Reducing too fast?

[GinnyMa]

Have been diagnosed in June with GCA and started with 60 mg prednisone. I was down to 20 mg and then went to 15 mg. when I decided that I had reduced too fast. I had to go back up to a higher dose of prednisone, how long should I stay there before trying to reduce at a slower rate?

[olive2709]

Slow down girl my GCA is 50 weeks old tomorrow I started on 40mg on 1mg this week never go down more then 10% at a time stay were you are I would say 4 weeks at least

[DorsetLady PMRGCAuk volunteer]

Hi GinnyMa,

As Olive says your reduction has been much too fast, I presume your doctor has been overseeing this process. Unfortunately lots of medical personnel don't appreciate the problems a quick reduction can cause.

You don't say what level you have gone back up to, but you need to ensure that the inflammation is properly under control before you even think of reducing again. I would suggest three or four weeks, then slowly, remembering the not more than 10% mantra, which means once you get to single figures by 0.5mg drops. It might also be worth considering a very slow tapering plan, there are several recommended, or devise your own rather than tapering overnight. Much more user friendly, and you can easily rectify any suspected flares.

Remember you are not racing to get off steroids, but aiming to keep your GCA under control. Good luck

[Hidden in reply to DorsetLady]

Just to compare- I was diagnosed GCA in July 2013-2 years ago- and have gone from 60mgs to 6 mgs in all that time. I never reduce unless I am really settled and the pain is manageable on the new dose. As a result I have had no flare ups but it is a very slow process. I learnt this the hard way by rushing down to 1mg with my PMR and then getting GCA :(. Learn from our mistakes. Take your time. the whole idea is to be able to live and function in the here and now - not to get off steroids. Xx

[PMRpro Ambassador]

Who made the diagnosis and who is managing you - a specialist or a GP? What were your symptoms and have any of them returned as you have galloped down these doses? Why did you suddenly decide it was too fast at 15mg and what have you gone back to?

One of the standard texts we refer to on the forums is this paper:

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

"Our approach to the diagnosis and management of PMR and GCA" by Quick and Kirwan, which they wrote for presentation to a meeting of GP in Edinburgh a few years ago. It is intended to help GPs do this without necessarily having to involve a rheumatologist although GCA does really belong in the hands of an expert - and since it is likely that many GPs have never seen a case much less managed one that is a perfectly reasonable approach.

Their reduction scheme for GCA starting at 60mg takes the patient down 10mg at a time to 20mg, remaining at each dose for a MONTH, a total of 5 months. Only then do they proceed to 15mg and then they follow the same protocol they use for PMR, aiming for zero pred in another 2 years. You have attempted the same reduction in 2 months not 5 months. If the symptoms have not returned that may be fine and you were either one of the very lucky people or it is something at the PMR end of the scale rather than GCA.

You can have GCA without it affecting your vision and it is the risk to sight that is the trigger for the high doses to start with. If that is the case for you and the GCA-type symptoms were like mine, which disappeared completely at 15mg, then the idea of returning to a reduction is fair enough - but I think we need to know the answers to my questions above before we can make any other comments than what the others have already said.

It isn't a race to get off pred. It is a steady journey, keeping symptom-free as far as possible, until we are down to a very low dose. If you do it too fast or in too big bites you run the risk of a flare and needing to go back to the very high doses to manage the inflammation. Do that too often, get into a yo-yo situation and it can become increasingly difficult. Not reducing by more than 10% at a time is a very basic rule - and many people can't even manage that without problems which is what led to the development of the "Dead slow and nearly stop" reduction plan.

[GinnyMa in reply to PMRpro]

Am so glad to have found this forum, as I have felt alone in this. I will start at the beginning. I live in the US and am a 74 year old female. All spring I felt a tingling in the right side of my face, sore right ear, tender teeth...sinus?..allergies?.....then I developed a slight headache around the top of my head, felt nauseous, and lost weight. I don’t get headaches, so I consulted my GP. He prescribed Ibuprofen for the headaches. There was no improvement. My blood work showed a SED rate of 26.

A few weeks later, I felt that the veins on both sides of my head seemed swollen and tender to touch. I had a headache upon waking up in the morning, jaw joints were sore, eyes heavy, very tired. I could hardly open my mouth wider than one finger width. I went back to my GP and he felt the veins and agreed they seemed swollen. He thought for awhile and said there was something called temporal arteritis, but it was rare. He thought it was TMJ and referred me to my dentist, who then sent me to an orthodontist. He diagnosed TMJ and I was given a bite plate and instructions on how to retrain my muscles to stop the clenching. My blood work came back with a SED rate of 76.

Two weeks later I developed a shooting pain up the back side of my head on the right side. it became more and more frequent and I could not sleep as the pain when my head touched the pillow was unbearable. So I tried sleeping in a chair. No sleep for 3 nights. The pain was excruciating. I called the orthodontist, in desperation. He said that was not a symptom of TMJ and see my doctor right away. I went to my GP in the afternoon. and he listened and gave me a prescription so I could get a night’s sleep. When I got home there was a message on my machine that my GP had set up an appointment with a rheumatologist for 9 in the morning. I kept the appointment and the rheumatologist used an instrument to listen to the artery around the top of my head and said the pulse was very weak. He told me he suspected GCA (and that I probably did not have TMJ also) , and sent me to the pharmacy and told me to take the prednisone as soon as I got it. The prescription for prednisone was ready. Within hours of taking the prednisone I was totally pain free. The diagnosis was confirmed by a positive Temporal Artery Biopsy.

He put me on 60 mg for one week, then 50 for one week. My blood work after one week, he called excellent. My Sed Rate was 8 and C-Reactive Protein was less than 10. He put me on 40 mg, then 30 mg, then 20 mg for two weeks each. No GCA symptoms or headaches at all, only the usual side effects of prednisone. His next advice was 15 mg, 12.5 mg, 10 mg, for two weeks each and then continue the 10 till our next appointment. When I went to 15, by the third day I felt the tingling again on the right side of my face. I went back up to 20 mg.

In the meantime, I should mention that I have had the cataracts removed from both eyes this past year. I have checked back with my Ophthalmologist to inform him of the GCA and he checked my eyes and said all looked fine.

In a week I am headed for a vacation to Italy. After reading the advice in the forums I see that people take charge of their own rate of tapering. I will d the same. I think I will stay at 20 mg until I come back at least.

[PMRpro Ambassador in reply to GinnyMa]

You had a positive TAB - so it is definitely GCA, no-one can argue with that. Ever - and that is a very helpful fact so make sure you keep the evidence!

I wonder why the concept something is rare seems to mean to many doctors that your patient doesn't have it despite being pretty much a textbook presentation?

Of course your blood work after a week at a high dose of pred was excellent - it was being kept there by the pred! However, if you are lucky you will continue to manage with a dose of 20mg/day and will have avoided a long time at the higher doses.

A study done in London and Southend in the south of England a couple of years ago showed that there is still evidence of GCA activity even after 6 months of treatment with high dose pred - high dose means over 20mg. Bearing that in mind I would hope that your rheumy will allow you to remain at 20mg for some months, without encouraging you to try lower doses. The risk always is that the inflammation will flare up if the dose isn't enough - and may do so to a degree that is difficult to get back under control. Once you yoyo the dose it seems to be more difficult to get under control again.

In particular, since you are planning to travel "over here" do keep a very close eye on any of your symptoms. Get copies of your notes and the result of the TAB if you can and ask your doctor to provide you with not only sufficient pred to cover 20mg/day for the whole time but also a significant stock "just in case". Prednisone is not available here where I live in Italy (certainly not in South Tirol) except in the form of Lodotra (Rayos to you) and Medrol is the normal form of steroid used. It may be different further south but I don't know for sure. They wouldn't use Lodotra for the high doses needed for GCA, it costs a fortune!

However - rest assured, the medical system here is excellent so if you do find symptoms returning you will be fine.

Do also ask your doctor what he suggests for dealing with the time you take your dose with the change in time. I only have PMR so it is far less critical when I take my pred and I take a slightly higher dose for the "long 24 hours" travelling east-west and my normal dose for the short day going west-east and then take it first thing in the morning as usual which works well for me. I don't know if that will work well enough with GCA.

Be ready to take a rest - are you travelling alone or with a tour? I have just spent 3 weeks in China with a 2 week tour to start with - and it was an EXTREMELY demanding timetable. Do be prepared for possibly missing part of a tour to have a rest and don't feel you must keep up with everyone else - I had to accompany the tour every day because we went out in the morning and didn't get back until late afternoon, sometimes to a totally different place, but if there was a "photo opportunity/look round on your own" I often just found somewhere to sit rather than do a protracted hike around the sight. My husband and I and another lady became famous for finding the nearest source of a beer...

Where are you from in the US and where are you going in Italy?

[GinnyMa in reply to PMRpro]

Thank you PMR Pro for very good suggestions regarding travel. I had not thought of a few of them and I will follow your advice. I am particularly concerned about the time to take the prednisone. Here I take it at 8am as they say it is the best time to not interfere with sleep...I have not found it so...with the 6 hour time difference what will I find?

I am from the Boston area in Massachusetts and will travel with Road Scholar to the Cinque Terra. I have traveled with them before and they "take good care of you when needed".

My rheumatologist is very young. He told me in his first year he only saw one case of GCA and this year there have been three in the past month...an epidemic!! He will be agreeable to me following my own timetable for tapering and after all I read, I will proceed more slowly. I am worried about side effects of the drug, but have already told him I will not take Fosemax, a drug I believe you call AA. I have become very strict with myself, counting mg of calcium consumed, continuing with my daily walks, taking naps to compensate for early waking up after only five hours of sleep. Hope it all helps as I need to feel some semblance of control over my life.

[PMRpro Ambassador in reply to GinnyMa]

The reason for taking it at 8am is less it not interfering with sleep (if it is going to stop you sleeping it probably doesn't make much difference when you take it!) than that that was perceived to be a good time to mimic the normal production of cortisol by the adrenal glands - pred is just an artificial version of that.

Many take it as early as possible when they wake with perhaps a sandwich or yoghourt they took to bed with them. Then they settle down again until it is really time to get up. One lady has just tried that, taking it at 4am and then sleeping until 8am - and said not only was she far less stiff in the morning but she also had the most sleep she has had since starting pred!

I never have problems with jet lag - I leave that to my husband - so really shifting my dose a bit made little difference to me but I am now on a low dose anyway.

I do hope you enjoy Cinque Terre. I am off to Lake Iseo (3 hours drive directly north of where you are going) tomorrow and am hoping for good weather to recover from our rather hectic summer so far - and for my husband to get on with the work he now has to get done in the next few weeks! I haven't been to Cinque Terre yet - PMR got a bit in the way! Next year maybe - I think I could manage it now after the China trip!

And do offer your lovely young rheumy the paper I gave you the link for - all useful info from a rheumy who is VERY experienced with GCA .