Pain on reduction

Ascotlady - I've just trawled back through the posts to find when you were first diagnosed and see it was last September - is that right? You may be trying to come off the steroids too quickly. Even though you have been very successful in reducing the dose it may be you need to remain at that very low dose for rather longer to avoid a return of the symptoms.

A review of several studies showed that, although about a quarter of patients with PMR are able to get off steroids in a year or so, they are much more likely to experience a relapse after coming off steroids altogether than the patients who take about 2 years to get off steroids. It is very common to experience flares during the first couple of years after diagnosis and it is much easier to deal with them if you are on a low dose and just need a short period at a higher dose (up by 5mg usually) to get the new inflammation under control and then drop back quite quickly to what had effectively been a maintenance dose keeping things under control.

Remember - the steroids haven't cured the PMR, they are keeping the inflammation at a level you can live with. The reduction below 10mg should be never more than 1mg at a time - but once you are below 5mg you need to be very sneaky about reducing and Ragnar's method would probably be very suitable for you. Search on here or look on the PMR GCA northeast support site where there is an article about it. As soon as you are getting to a very low level where the reduction leads to any return of symptoms you need to think \"Am I making too big a jump?\". After a reduction at this level you should stay at the new dose for a couple of months before the next reduction to give your body (adrenals in particular) a chance to settle down. If you have got from 15 to 1mg in 7months you haven't spent long on each dose so far, have you.

After all, it would be such a shame to spoil the ship for a ha'pth of tar wouldn't it when you have done so well so far,

EileenH

Thank you all for your replies. would you believe I got up this morning and the pains had gone and have felt really well today, so whatever it was I hope it stays away. When I said I was on 2/1 alternate days that puts me at 7 and a half mg per day, should I stay on that dose for a while.

ascotlady

Hi Ascotlady

I am feeling confused. I thought you meant you were on alternate day doses of 1mg and 2mg?

It could well be that you have been experiencing steroid withdrawal symptoms - several of us on here have some aches for a few days after a reduction then if you wait, it goes away.

Have you had your ESR checked recently to check your inflammation levels?

All the best

Beev

Hi Eileen

I forgot to answer your questions when I just replied to my enquiry. Yes I was diagnoised in sept. my doctor put me on 15mg, which I was on till I saw my rhemy in nov and he put me up to 20mg a day. The reason I've tried to come off them so quick is cause i'm so unhappy about my weight, but everyones tells me what would you rather have pain or weight gain, and I know I would rather have no pain and be able to do things

Hi Beev

sorry about that I think I confused you by the way I wrote it. Hopefully beev that was what it was. I've not had any blood test for a while but am at the doctors tomorrow so I will ask her if she can arrange some.

Hello Ascot Lady

If I understand correctly you are taking 1x5mg one day and 2x 5mg the next ?? Have you thought about getting 2.5 mg and 1mg tablets so you can have a more gradual reduction ?

I am really pleased to hear you are feeling better today and understand you wanting to get off the steroids I too have had a significant weight gain but after having a real setback last year and having to treble my steroid doseage I have really slowed my reduction programme and basically now as long as I get there in the end I will sort the weight out later

I have 2 monthly blood tests as my bloods are an accurate indication of my PMR ( I know some peoples arent ) Hopefully your Dr will check these for you

Best wishes

Mrs G

Right - now we've sorted out the misunderstanding! You are on the equivalent of 7.5mg a day but doing it by alternating 10 and 5 mg/day. :lol:

Mrs G is quite right - ask for some 2.5 mg tabs or, if you are on the white tablets as opposed to the pretty red rounded pills, get a pill cutter from the chemist and cut a tablet in half so you can balance out the dose at 7.5mg a day. Some people can deal with the waves of unbalanced doses, some can't! I take my tablets on alternate days, double the dose and have absolutely no problem with doing it, the antiinflammatory effect obviously lasts the top end of the range for me. When you take steroids the antiinflammatory effect can last from 12 to 36 hours - depends on the person. If you are lucky like me it is 36 hours and the stiffness happens overnight before the next dose. Some people find they are at the other end of the spectrum and need to split their dose so the evening dose stops the desperate morning stiffness they experience - this is quite unusual though.

I know where you are coming from with the hating the weight bit - but I put mine on when I was unable to do anything much because of the pain and stiffness and was so depressed I just ate anything that came to hand. Steroids, be cuddly and live or no steroids and be miserable - to me there isn't a choice really. You are not a different person just because you are cuddly - but I'm darn sure you are when you are in pain and bad tempered. I certainly was. :roll:

I wouldn't be surprised if you find that the day of the 5mg dose you feel less well than the 10mg day. If the pain persists with taking the same dose every day (7.5mg daily) after a couple of weeks then go back up to 10mg for a bit and wait a couple of weeks and try again. But if you were at 10mg a day at your last dose, 9mg a day for a while might be better. As I say, the big boys say not more than 10% of the current dose as the reduction - so from 10mg that means not more than 1mg at a time.

Good luck,

EileenH

Thank you Eileen and Mrs G for your advice, I am very grateful. I am seeing my gp tomorrow so I will let you know how I get on.

Ascotlady

Hi Ascot Lady....I'm with Eileen on this...I have had Pmr since this time last year and am on a reduction programme of 1mg every two weeks as tolerated.....so far going OK and have just got to the magic \"TEN\" so hopefully into single figures soon. :wink:

I realize that the weight gain must be frustrating, but it is more important to be comfortable and pain free in the long run as if you are in pain you cannot take any excercise and are more likely to \"comfort\" eat :cry:

I was very lucky, in that I did not put on any weight with the steroids, but that may be in part due to the fact that I am wheat intolerant and do not eat \"normal\" bread, cakes, biscuits etc. I do eat vast quantities of fruit & veggies, but obviously they are not as high calorie as the carbs so I reckon that is why my weight has stayed pretty stable 8) :oops:

I have 5mg and 1mg tablets so it is much easier to do a slower reduction. It might be worth trying to get a lower dose tablet from your doctor as it may suit you to go down at a more graduated pace.

Anyway...the best of luck and hope things get better for you soon.

Best wishes, Pauline.

ascotlady

email me on this site as a new support group is starting up- perhaps it will be near you.