Brassedoff

[Brassedoff]

I have had to go back up to 15mg steroids, on 15mg before I was fine then Dr reduced it to 10mg the awful pain stayed away but my shoulders ached like mad so I am back on 15mg for a week then go to 11mg, so fingers crossed, I know you have to reduce as soon as possible and it is trial and error, what works for one doesn't for another.

[polkadotcom]

For most people reducing from 15mg to 10mg is much too big a jump. Current guidelines state that the maximum drop at any one time should be no more than 10%. So from 15mg the drop should have been no more than 1.5mg.

If your doctor continues to try and reduce your steroids at this rate, it will very likely lead to yo-yo dosing, where in the end the top dose able to contain the inflammation will be more than the dose you first started on which is not a situation anyone wants.

You say 'you have to reduce as soon as possible' - quite right, but that means as soon as possible for you, your body and your circumstances. It isn't a race, but a management of symptoms making sure that the inflammation is kept under reasonable control while allowing you some quality of life.

It seems to me that your doctor is trying to treat PMR as a short term condition (s/he would be familiar with using steroids to treat asthma attacks and chest infections in this way) but PMR is a long term condition requiring long term managed treatment.

Have a look round on the site and read some of the medical information here.

Catie

[DorsetLady PMRGCAuk volunteer]

Hi Brassedoff,

Quite agree with polkadotcom, you need to go steady once you get down to 15mg. I started on 80mg April last year (GCA/PMR) got down to 15mg by November relatively easily, but I knew from reading others blogs that 15mg seems to be a milestone.

I have dropped by only 1mg per reduction since then. Eight weeks at 15mg, then four weeks at 14mg, another four weeks at 13mg. Have been on 12mg for the last nine weeks because my ESR levels went up for no apparent reason. My GP was concerned because I have already lost sight in one eye due to a mis-diagnosis by her. I am hoping they are now showing a more realistic reading, think they were artificially low before. Are being tested again on 20 May, but at the moment I feel really good, so I shall keep the reductions to 1mg stages from now on. All the advice shows this is the way to go.

If you have't already would suggest you get copy of guidelines for diagnosis and management of PMR, easily accessible on web, and show your GP. Best of luck. Dorset Lady.

[iforget]

I was told to drop from 15mg to 10mg too and it was horrendous. I was in so much pain I couldn't bear it and after a week of suffering (I was hoping things would settle) I had to take the dose back up again...but I negotiated a midway rise to 12.5mg rather than back to 15mg and it certainly helped take the sting out of things.

Almost two weeks ago I dropped from 12.5mg to 10mg and again it was not pleasant. Things have settled somewhat and it is bearable so I am sticking with it but I plan to negotiate any future drops.

I want off the pred asap but I can't bear weeks of pain and restricted movement at every drop and nor do I want to be yo-yo- ing between doses.

I hope you find a reduction regime that works for you.

[55grove in reply to iforget]

Thank you for this. I have been reduced from 15 to 10mgs. I did it as an every other day routine as I found the first day of 10 too much to bear. I did this for 2 weeks and now reasonably happy with 10 each day.

Yes, I see Dr. Friday so will tell him and "negotiate" too. Well done.

[chubbycheeks]

I only ever reduce by 1/2mg and usually stay on the dose for 4-6 wks. I have successfully reduced to 3.5mg without any pain or flares.

[Celtic PMRGCAuk volunteer]

There seem to be several of you posting just recently of the problems you have experienced after being advised to reduce from 15 to 10mgs in one go.

I do hope your GPs are learning from you that this is not the way to go, and that the British Society of Rheumatologists' Guidelines state "Daily prednisolone 15mg for 3 weeks; then 12.5mg for 3 weeks; then 10mg for 4-6 weeks". It might help to print off a copy of the guidelines from the PMRGCAuk website and take it to the GPs in question, so that at least they don't put future PMR patients through the same unnecessary increased pain.

[Pipistrelle]

There are so many posts like this -- it is frankly, terribly frustrating to realise how little many doctors know or bother to find out about PMR before prescribing steroids and giving 'guidance' to patients -- arghhh! -- especially when the pain of the condition is so severe, and too-fast reductions bring back bad pain and can delay the process of lowering the dosage, which is terribly annoying for the patient.

It isn't really true that with PMR the goal is to reduce steroids as fast as possible (or at least -- that is not ever the priority). The starting dose is actually quite low anyway, and the goal is to adequately manage the pain and *gradually* reduce so we the patient, remains reasonably comfortable and moves steadily and carefully to lower doses *when appropriate*. I've yet to hear of any individual who could manage drops of 5mg at these lower levels or any faster than 2 weeks minimum (and slower, later on as the dosage goes below 10mg).

In any book, going from 15mg to 10 mg is a horrendously large reduction and almost certain to fail and cause pain to recur -- and force the patient back up to a higher dose for longer.

GPs and specialists can easily access the professional guidelines from the national rheumatology bodies in the UK and US --widely available on the internet. I wish more would take the time to do so.

OK rant over -- but truly -- it riles me to read of people suffering because told to reduce too fast or by too much; or placed on very high initial doses ff steroids rather than the recommended 15mg more or less, etc.

Best of luck on the slower reductions, which should go better -- and get your doctor to read the recommended treatment guide!

[iforget]

In my case it was the rheumatologist who set the reduction rather than my GP... and it is him I see and I will be negotiating the next drop. If I am unhappy with his instructions I will talk to my very sensible GP about finding a way to manage this.; It is clear that communication needs to be better.

[Brassedoff]

Thank you all for your helpful advice, I think I will copy them all and take to my GP, just in case he is new this illness, I wonder if the dreadful pain I have in my lower back is all connected to this, also should I be working my butt off, or taking it a bit easy, they tell you nothing, hey ho, what's new.

[Celtic PMRGCAuk volunteer]

Hi Brassedoff

Good Heavens, no, you should definitely not be "working your butt off". You need to take it not just a "bit" easy but a lot easy to give the steroids the best chance to do their job of getting control of the inflammation that is causing all your pain.

Yes the lower back is generally one of the main sites of pain in PMR which can generate all around the pelvic girdle. Because I have had a slippage of my spine for many years, when I suffered the first symptoms of PMR, before diagnosis, I was convinced that something had worsened in my spine because of the crippling pain in that area.

I do hope you feel better soon, but meanwhile give yourself lots of TLC and don't overdo things on a 'good' day, as PMR has a habit of coming back to bite on the next.

[Brassedoff]

Thank you Celtic, I will try to take it easy, thou there is so much to do, I don't think I do too bad for a 75 year old, but I must admit the pain in my back does hold up my chores.

[Brassedoff]

I have at last got a dr's appointment 10th June, had enough of dealing witha voice on the phone, I would like some answers, there has been no mention of another blood test, no card to say I am on steroids, that you are supposed to carry all the time and no mention of seeing a rheumatologist, I feel I have just been given tablets, and that is it, I have been told nothing, have any of you had the same treatment??

[iforget in reply to Brassedoff]

If you are on steroids for more than 3 weeks you should have a blue steroid treatment card. In theory you should be able to get one from your GP or local pharmacy but if neither have them (and mine did not) you can get them sent to you by post by sending an email request to [e-mail] They were really helpful and sent me a form in the post in a couple of days.

[iforget in reply to iforget]

Oops sorry can't see how to edit the posted comment... ...they did not send me a form (Duh!) I meant to say they sent me the blue card in the post in the couple of days...at no charge.