Hello good folks...well, I had my second rheumy appt after last month to find out she's leaving practise. I start w/ new unknown rheumy next month. When I looked her up I see she us almost singularly focused on rheumatoid arthritis ..I'm a little worried she won't be up to challenge of GCA. Do you think as a rheumy she should be able to handle it well?
(Recap on me: considered GCA in march '22 by neuro- ophthalmologist and others. Diagnosed by rheumatologist last month. March 80 mg prednisone, now on 35mg)
Yesterday's rheumy decided not to drop to 30 mg that I was due for because of breakthrough symptoms periodically: scalp and Temple soreness, pain, artery swelling. But I see in her notes she said I had " no flares". Not sure what those symptoms are then ( not flare...pred tapering..withdrawal??) Couldn't ask much questions as this was a six minute appt, but as I say she decided not to reduce further. So what are those episodes? My inflammatory markers were normal except for mild elevation of esinophils and basophils.
Actemra which she suggested last month was brought up and said to pursue with new doctor. I am having a definitive test for Myasthenia Gravis next month. A whole new thing which is very distressing but will try not to think of it til I know for sure next month. Actemra is contraindicated with Neuro muscular disease so I have to see as well as my white blood and platelet counts running low.
It seems from webinar that Dr. Mukhtyar feels Actemra should only be given to few who really need it. Is that the sense you got? So I ask myself...why do I really need it?
How long does insomnia last? Since I started in march on pred I average 2 hours sleep a night. Sometimes 4. It is very difficult. I'm hoping it improves as I taper. Its hard to function on 2 hours sleep. I'm exhausted! ( don't mean to complain,sorry!! I think I really have been lucky not to have horrendous side effects...just enough for occasional misery!!)
Sorry to be so long winded. Any thoughts or feedback would be appreciated. Best to all of you...you're the best!
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I don't know much about GCA but I think you are right to stay at your current dose until the symptoms settle. They don't sound like withdrawal so much as a sign the disease is still active and needs a certain amount of pred to control. You might want to consider tapering by 2.5 next time. It's often easier with a smaller drop at each stage, and sometimes a smaller drop but more frequent helps maintain the momentum of a successful taper (e.g. 2.5 every fortnight). Once you get to 20 mg you will have to slow down the taper, even more as you get lower (the lower the slower) and remember the rule of thumb, no taper bigger than 10% of the dose. Meanwhile, theumatologists are the specialists who normally treat GCA, so try not to have an anticipatory worry - "sufficient unto the day is the evil therof"! She could turn out to be a gem, or at least reasonably competent.
Sleep is often a problem. Fresh air, light exercise and natural daylight during the day, and all the usual quiet things one does to lead up to bedtime may help, including restricting screentime. I found that taking a dose of calcium supplement (with a small snack) near bedtime has helped me sleep better, generally, than I had most of my life, having been an intermittent insomniac as long as I can remember. Hopefully you can find something like that. Best wishes!
Thank you so much. I like the idea of a 2.5 drop and notion the disease might still be active causing it..hadn't looked at it like that. Yes, she might be a gem! You're right! Interesting about calcium. I'm definitely going to try that. Thanks for taking time and interest to respond. Take good care, be well.
Any Rheumy is capable of treating GCA, in UK they are the experts….and the fact that new one specialises in RA probably means that’s what she see most…quite normal really.
And yes would agree with current Rheumy- signs are more typical of steroid withdrawal if they come and go, if it were a flare they would stay and probably intensify until a higher dose of steroids taken to get back under control. But sensible not to reduce… 35mg may be just on the cusp at the moment…you are not that far into your GCA (?) journey. Agree with HeronNS you probably need smaller reductions from now on.
As for Actemra, never taken it so cannot comment, but as Dr. Mukhtyar says it’s not for everyone, and in UK where he practices it is not as widely used as in the States, so he probably has a different view than US clinicians.
Couple of links - one on steroid withdrawal v flare and one on sleep - may be of interest -
Thank you Dorset Lady.. Sure sounds 2.5 the wisest and clarification on flare vs. withdrawal helpful. Just reading this now so about to read your links. Thank you and have good day.
We (Prof Sarah Mackie and a research group) were talking about definition of flare the other week - and it is very obvious that there is no consensus amongst doctors about it. They seem not to take breakthrough symptoms as a flare - but I think most of us would consider breakthrough symptoms as a sign you were skating on thin ice with the dose. You need the amount of pred that manages the effects of the daily batch of new inflammatory substances - so technically, maybe it isn't a flare until they are more persistent, but then, reduce the dose further and occasional will become more persistent! The pred cured nothing - its mopping it up, the GCA hasn't gone away, so again, it isn't a flare of the disease, it is inadequate management. Semantics maybe?
Actemra for GCA in the UK where Chetan practises is a very different matter from use in the US where it is less restricted. I suspect he is hoping that if he can show the authorities in the UK it is only used in a small number of "deserving" cases he may get more freedom to use it.
Thanks so much. That did help clarify things for me so I'm glad rheumy decided not to have me reduce more. Its all becoming little clearer to me thanks to all of you and your feedback. So much to learn and consider. I do keep a diary of break through symptoms ( sleep etc) so I can carefully report back to Dr and be vigilant ( without being neurotic about it!!!) So good day to you and thanks again.
“You need the amount of pred that manages the effects of the daily batch of new inflammatory substances - so technically, maybe it isn't a flare…”
I’ve read this statement about inflammatory substances a few times now, can you expand a bit. Viz what are these substances, and why the timing during the night (I think I’ve read you mentioning 4am in the past). Is this why the adrenals go into action (for a healthy person) during the normal hours of sleep, midnight through to 8am?
It isn't WHY the adrenal glands go into action - that is the normal circadian rhythm of the body, preparing for the day ahead. The shedding of the various cytokines is also part of that circadian rhythm - but not deliberately making inflammatory stuff - depending on the context, the same sunstance can be pro- or antiinflammatory! But they do have an important role in the normal running of the body - it is when the immune system goes wrong that they cause trouble.
It so happens that IL-6 is shed early morning and then gets to work causing inflammation. It sets in almost immediately - if you take your pred at 2-3am it is there, ready and waiting to combat it and the effects are less. If there isn't enough to deal with it all - there will be some inflammation left over to be felt, sooner or later..
Thank you. I find it baffling but have zero training or knowledge apart from what I learn here and on the internet. My take away is ‘it just is’ as described.
From what I've read on the forum and personal GCA experience there can be 'breakthrough' or 'escape' GCA which is intermittent and low level like the sore scalp you speak of. These symptoms should be observed and monitored - great you keep a diary - but are not neccessarily a problem for tapering. It is really worth knowing that because no one told me there would still be symptoms and I worried unneccessarily. As a rule of thumb if low level symptoms reduce towards the end of the month it is a good sign.
However, if they build up, become more regular and strong then it may well be a flare. From what I have read and personal experience, flares are more likely between 10 and 5mg.
(Obviously we have to always look out for red flags of jaw and eyes.)
The steroid angle is a complication - personally I have found that it can be implicated in symptoms. On three occasions when I tapered, symptoms I thought were GCA resolved on a lower dose. I think this is only something we can understand with personal experience of the illness and the steroids because everyone reacts differently.
In the UK the convention from rheumys is usually for 5mg reductions (monthly) to 20 and then 2.5 to 10 and then 1mg monthly to 0. On the forum many people prefer a slower taper after 10 particularly for PMR.
I would imagine your sleep problems will improve greatly as the dose lowers.
Although it seems very daunting now, once you are on lower doses you will feel much better and this comes more quickly than you think. A lot of people, though not everyone as the rheumys would have it, manage to get off steroids in two years or under, and towards the end of this period the doses of pred are low so not a particular problem.
"the convention from rheumys is usually for 5mg reductions (monthly) to 20"
Very much depends on the rheumy - some do 10mg, some do 5mg and some start with less sooner when what they start with doesn't work. And some don't learn from experience!
Very helpful thanks. Clarifies flares versus withdrawal tapering etc a lot if which I seem to not get a handle on. Little by little beginning to undersrand. Good to remember we are all different in responses and journey. Up now in middle of night writing so not at my best!! Thanks again.
Great. There seem to be at least four things to look out for:*Steroid withdrawal symptoms - lots of good posts on this, people report they seem to happen quickly after a taper and resolve after a few days to a week. These are not a problem other than a bit of discomfort but since they can mimic GCA symptoms need to be monitored.
*Escape or breakthrough GCA - this is said to most often happen a week to two weeks into a monthly taper but can be earlier. If these are very low level and intermittent, don't progress and hopefully resolve as the month they may not be a problem but they are definitely something to keep an eye on and discuss with your doc initially at least. When I had these I was advised by an enlightened rheumy to have monthly ESR/CRP tests pre-taper as another way of monitoring inflammation not getting worse. (But plenty of posts here to say that ESR/CRP may remain normal despite sever symptoms - don't work for everyone.)
*A GCA flare - seems to be when symptoms progress in duration and intensity indicating inflammation is building up - the time to speak to doc.
* And possibly steroid side effects, particularly those mimicing symptoms. I don't know any more about this but it is something I am interested in because I think it is happening to me.
Some people seem not to experience breakthrough GCA, or perhaps only at a certain level of illness/steroid intake. Some people have a relatively straightforward journey (and have already left this forum) others have more challenges. I speculate that pre-existing conditions connected with the head, like migraines, may have a role in complicating what is what.
Great info: nice and clear for my less then clear mind (i.e.sleep deprived!!) Really helpful. And yes, as it happens I have history of migraine but they've been very quiet now for past few years...like my sister I think we both kind of " aged out if them"... Thanks again, stay well and enjoy your day.
The 2 hours sleep a night is horribly familiar.😧 IT doesn't help your body to get better , one little bit. I know sleeping tablets are frowned on, but I am very thankful that my current GP considers it necessary to protect sleep and gave me mild sleeping tablets. I know there is a potential problem with addiction, but I have managed successfully to reduce the dose along with reducing the pred dose - and can usually get at least 6 hours. Bliss!Incidentally, as you ask about Actemra - in my experience it helps to sleep a bit better the following night!
I think that in the UK Actemra is reserved for people who have been unable to reduce the pred dose despite repeated tries. In my case, I couldn't get below 15mg.
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