GCA Tapering Advice

[Snerd]

Hello All!

I am So grateful to be a part of this group, Actually I don’t know what I would do without it. Thank you each for your contributions! And sweetness.

I have had GCA since June 2020, and was placed on prednisone in mid July 2020. So it’s been almost 10 months now on prednisone. I began at 60 mg and I’m now down to 12.5 mg. I have a great GP And rheumatologist, though I have to press back on my rheumatologist not to taper me too quickly.

What I seek now is your advice and how to taper in the coming weeks and months. Doctor says to stay on 12.5 for two weeks and then go down to 11 mg for two weeks. I’m thinking this may be too quick. What is your advice when I get to 10 mg? Should I reduce 1 mg per month until I get to 5 mg and then .5 mg? I don’t wanna mess this up and I don’t want to have a flare and have to go back up again. I’m so tired of looking so ugly , And of having fat in all the wrong places, Plus all the other worries of being on prednisone. Believe me I am so grateful for the drug as it relieved my pain immediately and was a godsend. But I do want to eventually be off of it if possible.

Thank you for your advice!

[DorsetLady PMRGCAuk volunteer]

Hi,

Fairly quick so far, which is achievable with higher GCA doses, but you do need to slow up now....

from 14mg I reduced just 1mg a time (a month) until I reached 7mg then I changed to 0.5mg a time... around 7mg can be a tricky time, adrenals need to re-awaken and that can sometimes be a bit of an issue.

Would also suggest than from 7mg you start to use a slower tapering regime - this is just one example (it served me well), there are others -

healthunlocked.com/pmrgcauk...

You will find that the fat, and all the other issues with Pred recede as you get lower.

[Snerd in reply to DorsetLady]

So helpful! Thank you Dorset Lady. Exactly what I needed to hear

[SnazzyD]

Hi, I went for smoothing the curve and did 0.5mg per week to 10mg. Any funny business and I stopped and waited to make sure I was ok. After 10mg I 0.5mg every 4-6 weeks but slowed down to 6-8 weeks as adrenal insufficiency cut in below 8mg. Under 5mg it got easier as my adrenal glands started to wake up. Under 3mg I slowed to 0.5mg e dry 10-14 weeks or thereabouts. It was all quite changeable as it depended on how I was feeling, what was happening in my life etc. A good number of people hit 7.5mg and feel terrible probably because the adrenal glands need to kick in a bit but the dose is still too high for the feedback system to step in properly. As I got to 5mg I started to be a bit of improvement and by 3mg I was much better. I know you’re not there yet, but just thought I’d warn you just in case so that you don’t make huge plans without a plan B in place.

[Snerd in reply to SnazzyD]

Oh thank you Snazzy for your very detailed reply! I realize I really need to keep it slow. It is going to be Tough with my rheumatologist as I’ve already had it out with him once before. But I shall prevail. He is the sweetest guy, but young and needing to prove himself and doesn’t like to be questioned. He is not going to like it at all if I tell him I need to be on a particular dose for a lengthy time. Ah well........ he does keep very well track of me, having my blood done once a month and calling me once a month, so I am very grateful. I shall keep in mind your warning of possibly needing Plan B.

[SnazzyD in reply to Snerd]

I made myself unpopular with the docs which was unpleasant but I felt that I was doing what was right for me. I just said that I hadn’t had a flare so far, I was still reducing and I felt that going back up due to a flare was not an option. I also said my domestic situation wasn’t conducive to having bad withdrawal. They didn’t have much choice, and threats of awful Pred effects didn’t wash with me as I was making the choice. My reasoning was that Pred has a price and I am paying it now. However, I felt the price was better than that if I had flared. Needless to say, I didn’t enjoy my consultations and often went home crying because of the stress. All turned out good in the end!

[Thelmarina in reply to SnazzyD]

Thanks Snazzy, I found this really helpful too. I seem ok on 7.5 but have had two failed attempts at 7.0 with no luck. I have reduced slowly at .5mg at a time and only had a couple of minor flares. I shall persevere! 🌺

[PMRpro Ambassador in reply to Thelmarina]

Take a break for a bit though - that is your body saying it can't go lower yet. It is surprising how a few months without the bother of reducing can change things,

[Thelmarina in reply to PMRpro]

You are such a comfort with your wealth of experience and warmth. I’ll take your advice with a sense of relief. Thanks! xx

[SheffieldJane]

I strongly agree with the advice you have had so far. The dead slow nearly stop method of tapering worked for me, with approximately 4 weeks between drops of 0.5 after 10 mgs. I had to stop at 7 mgs for about a year, tentatively attempting a drop at intervals. Very low carb, low sugar diet and get walking - gradually increasing steps and briskness, will help the speed up the return to body normalcy. I have a Rheumatology, Physiotherapist now ,who is helping me with a series of exercises to strengthen my joints, muscles and improve my breathing technique . The slow careful taper will give your Adrenals time to recover their proper function. You are clearly not ugly - so stop those unhelpful thoughts!We are so lucky to have each other , I agree. 🌼

[Snerd in reply to SheffieldJane]

Tank you Jane, But the picture on my profile it was a year ago at least and there’s no way I would post a picture of me now. Really horrendous. Thank you for your advice. So very much appreciated

[PMRpro Ambassador]

The basic rule is not more than 10% of the current dose - so the drop to 11mg is just OK. But I'm more concerned about the 2 week gaps.

Have you tried cutting carbs drastically? It does work even with pred and I am losing at 15mg pred, slowly but I am losing the lockdown pounds ...

We ALL want to be off pred - but you will need what you need and it might not take you straight to zero. You will get there though - and probably sooner than many PMR patients!

[Snerd in reply to PMRpro]

Thank You Pro lady! I have been very slowly learning about carbs and what I can and can’t eat. I had gained 30 pounds. A complete pig, with a huge huge face. Recently I lost 12 pounds but I have gained a couple back. Yes I know I have to play the carb game It’s difficult, As I love bread, ice cream, etc. etc. but I must do it.

[PMRpro Ambassador in reply to Snerd]

You may be lucky and not have to cut it as much as me - and those lovely things are kept as a treat. Have you seen the recent discussion about Michael Mosely's Fast 800 diet? You can do that as every day for 8-10 weeks - but you can also incorporate it into the 5:2 approach where you stick to 800 calories for 2 non-consecutive days per week and eat relatively normally the rest of the week, It is slower but it still works. and that does allow sensible eating of bread.Luckily I really don't miss bread at all - and even luckier I don't live in Malta which has the best sourdough bread ever ... Icecream I restrict to one scoop from the best gelateria in the region - which isn't in the village

[Snerd]

I will check out the 800 and the five:2 approaches. Need to get on a good system. I am totally sedentary right now I need to get off my butt. I suffer from being out of breath all the time, and terrible fatigue, but that is probably much contributed to by my lack of activity. My skin is very thin and itchy, and my cheeks are often Red. My sweet doctor told me on the phone yesterday that this is just a bump in your road. Wow! That meant a lot to me. Because that is not how I have looked at this thing at all. It’s as if I have given up on myself. But I must take heart and take my life back . Thank you all! 💋💋💋

[Frewen1]

Reading all of this and totally with you, and was diagnosed a month after you. I had a double vision flare, had to go back up to 60mg, my advised reduction seems fast to me, and I now have methotrexate which I hate, as new delight is very weak-feeling, wobbly limbs. Force myself to walk daily. But... onwards, with huge gratitude to everyone here who reiterates their advice over and again..🙏💐

[Maltesemama]

Hi! It doesn’t sound like to me that your Doc is taking you down from pred too fast at all. I think because you’ve been in on it so long, that’s why he’s (or she) bringing you off so slowly. Because of wanting to be vaccinated I’ve got myself getting off faster. I understand the icky side effects, another reason to want to b off. Have good conversations with your Doc, see if you can cut back a bit faster, good luck!

[PMRpro Ambassador in reply to Maltesemama]

Since you don't appear to have GCA/PMR yourself but have taken pred for asthma in the past, you are perhaps unaware that the reduction of pred dose in our case is not with the aim of getting to zero as fast as possible. It is a titration of the dose to find the lowest effective dose for a more long term use over anything from 2 years up, with 4 to 5 years being a very common duration in GCA. longer in PMR.For us, reducing the dose too fast can result in a relapse - entailing a return to the high doses GCA requires to reduce the risk of loss of sight. Encouraging someone to reduce fast is a risky business in GCA/PMR - a relapse often makes it more difficult to get the inflammation back under control in this ongoing autoimmune disorder.

[Maltesemama in reply to PMRpro]

Thanks for responding. Yes you have different issues. I wish you all the best! Sounds like you are on a good program for your illness Good luck! Hugs 🤗