Reducing medication

[tourdefrance]

Am currently on 8mg pred and the rheumy wants me to come down 1mg every 4 weeks. ESR has been 2 for last 7 months. However, just going to 7mg and my body is racked with pain that I can't control and is debilitating to say the least. Gone back up to 8. I am told I have arthritis just about everywhere now which is causing the pain. Has anyone had similar issues and what is the answer. I no longer understand my own body. Can no longer see light at end of tunnel!!! Help appreciated. Thank you

[polkadotcom]

What kind of arthritis have you been diagnosed with? If it is osteoarthritis it is a whole different kettle of fish to PMR/GCA, if it is an autoimmune inflammatory type they should be offering different medications?

If this has made you sensitive to steroid reductions, then the very slow reduction plan would seem to be the best, it won't please your Rheumy if they are adamant on the 1mg a month reduction as it is slower than that, but you may be able to reduce more successfully.

I have severe osteoarthritis but the pain from that is totally different to the PMR/GCA pain and Fibromyalgia is different again. Perhaps you can get more details on the conditions you have and go from there?

[piglette in reply to polkadotcom]

In fact going slowly can actually be as fast and a lot less painful than having to go back to a higher dosage all the time.

My rheumy used to think I had pain because I had been gardening or carrying shopping, not the fact that he wanted me to cut down too fast. He seemed totally unaware that it is a different sort of pain.

[tourdefrance in reply to polkadotcom]

thank you for your quick reply. It appears I have osteoarthritis in hands and feet and degenerative osteoarthritis in the lower back and knees. My failure is to understand why I went from an incredibly fit 59 year old one day, to a PMR sufferer the next, then 6.5 years later my body is racked with pain if I go below 8mg steroids....which doesn't actually mask the pain much anyway. Everyday is a pain filled one with absolutely horrendous pain passing through my pelvic girdle a few times per day. I no longer feel I am getting better. My doctor is excellent, but I think I need someone with a magic wand.

Moan over, thank you all for listening. Pull myself together now and get on with it.

[polkadotcom in reply to tourdefrance]

The onset of mine was much slower, I deteriorated over a number of years from my early 50's onwards, finally diagnosed at 57. I wouldn't say I was incredibly fit to start with, but I was a dancer and a gym bunny until I couldn't cope with it any more.

I feel that given your description you could do with a medical rethink. If 8mg Pred a day is not helping, then you either need more to stamp out the inflammation which causes the pain or you have something else going on apart from the OA. Perhaps going back to the drawing board would make a fresh start? If you are still on steroids with no improvement then you are in a rather a negative place - you are getting what side effects you have at that dose but without any benefit.

There isn't really much that can be done about OA and it is usually outside the remit of a Rheumatologist, being GP managed. GP's tend to offer painkillers and physio, but I have had cortisone injections into the joint which have worked well for me.

I do hope some of this helps, please let us know how you get on.

[PMRpro Ambassador]

Polkadotcom referred to the very slow reduction plan. One should be able to find it on here but I can't work out how so here is a reprise:

"You could try spreading the 1mg reduction over a longer time - that is, don't try to go from 8mg every day to 7mg every day overnight. I am also very sensitive to reducing the dose and tried this:

"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 did 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."

Quite a few other people on this forum have tried it successfully as well. It should mean you can tell the difference between steroid withdrawal pain and the PMR returning."

[pennyw Administrator PMRGCAuk team member in reply to PMRpro]

This is what I do and it has worked well for me. I like the way PMRpro the group has simplified the process. Must print that out for my support group members!

Despite my rheumatologist feeling I was doing well on my last visit about six weeks ago and writing to my GP surgery to let them know the GP I saw repeated half a dozen times (with the letter in front of her on the computer screen) that 'they' liked patients to reduce at least every six weeks. I just smiled. I have no intention of changing what is working well for me. Down to 3.5 on 1 day new dose 4 days old dose.

[Thomas45]

I've used the above method to reduce my dose gradually. I have only enteric coated tablets, which are only available in 2.5mg and 5mg. Currently I take 7.5mg on Thursdays and Sundays and 10mg the rest of the week - about 9.4mg average for the week. Soon I'll take 3 days at 7,5mg and 4 at 10mgs, average of just under 9mg a day. I am taking it very gradually. The only 'flare' is an ache in the front of my thigh muscle, especially on my right leg, which is probably caused by an unrelated problem on that knee (patellofemerol syndrome which is caused by my driving position over the last 45 years of driving - I have extremely long legs).

[jinasc]

Osteporosis:

Visit the ARC site and read up on Flexiseq. arthritisresearchuk.org/sys... - click on the Read More.

I have tried it and it is brilliant and what is best about it is that it is not a drug, so no side effects etc.

I would not be without it and use it everyday.