Suspected GCA after April Diagnosis ? Not confirmed yet

[zarzis]

Hi

Other than a Chronic back pain and normal other conditions etc, I was feel for around 4 months off par, and then I had a very tender scalp, my eyes felt as if they needed wiping every hour or so, I had Jaw ache, and a headache but was not like a normal headache, my head was really not willing to cooperate with my demands, and generally felt lousy, so I decided to pay my GP a visit.

She checked with senior Partners and said she thought it was GCA.

I am getting a little anxious owing to the Diagnosis GCA not being confirmed after 7 months.

The GP thought it was GCA and immediately put me on 60 mg of Prednislone and next day I felt the best in years, however that soon vanisished and is a distant memory now. The GP sending me for two blood tests one of which was ESR. The following day my she the GP rang to tell me that the ESR test result was 86 (saying over 12 was high!)

My GP said he was treating my condition as GCA and still is, I went 4 days after initial diagnosis for a Temporial Biopsy proved to be negative, however after treatment for 4 days on 60 Mg Pred quite common to show negative, so I was informed.

The side effects are awful on the Preds, as I had a Flare after 3 months after reducing to 14 mg on original 60 Mg Preds, and was put back on to 80 Mg and side effects are really crippling me, I cannot do many things and sleep is virtually non existant, really feeling very low, I hope someone here has similar to me and can tell me how long I will need to recover from the preds, hope for positive news

Peter

Picture after Biopsy, very quick and no pain then or after

[SheffieldJane]

Bless you zarzis, sorry you have suffered so much and are in limbo about a final diagnosis. Everything you say makes perfect sense. It sounds like you are on top of what's happening, even if your doctors are reluctant to be definitive. The treatment would be the same anyway.

I have found that 10 mgs of Amitriptyline before bedtime has bought me some hours of sleep. I usually need a sleep in the day too.

I am so grateful that my depression lifted with Prednisolone and stayed lifted. I had been low and unwell for years. Finally having a diagnosis helped I believe. I am sorry you feel low, I think it is the worst thing.

Are you familiar with the very gentle tapering for Prednisolone reduction, that PMRpro has posted on here. It's the only way to get free of the wonderful, terrible drug we're on.

Thank you for being so reassuring about the GCA biopsy. I found that particularly helpful.

Go well, I hope your recovery becomes more apparent soon.

[zarzis in reply to SheffieldJane]

Hi SheffieldJane

Its people like you and Dorsetlady and PMRpro that give me encouragement and with patience a better future, you all have been so kind, and the planning for my completed Pred is November next year thats without a Flare.

Your sleeping Pills I will mention to my GP on my next visit , to solve that problem would be so wonderful, what I would give for 6/8 hours of undisturbed sleep right now.

Very many thanks again wish you and all PMR and GCA sufferes the very best

Peter

[PMRpro Ambassador in reply to zarzis]

Don't plan for an end of pred - it just leads to disappointment when it doesn't work. You cannot reduce pred in PMR or GCA to a timetable. They came when they wanted and they go when they want. Of all the people I know with GCA only one has managed to get off pred in 2 years and she now has PMR! The majority need longer - even without flares and any flare means a longer period of management with pred.

If you have GCA then your GP should have referred you as an emergency - as they would have referred a suspected heart attack or stroke. You wouldn't be waiting 7 months there! If they have just referred you as a routine patient you may have to wait even longer - and the only people to blame are your practice who should know this isn't as simple as that and they are out of their depth.

[DorsetLady PMRGCAuk volunteer]

Hi zarzis,

Can't really understand why GCA hasn't been confirmed - other than the negative biopsy, which as we all know doesn't necessarily rule it out.

Think you need to talk to GP, first to get a referral to a Rheumy - assume you haven't seen one - and second to discuss Pred side effects, especially the lack of sleep - mine suggested Nytol every 4th or 5th night to try and break the routine and at least get one good night's sleep. But not to be taken every night! Depression is a known side effect of Pred, so we may need some help - if so, then please get it. Don't soldier on alone - it won't help in the long run.

The side effects will reduce as you lower the Pred, but would say that your first attempt was much too fast for your body to cope. GP's plan?

Sounds as if your GP is not sure how to treat GCA (and there can be complications) - are you having regular blood tests before reductions for example?

You need to see an expert- and the sooner the better.

Do hope you soon get some positive news.

[zarzis in reply to DorsetLady]

Hi Dorsetlady

Many thanks for your information, My GP did say he would refer me to a Rheumy however I have heard nothing as yet.

I am having monthly Blood Tests Full Blood Count, ESR also for Sugar and Kidney, all seems good so far,

My Pred situation is 28/07/16 increased from 14 Mg back up to 80 Mg as had an eye problem and reducing to todays date to 40 mg and on the 07/10/16 will be down to 30 mg so on the home straight from then on.

Really appreciate you reply and assistance very much

Peter

[DorsetLady PMRGCAuk volunteer in reply to zarzis]

Good, hopefully you will see get to see Rheumy. Just a small word on your reductions - just make sure YOU feel okay in yourself before you reduce, even if blood markers are alright.

Don't reduce relentlessly, just because that's what your plan says, make sure your symptoms are under control. If you have had one flare due to too fast a reduction, you are more susceptible to another, so just be sensible. Not trying to discourage your reductions, but slowly is the way forward. Good luck, but take your time - it's not a race! Even if the side effects are nasty!

[PMRpro Ambassador]

If you were reduced from 60mg to 14mg over a period of a few months it isn't surprising you have had a flare.

If he isn't going to refer you to a rheumy, perhaps your GP would like to read this paper:

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

which provides a top expert rheumy's approach to managing both PMR and GCA - where you will see that in GCA you would start at 60mg and you would take at least 5 months to get to 20mg, spending at least a month at each dose providing you had no return of symptoms.

How long it will take to "recover from the preds" is a "how long is a piece of string" question. The pred has cured nothing - it is merely managing the symptoms of the GCA and you will need some pred as long as the underlying cause of the GCA is active. It is an autoimmune vasculitis, a chronic disease that lasts more like a minimum of 2 years than a few months - and frankly, while your GPs did recognise the possibility you had GCA, GPs are rarely really up to scratch about managing it well. It is a rare disease - even some rheumies have never seen it. The fact that (as I understand it) your GPs reduced your dose from 60mg to 14mg in a period of 3 months is a clear indicator of that fact. GCA cannot be hurried and after 3 months you should have still been on a dose more like 30mg and certainly above 20mg. The result was to be expected - a flare. There is study evidence that there is still inflammation after 6 months at above 20mg pred.

If the biopsy was negative you won't get a confirmation of whether it is GCA - the diagnosis and management is being made on the basis of the symptoms. Having a negative biopsy doesn't mean it isn't GCA, it means they couldn't find what they were looking for, the giant cells that give the illness its name. There are a lot of reasons for that, not least that it wasn't affecting that particular bit of artery - but that certainly doesn't mean you didn't have GCA elsewhere.

You need referral to an expert - or at the very least a far more realistic approach to management. As the dose reduces, so will the side effects. But if there is risk to your vision - I don't think there is a pred side effect worse than that.

[zarzis in reply to PMRpro]

Hi PMRpro

Many thanks for your information, was so kind of you, and I found the link to the rcpe.ac.uk/sites/default/fi... very informative, as you say a few side effects compared to vision loss, is not even an option, Many thanks again

Peter

[Nethyman]

Hi Peter

I had similar experience to you, without biopsy.

My flare was 100% more painful than original and is taking longer to control than before. From what I have learnt tapering should be taken very slowly to match your symptoms. I am currently on 50mg which does not take me through the full 24 hours without pain, but it is getting better slowly. I will remain on 50mg for 4 weeks at least.

Very weak with the PMR and side effects of the steroids, but that is tolerable compared to the severe pain experienced previously. Sleep is a problem but better to wake up without pain, can always dose-off on the settee!

Best wishes

David

[zarzis in reply to Nethyman]

Hi David

Thanks for your message, nice to know there are others out there like me, today I reduced to 30 Mg so feel on home run now, but my back ache is not good, I think the Pred halted the pain for a while, but back with a vengance now, Sleep is a problem, but as you say a doze on the settee as and when makes up for normal nights sleep.

Wish you well David and thanks

Peter

[PMRpro Ambassador in reply to Nethyman]

Nethyman - have you got PMR or GCA? If you "only" have PMR then 50mg is far too high a dose to start on. If you have GCA then on a 50mg dose of pred you shouldn't have any PMR-type problems.

[Nethyman in reply to PMRpro]

Hi PMRPro

We have exchange posts previously.

I have both PMR and GCA. Diagnosed in May 2016, serious flare up of GCA in September 2016. Went back to 60mg now down to 50mg for four weeks. Still suffering from headaches, but slowly getting milder.

I don't think Prednisolone makes PMR go away. Muscles are still very weak, but I had much more movement almost from day one.

David

[PMRpro Ambassador in reply to Nethyman]

No, it doesn't make PMR go away - what I meant is you shouldn't have PMR-specific symptoms persisting on a GCA dose. Yes, I had improved movement with PMR 6 hours after taking 15mg!

If you still have GCA symptoms I'm surprised you've been told to reduce - the usual practice is to stay at the starting dose until the symptoms have improved as much as they are going to. Then you start to reduce.

[Doralouise77 in reply to Nethyman]

Hi Nethyman,

You said your flare was "100% more painful than original"....I'm assuming you're talking about a headache? If so I'm wondering if it was the same type of headache as the original, i.e. the same location?...were there other symptoms present?....or not present?....did you try any pain meds or was Prednisone the only thing that helped?....and you said it is "taking longer to control"....are you still having symptoms on 50 of Pred?

Sorry for so many questions, thank you,

Cheers

[Nethyman in reply to Doralouise77]

Hi

Yes, the headache, but much more severe and moved predominantly from right eye to left eye.

Swollen bloodshot eyes. Puffiness under the eyes. I have seen the opthamologist who confirms eyesight ok.

Co codamol does not help as this only masks the pain and when this wears off it is extreme. Prednisolone is the only drug that helps at the moment, but a single dose only has beneficial effect for 18/20 hours and pain returns, so I've split the dose over 24 hours. 25mg mornings, 25mg lunchtime. This works for me!

Still having symptoms on 50mg Prednisolone, but much. much milder.

David

[Doralouise77 in reply to Nethyman]

Thank you Nethyman, hope things go well for you.

Cheers