Same old question - withdrawal or flare?

[strawclutching]

Hi folks. I've been through two flares already since the start of this GCA journey in September 2020, hoping I'm wiser to spot them. However this time if it is a flare, it's slightly uncharacteristic. I only just got over my second one five weeks ago. I'd got down to 7mgs with the aid of Actemra (6 months) then two weeks on that dose the pains crept in. Rheumy insisted it couldn't be a flare even though ESR had raised from 2 to 18 in 6 weeks which is nowhere near my own 'normal' level despite her insisting it was absolutely normal. She asked my GP to explore other reasons for the pain such as fibro, arthritis, even though to me it was typically rheumatic pain. My GP ignored the letter - I have since left that practice after so many issues. I increased up to 15mgs before I got on top of the flare and rheumy wasn't happy as she told me to carry on reducing 1 mg monthly from 7 mgs down but I could barely get out of the chair. So her new plan reducing from 15mgs down was 2mgs per fortnight which I thought was crazy. I got down to 14mgs after a month and blood work was still good after 2 weeks so took a chance and reduced to 13mgs. Pains returned within 2 days and 9 days later they still haven't settled. Question is, do I go back up to 14mgs and check bloodwork in 2 weeks when I have another test, or stick where I am and possibly overload the sink with the dripping tap again meaning I end up back at 15mgs or higher and a slow monthly taper down again?

I know if I contact the rheumy helpline I'll wait 3 days for an answer which will be 'stick to the plan - 2mgs reduction per fortnight.' She has given me another 3 months of Actemra on prescription which I think is optimistic as it should have helped me reduce easier than this.

I have so many health issues I raised with my last GP such as arrhythmia - I feel faint many times during the day with any exertion. Even hiccups sets off the slow then fast beats. It stops me going out because I have to hang onto walls & fences. My pulse slows for several seconds when I feel this way then it suddenly quickens like palpitations and takes several minutes to return to normal. The old GP told me about a box I can have fitted to monitor the heart for 24 hours and I agreed that would be a good idea, However 7 weeks went by and I heard nothing so sent an econsult to remind them- unable to get through on the phone. Ten days later, still no reply so I registered with another doctor. I had an assessment appointment with a healthcare assistant and a few days later was accepted at the new practice. I'm just a bit nervous going for my first appointment as I have a long list of ills now they'll probably think I'm a hypochondriac.

After 9 days on the 13mgs, should withdrawal pains be gone, or do I assume this to be a flare and increase to what? Thanks for any advice.

[Kendrew]

Hi there,

I can't advise you regarding your GCA as I have PMR but others with more experience will be along soon to advise you further.

I have just read your bio and was very concerned to read that you believed your life expectancy from diagnosis to be on average only 3yrs! You don't say where this information has come from and hopefully someone has already addressed this and reassured you that this is absolutely not the case.

My father lived a good life with PMR/GCA for 9yrs and died of a completely unrelated condition. My sister's PMR went into full remission after 3yrs and she's been well for the past 7yrs. I've had PMR for 4yrs now and certainly hope the grim reaper isn't waiting in the wings!! 😄

I also just want to mention that when I taper down a dose, I usually experience withdrawal symptoms (emerging within a few days of taper) which mimic PMR symptoms but can often take at least 2 to 3wks to diminish.

Symptoms of a flare usually fully emerge a good few weeks after the taper has been fully executed. Thankfully, over the past 4yrs this has only happened twice to me.

I also have had a history of episodes of ectopic beats throughout my life which are harmless but can be extremely alarming when they occur. Mine feel very similar to the description of your experience of them and for me, taking steroids definitely aggravated them.

Obviously I have been checked out by a cardiologist on several occasions and know that my palpitations are harmless.....the same course of action is probably prudent for you too though.

I hope you receive some helpful advice from some of our more 'learned' members and that this will in turn offer you some reassurance.

[strawclutching in reply to Kendrew]

Thanks Kendrew. I found an article online when first diagnosed that gave only a short number of years survival rate for GCA sufferers. Since being a member of this forum I've since discovered this is not the case I'm pleased to say, though I do wonder if the duration must be spent yo-yoing between doses, trying to comply with so called experts' advice while being racked with pain. 🤨 Steroids, especially when the dose is increased definitely makes the fluctuating heart rhythms more frequent. I'll definitely hang on a bit longer, see if the pains subside before I do anything. Thanks again.

[KASHMIRI1 in reply to Kendrew]

I was so pleased to read that you experience issues up to two to three weeks after a reduction. I have the same and l am not sure if my rheumatologist believes it. I have read that it's just a few days for some people. Last reduction l felt worse than when l was diagnosed. Levelled out nicely now. And on a slow reduction plan which suits me well. Half every other month.

[Kendrew in reply to KASHMIRI1]

Hi KASHMIRI1,

Obviously as individuals we react differently to all aspects of managing our conditions but this forum frequently is able to reassure people that there are others who can and do share similar experiences.

I've been checked out a couple of times for GCA because when tapering down from the higher doses I would always develop head pains as the reduction began. All the investigations confirmed no GCA present but the headaches could take anything up to 3wks to fully disappear.

Now I'm on a lower dose of pred I just tend to experience aches & pains but again I can experience these for up to two or three weeks.

I don't know if this is common or whether I'm in a very small minority, but I can definitely feel a bit 'rough' at the beginning of each taper....... and of course at lower doses (I'm currently on 3½mgs) I'm now dealing with adrenals trying to wake up again too.

PMR & GCA are complex conditions that can react to so many different variables and it can be very confusing to figure out what's normal and what's not.... particularly as we all have our own individual combination of related health issues that will impact on the choices and decisions we have to make.

I think that if ever we're unsure about some aspect of our condition or medication then it's always best to get it checked out professionally.

Frequently many of our worries and anxieties turn out to be not as bad as first thought and more concerning issues can usually be resolved eventually.

As you said.....dose reduction needs to be slow & steady.

I'm currently averaging 8 to 12 wks for each ½mg reduction!

[KASHMIRI1 in reply to Kendrew]

Thank you for your considered reply. I was on 5.5 plus methotrexate but had to stop the latter because of a dangerously high liver test. I felt very unwell and was put back up to 6.5 which has levelled out nicely. Looking forward to the next reduction on the way downwards well hopefully 😊

[PMRpro Ambassador]

"Rheumy insisted it couldn't be a flare "

And WHY can't it be a flare? The sheer ignorance of some of the doctors who blithely hand out prescriptions for Actemra without actually having read any of the documentation amazes me. Patients in the clinical trials had flares and in fact when all the numbers were crunched and the big reveal came, only half of patients on Actemra were able to get off pred entirely. Half needed to remain on a much reduced dose and 8-10mg was not uncommon.

GCA inflammation is caused by 3 different mechanisms, only one of which is tackled by Actemra, IL-6. If your GCA has components of the other 2 causes you continue to require pred to deal with that part of the inflammation, Once Actemra is working - and it can take a few months, it isn't instant - you should be able to reduce the pred at that sort of rate UNLESS you are one of the 50% who still need some pred.

Now, I'm not sure of the details but I asked my rheumy why he still did the ESR and CRP since if you are on Actemra that should make the ESR and CRP very low because of the way Actemra works on the receptors that IL-6 would use to create inflammation in the cells. He told me that they have found that if the markers rise, it CAN be a sign of a rare effect found with biologics where antibodies to the drug are formed which occupy the receptors that Actemra would use and so the effect of the drug is reduced. Again, not sure, but if that happens I assume that would cause a flare.

I hope your new doctor is a bit more with it than the previous one - an arrythmia needs urgent assessment and identification and treatment to reduce the risk of stroke. If you are having a lot of these dizzy spells they need to check the bradycardia bits because they need to be sorted out - I have a pacemaker because of the ones I was experiencing. When will you have an appointment with the new lot?

Do you have a fit bit or other smart watch? They will record your heart rate so the GP can see the results asap - they are obviously severe but it sounds as if they are not lasting long enough for you to get medical advice at the time? My GP told me to call 999 but how much use that would be in the UK at present I don't know. But bear in mind if it happens on stairs or while driving you could be in trouble.

[PMRpro Ambassador in reply to PMRpro]

And I have just read Kendrew's post - I'm sorry, I never realised you were so scared. I have no idea where you got that from, PMR does NOT have any effect on long term survival/mortality. I've had PMR for 18 years and it certainly hasn't taken me anywhere near the Pearly Gates.

[strawclutching in reply to PMRpro]

Thanks PMRPro. Yes I was scared when I read that article. Even though I know the short survival rate not to be true now. I'm also scared because I've become so weak over the last two years. I'd love to be able to do some exercise but even a short walk wears me out and I'm useless for the next two days. Keeping on top of fluctuating blood sugars thanks to the Pred and the Actemra has also killed any social time I ever had.

[strawclutching in reply to PMRpro]

I've seen those Actemra studies too, and quoted some results to the Rheumy, but she seems to have her own agenda fixed on treatment. Could you recommend any particular fitbit or smartwatch that's easy to understand and reasonably cheap while still being efficient? I'll make an appointment with the new doc's next week after everyone's celebrations are over. You're right, I do need to get the heart problem investigated.

[PMRpro Ambassador in reply to strawclutching]

Who - me, advise on techy things? I know they exist but that is where it stops! No, sorry! But put up a post and ask for advice.

[Bluey-1 in reply to strawclutching]

I have a Garmin V2s smartwatch. Sync it up to the Garmin app on my iPhone. You can use it with an android phone also. Not cheap - around £250, good battery life, monitors sleep, body battery, heart rate, stress, steps, has relaxation / breathing exercises, workouts, etc. Fitbit would be cheaper and is also linked to an app. I had a basic one for steps years ago. I’m sure they are much improved along the lines of smart watches. I actually asked my son to research for me as I was about to buy an Apple Watch. It’s short battery life plus additional expense put me off.

[strawclutching in reply to Bluey-1]

Thanks Bluey-1 not sure I can afford that much at the moment. Do they have to link up with your phone? I only have a basic dinosaur model that sends texts and makes calls. The Garmin sounds impressive though.

[Bluey-1 in reply to strawclutching]

They do link up with your phone. This put me off for a while as I had too old an iPhone to link up with the Apple Watch which I was initially going to buy. I took the plunge and upgraded my phone. I find the smartwatch it helps with pacing. The Apple Watch will even do an ECG but the battery life is poor and it’s expensive. You could Google the Fitbit. I’m sure they’re much improved since the early step tracker days.

[strawclutching in reply to Bluey-1]

Thanks Bluey-1 I'll take a look.

[strawclutching]

😊I'm on it!

[DorsetLady PMRGCAuk volunteer]

After 9 days on the 13mgs, should withdrawal pains be gone, or do I assume this to be a flare and increase to what?

After 9 days I think you should assume it will be a flare [steroid withdrawal usually only last a few days] - but you could stay at 13mg for another 5 days and see if things improve before you need to decide on next move.

On another subject -

I found an article online when first diagnosed that gave only a short number of years survival rate for GCA sufferers

Well here’s another one that has kicked that theory into touch.

From first symptom to last dose of Pred a total of 6 six years, and from last dose of Pred to today a total of 7 & 1/2years… and I do intend to go on a lot longer! …

I’ve had 3 replacement surgeries since being off Pred, so I’m sure if I was going to shuffle off this mortal coil there would have been opportunities there….

Nearest I’ve got ‘up there’ is in an aeroplane. 😇

[strawclutching in reply to DorsetLady]

That's encouraging, thanks Dorset Lady. I'll wait a couple more days and see if the pains fade but they don't show any signs at the minute.