Feeling good

It's a year since my PMR morphed into GCA overnight with scary visual symptoms as well as a tender scalp. 60mg of Pred sent me round the bend mentally and I was just horribly, horribly ill. In that first 9 months of exhaustion, sweats, hideous weight gain and general bonkerdom I could not see any light at the end of the tunnel. Well, it's nice to report that I am back in daylight again. I had a hip replacement last week because I'm finally down to 10mgs Pred and MTX. The exhaustion has gone. The sweats are better. Even 6 days post op I am walking without sticks (I know - I should take it slowly) and life is worth living again after a really tough year. I suppose I am saying hang on in there to all of us on high dose steroids - it does get better and this forum has been a great comfort and source of good info.

[tomasina]

Well done saxjody. You have done very well, and good luck with your recovery from your surgery. I am happy for you. Just don't go too mad, take care.

All good wishes

Tomasina x

[PMRpro Ambassador]

It is good to hear the better sides of PMR/GCA! It is easy for those of us who have seen many such improvements to say it - but real experiences being posted are the proof!

Long may it all last and get even better!

[Badgergirl]

This is good news Saxjody. Thanks for sharing. It goes to show there IS light at the end of the tunnel. Fantastic that your surgery has gone so well too. Take care x

[venezia1]

So encouraging to hear your good news! I am also trying to reach the 10mg target for double hip replacement, overdue by a year now, but am still only on 14mg pred. Did you use any particular steroid-sparing meds? I have just had to come off Azathioprine and am wondering what they will try next....so great to hear you were up and about so soon, too. Well done!

[Hidden in reply to venezia1]

My sympathies for the long wait. I got chucked off the NHS waiting list twice while I was on high dose steroids and ended up paying for the operation myself but it is the best money I've ever spent. This is my second hip so I know what a fabulous operation it can be. Last time I got back to playing competition racketball. I was put on methotrexate as a steroid sparer. I honestly don't know if it has changed anything. Sometimes I forget it and nothing disastrous happens. In the end, my life got so restricted by my hip that I would have done it at 14mgs anyway. Good luck and modern surgery is unbelievably good.

[PMRpro Ambassador in reply to venezia1]

How do you reduce venezia? If the drops are too big many people struggle and I have posted a way of reducing spreading 1mg drops over several weeks which has worked for me to get below 9mg for the first time ever, I'm now at 4mg, and has worked for quite few others too. Another version is being used by a lot of others and a consultant in the NE is also using it - all with success.

Here is mine again if you are interested:

A group of us worked out reduction schemes individually that have allowed us to reduce far further than ever before but they are all basically the same - and they were based on a scheme a Swedish gentleman worked out when he simply couldn't get below 3mg without pain. Img at that level is 33%, 1/2mg is 17% - way above the 10% that has been recommended for years. So he used a table to see the daily doses and took the new dose on one day, old dose for a few days and then proceeded by repeating that and then reducing the number of days of old dose - until he got to everyday new dose. It worked, he got off pred and has been off pred for at least 3 years (it could be longer). Something similar to mine is being tried by a consultant rheumatologist in the north of England and he too finds it works for every single patient he has given it to, as it have done for several ladies beforehand.

My reductions are VERY slow. I use the following pattern to reduce each 1mg:

1 day new dose, 6 days old dose

1 day new dose, 5 days old dose

1 day new dose, 4 days old dose

1 day new dose, 3 days old dose

1 day new dose, 2 days old dose

1 day new dose, 1 day old dose

1 day old dose, 2 days new dose

1 day old dose, 3 days new dose

1 day old dose, 4 days new dose

1 day old dose, 5 days new dose

1 day old dose, 6 days new dose

By that stage if I feel OK I feel safe to go all new dose. I suppose you might be OK starting and stopping at "1 day new, 4 days old" but I was terribly sensitive to steroid withdrawal pain so I err on the safe side. Once you get to the "everyday new dose" - if you feel OK you can start on the next reduction, no real need to spend a month at the new dose.

This avoids steroid withdrawal pain - which is so similar to PMR pain that you often can't tell which is which and some of us suspect that many flares are NOT the PMR returning but problems with steroid withdrawal. Using a scheme like this also means you can stop immediately if you have any problems - you might be fine at one day old dose, 2 days new (lower) dose but not at a 3 day gap - but you have dropped your dose a lot and that is the idea. It also isn't as slow as you would think - you can reduce at a rate of about 1mg/month on a continual basis.

The Bristol group starts new patients with PMR with 6 weeks 15mg, 6 weeks at 12.5mg and then a year at 10mg before continuing the reduction and that achieves a far lower rate of flare (20% instead of 60%). I suspect their flares then come below 10mg as they do the 1mg at a time reduction. Just below 10mg is a common dose for people to get stuck at - and I (and others) believe it is because even 10% drops are too much for many patients. These patients are then labelled as "steroid resistant" or told they need methotrexate to help them reduce but we have seen this slow reduction work for those patients too. We believe that methotrexate (MTX) works for patients who have late onset rheumatoid arthritis (LORA) or LORA and PMR together. Very few patients get off pred altogether when taking the MTX – we suspect those who do are probably the mis-diagnosed LORA patients - or another arthritis that responds to MTX.

This reduction scheme is being used by quite a few members of the PMR/GCA UK forums (both of them) and the feedback to date has been good: people are being able to reduce without discomfort so they have stopped worrying about “flares” which probably also contributes to their well-being.

[venezia1 in reply to PMRpro]

Hi PMRPro - thanks for your reply.

I have tried what I thought what your slow reduction plan, when I was on 15mg. (I have RA, GCA and SJogren's). I worked over seven days - one day new dose, 6 days old dose, 2 days new dose, 5 days old dose etc, trying to spread them as evenly as possible. When I got to 6 days new dose the GCA symptoms - head pain, jaw pain, tender scalp etc, came back with a vengeance, s o I went back to 15mg. then I was taken off methotrexate and put on Azathiprine, which after a few days was unliveable with - vomiting and nausea, so am now off them too, But I did manage to drop to 14mg successfully while I was on it, so not entirely a waste of time! I'm wondering if I didn't understand your regime properly - do you discount doing it over the week and just continue the pattern? I'm thinking I might try 13.5 the slow way, but would like to be sure I'm doing it right!

venezia1

[PMRpro Ambassador in reply to venezia1]

No, as I understand you, not quite.

One day new dose, 7 days old dose

1 day new dose, 6 days old dose

1 day new dose, 5 days old dose

1 day new dose, 4 days old dose

1 day new dose, 3 days old dose

1 day new dose, 2 days old dose

1 day new dose, 1 day old dose

Once you are at the alternate days you start to build up the new dose:

1 day old dose, 2 days new dose

1 day old dose, 3 days new dose

1 day old dose, 4 days new dose

1 day old dose, 5 days new dose

1 day old dose, 6 days new dose.

If you get that far - you can probably manage all new dose.

It sounds slow but it is possible to drop whatever you choose as your difference every month and it is possible to vary that difference: 1/2mg, 1mg, 2.5mg - it just depends how sensitive you are to that drop.

But how long have you been since diagnosis venezia? Being at 20mg after 6 months is fine and if it was GCA you were diagnosed with then taking longer than that to reduce is also quite reasonable. The most recent basic research has shown that the probable causes of GCA are still active after 6 months at above 20mg. The likelihood is that even longer at 20mg is a good thing. It may sound disappointing, but in the great scheme of things, a bit longer at 15mg is not bad. Unfortunately, the rheumies don't always see it that way!

[venezia1 in reply to PMRpro]

Thanks, PMRpro - that clarifies things a lot!

I was diagnosed with RA five years ago and GCA 2 and a half years ago, starting dose of pred 80mg. It was dropped to 60mg quite quickly, but then seemed to be left at that for a while. Gradually started tapering again last year, but it was only when I had an initial consultation for my hip replacements, when I was told the surgeon would not operate above 10mg, that I started to concentrate on a speedier drop, only to stick at 15mg. Now I'm on 14mg and will follow your schedule after a visitor has left next week - thank you again!