I was put on 15mg Pred in Dec. There was a significant improvement quite quickly. Following 4 weeks my symptoms had returned to some extent, though not as bad as they had been at the start of the treatment.
My doctor then reduced me to 12.5 mg and for the week following I have never felt so ill.
Shaking gall over, weakness in all muscles, coordination all to hell, confusion, brain fog, nightmares, Constant headaches.
I have put this down to partial withdrawl
The above symptoms have for the first time started to feel more settled from yesterday ( 5 days following the reduction ) Sadly however, the pain and stiffness in my neck, shoulders and mid to lower back, as well as in my hands has shown a worrying increase.
I still have 3 weeks at the reduced dose, so I guess I will just go with the flow for now. Still having trouble with eyes.
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Bridekirk
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Just looking back at your previous post - I thik it is quite clear that this dose is too low - and I still think that a starting dose of 15mg was not enough for you at this stage to clear the inflammation out. And when there is still some residual inflammation, you have no buffer at all to reduce the dose successfully.
Thanks PMRPro. I think you maybe right, but I suppose I have to stick it out until my next appt at the end of this month's. I will have had more blood tests by then.
My eyes don't focus too well, feel like they are bulging and my eyelids are not functioning correctly they need my fingers to open them at times and the muscles around the eyes feel a bit numb and lazy ...its hard to explain but it's taking too long for my eyes to focus on things
Didn't feel to bad this morning so went out for the first time in Almost a week but had to come home as started to feel awful again with dreadful palpitations and dizzinesd( I know this is to be expected ) plus my shoulders were aching badly and I was shaking and felt weak so I could barely hold my head up.
Get some eye drops for dry eyes - that can also cause that sort of eye problem.
I'm sorry - but these are ALL things that need to be reported to a doctor. The palpitations and dizziness are NOT to be expected and even if they are, they may result in other problems.
Tapering at this stage when your PMR was not really under control was probably the straw that broke the camels back. It’s probable that 15mg wasn’t ever enough from the start and the inflammation has had a chance to build up. And maybe you have been trying to do too much because you felt a bit better. PMR is uncompromising and will quickly remind you if you try and beat it into submission, and even this cold weather can be a challenge to your system.
If you get a chance to get to a pharmacy you might get advice about the right drops for your eyes, and a warm flannel laid gently over them might help. And get hold of the doctor.
Thanks Zebrdee I think you are probably right on all counts. I now have some drops for my eyes and will see what that does. As for the pain, it is definitely back and really bad in my arms neck and shoulders
Yeah, I have same symptoms as you described, GCA is my main problem, lowering the steriods has caused more problems than the disease it seems.
I was on 60 mg since October, early December the Dr told me to decrease it 12.5 each fortnight "kaput". had to increase, then to go down 5mg a fortnight, still problems.
Saw the Rhumy yesterday, now back on Actemra, as liver tests showed an increase since starting, and now told to lower more on steriods, have to get to 10mg asap he said, as legs and feet swollen to hell, and feeling terrible. ATM on 30mg morning, and 10mg at night.
Question to others, Now if one has a good day, and does some work around the house how long does it take to go worse? For me it can be 30 minutes to one hour, then I need the rest of the day to settle down, mentally and physcially! Heat makes it worse. Shaking from knees to hands, sometimes cannot hold a glass to drink, never had it before?
Rhumy wants me to see a neuropathologist.
Male, Queensland Australia, yeah, summer time here.
If you are having problems lowering the steroids, then it sounds as if you haven’t managed to get your GCA fully under control..early days you can reduce relatively quickly down to 25-30mg, but, and it’s a big but only if the initial dose really got to grips with the inflammation. And Oct to Dec on 60mg should have achieved that… how did you feel before you started 1st taper?
We would usually suggest at least be weeks at each drop, 2 weeks isn’t always long enough to know current dose is sufficient before you reduce.. If it isn’t and you taper 2, 3 or 4 times you can get in a pickle because you have gone below the dose that is sufficient.
Mabel have a look at this general info post-also contains links on pacing yourself which is very useful -
You do sound in a bit of a state…. And not sure a quick taper to 10mg Pred will do you much good… think Rheumy is blaming that when it could be Actemra as well.
Bloods good and inflamation under control now, except for liver function tests they need to come down, felt a bit better before lowering the steroids. Seems like a long time ago due to brain fog, confusion, and slow increase in health? However weakness was also at the first point before taper, and now much worse. Could be as whole body is now swollen with fluid "10 kilos up" and now on 40mg Lasix?
Been off Actemra for 6 weeks to have bloods done twice and see if that was the problem, and it appears not according to the Rhumy. He said he needs me to be down to 10mg by mid March, going to be fun as I usually crash 3 days after lowering.
Not quite clear about your Actemra - on or off? And to be honest - with or without Actemra, reducing the dose at that rate was going to cause problems. Can you outline your Actemra journey for me?
This early in the journey and under the circumstances, I think you need to accept you are not a well person - and behave accordingly.
Actemra was started in December, 1 injection every 2 weeks, only had 3 jabs when told to stop due to elevated liver markers, Rhumy wanted to find out if Actemra was causing it. Have to wait and see if this improves things now, Rhumy said it could take months for any result or improvment!
Yeah, I know I am not well, everyone says. you look good, inside is another story! Glad I found this site.
"Rhumy said it could take months for any result or improvment!"
I'm a bit confused by his views. If he is happy about Actemra/TCZ not causing the liver stuff - why isn't he using weekly injections like all the experts I know, And with GCA you do need get things under control with pred first because you don't know how long the TCZ will take to kick in. Has it not occurred to him it may be the way he is using them that means it takes a long time?
Treatment specifics, A patient may only qualify for PBS-subsidised treatment with tocilizumab for active giant cell arteritis once in a lifetime.Treatment must not exceed a total of 52 weeks including initial and continuing applications. Taken from the PBS website
Seems he wants it spread out over two years? He did advise previously it was going to take 2 years on Actemra and steroids. If one needs it outside the PBS it is $813 for a pack of 4. Still learning every day with this, and one can ask so many questions in the given time with the Rhumy!
LemonZest11 also in Australia and managed to get her TCZ extended with a direct agreement with Roche - maybe have a look at profile - and as I have tagged her she will respond
Yes, further digging, the Rhumy can apply for more through the PBS website. Have to ask why I cannot have weekly injections when I see him next month?
Saw the Ophthalmologist this morning. Blood vessels in my eyes angry and inflamed, amazing how they appear, not smooth at all, sharp and jaggered, he will be in contact with my Rhumy and advise, also been advised that prednisone will cause dry eyes. Now have a medicated eye lube to do each morning.
Hi ngchgc, sorry to take so long to get back, it's been hectic with family. Ok, if Actemra is the way you want to go, firstly you could ask your doc to write the scripts as though you are having weekly jabs, and stockpile them. Use them by date order, they last ages. Actemra definitely works fortnightly. That will get you 2 years. Second option is to approach Roche directly with your story. You need to have exhausted your PBS supply and having success with the drug. They won't deal directly with you but will ask for your Rheumatologist's details. Rheumy needs to be on board. Actemra was a godsend for me, but after over 12 months pred free, I relapsed, which is apparently common. We're on a journey, doing the best we can. If you need any more information, I'll happy to help.
I will try to get him on board with this, Rhumy is good, but my GP does not want to help much now? And just refers me back, feel like a tennis ball at the moment.
Rhumy is very good, phones me each 3 weeks and today he sent me an email, also I can phone him 24/7 and leave a message, getting a return call can take some time thou!!
I was surprised with his honesty and being so forthcoming, scripts no problem at all, however the last visit Tuesday, he said you should be much better and he was disappointed I was not, and in some ways, I am worse.
He even emailed me yesterday "Saturday afternoon" and sometimes phoned me back as late as 8pm!
Probably why he wants my dose of pred reduced ASAP now, stomach, legs and feet are like watermelons, fluid around lungs and breathing difficult at times, and I am shaky all over. Shakiness only the past month, could be inline with reducing pred so fast? 5mg every 2 weeks.
And are the steroids affecting my liver? Now have to book in and see the Liver specialist, and also the Neurologist.
Weight has gone up 11kgs in the past 6 weeks. I should rename as the Michelin man?
No, the GP should remain responsible for OTHER things - in the UK that is always the case, Here in Italy I get the big batch stuff via the GP but the specialists will always ask during an appointment if I need anything. If you have a UTI or an ear infection would the GP send you to the rheumy then?
In Australia, GPs are loke primary school teachers, knowing a little about a lot. Specialist are the secondary teachers, deep knowledge about a particular field. So a GP can prescribe pred when the diagnosis is confirmed, they should be part of the support team, but not the leaders, if that makes sense.
Fair enough - but in the UK and here, even when you are under specialist care, it is the GP you go to for everything else. My GP doesn't alter medication for the PMR or the cardiac stuff, but initiates medication for a UTI, URTI or anything else minor. And it is the GP who provides the repeat prescriptions most of the time though the specialists will issue 2 months worth if I ask. But via the GP I get at least 3 months and up to 6 months of certain things.
Yes. I think we're in synch. I just get annoyed when a GP thinks they know everything and then are miffed because patient is treated by a specialist and so won't provide backup support. It's like small man syndrome, ooops, shouldn't have said that 🤐
When I first started with symptoms of GCA, my GP started me on pred after the 2nd consultation, however the script the Dr wrote was only for 15 tablets, the bottle usually holds 30! He seems to love that little tactic, as he has done it before with other meds! While waiting to see the Rhumy I had to go back for another 15 tablets! A bit upset as when you get the bottle of pills, the seal is broken, I should say something to the pharmacist for broken packaging. As LemonZest said it appears to be small man syndrome, as he does not even want to fill out needed paperwork, and says the Rhumy should do it, you know, I have only being seeing this Gp for 15+ years.
The situation in Aus may be different but in the UK where it is also restricted to one year, that wouldn't work because the allowance is for a calendar year and not 52 weeks.
But even so, you have to get things under control with pred - which isn't restricted in any way - or you end up wasting the TCZ.
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