Just thinking 🤔 : Hi, Diagnosed GCA January, 201... - PMRGCAuk

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Just thinking 🤔

fmkkm profile image
42 Replies

Hi,

Diagnosed GCA January, 2016. I’m almost to 3.5 and lately I’ve had this thought that when I get down to around 2 mg I would just stay there. I think for me, I’m scared to go completely off because the last 3.5 years is not something I want to repeat. I have GCA so the thought of 40-60 mg of prednisone again is hard to think about.

Any thoughts?

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fmkkm
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42 Replies

I have known 2 people with TA/GCA and one never got below 10mg and the other was on a maintenance dose of 1mg (husband and mil of a friend respectively).

I am sure some others who have done the GCA dance will have some more helpful advice for you.

But my view is that if your bones are fine and it gives you confidence to stay on a maintenance dose....well....I will do it for PMR if I need to.

fmkkm profile image
fmkkm in reply to

I’m not sure it would really make any difference if a relapse showed up, maybe only helpful as a placebo, sort of a security blanket.

in reply to fmkkm

I agree, but it's a very powerful security blanket. It might be you need a rest from tapering for a few months when you get to 2mg. Not having to think about tapering all the time might be a good enough crutch. It has been an easier year for me sticking at 6mg with no pressure to reduce for a year.

fmkkm profile image
fmkkm in reply to

Yes, it seems this dis-ease is always in the back of my mind. What to eat, how to avoid stress, tapering, what causes it, to CBD or not to CBD and on and on. Yeah, I am tired of this ignorant bedfellow 😂

in reply to fmkkm

Exactly. You are thinking about 2mg now when you should be sitting and enjoying this evening. 🥂😉

fmkkm profile image
fmkkm in reply to

👍💗

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Just continue reducing slowly as and when you feel okay - and still take each day as it comes - if you’ve got this low and are without too much problem at the moment then your GCA is obviously well controlled at this stage.

No point making too many plans for future, wait and see what happens.

It took me 4 & half years to get from 80mg to zero, been there for almost 3 years with no return of GCA.

I fully understand you wouldn’t want to go through it all again, but if you did have a relapse after going into remission you would know what it was this time around, and remedial action could be taken a lot quicker with less steroids.

To be honest, despite Poopadoop’s comments I’m not sure 2mg would be enough to protect you from GCA anyway.

in reply to DorsetLady

I realise it would just be a placebo security blanket DL, but some people find things comforting. I should imagine it wouldn't help at all if a relapse occurred. And I wouldn't want to give the impression that it was enough to ignore any symptoms of a relapse of GCA.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to

No, I wasn’t being critical of you in any way - just saying 2mg would not be enough to protect against GCA - but as you say some may find it a comfort.

in reply to DorsetLady

I thought I would be better making it clear in case someone else thought that. No issues with you saying that at all.🤗

fmkkm profile image
fmkkm in reply to DorsetLady

Good points-thanks!!

SheffieldJane profile image
SheffieldJane

I get exactly where you’re coming from, especially with GCA. That paper Poopadoop posted a few days ago actually had that as a recommendation. Very low dose for life in GCA patients. The side effects are negligible at that level and it would feel like a safety net.Although it wouldn’t be if GCA is not done with you. You would have to go rapidly up from 2 mgs rather than zero. Do you have a clued up doctor to discuss this with? I don’t know how protective this measure would be in reality.

In the meantime there is nothing to lose by going really, really slowly at this stage by tiny crumbs over months. Interesting point to raise.

fmkkm profile image
fmkkm in reply to SheffieldJane

Thanks Jane, I may have missed that paper or forgot already, foggy brain🙃. I will go back and read it. My rheumatologist is retiring after January so that will be interesting. I have a great regular doc, I may just have her manage my care after that.

in reply to fmkkm

Me too and I posted it!!🥴

HeronNS profile image
HeronNS

GCA not in my picture, but I can say I've been reducing with hiccups (minor flare) from 2.5 to 1.5 and now 1 for roughly 27 months. I don't have my calendar with me so not sure exactly. It got much easier to deal with a few months ago when I decided to do an extreme version of DSNS where I do each taper twice. Instead of six weeks it now takes twelve to drop by .5 mg, but it's working, so far.

I think you should simply take your time. Don't taper unless and until you're ready. But I wouldn't plan to never taper past 2. Wait and see how you feel. If it takes six months to taper 1 mg, so be it. If it takes two years to be ready to make that taper, again, so be it.

fmkkm profile image
fmkkm

Good idea spending 2 weeks per taper now. Also, I am not in a hurry to taper or get to zero just missing being human. I guess I got myself on a “Debbie Downer” today. Have a nice evening.

Brantuk profile image
Brantuk

My only thought is keep a close eye on your CRP levels. Whatever you do with the NSAIDs, if your crp level starts going up significantly again (as in a flare) then you'll want to up the pred dose again until your body's immune system can handle it unaided.

Lee1945 profile image
Lee1945

What does your Consultant advise? Mine reduced me slowly to one mg and told me to complete the course and he will see me on 6 months!

Always seek the advice of your Consultant as others on the forum are also in need of professional advice - even at lower doses, these are still meds.

in reply to Lee1945

Please see my reply on another thread.

SnazzyD profile image
SnazzyD

I’m mulling this over too at 1.25mg, with a never-want-to-go-back-there frame of mind. However, I’m now thinking that if there was a flare, 1mg is a drop in the ocean and the protection is probably going to be psychological, but who knows?

fmkkm profile image
fmkkm in reply to SnazzyD

So right, sounds like staying on low dose would probably only amount to a security blanket.

jinasc profile image
jinasc

I come late to this post...........but want to tell you what happened to me. I was one of the odd people (few and far between) who had GCA only.

I had GCA for 5 years within that time, two flares, back to 60mgs 1st time, 40mgs second time. Then down to 2mgs and one medic wanted me to stay there and the other one said down to 1mg then stop.

Now I was lucky, I had had two synacthen tests one year apart and both times, adrenals were functioning fully. The second test was because I had been admitted to hospital for another problem and because of my age the Acute Medical Con wanted to be absolutely sure.

So stalemate, as although I really respected both of those medics I really did not want to be taking medicine on a 'just in case scenario' and two of us were in the school of thought that 2mg would do zilch. I had had those problems when first diagnosed GCA with the 'just in case' automatically given to see if you really needed them and then ran into problems with Calcium etc. My bone density never changed from 97% all through the 5 years.

At that time the Tabul study came along and the trial had been set up in another hospital........this study, which you can read about, was to see if this could replace the temporal artery biopsy. The Consultants being curious, decided to give it a go, just to see what it looked like on someone whom they were unsure of had gone into remission. Result 'No Halo'. So I stopped and now into 8th year of remission.

A low dose would not control GCA if it decided to come out of remission and the beauty of it all it, you know instantly if it decides to pop up again. YOu will never forget the symptoms.

AS ALWAYS it is your decision and yours alone.

fmkkm profile image
fmkkm in reply to jinasc

Thanks for your story, I plan on another year which will bring me close to 5 years. I’m not sure what got me started down this rabbit hole anyway. Probably because I went to the rheumatologist this week (6 month appt) and realized they are not much help to me so my brain has been going on about the whole journey. Thanks

ipsidipsy profile image
ipsidipsy in reply to jinasc

Hi jinasc,

I am in much the same position as forwardmotion, GCA 6 years now on 2mg pred, no symptoms of GCA. Following the tabul study do you know if PET scans are carried out to detect if GCA present now?

jinasc profile image
jinasc in reply to ipsidipsy

ncbi.nlm.nih.gov/pubmed/279...

This was the last I read.

However, they did not do it to see if it had gone into remission, the study as you will see, was to see if the Ultrasound could replace the invasive procedure of a biopsy.

It could and at less cost........if I have read the link correctly.

It was just three curious rheumy's one of which was my Consultant for five years.

PMRpro profile image
PMRproAmbassador in reply to ipsidipsy

As far as I know, PET scans aren't much use for looking for cranial GCA as the brain takes up so much of the tracer that any more local effects are swamped by the signl from the brain.

GinnyMa profile image
GinnyMa

My GCA was diagnosed in June of 2015. I know what you mean about a security blanket made by this prednisone and the dread of a return of the disease. When I got to 5 mg my doc had me reduce by 1/2 mg every two months. So it took almost a year to get to zero from 5, which I did in June of 2019. A return is in the back of my mind because it has been quite a journey. Be brave I told myself on the morning after I took the last 1/2 mg and I looked longingly at the pill bottle!

Lee1945 profile image
Lee1945 in reply to GinnyMa

It sounds to me like you had a good Consultant. Like yours, my Consultant took me down the sliw but steady route of reduction as did not want me on a yo-yo taper.

Stella3 profile image
Stella3

Hi, so interested to read your post. I feel exactly the same as you. I was diagnosed early 2017 and started on 60mg. Like you it was a pretty rough journey. I am now down to 2mg and am terrified of going completely off steroids. I was told by a nurse that when one gets this low all sorts of aches and pains that one had before getting GCA would probably rear their ugly heads! (Arthritis etc). As the steroids were keeping everything at bay. I have osteoporosis and have been on Reclast infusions once a year for that.

Have you been decreasing by l mg per month? When I decrease I usually do 2mg one day and 1mg the next, which is what I am supposed to do right now. However I have decided to hold out till I see my Rheumatologist early next month.

Good luck and I think that Dorset lady right, 2mg would not be enough to keep GCA from rearing its ugly head....if it decided to come back.

fmkkm profile image
fmkkm in reply to Stella3

Hi Stella, I pretty much followed the DSNS taper until around 5 mg. I’ve actually been on 4 mg for a very long time, months! Every time I tried to go lower than 4 I would have to backtrack. So, nothing has been straightforward this year. Just lately I’ve been having an easier time getting lower.

Marilyn1959 profile image
Marilyn1959 in reply to Stella3

Hi Stella. I am interested in the infusions you mentioned. Can you tell me more? Any side effects? I think this is what my Rheumy wants me to have. However, since I have advanced gum disease I would need to have all my teeth out first!

Stella3 profile image
Stella3 in reply to Marilyn1959

If you take the infusion Reclast (once a year), I don’t think you will be able to have any major dental surgery etc. However that would be something to talk to your dentist about. I had no side effects whatsoever. I did not want to have it, as I didn’t want to take any more pills, medicine etc. with all the stuff you take for GCA.....but it was recommended for someone having osteoporosis and I took the advice of my Rheumatologist. Good luck with your teeth and gums.

195094 profile image
195094

Just saw my rheumatologist this week and he didn't seem too concerned that I was on 2mg. In fact, he said anything under 3mg. is about what your own body makes. He said it is obviously better to be completely off, but is okay at where I am. I have PMR, tho, not GCA.

HeronNS profile image
HeronNS in reply to 195094

Funny, we've all been told we make about 7 mg per day. Too hard to search on my tablet but I did find reference to a figure around 5 - 7 (I've rounded the numbers down).

HeronNS profile image
HeronNS in reply to HeronNS

ncbi.nlm.nih.gov/pmc/articl...

jinasc profile image
jinasc in reply to HeronNS

Hi Heron................I did follow the link and as usual with me..........ended up with no more sense that if I had not read it.

However it did trigger a memory, someone somewhere in the journey I undertook that no-one ever willingly undertakes................GCA. I seem to recall that CRP also depends on age, height, weight and past medical history etc.

We humans are an odd lot....🤔...always we are the same, yet different.

HeronNS profile image
HeronNS in reply to jinasc

I didn't understand the article but was trying to show we normally produce more cortisol than under 3 mg. Nothing to do with CRP. At least not my intention. ;)

jinasc profile image
jinasc in reply to HeronNS

I was hoping you might have a bit of info... on what I thought was a relationship. Sorry HeronNS My fault.

HeronNS profile image
HeronNS in reply to jinasc

Interesting thought. Does our natural cortisol, if raised because of stress, actually contribute to inflammation? And if so, why does pred, or hydrocortisone, etc, help reduce said inflammation?

PMRpro profile image
PMRproAmbassador in reply to HeronNS

There has been some work recently from London (Imperial college wants to some to mind but I'm not sure at all) concluding that the body functions well on 2-3mg pred - really not sure I believe it for everyone! But even so - if you don't absorb a large amount of your pred then problems will start at a higher oral pred dosage.

HeronNS profile image
HeronNS in reply to PMRpro

Hasn't there also been a discussion about how prednisone is actually more powerful than natural cortisol? I guess that could explain it, that even taking as little as 2 or 3 mg pred is still replacing all of our natural cortisol. That's a bit concerning for those of us who have blithely believed their adrenal glands were performing well at the low dose!

fmkkm profile image
fmkkm in reply to HeronNS

Agree. I keep going by the 7 number but as I try to nudge my body under 4 I’m feeling like my adrenals have truly not awoken. I did not feel like this between 7-4. Also, I have been on 4 for a very long time so I think my body may be coping on 4 just fine.

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