Tapering and Pain

[rescuedogs]

HI I am new to this group. I'm writing for my husband who has PMR. He is down to 10 mg and has slight pain all the time. He is never pain free but it is tolerable. Is he supposed to be pain free when your on the right amount of mgs? The doctor dropped him to 9 mg and he is in a lot of pain. I told him about this group and had him go back to the 10mg and when he tapers go to 91/2 mg. Is anyone ever pain free at the correct dosage? Is the safest way to taper by going only 1/2 mg at a time? Thank you so much for your imput. I find forums are more effective than the drs at times.You know the pain. They do not.

[HeronNS]

Was he ever pain free? We are told that the least we should expect is 70% improvement but I think most of us are lucky enough to do better than that. As we taper we are told to keep a dose which maintains the same level you had when you felt your best after starting pred. But I think for many of us this is impossible. For one thing we may have other conditions which also cause pain. I, for example, was 100% painfree my first eight weeks on pred, four weeks at 15 mg, then tapering by 1 mg per week. I experienced niggles at 9 mg, went back to 10 for a couple of weeks, then started tapering using the dead slow nearly stop method. But if I am being completely honest never from that point on have I been completely pain free. But I had pre-existing osteoarthritis, and although that also went away on the higher dose of pred it would be a very bad idea to maintain that level just to deal with osteoarthritis.

Just yesterday I was thinking about what life had been like before I was diagnosed, probably about 14 months undiagnosed. How I had to plan how to get out of bed, how I could hardly turn my neck to shoulder check when driving, how one evening after suffering through my usual exercises it took me half an hour to get back up off the floor..... None of those things are an issue now. Yet I am sometimes quite significantly creaky and sometimes I think it's PMR, but it really is "only" OA.

If your husband doesn't have any other pain causing conditions and is feeling the same sort of pain which crippled him before diagnosis he needs to get that in hand before any more tapering is even considered. Better to go to a dose which works properly and then start a truly slow taper. "It isn't slow if it works". And keeping flares to a minimum or avoiding them altogether can only be achieved by going slowly, and will in fact result in a lower lifetime intake of pred.

[rescuedogs in reply to HeronNS]

Thank you so much for your reply and help

[Blearyeyed]

It really does depend on the individual , how severe your symptoms were originally , and if you have any other health issues that you take Self Care Treatment or Medication for as well.

Sometimes the persistent pain can be because you have tapered too early to a lower dose since you were diagnosed , or because you have gone below the dose you need to cope at that point in your illness.

Sometimes you can also have accompanying pain from non PMR causes , from nerves or in muscles because of changes in activity or how the illness effects your sleep or posture .

Many people try a standard daily dose of Paracetamol for a time to see if that also improves there symptoms. Some people get help with nerve relaxants , often taken at night and this helps.

Many people with other conditions on top of PMR , like OA or RA or Nerve conditions , need to increase their medication for other illnesses to also help reduce the Pain as each condition can trigger Pain in each other until the doses for all pain relief drugs are sorted. If you have more than one condition that causes Pain you are usually only Pain Managed rather than 100% Pain Free. But Pain Managed must feel comfortable and allow you to take part in moderate daily activity without Flares of Pain and Excessive Stiffness.

Pacing Yourself and having more balance between rest and activity also helps reduce the Pain , sometimes if you don't do this and try to keep to the old routine you can just keep increasing your inflammation. Many people find relief from taking their Vitamin D , Omega 3 and Magnesium supplements and lotion . Heat Pads on specific pain spots , Comfier cushion support in bed or chairs , extra fluids and a light nutritious diet with less sugar and carbs , and gentle rotating exercise of the joints and a joint cream can all help in improving the pain even after you have your dose right , and throughout your illness.

If the Pain feels like PMR and is getting worse on the lower Steroid dose over a few days to a week , despite trying other things , it's usually good to speak to the GP about it . Let them know you have tried other things without any relief and discuss increasing the dose , having more time on that dose to get Pain Control and then using a slower taper .

Thank you for being so supportive to your OH , you deserve a big hug xx

[rescuedogs in reply to Blearyeyed]

Thank you so much for your support and responding to my text The hug is welcomed

[DorsetLady PMRGCAuk volunteer]

I will answer your PM.

[rescuedogs in reply to DorsetLady]

Hi I'm trying to find the PM so I can see your response

[DorsetLady PMRGCAuk volunteer in reply to rescuedogs]

Just lost it!,, so will have to write it again! Hang in in there!

[rescuedogs in reply to DorsetLady]

Sorry. Where did you write it so I can respond? Thank you

[PMRpro Ambassador in reply to rescuedogs]

Just look at the top of this page to where it says Chat with a couple of clouds. It will have a red number next to it when the reply arrives and if you click on it you will go to the message box,

[PMRpro Ambassador]

A basic rule is that the PMR symptoms should not be worse at the end of a taper than at the beginning - The drop from 10 to 9 didn't fulfil that criterion.

If he reduced from every day 10 to every day 9 mg from one day the next that may have been the problem and just doing 1/2mg at a time and, even better, adding in a slowed taper might help.

He is not reducing relentlessly to zero - yet. He is reducing the daily dose to find the lowest dose that gives the same level of symptom relief that the original starting dose did. If someone starts at 15mg it may not be enough to achieve total freedom from pain - and then a short while at 20mg should be tried to see if it makes a difference. Some people are never entirely free from pain - everyone is different. But no-one should accept increasing pain and disability as they reduce until it is shown it is something other than PMR causing the trouble.

[rescuedogs in reply to PMRpro]

Thank you very much

[rescuedogs in reply to PMRpro]

So you feel it makes a difference what dose the dr started you on . I will ask but I think they dropped him quickly. Does that mean he should go way up again to 20 mg and start all over with a slow taper?

[PMRpro Ambassador in reply to rescuedogs]

No, no, not at all. If the pain relief at 15mg was acceptable and 80-90% improvement on without pred then there would be no reason to go higher anyway. But that is the level you then aim for all the way down. Some pain may take a few months on pred to resolve - my feet and hip joints took 4 or 5 months - suddenly I realised they didn't hurt any more. But the 9mg is a step too far just at the moment - it doesn't mean he won't get below 10mg, just not yet.

[rescuedogs in reply to PMRpro]

I understand Thank you so much

[piglette]

Some lucky people manage to have no pain, but the majority of us are not quite so lucky, but at least are a lot better than before and are comfortable as long as we time ourselves and don’t overdo it. Personally I would only go half a mg at a time under 10mg. Doctors are very keen to get us to reduce like bats out of hell. If I have a flare I usually up the dose by 5mg for a week or so to really hit the PMR on the head and then I can drop down immediately.

[rescuedogs]

What do you mean by drop it down immediately? How quickly after you finally feel better and do you mean 1 mg a week, day? Thank you so much I'm learning

[HeronNS in reply to rescuedogs]

Some people say you can drop right back to the dose where you last felt well, usually a mg or so more than where the pain started to come back. When I've had incidents like this I've dropped down a mg a day until that point, so basically taking about four or five days to get down. I only do this because I feel nervous about dropping down by 4 or 5 mg all at once!

[rescuedogs in reply to HeronNS]

Thank you

[IslandRN]

My baseline is 75-80% improvement in pain which is how I felt when first starting prednisone. If tapering results in my baseline to decrease I know I am either tapering too much or too fast. Once I got to 8 mg, I tapered by 0.5 mg every 4-6 weeks and now that I am at 7 mg plan on tapering 0.5 mg every 2 months (provided I remain at my baseline). I have learned, from all the warriors in this group, that following a slow taper is vital when on this PMR journey.

[rescuedogs in reply to IslandRN]

Agreed. Thank you

[Charlie1boy]

Hi,

Just looked back at my steroid reductions at the 10 to 9mg mark. It was not a easy time, and I think there were others who had difficulties at about this level.

In my case I tapered to 10mg on 12th July 2015, then 10 to 9 via the dead slow nearly stop plan from 24th July 2015 getting to 9mg by 14th sept 2015, but in three days time, on 17th sept, it was back up to 10 mg..

Finally, I got to 9mg on the 4th of November 2015, via a four week spell at 9.5mg.

I never had a flare over this period, but clearly I was not quite comfortable. All in all, it took me about four months to get from 10mg to 9mg. This PMR business needs lots of patience! I am now on one mg after just over five years.

I hope you manage to get it sorted.

Good luck

Paddy.

[rescuedogs in reply to Charlie1boy]

It seems the slower the better everyone is doing . My husband is going to do the same. Thank you so much.

[Charlie1boy]

Thank you for your reply, and yes, I really believe that is the most sensible option. Good luck.

Paddy

PS: we have a new rescue dog after our old boy, Charlie, died last September. Now we have a got a gorgeous and very loving black Labrador bitch, 8 years old!

[rescuedogs in reply to Charlie1boy]

God bless. There is nothing like a rescue. I sometimes wonder if they really rescue us 🙏🙏🦋

[Charlie1boy]

Agree absolutely. Lizzie, our latest, is our fourth rescue dog, and she is getting us both out walking again, which we desperately need. On top of that we get all the love in the world!

Paddy

[Alebeau]

Does he take the whole dose in the morning?

I was doing that and suffered each morning and every morning. Since Dec 20 last year I split the dose to half at 8 am and half at 8 pm. I am almost down to the 10 mg dose now and relatively pain free all day and all night. A miracle for me.

[rescuedogs in reply to Alebeau]

Thank you. I’m happy to hear your pain free🙏🙏🦋🦋

[rescuedogs in reply to Alebeau]

He tried that but he was in terrible pain at 4AM . The pain always woke him up