When to reduce?

[David_H]

Hi, i've seen the suggested Pred reduction proposals on the forum and I'm wondering what plan should be employed when one of the reduction stages results in increased symptoms. Is it best to carry on on the current dose (for how long?) or revert to the previous level (and again for how long before going back to the proposed plan?). Thanks

[piglette]

I tried to stick it out on the current level last year when things got worse and tried to soldier on, it was not a good idea, my CRP and ESR shot up, not to mention I felt rubbish. In the end I increased the dose by 5mg and dropped 2.5mg within a few days then slowly went back to the original dose with no problem.

[DorsetLady PMRGCAuk volunteer]

Hi David,

Suggest you go back to previous level where everything was ok. Stay on that for a couple of weeks, or to when you feel things have settled down again, I.e. Painfree. There is no "right" amount of time, everyone is different. And as has been said many times, it is not a race to get to zero, as many GPs seem to indicate, it's to get to the lowest dosage that still keeps you free of pain.

Then try reducing again, you don't say what dosage you are on, but once you get below 10mg things get more difficult (remember the 10% rule). So you may have to reduce by half a tablet at a time. The plain white ones are okay to cut, but NOT the coated ones. Much better to go slowly than have relapses! Good luck, DL

[DeliaGray in reply to DorsetLady]

Hi again Dorset lady. well, it seems that I am in full flareup again. Bummer. I started to lose weight, and extremely tired, night sweats and some pain. The only helpful advice that I am getting is from this forum. I had been at 13 mg for just over a week and then the problems started. 15 mg seemed to be no problem, nor 14, but how does one know if it wasn't building up during those reductions and just didn't happen with one of them? I went back to 20 mg yesterday but do not really want to go back that far. My gp said to stay on it until I was able to contact my rheumy,{ who by the way is only around 2 days a week},which isn't helpful if one gets sick on the other 5 ! Anyway the rheumy emailed me today and his advice was stay at 20 for 1 week and then reduce every week 1 mg until down to 10. He hasn't got a clue.!! I have no intention of doing that.!! By the way I have scrapped my [plans to visit my sick brother in England as I am too scared to travel with everything fluctuating like this. I really want to be there so much. Anxious to know what you think about the reductions. Thank you,Delia.

[DorsetLady PMRGCAuk volunteer in reply to DeliaGray]

Hello Delia,

Would suggest you stay on 20mg for at least a couple of weeks, the first to get painfree, then the second, or even third to consolidate the control of inflammation. How quickly did you do your previous drops, I can see they were by 1mg, but were they weekly reductions? If so, that maybe why you had the flare, your body didn't have time to adjust to the new reduction before you imposed the next one.

There are a couple of ways forward, you could reduce by 1mg, but stay on each reduction for two weeks until you reach 15mg. Or, like me you could drop by 2.5mg a time, but stay on each new reduction for 4 weeks. Swings and roundabouts.

However, once you get to 15mg I would suggest you go on the slow reduction plan, it does take a bit longer, but much less likely to get a relapse, and no reaction to the drop. When I did the "overnight" reductions I always got a few days of feeling yucky. That doesn't seem to happen on the slow plan.

Once you get to 10mg, then you might want to consider dropping by half a tablet - see above answer to David.

Once you feel stabilised, hopefully you can visit England, just don't consider a reduction whilst you are on your travels. Hope things soon become better for you. DL

[DeliaGray in reply to DorsetLady]

Thank you for your reply. I did the reductions one mg every 4-6 weeks. That is why I feel disheartened. I will stay on 20 for two weeks and then go 2.5 at a time until 15 or 14 and then stay on that for a couple of months before trying 13 again. At this time I have absolutely no energy or desire for food. Not good! Thank you for all of your help. Delia

[DorsetLady PMRGCAuk volunteer in reply to DeliaGray]

Yes, good idea. It does get very disheartening when things go wrong and you feel dreadful as well.

The trouble is the doctors seem to want to get you off Pred ASAP, but unfortunately for most people that doesn't work.

Hopefully the increased dosage will get you back to feeling better and your appetite will return soon. I'm sure once you get stabilised you will feel more positive.

We all want to get off Pred, but really what we should be aiming for is the lowest dose to keep us pain free, which obviously varies from person to person.

As I said previously once you get to lower doses please try the slow reduction plan, it really does work much better. Remember the story of the hare and the tortoise! DL

[DeliaGray in reply to DorsetLady]

After reaching 20 mg I did the very slow reduction programme of 1 mg every 4-6 weeks. I will just try again when I am feeling better. Thank you. Delia

[PMRpro Ambassador in reply to DeliaGray]

Delia - I can't remember but does "after reaching 20mg I did ..." mean that you started well ABOVE 20mg? So do you have GCA rather than PMR? And how did you reduce before 20mg - over what period of time?

[DeliaGray in reply to PMRpro]

Thank you for your mail. I stared at 80 mg on July 7th last year. I have GCA and PMR.My Rheumy has always wanted me to race down to 10. Once I found your blog I started slowing it down but he had me at 20 my the middle of October.He had me reducing every two weeks from Sept. to 20. After that I didn't follow his instructions anymore , because he wanted me to reduce 1 mg every week down to 10. I have followed your instructions since then by reducing 1 mg every 4-5 weeks. I printed out a paper from England of the slow reduction and took it to my gp when this relapse started on Sunday. My rheumy only works 2 days a week and is no where to be found if one gets sick on the other 5 days. ! My Dr. took the paper, but said, "Just because this works in England doesn't mean it will work here."! What an idiotic thing to say, the disease is the same, as is the medicine.! I don't think the medicine knows which country it's in.!! I am British by the way. I wonder why Drs. have such large egos.! I can understand that they do not spend much money and effort on research over here since they don't get nearly as many cases, but all the same, some empathy would be nice.! I feel very alone with this when I have a relapse. Thank you for all of your help. Delia

[PMRpro Ambassador in reply to DeliaGray]

Some of the biggest studies were done in the USA - in Minnesota, Olmsted County to be exact, where there are large populations of Scandinavian origin. And it is the USA authors who pushed the "not more than 10%" recommendation and said the major course of flares is reducing too far or too fast. The Mayo says similar things.

So the climate has an effect on PMR does it? I'm so pleased I am unlikely ever to have to meet that numpty! Just point out that you are British so it will most likely work for you! And find some more sensible doctors - sheeeeesh!

Why such large egos? In the US in particular they have spent so much of their own money on training that they HAVE to feel "special" to justify themselves. I was at uni with them - they also have to go to the bathroom, just like we mere mortals.

[DeliaGray in reply to PMRpro]

Thank you, love your comments. If much of the early research was done in the U.S. They sure think they know better than that.! I will plod on.

[PMRpro Ambassador in reply to DeliaGray]

I'd really suggest getting yourself a more broad minded doctor who doesn't have xenophobic tendencies

[DeliaGray in reply to PMRpro]

Thank you, Is it normal to feel very tired at relapses? I do not even want to get our of bed in the morning after a great night's sleep. I am normally a non-stop person and this is most unlike me. I feel as though I could sleep all day, but I still work so that isn't possible. Thank you for all your help.

[PMRpro Ambassador in reply to DeliaGray]

GCA is almost certainly due to an underlying autoimmune disorder and autoimmune disorders are very often associated with fatigue - defined as feeling tired for no apparent reason that doesn't resolve with rest and a good night's sleep. It can be utterly overwhelming.

I know you work - but being a non-stop person isn't a good mix with GCA/PMR. Your body needs rest to heal - and allowing it to heal is important.

[DeliaGray in reply to PMRpro]

Thank you for your reply so promptly,I always feel so guilty when resting in the day, I need to get over that. Instilled in me by a not so nice mother when I was a kid. I will try. Her pet phrase was, I quote, " Days are for working, nights are for sleeping." Whenever I had any kind of sickness she would say."You always get things other people don't get, why can't you be like everyone else and get normal things,!" Since being diagnosed with pmr and GCA I have often thought, She would have a heyday with this one.!!!" Haha.!

[PMRpro Ambassador in reply to DeliaGray]

I do hope you and I do not do to our children what they and their like did to us. They instilled a lot of guilt that generation - I hope it is weighing on their consciences now.

You must rest - Shakespeare knew its value! It is a miracle healer and it has few side effects! Plan a rest during the day - and you will reap your rewards in the evenings!

[DeliaGray in reply to PMRpro]

Thank you, you are so encouraging. Have a wonderful day. It is beautiful here in San Francisco. at least I have a wonderful place in which to feel tired, and I should not feel sorry for myself. !

[PMRpro Ambassador in reply to DeliaGray]

Yes - this morning was foul - but we desperately need the gentle rain we had for a few hours today. This afternoon was glorious so we sat on the balcony.

We have to learn to love being watchers - and believe me, we can learn so much and grow. I know I have

[DeliaGray in reply to PMRpro]

It is very hot here today, and I have a standard poodle with a black coat. We have just done a slow walk in the park for an hour . The park is opposite my house. I sat a while and chatted with a neighbour. It felt so good, I really do have to learn to sit more and be a watcher. I did cancel an appointment I had this afternoon , that was a big step for me, and it wasn't important. We are in the middle of a very serious drought too, but since I cannot manufacture rain, I am enjoying the weather today. Thank you so much for all of your encouragement.

[PMRpro Ambassador]

When you get to a dose that is allowing symptoms to return you go back to the previous dose that worked - that is the lowest dose that manages the symptoms, which is what you are looking for. That is the main reason for using as small a decrement as you can - reduce 5mg at a time and 10mg probably works but 5mg doesn't. On the other hand, 6mg may be enough so going in small steps would identify that.

Pred does not cure anything or affect the underlying autoimmune disorder as far as it is known, it is used to manage the symptoms to allow a decent quality of life. That means you will need something for some time. No-one knows how long and for some it may be a couple of years maximum, I have had PMR for over 10 years, nearly 6 of them on pred. By decreasing in this very slow manner I have got to 4mg - previous reductions got me to 9mg, 8mg brought back symptoms.

As piglette says, if you stick it out at a dose that allows symptoms to reappear you run the risk of it building up into a full flare - like a dripping tap will eventually fill the bucket. You go back to the dose that worked - stay there for a few months and then try a tiny reduction again - if you don't you will never know if you can manage with less. And ignore any doctors who try to tell you that the PMR must have gone away because your blood tests show that. There is NO blood test that can tell you that. If your ESR and CRP are normal it is because you are taking enough pred to keep the inflammation under control and not raise the blood levels. The only way you can know is by trying if you can manage with less/no pred.

But you must reduce slowly - because even if the PMR has gone your body must start to produce its own corticosteroid again and it doesn't get that right from one day to the next either.

[David_H in reply to PMRpro]

Thanks very much for your reply. I tried taking a couple of Paracetolmols in the morning and this seems to have helped. Is it OK to take this regularly with the Pred? Have others found that the combination is beneficial? Thanks

[PMRpro Ambassador in reply to David_H]

No reason why not if it helps. Paracetamol does nothing for me but I know others have said it has helped them. It is NSAIDs - non-steroidal anti-inflammatory drugs such as ibuprofen, diclofenac or naproxen - that must be avoided with pred. But paracetamol isn't sweeties either - it can cause liver problems so don't go mixing it with other cold remedies and things that also contain paracetamol or too much alcohol!