Struggling for answers 😞😔: I was diagnoised with... - PMRGCAuk

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Struggling for answers 😞😔

Lucylooloo
Lucylooloo

I was diagnoised with GCA last November after a PET Scan starting 60 mg and also with RoActemra injection once weekly. Was doing ok and came down to 8mg and struggling to go down with 7mg so back to 8 and will stay for while. Having neck pains, hip,leg pains today and fatigue quiet bad so had to go to bed (had wedding at weekend I was good) . My friend called and woke me so “the questions why you in bed on such lovely day etc etc etc etc” I was trying to explain how I feel and was at a lost for words 😔😣 she asked me “what would happen me if I did not take steroids anymore”. I told her I did not know ...... bottom line I am really ill today and felt like a bit of a Hippocrate 😳 like I was not really ill. So what would happen if I do not take my steroids is death possible 🤔🤔😱

Thanks

32 Replies
oldestnewest

Umm, if your adrenal glands are not producing cortisol, which they may not be at 8 mg, yes, death is possible.

Lucylooloo
Lucylooloo
in reply to HeronNS

Do you think I should go up a bit with my steroids ? As do have neck pain and also in side of face .?

Thanks

HeronNS
HeronNS
in reply to Lucylooloo

I don't know much about GCA, but I think your taper has been a bit fast, and probably more pred would help you. What level were you at when the discomfort started to occur?

Lucylooloo
Lucylooloo
in reply to HeronNS

I ended up in hospital at weekend with shortness of breath and palpitations plus bleeding/blood in mouth (think this is gums do) shoulder not great past two weeks or so I believe my bloods are ok but feel bad since maybe 10 mg struggling on wAy down with steroids

Thanks again

Seabyrd
Seabyrd
in reply to Lucylooloo

It has taken me over 2 years to go from 60mg ( got down to 30mg pretty quickly which is common) down to 2mg and haven't been able to go below the 2 mg yet.. but I keep trying different slow methods and I will get there eventually... the important thing to me was to go very slowly and NEVER have a flare which I haven't... the second it doesn't feel quite right I revert to old dose because if I do wait then I would have to go up to a higher dose... hence kind of like starting all over again so I am keeping it simple..I do have a goal to be off by Xmas but if I'm not that's okay too. I am on Orencia infusions monthly for my RA but the last 2 have made me very sick for 2-3 days so will see what my rheumy has to say about that, I will not take it again... there are lots of options out there so will see.

I hope you feel better soon !!

Lucylooloo
Lucylooloo
in reply to Seabyrd

Here’s to us both a lot further on our journey by Christmas x

Seabyrd
Seabyrd
in reply to Lucylooloo

Thanks for your reply... I would imagine you are looking at a good year of slow reducing... best of luck to you ... please don't get in a hurry !!

DorsetLady
DorsetLadyPMRGCAuk volunteer

Hi,

As HeronNS says too fast a reduction - not withstanding the introduction of Actemra.

I had GCA but no experience of Actemra, only recently agreed to be used in UK, but it took considerably more time to get from 60mg to 8mg. From my experience, it certainly sounds as if your Adrenal glands are struggling, so an increase would be wise...and don’t be in any rush to start tapering too quickly.

Death is possible, but unlikely- at the moment you just feel like it! The slower you can reduce from now on, the better chance your adrenals have of waking up.

Thanks a million I feel doctors and in hospital don’t quiet get it unless it’s specialists thanks again

DorsetLady
DorsetLadyPMRGCAuk volunteer
in reply to Lucylooloo

unfortunately the specialists don’t always get it either!

I agree.. it’s crazy sounding re: specialists.. they often times are worse and feel they absolutely know it all!

Leilagirl
Leilagirl
in reply to Leilagirl

Please note: Not all however.?

DorsetLady
DorsetLadyPMRGCAuk volunteer
in reply to Leilagirl

No, you’re right...some are brilliant (in all specialities) and some just think they are!

Hello,

I was diagnosed with GCA in March 17 and took a year with no setbacks to get to 8mg. When I got to 8mg I felt pretty reasonable but 7mg was a whole different experience. I felt like the dose was neither supporting lack of adrenal function nor giving me enough to ride the day. I felt fluey type achey, extremely tired, nauseated, tearful and foggy by the end of the day (I took my Pred at 5pm then). It improved at 6mg (in 0.5mg drops for a minimum of 2 weeks) but I didn’t rush from 7 because of GCA and stress on the body. You may also be having side efffects from Actemra too. Actemra isn’t a substitute for cortisol so whilst your adrenals need to wake up you need to take it very easy. Stopping Pred could be dangerous if your body has an event like shock or infection because unless your adrenal glands can produce enough cortisol you could have an adrenal crisis.

Lucylooloo
Lucylooloo
in reply to SnazzyD

O God that’s me at moment emotional ☹️😢have to keep telling myself to stop !but I have realized I won’t do that anymore as it’s like giving out to ourselves.. I will take it really slow and I might try the later time to take the steroids to see if this might get help

Thanks

I just kept telling myself that although I felt so tearful, it would pass and was just my body reacting to the lack of go juice. I cried a lot and the family got used to it.

As for the time of dosing, I have now changed to 6am instead of 5pm which has helped a lot. I suspected the hormonal sequence that occurs over night in order to give a peak of cortisol in the morning was being suppressed by the Pred and PMRPro had some bits of research saying evening wasn’t good for adrenal function recovery. So while it suited me during higher doses it wasn’t ideal for low doses.

Lucylooloo
Lucylooloo
in reply to SnazzyD

Alright 🧐thanks a million for the info

Hidden
Hidden

Hi Lucylooloo, I'll let the others address your questions about meds and tapering... but I must ask about the other part of your post... Why on earth, are you feeling like a hypocrite? Why would you allow yourself to doubt (for even a moment) your very real illness? How could you question the validity of neck pains, hip pain, leg pain and fatigue?

You had every right (no you had the responsibility!) to be in bed... regardless of the weather!

It is hard to tell if your friend was asking the question in a sincere, genuine, "I'd really like to understand," way, or if she was assuming that the steroids you take, make you tired, ill, fatigued and generally not well. I'd like to think it was the former, but have a feeling (by the way you reacted to her comments) that it might have ben the latter.

Please, please, please do not allow anyone (especially a friend) to get in your head like that! Steroids are your only course of action with GCA; or you risk blindness, other physical ailments, and yes... death.

As the others have said, your taper down sounds like it went much too fast. I was diagnosed in November 2017 as well, with GCA & PMR. I started at 40, went to 60, tapered back to 40, thought I would die, and was increased to 80! I had tapered down to 30 and feeling good... up until yesterday, when I had to admit a flare, and my GP increased me to 40. It sucks, its frustrating, it's disheartening... but it happens. And we just need to deal with it.

I wish you well and hope you come out of this (what seems to be a) funk soon... Be well.

HeronNS
HeronNS
in reply to Hidden

Do you see a pattern? Forty seems to be a magic word in your pred life. I guess it means you'll have to bite the bullet and start using the dead slow or similar tapering method - I believe Dorset Lady has an eponymous slow taper method. Because once you leave 40 your body wants to send you right back there again. You'll have to get sneaky!

Hidden
Hidden
in reply to HeronNS

Ahhhhhhhhhh, Noooooooooo, I did not see it! And there it was, hiding in plain sight!

WOW! ..but I don't want 40 to be my magic number/word!

I want zero to be my magic number/word!!!!!

I was 24 days into being on 30 mg and I was doing great! Feeling good! It was the row I tell you, the row... and people dying, and anniversaries of people dying that pushes me off the cliff!

You are a CLEVER girl HeronNS... very clever!

Lucylooloo
Lucylooloo
in reply to Hidden

Yes I felt it was like a “what’s wrong with you ? & I cant get my head around this” she did say she can not understand and wants to. I went to a family wedding at weekend and I was good felt good also but next day emotions set in I became overwhelmed, possibly felt I was on the mend etc. Anyway I was possibly stressed about the wedding unnoticed to myself, went to my mums yesterday (who’s 91 in November) and hovered her house 🏡 struggled. Again people saying “your better then me” (as in health wise) I could go on but at end of day I live on my own and feel I ve done really well with this illness. Today I was really bad with fatigue walking etc. I found it hard to explain to my friend about my illness. And needed the support here xx

Hidden
Hidden
in reply to Lucylooloo

Ohhh you poor thing... I'm so sorry. Perhaps you need to try to explain to your friend(s) what this disease and being on steroids is like and what it does to you, physically, mentally and emotionally! Try sharing this, if it resonates with you... others have said it was helpful to them, in explaining to family and friends some of the things they experience. Perhaps as you read you will see some of your symptoms, signs and side effects... I do not take Actemra, but can only imagine you may have more and different side effects.

I wrote this blog post in January after being diagnosed in November:

rantingsofamadwomanblog.com...

You will always find a shoulder to cry on and an ear to listen here...

Lucylooloo
Lucylooloo
in reply to Hidden

It’s funny I had seen this before and meant to go back to read it but as usual never did. It’s brilliant your explanation is so detailed. Thanks for that 😘 saving it

Maureen

HeronNS
HeronNS
in reply to Lucylooloo

This page has links to a couple of stories which may be helpful. rarainbow.wordpress.com/201...

Lucylooloo
Lucylooloo
in reply to HeronNS

Yes very good Again it’s strange but you know I think I was codding myself lately I think I needed to come back to these and read them. Thanks for this 🙏😘

PMRpro
PMRproAmbassador

Since you are on Actemra I think you need to discuss this with your doctor. Some people DON'T manage to get off pred even with it and it sounds as if you are one of them and that possibly you need a slightly higher dose than you are on at the moment.

If you were to suddenly stop taking the pred now, yes, you would run the risk of becoming seriously ill and if not treated, adrenal failure can lead to death. That is why at this stage the reduction in the dose of pred should be slow to allow the adrenal glands to take up their duty again - but they need time. However - in the context of PMR/GCA, not taking pred won't kill you, but the symptoms will come back if the underlying autoimmune disorder is still active.

Hidden
Hidden

I have never stopped taking prednisone. 3 mg is the lowest I have ever tapered down to. I am taking 7 mg right now, but would need a lot more to stop hurting. Nobody understands PMR except for the ones that have it. If you find a doctor that keeps you feeling good for long periods of time you are lucky. The worst times I have are when I can barely move any kind of way without severe intense pain. If I stop taking prednisone completely I believe I would pray for God to kill me. The pain can get so bad at times, its hard to believe in modern times some one would have to suffer this way.

Lucylooloo
Lucylooloo
in reply to Hidden

This is so bad I ve been out this morning and taught I d never get home to rest the fatigue is terrible. it’s also terrible how your life changes over night. How long are you on prednisone now ?

Hi Maureen,

I don't know anything about GCA, am sorry you are feeling so poorly, & hope your doc can help.

I found that when my friends looked up PMR they got right on my wave length because I no longer had to explain.

Dealing with PMR, (GCA) and Prednisone is like trying to stand upright on a basketball!

Dxd 1/2018

On DL's taper plan toggling 8.5 / 8

Hi Lucylooloo, I am surprised that since being on 60mg last November, you are now down to 8mg. That seems too fast for me. The most important thing about GCA is that you taper extremely slowly. Somebody posted the U.K. PMR/GCA newsletter on line here in which there was an article on tapering steroids. You might search for it in google. The title of the article is: “Our Approach to the diagnosis and treatment of Poly myalgia Rheumatica and Giant Cell (temporal) Arteritis”. I have had GCA since last July and am only now down to 5mg. Good luck. I hope things get better for you soon.

PMRpro
PMRproAmbassador
in reply to Stella3

The link for the paper:

rcpe.ac.uk/sites/default/fi...

Lucylooloo
Lucylooloo
in reply to PMRpro

This is great will get it printed out to have 😉🙏

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