What a difference 1mg has made!

[Charlie1boy]

After spending 7 weeks at 10mg, I tapered down to 9mg via the "dsns" method, which took between 7 and 8 weeks. During that time, I was aware of increasing discomfort at the back of my thighs, but it was a very gradual process. Also, for the first time since pmr diagnosis at the beginning of the year, I was starting to feel the odd twinge in my shoulders.

Having arrived at 9mg, this discomfort became much more pronounced, so I have decided to revert to 10mg again for a while. Almost immediately, the pain was much reduced, and I was surprised at the difference just 1 mg could make.

I am wondering now about the wisdom of the Bristol report that advocated spending a year at 10mg. I did try googling for this report, but no joy. Does anyone know the link, so I could read up on it?

Many thanks.

[Celtic PMRGCAuk volunteer]

Charlie, the Bristol plan starts patients on 15mg a day for 6 weeks followed by 12.5mg a day for another 6 weeks. The 10mg dose is then given for 52 weeks before recommending 1mg reductions every 4 weeks. They say that this has been found to prove more successful in reaching zero without so many flares.

Some people do find that whilst they feel fine at 10mg, they experience problems with symptoms returning when they try to reduce further. A similar sticking point can be around the 5mg dose. You have no doubt reached a point where your inflammation is still active and trying to break through, where 10mg holds it but 9mg is a step too far for now. Therefore you will need to remain at 10mg for a little longer and then perhaps try reducing by just half a mg next time around.

And, yes, it is amazing the difference 1mg can make. When at the very low doses, I found I had to slow my reductions to just half a mg to achieve success.

Here is the link to the Bristol paper:

rcpe.ac.uk/sites/default/fi...

[Charlie1boy in reply to Celtic]

Thank you so much for your quick reply Celtic. Yes, I do think I have reached the 10mg sticking point, even though I have tried to taper down slowly. You have described very accurately what I believe is happening to me.

I will look at the Bristol paper, but will stay at 10mg for however long it takes for the inflammation to settle down again. The half mg reduction also sounds sensible, so thanks for that suggestion. This is the first hiccup for me along the way, but, so far (touch wood) no flares.

Just hope I don't get too stressed watching the rugby on Saturday!t it could bring on a flare if England lose to Wales!!

[Celtic PMRGCAuk volunteer in reply to Charlie1boy]

Tee hee! Well, if England have you on the edge of your seat on Saturday, there is a rescue remedy which purports to 'comfort and reassure'. It's made by Bach and is available in Holland & Barrett!!! Although I've lived in England for most of my life, I was born in Wales - both parents Welsh - and with Rugby-playing cousins, so I don't think I'll get too stressed either way! Think my blood pressure may have been the victim this weekend though watching the Murray brothers in the Davis Cup! Enjoy the match on Saturday - I believe it's going to be in Cardiff, so at least one of our major roads won't be closed yet again - we live quite close to Twickenham!

[Charlie1boy in reply to Celtic]

Twickenham I think, as we have home advantage. My remedy may have to be alcoholic! Let's just hope for a good game without injuries, and too much interference from the TMO.

Yes - my wife was stressed by the Murray brothers, especially the doubles.

Best wishes

[babssara in reply to Celtic]

WOW! xxxx What can I say, come on you Scots!!!! What did you do this weekend, GP?, triathlon? (sorry, couldn't resist - you've got to laugh haven't you???) xxxxxxxx

[babssara in reply to Charlie1boy]

Gosh don't. I live in E sister in W. I think I will stay in bed!!! Both keen R fans, Joyce more so than me x

[Parijm]

Hi Charlie Boy! I am interested in what you say (both PMR related and rugby!). For me reducing from an initial dose of 30 mg to 10mg was ok but going to 9mg and 8mg I was enduring more discomfort than I cared for. I reverted to 10mg on advice of my Rheumatologist in March, although I wondered if the increase should be greater. Have felt fine on 10. I have today dropped to 9mg - 6 months at 10mg. I wait to see. I was using the DSNS method and will try it again. Watched AllBlacks v Argentina which was quite entertaining, but my heart would love to see Wales win! Strange things can happen in rugby as Japan know!! Good luck with your Pred reduction.

[PMRpro Ambassador]

I wrote a post a few years ago called "How much difference 1/2mg makes" - same thing.

When you get to the dose that is right for YOU NOW then next bit down is a step too far. That is the beauty of the DSNS method - you get plenty of warning and you may fine alternate days old/new is right, any further is not and you can stick there, it is still a bit less.

I think a year at 10mg is maybe a bit excessive - trying now and again with DSNS will tell you if you can go a bit lower. It is an alternative in a lot of ways that may allow you to be on a lot less if you are lucky.

I'll be home next weekend so will be able to watch the rugby - if not on the big TV in Italian I can use the internet in the house - here on this campsite I have to go to the bar. As a true Scot I support whoever is playing England. Wales is next...

[PMRandRA in reply to PMRpro]

Gosh, I am English and hate/dislike/wish ill of no one. For instance, was glad that Scotland beat Japan today... I hope that what you said was tongue in cheek? lol? .

[PMRpro Ambassador in reply to PMRandRA]

- haven't you heard that expression before?

My son-in-law and his son are rabid England supporters. The best thing about it is that my daughter has discovered rugby - shame she didn't manage that 20-odd years ago when I was alone in front of the TV during a rugby game. My husband can tell the difference between soccer and rugby but that is about it!

[PMRandRA in reply to PMRpro]

lol, no never. But I lived abroad for 26 years, so didn't hear that. Phew, so it is a joke? That's good.

[Charlie1boy]

Thanks to you all for your replies. I'm clearly not alone in experiencing the 10/9mg syndrome. Will give it a few weeks now at 10mg, and see how I go, but it will be a very slow taper from now on.

Seems there are not many England supporters out there. It will not be good to lose this game with all the Welsh injuries!

[babssara in reply to Charlie1boy]

Don't lose the faith....................... B x

[PMRandRA in reply to Charlie1boy]

My first taper which was far too quick, stalled at 9, but my doc put me up to 15 and yo yoed 3 times to 15 as I had GCA symptoms again. Now I am stuck between 13 and 14 and scared that this is too high, No GCA at this point. I want to get to 10 again but already on 13 have aching wrists, biceps, shoulders and thighs in the mornings. Don't know what to do.

[PMRpro Ambassador in reply to PMRandRA]

15mg is very low as a dose for suspected GCA. If it is managing your symptoms and a lower dose doesn't it isn't too high - but without knowing a lot more about time scales can't say much. You may not have been at the 15mg dose long enough to manage all the existing inflammation which you have to do so a lower daily dose will manage each day's new dollop of inflammation. Or you may be reducing too fast - not everyone can reduce 1mg at a time. Or you may be a person for whom the antiinflammatory effects only lasts 12 hours (it can be 12-36 hours depending on the person) and splitting your dose may work better.

[PMRandRA in reply to PMRpro]

Oh no, I started on 30 mg, 15 is what I had already reduced to.

[PMRpro Ambassador in reply to PMRandRA]

Again, without time scales it is difficult to say much - but to get from 30mg to 15mg in GCA should take a good 4 or 5 months and if you are having GCA symptoms below 15mg then you need to be at 15mg longer. Trying to force a reduction will only end in a flare and having to return to a high dose again. Most people with GCA take something like 6 months to get from 40mg to 20mg - this is a serious illness and shouldn't be messed about with just to say you are at a lower dose of pred.

[PMRandRA in reply to PMRpro]

I followed doc instructions to the letter, just as an uninformed patient should. This is my blue notepad for my treatment, which my doc wanted me to get off as soon as possible, if not sooner. All approved by Rheumys

15 Oct '14 30

15 Nov '14 20

15 Dec '14 10

07 Jan '15 15

1 mg per month reduction to 11 on 5.5.15 , flare of GCA. increase to 15 and again at 13, 2 months later

Between Mar and now Sept, I wobble between 13 and 14 with 14 being better. Doc thinks I am on 13. is taking bloods next week and if normal, he wants another mg down to 12 but I know I can't.

It is the doctors who are rushing and since finding you ~I am trying to slow it down. Why is the Doc in such a rush?

Rheumy wants me to take pills which exacerbate my heart problem.

[PMRpro Ambassador in reply to PMRandRA]

I do not understand why doctors want us to rush off the only drug which manages GCA and PMR. Once you get into a yoyoing pattern it makes future reductions even more difficult. The blood tests are not the important point - the patient's symptoms are.

Research done a year or two ago showed that there is still evidence of inflammation in GCA even after 6 months on high dose pred - that means at above 20mg. You were allowed 2 months.

If it is possible I would ask your GP for a second opinion. Under the circumstances I don't think it is unreasonable. Be VERY clear about the way you feel when you reduce, do not play down your symptoms at all.

Where are you - order of magnitude, not the address!

[PMRandRA in reply to PMRpro]

I have 2 Doctors at the surgery, 2 Rheumys at hospital and a Rheumy specialist nurse. And they all contradict each other.

The letter from my last Rheumy visit said I have RA and used to have PMR and GCA! USED TO HAVE? HELLLLLOOOOOO HEEEELLLLP.

The Rheumy treats me for RA but I ignore her because I don't believe I have it no matter what the bloods say. But I do have PMR/GCA which she ignores. What a joke! Then they all stick together, what one says, the other agrees. Am trying to cut down to 1 doc again. Slowly.

Order of magnitude?

[PMRpro Ambassador in reply to PMRandRA]

Which county in the UK or nearest major town...

[PMRandRA in reply to PMRpro]

Berkshire, nearest big town Reading

[PMRpro Ambassador in reply to PMRandRA]

Is private an option?

Have you joined a support group? Chertsey is amazing...

[PMRandRA in reply to PMRpro]

No to both but I will look for a closer support group as Chertsey is a bit out of my comfort zone. Thank you for all your help.

[PMRpro Ambassador in reply to PMRandRA]

Unlikely I suspect:

pmrgcauk.com/groups/

[babssara in reply to Charlie1boy]

Oh yes there are. Come on England !!!!!!!!!!!!

[Celtic PMRGCAuk volunteer in reply to Charlie1boy]

Commiserations, Charlie - hope you've recovered this morning! Disappointing for England after a great early game; but very well done Wales!

[Charlie1boy in reply to Celtic]

Thought I might hear from you this morning. Had a sleepless night as I couldn't get those last two Welsh scores out of my mind! Just hoping now it does not bring on a flare!

Anyway, hats off to Wales. I thought they were tremendous in the end, but the English discipline was appalling from beginning to the end. We should have had the match sewn up by halftime. Can't see us beating Oz now, but you never know. Hope springs eternal.

Good luck against Fiji - the five day turnaround seems very harsh after a game like last night.

Thanks for all your advice etc on the forum - you are just great.

Bye for now.

[Solna]

Can someone explain the DSNS method please!

[PMRpro Ambassador in reply to Solna]

healthunlocked.com/pmrgcauk...

all there, just click on the link.

[Lafontainepam1]

Charlie, I have been struggling with the 5mg and below. I had gotten down to 1mg at one time but at the moment I am one day 5, the next 4! I have been on Pred. For 4 years and my Dr. Wants me to work harder at getting off. He wanted to mix another med but after looking up side effects I decided to try to alternate this time. It's a wicked process and not easy on you at all. Please go slow!

[Charlie1boy in reply to Lafontainepam1]

Hi!

Thanks for your reply. I promise I will be going slow!!

[DeliaGray]

I reduced from 10 mg after a month to 9 mg. Did fine, I then reduced after month to 8 mg. I am now in severe pain again in my shoulders, feel very lethargic and ache all over. I went back to 10 mg 3 days ago and seeing a little improvement but not much. I hesitate to go up further as it has taken me almost 2 years to get to 10 and I had not problems at 10. I have pmr/gca. NO GCA symptoms have returned. How long does it take when raising the dose again before I notice a marked change? Thanks all of you for this site.

[poppetpain]

Hi Delia. Like you and the others who have posted I'm struggling to reduce. Got to 10mg in March then tried in july with alternate days with 9.5 and 10. No good so back to 10. Tried DSAS in Aug but am back to 10mg again. Saw rheumy today. She says that my ESR is only 5 so I really must try harder and bite the bullet and take pain killers to get over adjustment. She has given me some blood forms so that I can have my bloods done if pain is worrying me but must carry on reducing if my ESR remains low. I feel really confused again but am spending a week at my son's in France soon so will wait till I get home to decide what to do. BTW I took some NW news letters, the DSAS plan and the Bristol plan in for my rheumy today. She wasn't interested but the trainee doctor was and said he'd look up this site. Rotten place for us to be but helps knowing there's company on the journey. I visited my NW PMR support group a few weeks back and it was wonderful. Wish there was one every week. xx

[SusieQQ]

Hello,

I'd like to join the 10 to 9 Club!

Effortlessly reduced from 15mg to 10mg since July.

Rheumy wrote out a tapering scheme for me to drop 1mg per month thereafter. Tried last week to drop from 10mg to 9mg but after 2 days all the old pains came back again. So, I went back to 10mg which took the pain away.

I am now following the DSNS regime.

I do wish all Rheumys would pay attention to the experience and expertise of the volunteers on this site!

SQQ

[Charlie1boy in reply to SusieQQ]

With so many of us having problems in tapering down from 10mg, I ask myself "Why is this happening?". Has there been any research at all in this area? Probably not, I guess, as there is relatively little research anyway on pmr.

But, there must be a lot of information out there with the experience of all of us going (or having gone through) this problem.

[Lafontainepam1 in reply to SusieQQ]

Please go slow, I am doing a reduction from 5 to 4. So you may try this for awhile 10-9. So far it's working for me, I have been at it going on my third week, so will do more 4mg days than 5 this week. Slow, very, very slow is the key!!!

[SusieQQ]

Thank you.

The DSNS plan does seem to be working