Increased pain when reducing steroid dosage

I was told not to take Ibrofen with steroids by my Doctor but someone I know was told by her Dr to take them short term only for something that was unconnected with her illness and is now suffering bowel problems !! Another friend has had an ulcer through taking them !! So I wouldnt personally take them with steroids but if need be I would increase my steroid dose slightly on alternate days for about 2 weeks and if you can rest !!

Hello RitaHart

I personally would not take Ibuprofen with steroids - both can affect the gastro intestinal tract so to take the two together is doubling the risk and I think you may find it says in the leaflet accompanying the Ibuprofen not to take with corticosteroids (ie Prednisolone). It seems that the people Mrs G mentions have borne out this risk. You can, however, take Paracetamol.

To further elaborate, I was undiagnosed during the first year of my illness and spent 3 months in bed, any movement causing agonising pain all over my body, attending my hospital appointments by ambulance and wheelchair. The rheumatologist I was then under failed to diagnose me, so for 7 months during that year I depended on Ibuprofen and Paracetamol. Coincidentally, the Government introduced a new test that year within all our usual blood tests (you will only hear about this if your test results present a problem, but it's called an eGFR test). After one test, the GP rang to say that it was found that I had Chronic Kidney Disease as the reading was 50 and should be above 60. I panicked as I've had only one kidney since a child. Subsequently a kidney consultant confirmed that all the other tests showed no problems and it was just this new test that showed a low reading. I was then informed by a Pain Management Consultant that I should not have taken Ibuprofen for all those months as that can adversely affect the kidneys. Fortunately, I only took the bare minimum daily as I hate taking tablets, but as you can imagine I am left wondering if the Ibuprofen was to blame for affecting my kidney.

Like me you have managed to come down from 40mgs in just over 2 years - I've been on 3mgs for the last 4 weeks after 3 months on 4mgs. I have had increased pain in the tops of my legs since reducing.....however, I don't want to speak too soon but the last two days have shown an improvement so if that continues it's taken my body a whole month to catch up on the new dose. I have to stay on this dose for 3 months in all and, if successful, will reduce more slowly next time, ie from 3mgs to 2mgs on perhaps alternate days for the first couple of weeks.

It may be best for you to stay on increased dose for a couple of weeks and then try decreasing on alternate days for another couple of weeks before trying again wholly on the reduced dose.

Hope all this is of some help.

Mrs O

Hi all,

Thank you so much for your replies. I am very grateful and am very concerned about taking the Ibuprofen tablets now. It may be co-incidental but this morning I have woken with very little discomfort. It maybe that the extra 1mg of steroid is now kicking in, so I'm now going to stop taking Ibuprofen unless it gets unbearable.

I must admit that my GP suggested that I only take Ibuprofen when I know that I am going to do excessive walking or some other kind of exercise. My Rheumatologist suggested that I take Ibuprofen when I first reduce my steroids if I'm feeling very achy. I am due to see my Rheumatologist week after next and will certainly have discussions with her about taking the Ibuprofen or just increase my steroids.

By the way it's quite comforting knowing that so may other people are suffering with polymyalgia and I'm not alone. I didn't realise that there were so many sufferers.

Thanks again!

Everything has been said - but I was told no anti-inflammatory drugs at all, either prescribed or over the counter.

I have a good working relationship with my Chemist. Anything new that is prescibed, before the prescription is filled out - the Chemist checks the new item for compatibility with all the current tablets I am taking. If I want an over the counter drug - the chemist checks that out as well.

Trust your Chemist, they know more about drugs than anyone else.

I discovered I had pmr in March 2006 after a visit to Toulouse with my daughter, and after 2 days tramping the streets looking for a room for her I could hardly walk - all the usual symptoms of thighs, shoulders etc then began to worsen, I couldn't bend down to pick up something off the floor, nor turn over in bed, and I thought I was getting VERY old (I was then 60).

The usual tests weren't conclusive but I suddenly remembered my mother had had pmr - my dr sent me to a rheumatologist but 30 mg steroids did the trick and I was soon rejuventated (after about 2 weeks). Now I am trying to reduce from 5 mg but I was most interested in all the experiences that said how hard it was, and also that perhaps women in particular are keen to get off the prednisolone. I feel fine really apart from occasional stiffness although last time I tried to reduce the dose I did get painful legs again. I run every morning (only 15 minuntes) and that seems to get me going. Incidentally as no one seems to know what causes it, I know I did have a very painful ulcer on my toe plus some sort of flu which perhaps contributed to triggering the condition. Thank you all for fellow feelings!

Dear All, As a \"new\" sufferer ( 2 months) you have all been most helpful but two questions. As I try and reduce the pred. dose I am expecting to get more aches and pains until my body, hopefully, adapts to it. Also if I do too much one day I expect to suffer for it the next day. But it doesn't always work out like that, yesterday for example I had a really bad day for no apparent reason.Is this just something to expect from time to time?

Also if I have a day coming up when I really want to be as fit as possible, something really important maybe, can I take more prednisolone to make sure I can cope? If so how much in advance and how does it effect the overall regime of lowering the steroids?

It would be really good morale wise if one could have \"occasions\" to look forward to now and then without having to worry about cancelling!

So how do you all manage this aspect of things?

Green Granny

Green Granny

As someone who has only been diagnosed for 2 months, I am curious.

How high a dosage did you start on and what I have you reduced to and how?

Did your GP diagnose you and have you seen a Rheumatologist.

What information, if any, have you been given on PMR?

Most people have a basic regime to follow, but it can and does very from person to person as each of us is different and our bodies re-act in different ways.

Google Tayside pmr support group (there are now seven support groups throughout the UK) - click on Our Stories, go to Story Four - use the email address for more information.

But keep on coming to this site, the information provided is valuable.

mrs K

Dear Mrs K. Well I guess it is now nearer to 3 months. My mother had PMR so I wasn't surprised to hear that was, presumably, what I have. No I haven't seen a rheumatologist. My doc. has muttered but no more. He started me on 20mg. pred. and I came down to 15 mg after two weeks with not too much trouble. However after then it has been up and down - Dr is too keen to get me down I feel. He has given me no timetable but left it to my discretion -\"how I feel\". I am not clear whether I should have let my body get used to the new dose and not be showing symptoms before further reducing or what! But thinking ahead to a hoilday at the end of May I just can't see how I could manage it, hence my question about upping the dose to cope with extra situations, although I see that somebody else copes with a situation where there is extra walking, for example, by taking painkillers ( in my case Co-Codamol. This site has been so useful as has talking to one or two other people I know. However I have come acros people who hardly seem to have had any problems at all and have apparently only had PMR for 6 months. Which makes me think am I making a fuss about nothing!!!!!!!

Everybody here is so helpful and seems to have a real concern for others. Great! So thanks. green Granny

Green Granny - I don't live too far away from you, in Leatherhead, but you are the first fellow-sufferer I've come across locally. Responding to your query about holidays, what kind of a holiday is it? Are you going abroad? If you see other posts, you'll see that I've had PMR for a fairly long time, even so, I do manage to get away for a holiday or a short break two or three times a year. The hardest problem I've had to solve is sleeping - I've been unable to sleep on an ordinary mattress for some years, problem solved at home by using memory foam. If hotel cannot supply pressure mattress (and some will) I take a couple of sheets of foam rubber with me and sleep on those. We do now go to places where we (and my problems) are well known, but I did have some difficulty with this at first. As for the holiday itself, I usually make sure that I have a good supply of prednisolone with me as I've twice had really bad flare-ups while away.

If you'd like to contact me direct, please do, my email should be visible on this site.

Nefret

Hello again Green Granny

I haven't heard about anyone else upping the steroid dose in order to cope with a special event and I have been told only to take paracetamol if in need.

However, I think the secret is more to come down very slowly on the steroids, preferably if and when symptoms are at bay and when the ESR and CRP blood tests are normal - you don't mention whether you have actually even had these blood tests when reducing.

I haven't come across anyone who has recovered from PMR or GCA in only 6 months on steroids.........it isn't even enough time to reduce the steroids slowly which is the recommended route. It makes me wonder if such a case may not have been PMR in the first place.

I am just like you in feeling that I can't go on holiday and with myself I just wonder if it's a loss of confidence due to PMR/GCA as much as the symptoms. However, Nefret appears to cope with holidays and has given us some very good advice as regards taking pieces of foam in case of uncomfortable holiday beds.........I appreciate this would be a problem if travelling by plane and not by car!

As you say, it's a comfort receiving these tips from others.

Do hope you manage the holiday - let us know and good luck.

MrsO

Reply to Green Granny

I dont see any reason why you shouldnt go on holiday depending on what it is If you were going to climb Everest a definate NO !! I am on my second bout of PMR this one started last October I started on 20mg and am now down to 7.5 but am struggling to get below this My GP also says listen to your body but she also gives me monthly blood tests and nothing is reduced unless they have improved Everyone seems to have very different levels of ESR and CRP for their doseage on this sight so I think it is the improvement which is important not just the level as the range for normal is quite large I dont have GCA and have managed 2 holidays since I have had my 2nd bout of PMR but these have been relaxing holidays and I do have my Husband to carry the suitcases !! My Dr said not to try and reduce my steroids again until a week after I got back and this week I have done things slowly and rested ready for I hope a reduction next week Having had this illness before I know how easy it is to get depressed with it when you have to rest so much so if you feel a holiday would do you good and you could cope with it go for it I dont think it would be possible to have had PMR for just 6mths I had it for 2 years the first time and I was 'Text Book' but I have a feeling I am not going to be so lucky this time around !! I am so glad I have found this site this time as it certainly helps to speak to people who understand As a lot of people find it a bit hard to accept you are ill if you look just the same !!

Hello Green Granny

I've been on steroids for PMR since 1 May last year and I got down to 7mg. I've temporarily increased to 10mg because of a flare-up when decreasing to 6. My doctor doesnt believe regular blood tests are necessary as he said how I feel is a good indicator of how the I am. When I'm on an adequate dosage I feel quite well most of the time.

In September I spent 2 weeks in France doing a lot of walking, some of it quite taxing and coped very well. However, I didn't decrease the Pred for some time before my holiday, but made sure I was on a dose where I felt well. Also we alternated active days with rest days.

We all would love to be off Pred, but it's better to do it slowly, but surely.

Hope you enjoy your holiday!

Jak

Thanks everybody for the help. I have certainly found a memory foam pillow a real help for neck pain, don't think I need the mattress which makes the holiday situation a little easier. Right. Holiday is in the Isle of Wight, going by public transport. We have been there in the past, doing a lot of walking and it is a hilly part. OK I accept that walking is one of my main problems at the moment and I'm happy to sit with a good book. I guess it's the journey that' s bothering me and I'm going to have to think about that pretty seriously, I'm sure there are ways. I will take the advice to not come down off the steroids just before and to make sure I feel pretty stable on the dosage.

About misdiagnosis, there are 4 people in my road, about 150 yds apart, all apparently with PMR. All of us go to the same medical practise, 3 with the same doctor. Weird. Or just coincidence, but I didn't think PMR was that common. I don't query my own diagnosis, although I don't have the classic symptom, of not being able to get out of bed in the morning. But steroids do make an enormous difference. I have only had one Blood test though, so will ask my doctor when I see him next Tuesday. Thanks everyone, Green granny

Talking about coincidence - I'm 50 and my colleague was diagnosed with PMR when he was 57, both ages considered to be a bit \"young\" for PMR. We share a gp and an office, my colleague and I, he had just recovered (almost 2 years to the day) as I was starting symptoms. I keep saying I caught it off him. :wink:

On the subject of travelling - we drove for 12 hours to get to where we were going and I slept for 2 days. We tried going out for drives, but I just nodded off in the car. After that I was right as rain. :roll:

Jak

I have just been re-reading all your posts, so Hi again to everyone after a few weeks trying to sort myself out a bit!

I am taking everyone's advice about not coming off the steroids too quickly - at the moment from 13 mg to 12mg. but doing alternate days, bit by bit. That seems to get even more important as the doses get lower. I printed off \"The Burden of PMR\" by Prof. Dasgupta from the PMRFighters website and, apart from emphasing the lack of research etc. he says \"A study of 27 patients proposed 3 categories of disease course;a rapid response without significant relapse; a rapid response requiring extended treatment; and incomplete resolution of symptoms requiring increased doses of steroids and extended treatment\". I don't how much that fits in with people's experience but it does account for the widely varying accounts one hears. Someone near me said she felt perfectly fit as soon as she was put on steroids, no loss of energy etc. and only begen to experience discomfort when she came down to about 7mg. Still had plenty of energy. Lucky woman!!

Have any of you tried Ibuprofen Gel? I tried some on my neck and it helped a lot but I wonder whether one should steer clear the same way one does for the tablets?

The sunny weather does cheer one up doesn't it? Green granny