Opinions on this taper plan suggested by my rheumy for GCA diagnosed 17 th may 2019

[Purpleprimrose]

prednisalone at 50 mg. a day to reduce by 5 mg every week down to 10 mg a day and thereafter by 1 mg for 3 weeks at a time until finished

Steroid side effects are very trembling legs and difficulty using the stairs as knees and leg muscles very weak , also have just started with swollen ankles

feel really weak ,also putting on weight but trying to keep active .

So far have got to 20mg but feel extremely tired

Have also reduced dose of amatripylin from 30 mg to 10 mg gradually

Sorry found I had put in wrong information , have now corrected

[jinasc]

Hi there, I took a look at your profile but it does not tell me, when diagnosed and if you were diagnosed with both PMR and GCA or just GCA.

The golden rule is no more than 10% at a time.

Others with GCA will be along and that information I have asked for would help us to answer your question.

[Purpleprimrose in reply to jinasc]

Sorry I’m a newbie and haven’t sorted out what I should be entering and where ? Thankyou for your reply

[SnazzyD]

For GCA that’s quite a lick! By that you ‘should’ have got to 40mg by the end of May and be much lower by now. What made you go slower? Symptoms or just concern? Just for comparison it took me 9/10 months to get to 10mg and I had no flares.

40mg is a fairly hefty dose still and I wouldn’t expect you to feel great. The trouble is the effects accumulate as well so weakness and wobblies sounds par for the course. I could barely function on 40mg at the age of 54. What did help some was eating high potassium foods and taking a magnesium supplement, without which it was worse. The Pred causes loss of both these nutrients essential for muscle function. The other thing to watch is salt because Pred makes you retain sodium and hence bloating from fluid retention. I could have almost none without a big effect. Re the weight, I didn’t put any on by cutting out all potato, rice, pasta, flours, sugar and maize. I was barely able to exercise other than a short walk at 40mg which I was on for 6 weeks. I increased protein to help counter the muscle loss and filled up on loads of veg and fruit especially berries. Pud was a couple of squares of 85% choc a day and two glasses of wine per week. I wanted to avoid the risk of diabetes and being overweight would have caused misery for me but it wasn’t always easy and I had many tears as Pred gave me huge hunger. So glad I did now though.

[Purpleprimrose in reply to SnazzyD]

Sorry I had entered some information incorrectly ,think it’s right now

[jinasc in reply to Purpleprimrose]

Do not apologise for not filling in your public profile. When anyone joins a site they have to make a decision as to what they want to share. I asked because I could not help you without those facts. I knew if you put them in, others would be along to help you knowing, the who, why and what.

Never feel you cannot ask the daftest question, we have all been there, done it, got the T-shirt etc.

Looking at your profile and the replies from people who have had GCA or are very experienced, I have only one thing to add:-

I would be looking for another Consultant. If you let us know where you live, (ie Surrey and willing to travel about 1 hour etc) we can perhaps recommend a Consultant for you who knows about GCA.

Your sight is precious.

PS: It took me 18 months and two flares before I got stable on 20mg. I had an excellent Rheumatologist.

[Blearyeyed in reply to jinasc]

Great advice

[DorsetLady PMRGCAuk volunteer]

Opinion - to be brutally honest - pretty rubbish really!

5mg a week is too quick - it doesn’t give you chance to know if the dose you are currently on is sufficient to control symptoms before you reduce. When that happens you are likely to go below the level you ACTUALLY need - and then end up with a return of your pains and having to increase the Pred to get control of the inflammation all over again.

5mg in itself is okay until you get down to maybe 30mg - but it needs to be every 3 or 4 weeks - not every week. Then preferably 2.5mg until you reach 15mg. Longer term - from 15mg by 1mg to 10mg, then 0.5mg a time hopefully to zero is much more a realistic target.

Your Rheumy nor you may like that scenario, but it’s much more realistic and achievable, which I fear his is not!

If he thinks you are going to be off the medication with a year then he doesn’t know much about GCA or he’s a magician. The majority of “official” tapers show at least two years, and even they recognise that flares are likely within that timeframe.

Your aim is to find the LOWEST level that controls your symptoms, not reducing ruthlessly to zero!

[Purpleprimrose in reply to DorsetLady]

Thankyou so much for all that information . I really appreciate it ,

I will be seeing a different Rheumy in 3 days time so interesting to see what he suggests .

Probably ignore both and follow yours !

[DorsetLady PMRGCAuk volunteer in reply to Purpleprimrose]

I don’t know why but even some of the best Rheumies seem to have a bit of a blind spot with regard to tapering. We know they don’t want us on Pred longer than necessary, but then neither do we!

But if the plans they give aren’t realistic, and then the patient ends up thinking it’s their fault because they can’t reduce as fast as they think they should. And that’s not fair!

Better luck with new one!

[PMRpro Ambassador]

Welcome!

I doubt you will get to zero at that rate in that time - GCA is a chronic illness and usually lasts at least a couple of years and in my experience of 10 years on forums it is more like 4 to 5 years. I think DorsetLady has summed it up pretty well!!

I know it isn't what either your or your (I can only imagine obviously inexperienced) rheumy want but we all feel a touch of realism is better: it is extremely depressing to get to a lower dose to meet a flare because you have reduced too fast and have to go back to a much higher dose again. It won't be your fault but you will be the one who suffers it.

This is a much more realistic approach:

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

but one thing to be noted is that all the "official" suggestions in the medical literature do say "must be tailored to the individual patient and their return of symptoms" or words to that effect. Too many doctors appear to be unable to read though.

[Blearyeyed]

Listen to the advice above and keep dropping in for more help and support with this as you go along and you won't go far wrong.

It's a learning curve and having the right , supportive medical help from someone whom works with you , not just from the " GCA/PMR play sheet" will make you feel more confident and coping much easier.