Prednisolone reduction and Anxiety

[Ellie11711]

I have been taking prednisone for 9 months now for GCA I began with 60 my per day and have reduced to 8mg per day. My consultant increased my dose to 10mg a day because of lack of adrenalin, but I am still struggling with nerves and anxiety, I’m wondering if there is a medication that can be prescribed along with the prednisolone for me to help me with this problem. I am 78 years old. Thank you.

[SheffieldJane]

Anxiety is pretty common with tapering Pred., worse if you go too fast, there may be a suitable anxiety medication that your doctor can prescribe. I am struck however, just how fast the doctor has tapered you off Prednisalone. GCA lasts on average for about 4 years and tapering should never be more than 10% of your dose. How do you feel physically? Do you ever have GCA symptoms now? Does your doctor believe that your diagnosis was correct? Certainly, you would feel better with a much slower taper - say about half a mg every 4 weeks or so. Have a read of FAQs and familiarise yourself with the best management of GCA, paying particular attention to tapering programmes. Look to the right of your screen for threads about anxiety as well. Best wishes Jane.

[Ellie11711 in reply to SheffieldJane]

Hello Jane,

Thank you for responding to my message. The diagnosis I think is correct, I had all the symptoms of GCA and really high elevated blood tests for inflammation. The rheumatologist doesn't think there is GCA present, and the reduction is going to be much slower I have to stay on 10mg for 6 weeks then reduce to 9mg. My big problem at the moment is anxiety, I feel awful and shaking, nauseous.

[DorsetLady PMRGCAuk volunteer in reply to Ellie11711]

My big problem at the moment is anxiety, I feel awful and shaking, nauseous.

Most definitely adrenals struggling…the only way is a very slow taper - preferably 0.5mg per time after the 6 weeks at 10mg.

Even though you may not think so probably not helped by the previously fast taper….and tbh not sure Rheumy can say he thinks no GCA at present. At 9 months, it’s very likely still there, but the inflammation is being controlled by the Pred - not quite the same thing.

Have a look at this re adrenals [from THE FAQs]- and request help from GP with anxiety -

healthunlocked.com/pmrgcauk...

[SheffieldJane in reply to Ellie11711]

Hi Ellie, Our most experienced people have given their advice to you. I am sure we would all be interested in how you are getting on. I hate to think of you shaking and feeling extreme anxiety. I cannot help thinking that your current doctor has mismanaged the treatment of GCA. X

[Ellie11711 in reply to SheffieldJane]

Hello Sheila,

Thank you for your concern it is appreciated. I don't have any GCA symptoms at the moment thankfully, but the tapering needs and is being slowed down. I have a telephone appointment with my GP tomorrow morning, hopefully, he can prescribe something for the anxiety which I hope will allow my own system to wake up and create balance. It is very difficult there is so much to learn about steroids, they just seem to take over your body. I read one reply and it explained there is no short cut it is a process you have to go through when tapering. It's horrible. Ellie

[SheffieldJane in reply to Ellie11711]

Was that an auto correct 😂? Sheila?

I am glad to hear that you have it in hand. We are all individuals and some suffer this stage of tapering more than others. I am on 5 mgs myself, so I do empathise, strongly. It would be very unusual to have GCA for under a year and I would want a second opinion from another Rheumatologist who was experienced and up to date in the treatment of GCA.

Is your GCA in your temporal arteries thereby putting your precious eyesight at risk? Mine is not and has less clearly defined symptoms such as an unusual headache, eyesight issues and, jaw pain with chewing. I was diagnosed by a specialised ultrasound scan which showed abnormal cells in my armpit.

Good luck in your discussion with the GP.

[Ellie11711 in reply to SheffieldJane]

Hello Jane, apparently I had the classic symptoms of GCA, a very sore head, couldn't touch it, headache, jaw pain making it difficult to eat, strange feeling behind my eyes, pain going up from the back of my neck and the blood tests showed very high inflammation levels. I didn't have a scan, I was put on 60mg a day at the hospital and have been reducing since, and having monthly blood tests to check inflammation levels. I didn't know it could appear in different areas of the head. Thankfully since the first diagnosis, I haven't had further symptoms, it's very scary for me and I try not to think too much. I am a widow and it's not easy.

How long have you been taking Prednisolone?

Ellie

[SheffieldJane in reply to Ellie11711]

I have been taking Prednisalone since 2016. Firstly for PMR then non- cranial GCA developed 4 years later, I had to start again at 40 mgs. It must be difficult suffering all this if you are on your own. Your symptoms certainly sound text book and I am glad they are in remission. Keep us updated. X

[Ellie11711 in reply to SheffieldJane]

Hello Jane, I had a telephone appointment with my GP this morning. He has written a low-dose prescription (I don't know what its called as you can probably tell I’m not medical) to help me sleep and with the anxiety, which I will collect later today, so fingers crossed I hope to be feeling better soon. x

[SheffieldJane in reply to Ellie11711]

It could be Amitriptyline. I used to take 10 mgs an hour before bedtime and it did help my sleep. It doesn’t suit everyone but it’s worth a try. I am not medical either, as you can see from the further GCA facts provided by DorsetLady and PMRPro.it is a complex disease.

[DorsetLady PMRGCAuk volunteer in reply to Ellie11711]

I didn't know it could appear in different areas of the head. 

As you can see from the picture I attached to reply to SJ, any artery in the head can be affected by GCA [not necessarily all-my Temporal arteries weren’t] - which is why some get jaw claudication and earache as well as the overall tender scalp…

[DorsetLady PMRGCAuk volunteer in reply to SheffieldJane]

Is your GCA in your temporal arteries thereby putting your precious eyesight at risk?

Despite what many seem to think, the temporal arteries do not feed the optic nerve, it’s the ophthalmic artery…..much deeper within head so shown as lighter colour in picture.

Arteries in head

[SheffieldJane in reply to DorsetLady]

This is useful, thanks.

[PMRpro Ambassador in reply to SheffieldJane]

It isn't GCA in your temporal artery that puts your sight at risk - it is GCA in the opthalmic artery, deep in the brain that supplies the optic nerve.

[SheffieldJane in reply to PMRpro]

Dr Sarah Mackie ( Rheumatologist) does feel my temporal arteries as part of her examination. Presumably, my Aortic Scan, tomorrow, is looking at my Aortic Artery, never having had GCA in my Cranium?( touch wood).

[DorsetLady PMRGCAuk volunteer in reply to SheffieldJane]

Temporal arteries are easy to get at for examination-whether by feel, sight or biopsy -and can obviously be a guide -but (as we say about many things) aren’t the be all and end all in diagnosis.

[SheffieldJane in reply to DorsetLady]

That’s true! All becomes clearer. X

[SnazzyD]

Hello, depending how much you absorb, doses under 10mg can cause anxiety. Above that it can be due to the steroid itself or it could be other factors at play. I do hope they didn’t say it was because of lack of adrenaline as it is lack of cortisol that is the issue. Do read from this link from Mrs Nail’s FAQ’s, about adrenal glands, essential bedtime reading for those on single figures. Your doctor should have explained this but they often don’t. Fast reducing Pred to zero won’t help your anxiety for the reasons you’ll learn but they could have prescribed something to help. Whether you have GCA or not, you can’t rush the last 10mg.

healthunlocked.com/pmrgcauk...

Your symptoms of shaking, nausea etc can be the symptoms of adrenal gland insufficiency and need to be taken seriously, do drops of 0.5mg are better over an absolute minimum of 3 weeks. I did 6 weeks +. Also, as SJ says, nine months is way too soon for being so low, but time will tell. How are your GCA symptoms now?

[Ellie11711 in reply to SnazzyD]

Hello Snazzy, thank you for your response, thankfully I don't have any GCA symptoms at the moment, but I do have anxiety, speaking of GP tomorrow.

Thank you

[PMRpro Ambassador]

There are medications for anxiety that can be used alongside pred - and they should be if they are required.

But as already explained it isn't lack of adrenaline - if that was what was said, I do wish doctors wouldn't use Noddy-language to patients unless they can make it accurate. It is a lack of cortisol and until now the oral pred has been doing the job. As you get lower, the body has to produce its own natural corticosteroid again to top up the reducing pred dose to the level the body uses to function. Until that happens you may have the signs of adrenal insufficiency which include anxiety.

The ONLY way to get the adrenal function back to normal is to persist with the slightly too low level of oral pred which signals to the brain that cortisol is required. There is no magic way past this stage - and by putting you back up to 10mg all that the doctor has done is delay crunch time.

You need to slow down the taper - and while the amount you are on at present seems to be holding the symptoms, it is very unlikely the GCA has gone altogether and it could well return if you go too low on pred so slowing it down will also be of benefit there.