Been on steroids for 2+years

[katierob78hon]

Down to 4mg day but still have pain in neck shoulders and upper arms. Last visit to Rheumy tells me to continue on the same dosage and will see me in 6mths. Not much help really told that blood test results are acceptable, I really want to stop taking steroids. I also have chronic osteoarthritis so not sure which pain is which. I too have shortness of breathe which I'm sure started when I started taking steroids,had several ecg and a heart scan which were ok. Any help from this knowledgeable forum would be gratefully appreciated.

[DorsetLady PMRGCAuk volunteer]

Hi,

If only 2 plus years in, would say your aches are probably PMR - although as you say it doesn’t help with OA in picture.

Does paracetamol or anything help? If so, might prove its OA rather than PMR.

To prove if it’s PMR it might be worth trying upping your dose or a few days to see if that helps.

I appreciate that you may want to be off the Pred, but you can’t just stop it, and if PMR is still active - extremely likely - you need it.

‘Acceptable” bloods are meaningless really- it usually just means the inflammation caused by your PMR is being controlled.

Could you put a bit more info on your profile please - helps us give a more detailed answer.

[kathyrob in reply to DorsetLady]

I have often questioned the acceptable but get the same reply its OK and doesn't need to change. Paracetamol doesn't do much for pain. I was recently given lyrica but suffered side effects so have been taken off. Also had gababentin same side effects. Must admit when I first took steroids I thought they were magic pain went away and I felt OK. Dr and Rheumy want me to taper off so don't get a lot of help with either.

[DorsetLady PMRGCAuk volunteer in reply to kathyrob]

Perhaps you ought to try my other suggestion - increase Pred by a couple of mgs for a few days and see if things improve,

[tangocharlie in reply to DorsetLady]

What does 'acceptable mean? - you want to know the actual numbers I know what mine were at the beginning and how they've gone up and down over the years. Why do they think you don't need to know and be involved in the decisions about your body? If, and only if, the bloods are in the remission range and symptoms are under control should you taper down, not before, is my understanding.

[DorsetLady PMRGCAuk volunteer in reply to tangocharlie]

Correct.

My ESR initially was deemed “satisfactory” - It wasn’t- a lot later I found out the figure - and it certainly wasn’t satisfactory!

Unfortunately it meant my GCA was missed early days - and ended up with sight loss - okay mine was a bit extreme - but shows that “acceptance “and “satisfactory” are not good enough descriptions.

[tangocharlie in reply to DorsetLady]

Not 'a bit extreme' it's tragic and the reason why doctors are supposed to know what they're doing, and I hate the patronising attitude that only they know what is best for us. Question everything - that's what I've learned

[DorsetLady PMRGCAuk volunteer in reply to tangocharlie]

Oh I do!

[piglette in reply to DorsetLady]

My latest CRP is satisfactory at 48!! I did not get my ESR result as they messed up the blood test. My GP did not think it necessary to redo it though.

[DorsetLady PMRGCAuk volunteer in reply to piglette]

Really! No wonder we get so frustrated at times.

[tangocharlie in reply to piglette]

I'm puzzled as to why 48 can be deemed satisfactory if we're aiming for somewhere in the 0 - 9 range? Is is satisfactorily coming down from a much higher number and so we're making good progress? Do doctors think the illness has miraculously gone away now we're on steroids and it doesn't matter what the number is? How is it being interpreted? I want to know the reasoing behind their decisions, and they should be able to explain it to me in simple language. As Einstein allegedly said, you don't fully understand something unless you can explain it to your grandmother.

[piglette in reply to tangocharlie]

Nobody has explained why a CRP of 48 is satisfactory. I don’t think they know. They just say that that is normal for me. I did say my CRP had been down 5 but they did not seem to be listening.

[jinasc in reply to tangocharlie]

ESR and CRP are indicators that something is going on and then they have to find out what.

I discovered on a long journey that with some people ESR and CRP rates never move, others do up and won. I also discovered that different hospital trusts work on different scales. Whether that has changed or not, over the past 12 years I have no idea. My trust also took into consideration 'age'.

To me, that meant your 'range' is personal.

I, personally think, too much emphasis is placed on ESR and CRP rates. In my book how you feel and symptoms rule. Not everything you encounter should be put down to PMR and pred.

I am not a medically trained person and this is a personal view from observations over the years.

[herdysheep in reply to tangocharlie]

I quite agree. Like being told results are 'normal'. Normal for who(m)? I get a print out of my results and can see patterns that link to how I feel that are probably not looked at in same way in surgery.

When I had bone density scan at the start I had quite a battle to get figures but without them it made no sense with subsequent scans.

[PMRpro Ambassador]

Most people want to stop taking steroids - but the choice is a return of the entire range of PMR symptoms if the underlying autoimmune disorder is still active. Only a third of patients are off pred by 2 years, only half are off by nearly 6 years.

What does "acceptable bloods" mean? Does it mean they are still below the top of the normal range but have been lower in the past? If so, that is a warning that the pred dose may not be quite enough.

[anutycrixp]

I know I know you just want to be well and free from steroids,blood-tests and pain etc.It gets me like that sometimes utterly frustrated and sick of being ,well, sick!It is part of this chronic illness,yet these feelings show that haven't yet given up on the hope of feeling well again.Take heed of the good advice offered here.I am on 2mg now after 2years but I know I need to up dose again just when I feel so near "the holy grail" of freedom.The reality is if you have inflammation..treat it.The "holy Grail" is a mental myth anyway for us,need to think differently now! take care of yourself and zap that pain as you can.Good luck!oh,and I don't bother with blood tests any more..[unless of course it's for another specific purpose]I just go with how am' ensuring a good supply of 1mg and 5mg predniolone tabs and appropriate pain killers etc use responsibly.best wishes.

[Noosat]

For what it is worth : I've had it diagnosed a few months less than you. I am down to 3mg. and now occasionally going to 2.5mg. I do get stiffness and some pain, but not enough to make me go up in dosage, as it is bad for eyes and heart. I am taking 1500mg of Tylenol about noon most days, because I have osteoarthritis and osteoporosis. Often any pain in back and legs lessens or goes completely, if I am regularly active, walking, doing some stretching exercises. Hope it is a lovely day where you are.

[Lonsdalelass in reply to Noosat]

I'm similar to you Noosat. Currently at 2mg, tapering really really slowly to 1.5 using PMRpro's tapering plan. I'm better keeping active if I can. Will take paracetamol, usually one dose is sufficient, if aches and pains are too troublesome, not every day just as and when. X

[Dubler]

Shortness of breath is part of it with a lot of us. My feet are numb also. I was diagnosed with CIDP. It’s an inflammatory condition. I get infusions for that. You’d need to see a neurologist for that. Talk to your dr about it. It seems to be helping mine

[Noosat]

I do appreciate all the valuable information I have received from the "experts" on this site, However, I would always be cautious about increasing prednisone dose. Even when I was "healthy" I occasionely had up and down days. If a simple over the counter drug like Tylenol gives some relief, that is what I want to take. Perhaps some people when they taper think they will make instant progress (Isn't this the kind of society we live in?) To me it is just slogging hard work. Especially now when I just arrived home from 2 hours of grocery shopping. Oh well, I'll take the Tylenol and sit or lie for a read.