should I continue with predinsone?

[jcohend]

I am 61 years old, I am taking predinsone for my PMR condition for 18 months already. I tried to get off and I tapered down 0.5 mg every week. when I got around 5 mg I started to feel pain again but not so bad. After I stopped within 1 week I was back to terrible pain in all my joints. Should I go back, to what point? I debate between living in pain and my fear from taking predinsone for so long. I would like to learn from other people experiences. thanks

[Hidden]

Hi jcohend

I too have dx of PMR for 18 to 20 months. Your reduction plan seems very fast. If you are having symptoms it is normally suggested you go back to dose that helped reduce symptoms.

I am 56 and still at 10mg. I am quite happy to take pred as long as it helps control symptoms. Dont forget your body naturally produce same hormone at 7mg ish. Taking pred switched that off and reducing very quickly can be problematic.

I have been down to 8mg but symptoms came back with vengeance. Happy to hover around or up to 7mg once i get there if required. I am sure someone will be along with more experience than me.

[SheffieldJane]

hi jochend!

Do you mean you went from 5 mgs to zero before your symptoms returned with a vengeance?

No wonder if that is the case.

It isn't just a matter of tolerating the pain and lack of mobility that comes with unchecked PMR. Letting the inflammation carry on can actually do you permanent damage. I am under investigation for potential damage to my Aortic Valve. I suspect if this proves to be the case, the damage happened before I was diagnosed with a form of Vasculitis ( PMR). The main danger though is Giant Cell Arteritis. That is seen in a significant % of PMR patients. This can of course put your eyesight at risk. Only the appropriate dose of Pred gives us protection from these consequences. Not to mention the pain and lack of mobility you would have to endure. PMRPro has posted the latest research that shows Prednisalone ( and its other brand names) is not long term harmful as was once feared. On PMR doses. I would rather take my chances with the only really effective treatment that we have. Most of the side effects can be managed as they pop up. You don't feel perfect or particularly well but I for one, feel safeguarded.

The disease remains active in most people for around 4 years. The aim is to find the lowest dose we are comfortable at. You may have to return to 10 mg initially but I would start with 5 mg and hope things haven't got too far out of hand and that you need to start again at 15/20 mgs. Patience is the name of the game. Please let us know what happens with you. I do wish you well and understand your frustration and ( probably doctor induced) fear.

[DorsetLady PMRGCAuk volunteer]

Hi,

Would agree with Poopadoop that you have tapered quite quickly, and have obviously gone below the actual level of Pred that you need. Plus at 18months it is highly likely that your PMR is still quite active.

Not sure what level you are actually on at the moment, but if you started getting pains returning at 5mg then that is not enough.

Perhaps you should try a dose of around 7mg, as Poopadoop has said that is around the normal level your own body would produce naturally so it is not considered to be a large dose. There is no point living in pain, that means your condition is not under control and therefore may be creating more damage to your body.

Your fear of taking Pred is understandable, but at low levels which is anything under 7mg it is mostly unfounded.

Personally I took Pred for 4 and a half years starting at 80mg and I’m still hear to tell the tale!

Have a look at this, it may help healthunlocked.com/pmrgcauk...

[PMRpro Ambassador]

You don't have to fear taking pred "for so long" - a recent study shows it isn't half as bad as many doctors believe:

practicalpainmanagement.com...

I've been on pred for over 8 years, a lot of it at over 10mg/day and I have no problems to complain of: no signs of diabetes, gained weight but lost it again with a low carb diet, no cataracts, no raised eye pressures etc etc. But I am pain-free near enough and live a normal life. Leaving the unmanaged inflammation is also bad for your body - longterm it also causes damage, and pred helps prevent that.

You are never reducing relentlessly to zero - you are looking for the lowest dose that manages your symptoms as well as the starting dose did. That was about the 5mg mark for you by the sound of things, maybe 6mg. You may get away with just going back to that but you may need to go a bit higher to do the "springcleaning" before going back to "daily dusting" - you are looking for the amount of pred that clears out the daily new dose of inflammation and stops it mounting up to eventually cause pain and stiffness.

About a quarter of patients are off pred in 2 years, another half need up to 4 to 6 years - and a few of us much longer. Once you are a dose of about 8mg and below you are only taking the same amount of corticosteroid as your body produces daily naturally anyway in the form of cortisol which is essential to life. The side effects really are minimal - some of the cosmetic ones may not feel so but comparing bruises and delicate skin to being in constant pain and immobile as you can be eventually with PMR I don't find it is much of a contest. Most of the pred side effects can be managed when you know how. I had 5 years of PMR without pred because it wasn't diagnosed - I never ever want to go back there again.

[Tonysue in reply to PMRpro]

You always boost my confidence with your sound advice and knowledge. I am reducing very slowly, Dorset Lady’s way.👍 and have lots of set backs but don’t have the fear I used to have about PMR thanks to all the information I get from our wonderful web site.😘

[yogabonnie in reply to PMRpro]

This is the best. thank you for this link. Every day I am reassured by you all. pretty soon I am going to be GLAD I have this...for all the good information and healthy new beginnings it is prompting in me.

[Rugger]

I've had PMR for 19 months and up to one year, I was tapering at 1mg a month. Then I had a flare and had to go back up from 4mg to 10mg. This time, I'm tapering at 0.5mg per MONTH, not every week, like you. When you find a dose which controls your pain, make sure you taper slowly. Have a look at the pinned post on the right 'Steroid Taper Web Application', which will give you lots of options.

[piglette]

A lot of people take 5mg or less for life. Going through unnecessary pain is not a good idea as it could have repercussions.

[nevagivup]

I and many others on this forum have had long term PMR or GCA and been on Pred for years. Nine years in my case. I am 77. Many flares/relapses, but now down to 3.5 mg. My total cholesterol is slightly raised, but good cholesterol is in charge. No need for statins. All other blood markers are normal. I have no osteoporosis. I know I am luckier than some other people, but maybe other factors come into play in their cases of PMR, not just the Pred. You must not martyr yourself to pain because of fear of Pred, really, and trust what other contributors to this forum have said. You need to control the inflammation because of the damage it can do. 18 months is a very short time. I would go back to my GP at this stage and discuss your dose before you try to taper too quickly again. As one GP told me "This is not a race. It is about you living without pain, for however long it takes." Best wishes.

[jcohend]

Thanks to all for the answers. I felt alone in this battle and your answers help me a lot. First knowing that going back to predinson is the right thing to do. Second for the moral support of other people going through the same and finding a good balance and quality of life in spite of the PMR. Thanks a lot

[GOOD_GRIEF]

Hi JC:

Here's the thing: Doses of Pred may not be the best thing for humans to ingest, but it's the only thing that tamps down the inflammation that is PMR. Pred's risks are known, and most can be managed with diet and supplements.

On the other hand, unchecked inflammation causes all kinds of problems that can't be adequately addressed once the damage is done. And Pred is the thing that limits that damage.

It's a balancing act. We need to take enough Pred to deal with the inflammation - which can at times run higher than at other times - so that we can avoid the permanent inflammation damage and maintain a reasonably independent quality of life during and after PMR.

Watch your diet. Take your medicine and take your D and calcium. Keep your appointments and deal with any unusual symptoms promptly. Exercise for flexibilty, then stamina, then strength. Get plenty of rest so your body can use its energy to deal with the PMR. Stoip stressing about what's out of your control, and focus on what's in your control.

That's what I've learned since November 2016. Now at 10mg from 20, and heading down another 0.5 tomorrow.