GCA and PMR

[TraceyK1964]

I was diagnosed with PMR in February and started on 20mg steroids, this worked ok, I’ve had got down to 12.5mg until yesterday when I started having symptoms of GCA I’ve now been put up to 60mg as a precaution until I’ve had tests for GCA. I’m worried sick about taking so many steroids just wondered if anyone else has been in this situation. I’ve also been signed off work for a month and I’m sure my boss doesn’t believe there’s anything wrong with me.

[DorsetLady PMRGCAuk volunteer]

Hi and welcome,

Many have been on 60mg - and above, and whilst not pleasant at times, you won’t be at that dose for long.

As you have been given 60mg, do you have any sight issues? That’s usually the recommended dose if you have, 40mg is usually given if no sight disturbances. ..

Other than being signed off work, what other advice have you been given? and what tests for GCA?

Maybe have a look at this - then you can explain to boss what you have,

healthunlocked.com/pmrgcauk...

I was started on 80mg [long story] for 2 weeks, then 60mg for another 8 weeks and then successfully tapered to zero,- and have been off Pred for 8 years… and as I said high doses of Pred may not be pleasant but they are necessary- and have caused me no long term issues…

You do need to get your workplace on board - and if you haven’t already you do need to engage with HR department, occupational health and union rep if you have one.

[TraceyK1964 in reply to DorsetLady]

Thank you

[SnazzyD]

Hello, there are lots of us who have stared down the barrels of high doses of steroids for GCA and quite a few of us were under 60 on diagnosis. Most people have never heard of it, you can’t see it and we hear the word steroids and panic sets in which isn’t helped by the effect of the steroids making one’s mind race. It isn’t unusual that workplace bosses are sceptical either. Bit by bit you’ll get a handle on it.

It is good you have been signed off for a month as it really isn’t advisable to be trying to go about normal life at this stage. Rest is a very important part, especially in the early months. With tests, timing is critical because they will be affected the longer you are on Pred. They are also used to rule other things out because false negatives happen enough such that a diagnosis may have to be made based on symptoms, effectiveness of the steroids and the lack of anything else showing up. It’s a long business with both PMR and GCA and Pred serves us well though we all complain about it. These conditions do mean we have to adapt to a new life for a while because both PMR and GCA will do their own thing while the Pred protects us. It gets better but sometimes the doctors make it sound as simple as taking a course of antibiotics. Educating your employer is essential but first you need to do your own crash course just when you feel overwhelmed. We’ve all been there!

When you have absorbed DL’s info it would really help those who can help you if you fill in your bio with info like symptoms of PMR, how that went, the GCA symptoms, what the plan is, tests, results etc.

[PMRpro Ambassador]

Hi and welcome!

There are many on this forum who have been on 60mg pred for a short time - and a few who have been on even higher doses for some time in an attempt to protect their eyesight, most of them successfully. You have heard from 2 shining examples who survived.

In the longerterm, many doctors are worried about the cumulative dose - I've been on relatively high doses, in the teens, for well over 10 years and have suffered no adverse effects we can identify. But I have been able to function well which was what mattered.

Stick with us and you will get through it too,

[TraceyK1964 in reply to PMRpro]

Thank you so much I’m definitely feeling more positive. I’ve never been a person to sit around and take things easy but I guess I’m gonna have to learn to listen to my body.

[PMRpro Ambassador in reply to TraceyK1964]

You are - and understanding that puts you in a far better place. Denial doesn't work!

[SnazzyD in reply to TraceyK1964]

I can tell you this forum is bulging with doers and hectic people with the odd athlete thrown in. Learning to slow down feels counter intuitive especially when the Pred makes the body go into a weird jittery, weak hyperdrive.

[agingfeminist]

I'm another one! started at 20 mg...2 months later suspected GCA and on 60mg for over a month. Then I found this forum...and it has saved my life...though I found it very very hard to take the advice to slow down....but I do wish I had taken it sooner....it is now 5 years later and last month I reached zero pred...now walking around fearful of its return.

The problem is that you don't look really ill...though I did get a moonface for a while...people just can't grasp what it means to have PMR/GCA....you look ok therefore you are ok...and you don't have cancer so what's all the fuss about!

It can be a long bumpy journey...but the support and advice here is excellent. Good luck.

[DorsetLady PMRGCAuk volunteer in reply to agingfeminist]

now walking around fearful of its return

Don’t be fearful.. just be mindful you know the signs - and not every little niggle is GCA nor PMR returning, it’s life. 😊,

[agingfeminist in reply to DorsetLady]

Thank you. I know I am being ridiculous. Just finding it hard to adjust...also under so much stress...and feeling helpless. I am so grateful for all your wise words that have accompanied me on this journey...

[Sophiestree]

Don't go mad now you are taking 60mg, they give you a false impression of how you are and what you can do... it will come back to bite you otherwise.

it's overwhelming and all consuming at the start, but you're in the right place. Everyone on here has been there in one form or another.

[AmberGamble]

Hello! I was in a similar position at Christmas, the sudden onset of what was PMR plus secondary diagnosis of GCA due to vision/eye issues plus excruciating headaches. Because I was a long way from home at the time I had to be kept at high dose 60/70 mg Pred for 6 weeks until I got back to U.K.

It was very scary indeed! SnazzyD describes it very well.

Because I didn’t get to see a Rheumatologist on the NHS here on my return (nor as yet) and had to receive instructions via a disinterested GP, I’ve found these past months very difficult - but I have had great help from this forum.

I manage the taper myself thus far, and am down to 18mg at present. However I have had flares so have had to go back up when necessary.

I have a further complication of having developed steroid induced hyperglycaemia which TBH has been a nightmare but hey ho….

The more positive news is that I got to see a Professor privately last week who was ‘appalled’ at my lack of treatment/support and had agreed to take over my care in the specialist centre he works in. Hopefully we will be able to start looking at steroid sparing meds to enable me to better control the SIH but I know this will take some time.

It’s been very tough adjusting to all of this, but I’m sure you will find your feet and feel more able to cope with these unpleasant conditions which seem to come from out of the blue! Very best wishes x

[Fortunada]

Hi Tracey

I’m sorry you are going through this.

I was diagnosed with GCA in 2022. I was sick for one month until I went to doctor and sent to hospital next day after blood tests. There I was diagnosed.

I too started at 60mg prednisone. It took 6 months to reduce to zero. And also took Actemra for 12 months. I really looked after myself during that period, still do It went to remission by the time I finished with both medications and hasn’t returned. I feel great now.

On facebook there is a good UK page for British people with GCA: Temporal Arteritis aka UK. I found this and other groups very helpful.

Take good care of yourself 🥰

[DorsetLady PMRGCAuk volunteer in reply to Fortunada]

Not sure that fb page is supported by the charity -is it? We would always recommend following the official charity.... certainly early days.

Sounds as if you had an easier stint with your GCA than many…

[Stella3]

Hi Tracey I am from the UK but live in USA. I had the same experience. Starting with PMR and then developed GCA for which I had a temporal biopsy to diagnose it. I was immediately put on 60 mg steroids. It did stop my terrible headaches , double vision etc, so I advise you to go with it, even though it does have some side effects which you may or may not have. I am sure that gradually your steroid dose will be lowered.

Surely a letter from your doctor will explain your situation to your workplace. Good luck.

[AtopicGuy]

To put things into context, organ transplant recipients take powerful immunosuppressive drugs every day of their lives, and some autoimmune diseases require prednisolone doses up to 100mg/dy.

[Myfoe]

fear not I started at 50mg yes I had side effects but I also felt so much better you will not likely stay up that high for long I dropped quickly then slowed after 15mg I struggled at 12.5 added methotrexate struggled again at 10mg added Kevzara now I am at 5.5 taking it very slow .5 every 3-weeks hang in there