GCA

[Phed]

I have been on Prednisolone since August 2019 for just GCA, I started on 40mg and have gradually got down to 2mg, I have started to notice pains in the groin area and legs especially when getting up, the neck (right hand side, my GCA started on the left side of neck) and shoulders could it be withdrawal symptoms after being on Steroids for so long? I never had any of the groin or leg pain before Steroids, I guess the neck could be due to being in front of the computer more than normal. Has any one else experienced this and if so how long does it last for?

[DorsetLady PMRGCAuk volunteer]

Hi,

To have gone from 40mg to 2mg in less than 18 months is very quick (despite you saying “being on steroids for so long”). Most people with GCA are nearer 4 years.

You don’t say how long you’ve had issues, but neck and shoulder pains typically sound like too little Pred, so a flare rather than withdrawal symptoms. Explanation below *

The groin, leg pain, although not always affected, could well be GCA symptoms.

If it’s a flare, then it will last until you take extra Pred to relieve it.

*Explanation of steroid withdrawal v flare

Steroid withdrawal (or body getting used to new lower dose) usually shows immediately new dose is taken - and lasts between 2-5 days. It varies from a general feeling of being off colour to a return of symptoms pre diagnosis. For some it can be eased by paracetamol.

A flare happens when you’ve gone below the level of Pred your illness requires, and take anything from a couple of days up to 2 weeks to materialise- and (usually)the symptoms are similar to those pre diagnosis. Paracetamol will not help. The only thing that does is an increase in dose. Sometimes a return to previous dose is enough, but if it’s got too bad then it’s recommended to add 5mg to the dose you last felt alright - stay there for 5-10 days and then drop back down to just above the dose you flared. Stay there for 2-4 weeks to make sure all okay before you try and taper again.

[Phed in reply to DorsetLady]

Thank you for your reply, I guess to me it seems a long time on Steroids because the consultation seems to want to get you of them as quick as possible and go on MTX which I don’t feel happy doing, I never realised it could take up to 4 years on Steroids for GCA, I’ve had the pain for about 2 weeks now the groin pain is gradually improving and the neck pain does seem to be responding to paracetamol but I don’t want to keep taking those all the time, going to have blood test done next week to see if any thing shows up

in their but from what I have read on here the often come back inconclusive.

[DorsetLady PMRGCAuk volunteer in reply to Phed]

GCA like PMR is what is called a self limiting illness - that is it comes comes out blue (apparently - but there is usually one or two things that trigger it), hangs around for as long as it like, and then (hopefully) goes into remission. We say remission, because it CAN re-occur, not commonly but it can.

Unfortunately most of the “official” guidance quotes 2 year period....and sometimes that’s true, but not always. Certainly not in my case - 18months with a misdiagnosis, and then a further 4 plus years on steroids.

Had I been under a Rheumy all the time during treatment s/he may have rushed me off the steroids a bit quicker, and I may have managed it, but after a couple of appointments I was referred back to GP....2 different ones. First was ultra cautious because she’d missed GCA ( see profile and you’ll know why) - and second one was older wiser and let me do my own thing with his guidance.

So my GCA was well over 4 years, nearer 6.

Bloods are not always conclusive, and very often lag behind symptoms anyway....which is way we always say symptoms are the key.

[PMRpro Ambassador in reply to Phed]

There is no evidence at all that mtx replaces pred for GCA. It MIGHT smooth hiccups in reductions. I do wish they'd stop harping on about it ...

[123-go]

I agree that neck pain/stiffness could well be due to more time spent in front of the computer. Groin pain I can't comment on unless you've strained yourself lifting or moving something heavy. Best to get it checked out, Phed.

[Phed in reply to 123-go]

I have spoken to the doctor today I was probably trying to convince myself it was just withdrawal symptoms and needless to say deep down I think I knew it wasn’t, so now it’s back to 4mg of Pred, she’s amazed that I had gone down from 40mg in August 2018 to 2mg .

[123-go in reply to Phed]

You're fortunate to have a doctor who listens 🙂. I hope the 4mg Pred does the trick. Thank you for the update.

[Phed in reply to 123-go]

I must admit it was a struggle at first to get my diagnosis for GCA (7 doctors in 3) but once diagnosed they have been brilliant and can’t do enough for me.

[123-go in reply to Phed]

That's wonderful. So pleased for you.

[Phed in reply to 123-go]

Thank you.

[PMRpro Ambassador in reply to Phed]

I think once they realise what they nearly missed they feel a need to make it up

[Phed in reply to PMRpro]

Definitely agree with you.

[PMRpro Ambassador in reply to Phed]

Sounds a sensible person - even if for a few people it is perfectly possible ...

[Phed]

Thank you for your reply’s the pains have gradually started to come a couple of weeks after I reduced to 3mg of steroids on 24th Dec, they weren’t to bad so I reduced to 2mg on 21st Jan as advised by my rheumatologist, I did speak to my Doctor yesterday who has taken over my case and is very good with monitoring my GCA, she has indicated it could be withdrawal symptoms but to be on the safe side had booked me in for blood tests to see if anything else is going on.

[Phed]

I was surprised to hear most people with GCA are on Steroids for nearer 4 years, the rheumatologist never tell you that they just want to get you off them as quick as possible.

[CricketMonkey in reply to Phed]

I’m just storing the “nearer 4 years” bit away ready for my telephone consultation tomorrow with a rheumatologist who seems to want me on a steroid sparer after 18 months and tapering to 7mg!

[RoadTrip in reply to CricketMonkey]

My hospital Rheumatologist offered me mtx after 3 1/2 months of GCA when at 25mg, I said no thank you and would continue with my planned reductions. He definitely wants a fast taper!

[Phed in reply to RoadTrip]

I was offered mtx while still on 30mg and that was after 2 months and I refused as I have known people on it (including my son) and they soon stopped taking it due to numerous side effects, like you I have just continued to tapper by 1mg a month and now on 2mg, my aches don’t seem so bad today so fingers crossed it could be sitting in front on the computer for to long as I don’t really want to add PMR to my list as well, I’m looking on the positive side and hope to be off steroids soon.

[RoadTrip in reply to Phed]

My views exactly re side effects, why add new ones when enough from pred.

Well done on the reduction, my fingers crossed for you that off pred soon.

I have a way to go but progressing ok at moment. I had PMR symptoms in legs for five weeks before GCA symptoms and diagnosis, so unfortunately waiting for PMR to return as pred reduces.

[Phed in reply to RoadTrip]

Exactly I have only just started to sleep properly and have stopped the midnight feast unfortunately mainly on chocolate. As far as I’m aware I didn’t have PMR symptoms before being diagnosed with GCA, I just had 3 weeks of nonstop headaches and stabbing pains in the side of my head no end of trips to doctors everything from tooth infection to ear problems but luckily hit on the right doctor after 3 weeks who was on the ball straight away, how long have you been on Pred? I’m now waiting for a cataract operation which they have put down to the steroids true or false I don’t know, thank you for your fingers crossed that you hope I will be off them soon, hope your reduction goes well as it would be so nice to get of the steroids.

[PMRpro Ambassador in reply to Phed]

Pred does tend to make cataracts progress more quickly than without - but after 11 years of pred I have no sign of them. I almost always wear sunglasses when outside in any brightness and jinasc was told to get transitions lenses as soon as she started on pred and her existing cataracts didn't progress in the 5 years of pred either. Apparently sunlight is very bad for them.

[RoadTrip in reply to Phed]

I had typical leg problems of PMR, not able to get out of bed in morning without help from hubby and had to use arms to help lower myself onto loo. I did not seek medical advise as only 5 weeks of problems and thought it would just be dismissed as too much running ( couch to 5k) or symptom of menopause.

GCA symptoms started late July 2020, first with extreme jaw, teeth pain for a week, which was unsuccessfully treated with antibiotics, then headaches set in, on 70 mg pred 5 days after that, after I suggested GCA, which I felt fairly certain I had given PMR symptoms, despite youngish (50 + per guidelines) age of 55 and blood test showed very high CRP levels.

Have had a number of side effects from pred, initially bad insomnia, but that’s now improved, but still up for 2am pred dose. Cushingoid, despite being good on low carb and salt diet ( have to admit just an occasional single chocolate treat has crept into diet post Christmas), and sweats ( but that may also be menopause related) amongst others.

Sorry to hear about your cataract, one of my first purchases were photo chromatic glasses which I always wear outside to hopefully minimise cataracts, can only try, but pred may have other ideas.

[PMR2011 in reply to Phed]

I found Pred withdrawal symptoms came on within a day or two of dose reduction and responded to Acetaminophen. My flare took several days to surface and did not respond to other pain meds. Labs can lag behind symptoms so makes it difficult to tell by them.

[altywhite in reply to Phed]

My rheumy told me it could last up to 2 years!! I am now 5 and a half years in and on 5mg!! You may need to increase your pred and remember....blood results don't always correspond with symptoms. Good luck and take care.

[Phed in reply to altywhite]

Thank you.

[SnazzyD]

As well as what has been said do look closely at what you’ve been doing. By low doses I had ligament and muscle issues especially in the groin and sitting for a long time caused shortening so I had to do proper but gradual stretching. I was also particularly prone to muscle and ligament pulls in the shoulders so sweeping the patio, cleaning windows or lifting some heavy shopping made me pay. This would have been aged 56/57 and I started aged 54 and very fit, being able to do heavy labour in the garden all day.

[Phed in reply to SnazzyD]

Thank you for your reply, I must admit since this latest lockdown I haven’t been doing much walking mainly sitting which doesn’t help the problem at all, I have decided I need to make myself go out for a walk every day, and of course sitting in front of the computer for longer than usual doesn’t help so I do need to start looking at my life style and improve it, I’m 69/70 so I guess some of the aches could be due to old age creeping up on me☹️

[SnazzyD in reply to Phed]

The task is gently keeping range of movement going, even if this turns out to be PMR.

[Marijo1951]

Groin pain to me is one of the main characteristics of PMR. I'm sure your doctor will be looking out for that possibility.

[PMRpro Ambassador]

My immediate thought is that you are one of the about half of patients for whom PMR is part of their GCA - but it is very often missed at the start because the symptoms are relatively mild and always well managed by GCA doses of pred. Only when you get down to a low dose that is no longer enough to manage the PMR bit do you notice. The fact you have got to 2mg before it has apeared makes me think that is likely. 4mg was "your" dose for the present - already a really low dose and not far above the 2-3mg Prof Dasgupta says he leaves a lot of patients at as it reduces the risk of relapses.

[Phed in reply to PMRpro]

Just out of interest before I was diagnosed with GCA I tried no end of different pain killers to try and relieve the horrendous headaches but nothing touched it till I started on Steroids, is that the same as PMR? I thought it might be worth a try taking a couple of paracetamol first to see if that might relieve the pain before I up the steroids again.

[PMRpro Ambassador in reply to Phed]

No - they were almost certainly GCA headaches. PMR is stiffness and pain in limbs, shoulders and hips. But they could well have been absolutely negligible compared with a GCA headache. Try painkillers if you wish - but bear in mind they rarely help with PMR pain and 1mg more of pred is safer than long term use of paracetamol. One friend was persuaded by her GP to use paracetamol because he was so convinced her returning pain was osteoarthritis. Just a few weeks later she had a routine blood test - which resulted in an emergency liver scan because the liver values were sky high. Scan totally normal - all due to regular use of paracetamol. There is a very narrow gap between effective dose and overdose, especially with paracetamol.

[Hidden]

Morning, I'm no expert re all of the symptoms of GCA....I had three of them. Yours sounds more like symptoms for Polymyalgia Rheumatica, as I had same symptoms. Neck and shoulder pain, occipital bone tenderness, hip pain and buttocks. But we're all different !

[PMRpro Ambassador in reply to Hidden]

Occipital tenderness is more likely to be GCA than PMR.

[Hidden in reply to PMRpro]

Thing is I've suffered from occipital tenderness for yrs and yrs, so really wouldn't know whether to contribute it to GCA or not. Not sure what else causes it.

[Phed]

Who was I kidding, I guess I wanted to think my neck, shoulder and groin pains where due to lack of exercise during lockdown but after a telephone consultation with my Doctor again they have confirmed it’s more like PMR as both go together and it’s been more difficult to get about instead of improving so it’s now increasing the steroids again which is really annoying as I managed to get down to 2mg from 40mg in 18 months and was told on numerous occasions by Doctors how well I was doing, I now have till 22nd March to get on top of it again as I’m having a cataract operation and needless to say I don’t want to make a fool of myself and can’t get up of the table once they have done the operation.

[PMRpro Ambassador in reply to Phed]

Too well! Speedy reductions are predictive of relapse - even when they appear to go well. In PMR the median time to get to 5mg from lower starting doses (15-20mg) is just under 18 months (that's for half the patients) and going at more than 1mg per month is dodgy.

Look at my comment above - I think if you go to 10mg for a week or two you will very likely be fine, then drop to 7.5 and possibly 5mg if the trouble started at 4mg. Even 1mg can make an enormous difference but I think you are more than 1mg lower than what you need.

[Phed]

Thank you for your reply, why are they so keen to reduce steroids so quickly when they know you could possibly have a relapse, when I was first diagnosed with GCA in August 2018 I don’t recall any PMR symptoms so I guess it has come as a shock to learn I have that as well now, I will go up to 10mg like you have suggested for a week or two and hopefully that will give relieve from the aches and pains.

[PMRpro Ambassador in reply to Phed]

I don't really know - can't see inside some theumies heads and I don't know if that is a good or a bad thing! There are some who really don't look at patients as individuals and possibly don't appreciate how much it can vary from one to another. Some are very good and have noted the bit in every single reduction suggestion in the medical literature that says doses and tapers must be individualised. Others have a rigid fixed taper over a couple of years and stop pred. That might work for maybe a third of patients - but not the rest and then they take the huff and blame the patient for failing to reduce the dose. I am fairly sure there are a lot of patients who left their rheumy because they had a kind and caring GP who rescued them - after all, the majority of PMR patients in the UK are cared for by a GP. - either because they are never referred in the first place or because the rheumy thought it beneath him/her and discharged them to GP care. And probably even more are sitting at home and trying to cope in pain.

[Phed in reply to PMRpro]

I have been discharged from the Rheumy and will definitely agree I have a very caring Doctors practice, I’m sure they were all given good talking to when they couldn’t diagnose my GCA, I had a telephone consultation yesterday with the Pharmacist at the Doctors which I thought was going to be a waste of time but I guess he must of done some studying since I saw him a year ago as this time he knew everything about it unlike a year ago when he thought it was a virus and couldn’t have been more helpful.