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[kipsky]

I’m on 10 mg Pred currently, but wanting to reduce. My present symptoms, presumably the usual uncooperative shoulders, stiff hands and knees are manageable but I don’t want them to worsen. I don’t know anything about steroid withdrawal symptoms though.

[DorsetLady PMRGCAuk volunteer]

Hi and welcome, 40mg is a high starting dose for PMR - were you given any reason why so high?

To get down to 10mg is good - but you probably need to ease off your reducing now - and go a bit slower.

Steroid withdrawal usually comes on immediately after reduction and lasts for 3-4 days until your body gets used to new dose.

Your symptoms might be manageable - but just an extra 1or2 mg might resolve the issue.

No point taking Pred if you’re not taking enough - you get side effects with out the benefits.

You are only a little way through your PMR journey - and your aim is to reduce slowly to find the LOWEST dose that controls your symptoms - not reducing relentlessly to zero.

You might find this gives you a bit more info - please come back with any further comments/queries

healthunlocked.com/pmrgcauk...

[kipsky in reply to DorsetLady]

Thank you for your response. Apparently the levels of inflammation called for a very high starting dose. I will go slowly from here on.

[DorsetLady PMRGCAuk volunteer in reply to kipsky]

Okay. Good luck.

[PMRpro Ambassador in reply to kipsky]

The blood markers and the dose don't really bear much relationship ...

[SheffieldJane]

In my experience withdrawal symptoms tend to be short lived, say 3-5 days and then they improve. If the symptoms such as yours worsen then you know that your body is not ready. I also found that from 10 mgs, I needed a tablet cutter to enable me to reduce even more gradually by 0.5 mgs using the DSNS method or any gradual method shown in the pinned posts. This got me down to 7mgs and even with all the precautions I stalled there due to my Adrenal function beginning to wake up, but that is a different issue to discuss when you reach this stage. I hope this is of some use to you.

[kipsky in reply to SheffieldJane]

Thank you for that useful information. I will go slowly from here on.

[PMRpro Ambassador]

Hi and welcome.

You talk about "present symptoms" - were they better at a higher dose? Where (what dose) did they reappear?

Everyone wants to get off pred. Everyone doesn't want their symptoms to return/get worse. It is a balance - and I fear you may have gone a tad too low for now and if you insist on aiming lower you will get your symptoms back.

Pred - whatever dose you started at - cured nothing and will cure nothing. It is a management strategy to live reasonably well until the underlying autoimmune cause of the symptoms burns out and goes into remission. Until then you need enough pred - it doesn't mean you won't get lower, just not yet.

[kipsky in reply to PMRpro]

Thank you so much for your response.

I had virtually no symptoms at 35 mgs where I stayed for a lot of the summer. They gradually returned as I reduced but nowhere near the symptoms I had at the beginning. At 9, following my consultant's advice I went back to 15 in mid January, and then came down to 10 via 15/10.

I had tendon damage to my left arm/shoulder which has been getting gradually better over the months, but I still cannot raise a cup to drink normally. I have to raise my elbow high or keep it close to my body in order to use my left arm for lifting.

The right shoulder was damaged as a late teenager so I tended to rely more on my left arm, but I now need to use my right arm/shoulder, which I can do to a reasonable extent, especially if I swing it up for hair brushing and reaching up to shelves. It is fine for drinking etc.

I walk 2 miles a day on average and can walk 5-6 with no difficulty. I garden every day. I do the NHS arthritis morning exercises on weekdays. My lifting strength is still good. I have walked and gardened most of my life and can still do (nearly all of) what I want to do, so life is OK.

I was to see my NHS consultant on Monday but he has C19, poor man. I spoke to a practice rheumatology nurse who advised reducing by 2.5 a month, but that was in response to my saying I wanted to get off Pred asap!

After what you say I will go much more slowly. I understand now there is no hurry. I just wanted to get my immune system back, but I realise that will take time.

I am very grateful to you for giving me the information that I needed.

[PMRpro Ambassador in reply to kipsky]

No reduction should be more than 10% of the current dose - and part of your current problem may have been due to dropping from 15 to 10mg so fast. Now it should not be more than 1mg per months - and experts say that reducing at more than that is predictive of flares.

We also suggest slowed tapers like this one:

healthunlocked.com/pmrgcauk...

and it is such slow approaches that many people credit as being the means for them having been able to get to low doses and even off pred altogether. DorsetLady also has a similar approach.

If you stayed at 35mg for a long time that may have made your reduction harder, especially if you tried to do it quickly. But there also remains a question as to whether this is "just" PMR since not many people require that high a dose - although it does sound as if someone just chucked that dose in because of high markers which, as I said, don't always mean there is a more serious underlying cause such as GCA.

[kipsky in reply to PMRpro]

OK, thanks for all that valuable knowledge and insight. Really helpful. I will go really slow from here on!

[Daffodilia]

Reduce slowly and stop if PMR too bad

[kipsky in reply to Daffodilia]

Thanks so much. Will do.

[Bignorhill]

I am afraid I have a different view. It depends on how you want to manage pain. The Pred just hides the problem, I have not taken any since December (now 22 months with PMR) and just have some Naproxen that I take occasionally.

I find that I have stiffness in the hips but still manage to run 8km. I have a lot of pain in the shoulders especially the left but in varies from day-to-day. I have just personally decided to stay off the Pred to avoid any side effects of them.

So it is personal thing to decide whether steroids are for you or not on-going.

[Hidden in reply to Bignorhill]

Hardly without its problems if you leave PMR untreated it is more likely to turn into GCA than when treated. The vasculitis can leave other long term Cvs issues. That's your choice but not a recommended way to not treat it. Research shows different kinds of PMR may exist. Fit people, men in particular, seem to exhibit a more classic form of over night onset with a shorter period of PMR activity..usually the 12mths mentioned by drs. Some people can't even get out of bed or walk or shuffle or raise their arms before during and after PMR. I hope you are without long term vascular issues and it burned out at the 12 to18mths

Most side effects can be effectively managed and long term low dose steroids are not as bad as most people think, especially dr's and patients. The only side effect that does go against that is cataracts. Maybe less of a choice but context dependent.

[kipsky in reply to Hidden]

Yes, I was fit and mine was virtually overnight. I could just get out of bed and it was originally diagnosed as sudden onset Rheumatoid Arthritis. I can walk and garden now so life is much improved.

[Hidden in reply to kipsky]

A lot of men get that classic, though we have a few with PMR for several years too!

[PMRpro Ambassador in reply to Bignorhill]

I dispute it is "a personal thing to decide whether steroids are for you or not". Of course, it all depends on how bad your PMR is - and yours is obviously not very bad. Once I was moving I could ski - I never could run for other reasons - but that never dealt with the pain I had 24/7 at times and which affected every aspect of my life for over 5 years. Living in a house with stairs and only one toilet was the crowning glory - I crawled upstairs on hands and knees and stomped down one step at a time like toddler. Travelling to my flat here made a major difference - but that was an absolute luxury that isn't available to everyone. Pred allows us a decent quality of life - and a degree of dignity.

However, pred does NOT just "hide the problem", it effectively combats the inflammation that is the cause of the symptoms - and which, if left unmanaged causes ongoing damage to the arteries and other blood vessels it affects. Which, in the longer term, can result in PAOD (peripheral arterial occlusive disease) which can restrict blood flow to limbs causing other problems, or enough damage to the larger arteries to cause aneurysms or serious damage to the artery wall leading to dissection - both life-threatening events. Or provide a place where atherosclerosis can establish - and THAT increases your risk of stroke or heart attack. In the case of PAOD, it is not always possible to improve the situation by surgery if it is extensive and eventually it may lead to amputation of toes or more when their blood supply is compromised. In addition, untreated PMR is more likely to progress to GCA - and there your choice is not pain or pred, it is pred or risk total and irreversible loss of vision. A game of Russian roulette that may have been averted by taking a low dose of pred for your PMR.

[kipsky in reply to Bignorhill]

Thank you for your view of things. It is always interesting to hear a different side, and each can make their own choice. I would prefer to avoid a lot of shoulder pain if I could!

[Bignorhill]

I had a Cortisone injection in the right shoulder which helped a lot. Cannot get the left shoulder done at the moment due to Coronavirus.

[kipsky in reply to Bignorhill]

OK, good luck with your left shoulder when things return to normal.