Terrified of steroids

I haven't come across anyone who was even fairly pain-free without steroids and without them I would have spent a good long time in bed as once in I was unable to get out..

As the pain is caused by the inflammation then damping that down is the biggest factor and NSAIDS never even touched mine. At the moment steroids are the only effective way of doing this and having raging inflammation running uncontrolled can lead to just as many nasties as steroids.

I can't say that you won't get any side effects from steroids, but have you looked at the list of side effects on your leaflets, both for the NSAID and for the co-codomol? Or any other OTC medicines? There are some available which I wouldn't touch at all. Equally, if you take steroids and are able to move much more freely perhaps the side effect for you would be weight loss.

You won't know until you try and 5 days on steroids isn't going to do anyone any harm. If you don't like them at that point then you can just stop taking them again. If the relief you get matches mine ........well, I am just grateful they are around.

Dear BBarb

Sorry you are struggling. I wonder what strength of steroids you are being offered? If they a not too high, you may not put on much weight. I think Nefret's suggestion is a good idea. If you feel more mobile, do a daily short walk or some exercize you like and perhaps have only one main meal.

I have found that steroids are the only anti-inflammatory medication which works. I have come off steroids before now but am back on them. I also take Nurofen fairly regularly but only one dose - never on an empty stomach. I feel I am almost better off on steroids than taking over the counter pain killers which do have quite a lot side effects.

I hope you find a solution which works for you and begin to feel better.

Cosima

Hello Bbarb

Without steroids to control the inflammation of PMR, you are at high risk of contracting the linked condition, GCA (Giant Cell Arteritis) which can lead to loss of eyesight if untreated.

My PMR remained undiagnosed and therefore untreated for a year, during which I spent several months unable to get out of bed because of the paralysing pain. I took Ibuprofen during that year but it didn't touch the pain. At the end of that year, I succumbed to GCA and a return of full-blown PMR and needed very high doses of steroid to protect my eyesight. I was also diagnosed with a kidney problem which in all probability was caused by the Ibuprofen.

Yes there can be side effects from taking steroids as with any other medication, but no-one gets them all and some people don't get any.

So don't be "terrified of steroids" - uncontrolled inflammation coursing through your body can put you at risk of far more terrifying illnesses.

Late to the party again! We have this discussion every so often with people who are terrified of steroids.

If you look at the data sheet and side-effects for NSAIDs and co-codamol you will find they are pretty foul too! One lady took ibuprofen at her doctor's suggestion for PMR symptoms for less than 3 days and had a gastric bleed which hospitalised her and could have killed her without prompt treatment. Codeine-containing painkillers are addictive and cause constipation.

I had PMR for 5 years before it suddenly got far worse, was named and I was given pred which returned my mobility. During that 5 years I had steadily put on weight despite going to the gym 5 days a week to do the activities I could manage: aqua aerobics, Pilates and some yoga. I couldn't walk far, I could only garden in very small doses and knowing I wouldn't be able to move the next few days. Even stairs were a major problem. I had to change the form of pred about 18 months ago and I DID put on weight with that - but It wasn't responding to it properly anyway, it didn't control the pain either - and eventually my GP offered me the only other form available here in Italy.

In the last 9 months I have lost 9 kilos. 20 pounds, whilst taking pred, initially at a dose of 15mg and now I am down to 8mg. Why? I can move properly again and can walk for 40 minutes a day. I have also been very strict about the amount I eat.

Not everyone puts on weight with pred - and being unable to move is a bigger risk factor for weight gain and osteoporosis than pred, believe me. There are patients who lose weight and until you try you will never know which group you fall into. However - you are unlikely to control PMR long term successfully with pain killers and that will put you at other risks as MrsO has said. It is your choice - but steroids are not all bad. If, with untreated PMR, you go on to develop GCA which is more likely, you will have to take high doses (60mg/day or even more) and are at risk of losing your sight. I'll take a bit of extra weight rather than that.

Eileen

Thank you for all your replies, I hadn't seen the previous discussions but realise of course there must have been many. I still haven't made up my mind, but feel I am now better informed - so will go ahead and see what happens, Thank you all.

If it is any peace of mind to you, I was also terrified of weight gain and other side effects. Have been on Pred for over a month and so far no real side effects (have been on doses between 10 & 15 mg). The pain relief it gives is incredible, after having been in the terrible PMR pain zone world.