What can I expect when reducing steroids?

[Offsideinzaghi]

I was diagnosed with PMR 18 months ago. My dose of steroids has gradually been reduced but since coming down from 7 mg I have had a return of pain. This has got worse but dr insists I have to reduce further. I am now down to 4.5 mg and the pain is as bad as it was 18 months ago. But dr states no inflammation markers in blood so need to keep cutting down. Is this what I should expect? The dr states not good for bones but gives me nothing to prevent possible bone thinning. Any advice would be appreciated. Thanks.

[DorsetLady PMRGCAuk volunteer]

Hi,

Sorry to hear you have a doctor who obviously doesn’t understand your illness….

You are not reducing come what may to zero, you are trying to find lowest dose to control symptoms, which you have unfortunately done.

Just because your bloods are not raised doesn’t mean there isn’t an issue, he should be treating symptoms not just relying on test results.

Pred may affect bone strength, but not necessarily . You should have been prescribed a VitD/Calcium supplement when you started steroids…a dub f he’s worried about bones then he can refer you for a DEXA scan.

Few posts for you to read -

general advice (although maybe a bit late ) …

how to deal with a flare (which you are probably having at moment)..

slower tapering plan…

info on adrenal glands (which also may be causing problems.

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

Oh, and one more thing, try and find a more sensible doctor…….

and please come back for any more info/advice..

[Offsideinzaghi in reply to DorsetLady]

Hi, thank you for your very informative reply which has created more questions for for my GP. It does appear that the symptoms and me as a person in pain is not being treated. It's purely a numbers game and no thought for the pain I am in. Your response and advice is greatly appreciated.Thanks.

[PMRpro Ambassador]

Find a new doctor is my immediate thought!!! One who understands that you treat the patient and NOT the numbers which can be misleading. Many patients still on pred when they have a flare don't have raised blood markers for a long time after symptoms appear and good doctors know that symptoms ALWAYS trump the lab results.

Do you know what your blood tests have shown? Did you get to low ESR and CRP readings? Have they risen relative to that since?

[Offsideinzaghi in reply to PMRpro]

Thanks. Sadly a new doctor, in a rural community, is not an option.I am never told the actual numbers. I'm only told if the results are clear or if there are inflammation markers. Should I ask for a referral to rheumatology as I am losing faith in the treatment I am receiving from my doctor?

Thanks

[Blearyeyed in reply to Offsideinzaghi]

if you are in the Uk you have the right to request a copy from reception at your surgery of any tests results that you have. I always get a copy because it is often a sensible approach and the figures help as a guideline to how to adjust my behaviour or medications.

Sometimes doctors will say that it's normal when it is borderline , and everyone is actually a bit different so a borderline high or low result can cause no symptoms for one person and a lot of symptoms for others.

As others have said , your GP seems to be trying to follow the written treatment time schedule to the letter , and probably has little experience of treating patients with PMR , so knows nothing of the actual experience of those patients. Unlike Doctors , PMR does not read the guidelines , and it probably wouldn't take any notice of how long it should last if it could.

The Rheumy or GP should be helped to realize that the treatment of PMR must be symptom led and not just based on blood tests as , sometimes , blood tests can be normal even though the inflammation is active and causing pain. Doctors are known for trying to treat everyone the same and it really doesn't work , especially if the patient has other illnesses or individual differences which can alter the progress of your recovery.

I understand your issue , I live in a rural community , and I know it can be hard to find a new doctor. It is worth trying to get a dialogue going with your current GP first writing down your queries and questions and also asking them about their experience with their other PMR patients. You can discuss , or even take in print outs of information available from the charity. Finally , it is good to speak to them in a polite , friendly and firm way and request that you are given the chance to increase your dose again to get the pain back under control and then inform that you would like to do the slow taper method recommended by the charity and other patients. if they are resistant to your sensible and proactive approach ask to see someone else in the Practice with PMR experience. If there are no other doctors , ask to be referred back to a Rheumatologist.

you may find though that as soon as you show your have learn't about your illness and have evidence for what you want to to a doctor is more inclined to work with you.

[DorsetLady PMRGCAuk volunteer in reply to Offsideinzaghi]

You could- but in current situation may take a long time - and unless your GP considers it necessary he may not agree.

You could see see one privately if you want, but trying to get GP onside with more understanding of your illness would probably be a better option. But of course that depends on his willingness to listen and maybe learn from you.

As stated you are entitled to see your results once GP has viewed and commented on them.

[Offsideinzaghi in reply to DorsetLady]

At the moment I am on 4.5 mg reduced from 5mg earlier this week.This was on my suggestion to the doc. I was reduced from 8-5 at three week intervals. On reduction to 7mg I started to receive moderate pain in my upper right arm/ shoulder and in the backs of both knees/ lower thighs. This was when I had blood taken. Since then the pain has increased in my shoulder/arm area but has almost disappeared in my knees / thighs. After taking my medication

( around 7:30am) the pain can decrease about 2-3 hours later and come late afternoon early evening is hardly noticeable. I find that when I am working (builder) the exercise helps. My worst days tend to be Sat,Sun, Mon.

Do these symptoms suggest too fast a steroid withdrawal or a flare up? TIA

[PMRpro Ambassador in reply to Offsideinzaghi]

I think you are probably on the cusp - and pleased you are using 1/2mg steps. But I would now leave longer than 3 weeks between drops - there is no hurry, your adrenal glands need to wake up now too and that takes time.

But I suspect you are already a bit too low - and if you continue, all that will happen is you have a proper flare and have to to go a long way back. Discretion is the better part of valour!

[DorsetLady PMRGCAuk volunteer in reply to Offsideinzaghi]

Would say you probably reduced too quickly between 8-5mg, but you seem to have got through it with too much of an issue.Personally think you might be wise to go back to 5mg and stay there a month this time…..it might also be worth taking your meds earlier if you can, at the moment it sounds as if you struggle for first couple of hours work.

If you wake up earlier either naturally or for a comfort break any when after about 3am (substances that cause the pain shed from body around 4am) you might find mornings better.

Can be taken with a spoonful or yogurt, a small piece of cheese, half a slice of bread, then they get into system ready to fight the inflammation once it appears, whilst you get another hour or two of shuteye.

You could try that on your days off first, just to see if it’s feasible/doable.

It think probably when you’re working you have other things to occupy your mind as well as being more active (which obviously works for you) - but come non working days you are out of your normal routine, so things maybe “catch up” so you feel worse…just a thought.

Unfortunately it’s all a bit of trial and error, what works for someone else might not work for you, and visa versa. Hopefully you will find the best way for you.

[PMRpro Ambassador in reply to Offsideinzaghi]

I would just ask for your results and back copies. I'm not surprised you are losing faith - I would too. Bee and DL have already said everything else I would.

[piglette]

I have discovered through bitter experience it is a total waste of time reducing if you are already in pain as it will just get worse. I find to get the PMR under control, I increase by say 5mg for a week or so then drop back to where I felt OK. I think you will have to really make your doctor realise what pain you are in. You may as well not take steroids if the pain is that bad. I know that can be difficult with some doctors who seem hell bent in getting us off pred rather helping the pain.

[Offsideinzaghi]

Thank you to everyone for the information. It has given me food for thought re doctor and taking and level of steroid.

[DorsetLady PMRGCAuk volunteer in reply to Offsideinzaghi]

Just remember, we’re always here if you’re not sure about things…good luck

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In my mind I would go back to 8,stabilise to see if all pain goes away and then after a fortnight or longer depending on your body, start drop to 7.5,7,6.5 etc.

I assume you have a good supply of 5mg and 1 mg on hand and when you do need to see GP ask for more scripts especially if the pain disappears at back on 8mg.

You need to explain to the GP that this is a two way street and it is his/her job to make sure you are not in pain.

Good luck...I've just dropped today from 7.5mg to 7mg coming down from 15mg over a year and only my wrists are achy in the morning but a couple of panadol osteo's help out there.