northeast support group and follow the link to the site set up in association with the UK charity for PMR and GCA. On that site you will find the guidelines for diagnosis and treatment of PMR and GCA as drawn up by the British Association of Rheumatologists. Download them and print them out! There are also articles by both doctors and patients about taking steroids and how to live with PMR. You will need to have a look at both to be able to discuss things with your doctor with any degree of assurance.

The normal starting dose for PMR is 15mg and that usually achieves the result you have experienced! You don't say how long you have been on steroids but I assume maybe 3-4 weeks? So far, so good, but I think your doctor is being far too optimistic in trying to drop your dose by 5mg like that! You could do that for anything else you needed steroids for but in PMR the recommendations in several rheumatology textbooks and papers is that any drop should not be more at any one time than 10% of the current dose and usually no-one would suggest you went down by more than 2.5mg at a time. You have just been faced with a 33% drop.

Steroids do not cure PMR - they reduce the inflammation so that you can enjoy a decent quality of life without pain. Ordinary painkillers do not work - as I'm sure you found before diagnosis. If you drop the steroid dose too low at any time (now or in the future) the PMR will flare up and also if you have any injury or illnesses, stress (moving house, family problems etc) or simply overdo it you will need a slightly higher dose to deal with it or the PMR is likely to flare even without a drop in dose. And you have just had an infection that needed antibiotics - your GP should not have given you them AND at the same time reduced the steroids.

If you have had PMR for a while I think it is also possibly a bit more difficult to start on the downward trail with your dose - I'd had it for 5 years before diagnosis! I went 15/12.5/10 quite quickly - although I had been given a trial of 2 weeks each of 15/10/5 mg/day to start with and the drop from 15 to 10 after 2 weeks brought back some of the pain and the drop to 5 was even worse though still liveable with. Within 2 days of stopping I was as bad as before taking the steroids at all and in agony. The second time I managed to get to 7.5mg/day very well but any further just wasn't on. I had a period at 13.5mg every 2 days which was fine but I have had a flare over the summer and am back up to 17.5mg every 2 days and am about to try to go down to 17mg/2 days. So far any attempt has resulted in my feet siezing up again (the most sensitive PMR symptom for me).

I think your drop of 5mg was far too big - I would go back up asap and then ask your doctor to give you 2.5mg pills (enteric coated) so you can at least halve the drop. 1mg tablets (white, uncoated) would allow you an even more gradual drop. With a 2.5mg drop I would also alternate the dose 15/12.5/15/12.5 for a couple of weeks until you settle down again.

If your doctor is under the impression that you can now drop down your steroid dose and get off them they need to read the guidelines. I found the resultsof a study last week where only about a quarter of patients get off steroids within a year and relapse is not uncommon, about half need steroids for up to 2 years but there seem to be fewer relapses at that rate. The other quarter remain on steroids for longer, some (a few) for many years at a low dose. These are not figures plucked out of thin air - they are from a proper research study done by experts.

MrsK who is a leading light in the PMR-GCA support group and often posts on here always says \"knowledge is power\" - acquire your knowledge from the site and this forum and make use of it! There are several threads on here abou

Hi Eileen

Thank you for replying to my letter and giving me all that information it has been a great help. I had been on 15mg for 6 weeks when my gp told me to go down to 10mg.

I went to see the rheumatologists this morning for the first time, he said he would have started me on 20mg, so he said lets start again and if all is well has give me a regime to follow. So from tomorrow I start on 20 for 2 weeks, weeks 3&4 is 15mg, weeks 5&6 is 15mg and 10mg daily on alternate days, weeks 7&8 is 10mg , weeks 9 to 24 is 10mg and 5mg on alternate days, then 5mg for 6 months before tailing off. I hope it goes to plan, but I'm going to take one day at a time. He has also giving me a tablet to take once a week for my bones.

I'm still not feeling to good after my infection, seems to have knocked me down a bit, hopefully when I start on 20mg tomorrow I will see an improvement.

Hope you are well.

Hi ascotlady,

So glad to hear you have a sympathetic rheumy and also that you found my essay useful.

It's still a long way ahead but as you reduce really listen to your body. I wonder why your doctor is sticking with multiples of 5mg versions of taking your pills. Has he given you white non-coated tablets or brown pills? If he has given you plain white tablets, if you get any indigestion with them you could ask your GP to prescribe you enteric coated prednisolone which will be easier on your stomach. They also come in both 5mg and 2.5mg sizes which means you can have smaller drops when reducing.

If you read a lot on this forum you will see that many people get to 15mg with no bother and then find the drop to 10mg quite hard. It's much easier to go via 12.5mg which what your rheumy is hoping to achieve with the 15/10 alternating doses. Some people find even that is hard and alternate 15/12.5. It is also possible to get 1mg tablets so you can have even smaller reductions at a time.

It is below 10mg a day that most people seem to start finding the drop difficult as the symptoms often return - I went from 15 to 12.5 to 10 quite easily and even down to 7.5mg was good, some discomfort but liveable with. However, any attempt to get to 5mg was met with the pain returning and it wasn't the sort of pain from getting used to less steroid. We have all come to the conclusion here that if you get pain that settles within about a week to 10 days it is steroid-reduction pain but if the pain starts after a few days and then steadily gets worse it is probably the PMR starting up again. So we reckon to stick it out for 2 weeks and if you still have pain - go back up to the previous dose.

I had a flare up this summer and am now struggling to go down from 17.5mg every second day, even 0.5mg is too much of a drop for me! I had been on 13.5mg/2 days before and had been fine. So once you get to the 10 to 5 drop, as I say listen to your body. Your rheumy's reduction plan may be a bit ambitious by then, most of the people on here stick at a given dose for 3 or 4 weeks before trying the next drop and at that level often use quite complex reduction schemes to make the fall off smoother and easier to get used to. There are details of these to be found in various threads on this forum and also on the PMR support site I told you about in the other post - one is known as \"Ragnar's\". It was worked out by a Swedish gentleman who had great difficulty getting his dose down and has been used successfully by several people.

Good luck with this journey - but don't be disappointed if you take a bit longer than your rheumy has suggested although I do hope you do manage to get down the doses as he has suggested. Remember to pace yourself and if you are tired - say no. If you overdo it you will be very tired after and it takes time to recover. You will feel better with the steroids but the fatigue may take some time to improve. If there is somethingyou really really want to do - do it, but don't assume you will be able to have 2 or 3 energetic days one after the other. Always allow space for a rest - just in case.

Do keep in touch and let us know how you get on - and any questions you may have will be answered as best we can. There are always new ideas about dealing with the problems that arise because of the PMR or the steroids - or anything else and when you are fed up you at least know we've all been there and understand a moan! Hope you are feeling better - take it easy and don't try any heroics when you feel better with the steroids!

all the best,

EileenH

well I was quite well for the first week I reduced my steroids from 4 to 3, had a few jaw and shoulder pains but not enough to put them back up, but this week I have felt really ill, it's not pain but feeling so tired, weak, have no energy to do anything, my legs feel like jelly, the sweating is driving me mad and I keep going to the loo, can't count the times I have wet myself. I went to see my gp yesterday she thinks I have an infection somewhere in my body, she gave me antibiotics and i had to take a urine sample in this morning. Now my question is, I am supposed to reduce again this weekend to 3 and 2 alternate days but i don't know whether to or not, can anyone give me a some advice as what to do.

Thank you, hope everyone is keeping well.

If you have an infection and are on antibiotics - DON'T REDUCE! Your body needs more pred not less if it under stress. Your GP should have told you that - it's basic info for someone on longterm steroids.

I have had a mild urinary tract infection since July - I asked the local GP here then and she wasn't convinced and wouldn't treat but whilst back in the UK 3 weeks ago my GP there sent a urine for testing and started me on trimethoprine. Result - bacterial infection sensitive to that antibiotic and I feel rather better. I haven't been able to reduce all summer and I'm sure that's why.

I had a minor crumple with the car yesterday, it's not very well, I'm fine but I did take a bit more pred this morning just in case (wasn't my fault, an 86-year-old pulled out in front of me when I was less than 10m away, no chance of missing him!). Now will I be able to try reducing in a week or so? I do hope so!

EileenH

Oh, ASCOTLADY, poor you and, as usual, Eileen has given you the best advice in telling you not to reduce. It does sound like a urine infection and some of these can make you feel so ill as I well remember from many such experiences in my childhood. For some immediate relief, if you have any pearl barley in the house, you can cook it, strain it and add orange or lemon juice (slightly sweetened) and drink this a couple of times a day. Do hope the antibiotics will make you feel better soon. A little tip: antibiotics can tend to affect the lining of the stomach so when you finish the course, a daily live yoghurt will help to replace that lining. Very best wishes and do let us know how you get on.

MrsO

Hello Ascot Lady

Sorry to hear of your problems I think sometimes when we have PMR and take steroids we think everything is connected with that and perhaps dont act quickly enough

I would say definately keep at your present level of steroids and rest and look after yourself as antibiotics take it out of you as well

Hope you feel better soon

Best wishes

Mrs G

Eileen - so sorry to hear about the incident with the car. Think there's a bit of a jinx on cars at the moment what with our flat tyre scenario last week, our son ringing saying he had broken down in London (turned out to be the fault of an earlier repair mechanic - another red light up today so back in for 3rd time tomorrow!).....and now, you. The main thing is you are ok, thank goodness (the car will get better without the fear of increasing its Pred dose!!) Hopefully, you, too, will get away without having to increase the dose and even manage to reduce next week.

It's amazing how a stressful experience, no matter how small, can have an effect on our PMR bodies - I definitely felt increased stiffness and discomfort following our experience in the freezing fog but I think it's improving now though I've had to resort to my support girdle to ease my spine for a couple of days.

As Mrs G says \"roll on Spring\". Looking at the forecast, hasn't Lizzie Ellen timed it well to be in warmer climes.

MrsO

can anyone give me some advice please. went down to 1/2 alternate two weeks ago, was ok at first but now i'm in agony with pain in top of my right arm, can't lift it up it's so bad, also getting pain in my right armpit, both shoulders, left elbow and I find those areas are very tender to touch. I don't know if I should just go back up to 2 a day or more or go see the gp. This is the third time I have tried to get down to 1/2 alternate days and had problems.

Hello Ascot Lady

Sorry to hear of your pain Its a bit of a difficult one unless it feels like the PMR pain you have had before I would zoom off to the the Dr pretty quick as it would be a shame to up the steroids if it was unconnected

We have had chats on here recently saying we blame all our pains on PMR but we can all get other ailments as well and I have certainly been more prone to muscle strains since I have been on steroids

Hope you feel better soon

Mrs G

Hello ascotlady

If the pain had only been in your arm muscle I would have suggested that perhaps it was muscle weakness and subsequent strain as a direct result of the steroids.

2mg is the dose I stayed on for many months because my right arm muscle hurt so much which I put down to PMR. However, a visit to a physio proved the shoulder blade and arm muscles to be completely knotted up and several sessions later with gentle massage and heat the pain completely disappeared.

However, as your pain is in other places, especially your shoulders, I think I would be inclined to go back up to 2mg for a couple of weeks and then try reducing again but more slowly next time. As trying to go down 2/1 on alternate days hasn't been successful on two previous occasions, a lower/slower reduction by half a mg may work next time. I found it helpful to do 3 days at 2mg and 1 day at 1.5mg and then repeat, followed by 2 days at 2mg and one at 1.5 and so on. Perhaps this would work for you - I do hope so.

MrsO