hospital call

[stickychicken]

just had a call from the doctor at hospital who said that the biopsy results show no signs of gca. I have to go back on Monday she also told me to drop prednisolone from 60mg to 40mg. Has anyone else had unconfirmed diagnosis and could you tell me what happens next please. I'm feeling very confused

[HeronNS]

Hi Stickychicken. How long have you been taking pred? It can wipe out any evidence of giant cells within a very few days. There will be GCA experts along shortly, I'm sure, but one thing I can tell you is even when a biopsy is done before pred is started it very often is still negative, as there aren't necessarily giant cells present in the tiny bit of artery wall taken for the biopsy.This is why symptoms and response to pred are taken as more definitive than biopsy results. A positive biopsy is useful in the future if there is ever any question whether you had CGA but a negative result is not a guarantee that you do not have GCA.

[stickychicken in reply to HeronNS]

it was6 days

[tazzi]

hi, how long had you been on pred prior to biopsy? Having started on 50/60mg pred 9 weeks before my biopsy I decided not to go through with it as it was bound to show as a negative result as the pred reduces the liklehood of a positive result anyway! A negative result does not mean NO GCA. If you have symptoms and raised blood markers which the pred has reduced that is usually a confirmed diagnosis. Your gp and/or rheumy should continue with the pred monitoring your symptoms and bloods.Good Luck.

[stickychicken in reply to tazzi]

6 days they did tell me that it doesn't mean I don't have gca and after taking pred the pain in my jaws and head did go away, just occasional headache. I went to see my gp 2 weeks ago after suffering this pain for about 6 weeks so everything is happening very quickly and terrifies me

[HeronNS in reply to stickychicken]

I'm sorry I don't know more about GCA. I don't know how soon reduction from the high initial dose is usually started. But I do know that you need to be very aware of how you feel and if you experience any (I mean ANY) visual disturbances as you reduce you need to seek urgent medical attention. GCA is treated as an emergency as serious as a stroke or heart attack.

I found this article which seems to indicate the high dose should be maintained for about a month and all symptoms, including lab abnormalities, should have resolved before slow reduction introduced. Have your blood markers returned to normal?

emedicine.medscape.com/arti...

I did note the article says some other therapies should be added to the prednisone, but I think these add-ons are something you need to weigh carefully if they're offered to you: namely medication to protect the stomach (most of us find a little food or a small helping of yoghurt is enough to protect the stomach from pred) and bisphosphonates for bone density - which should never be taken without serious research and consideration and also are probably unnecessary.

[stickychicken in reply to HeronNS]

I'm taking all the meds they've offered me, aspirin, calcium and omeprazole for stomach. Thank you for replying to me so quickly. I haven't had results from blood markers yet guess that must be why I have to go back to hospital on Monday they were 47 first time

[Determineddebbie in reply to stickychicken]

I'm in exactly the same boat and terrified ! I'm new to here and think I've mastered a post asking for help ... Will you take a look as we are in same boat ? . I wish you well x

[stickychicken in reply to Determineddebbie]

just returned from the hospital appointment where I saw a rheumy she told me my esr results have reacted well to the steroids but didn't tell me the numbers. She has also given me a reducing steroid regimen which will probably last for about 2 years. She also told me to get monthly blood tests until I get down to 10 mg then to change to 2monthly tests. Also making me an appointment with rheumotology consultant. Good luck to you Determineddebbie let us know how you're getting on x

[Determineddebbie in reply to stickychicken]

That sounds promising what dose are you on now and what's time scale and dose for reducing please ? . Are you pleased ?

[stickychicken in reply to Determineddebbie]

I was reduced to 40mg on Saturday and I have to reduce 10mg every 2 weeks until I get to 20 then stay on that for 2 weeks then reduce to 17and1/2 for 2 weeks then down to 15 for 4 weeks, then reduce each 4 weeks by 2and1/2 until I get to 10 then reduce by 1mg every 4 weeks. and yes I am pleased x

[PMRpro Ambassador in reply to stickychicken]

Unfortunately, while the rheumy may have a timetable, GCA and PMR don't - they come when they want and they go when they want. Be watchful for a return of symptoms and if they do appear stop reducing and contact your doctor immediately.

[Celtic PMRGCAuk volunteer]

stickychicken, as you are already aware, a neative biopsy does not mean that you do not have GCA. They only remove a very tiny piece of artery for examination, and it's quite possible that the large cells they are looking for can escape this small sample.

I was diagnosed from symptoms alone, and my fast response to the initial dose was taken as confirmation of diagnosis. So if you, too, found that your symptoms improved by at least 70% within a few days of starting steroids (it was within hours in my case), that is likely to be taken as confirmation of your diagnosis as well.

That is a very large first reduction in steroid dose that you have been advised to do, especially after just two weeks. My first reduction was from 40 to 30mg, and I considered I was one of the lucky ones in being able to manage as much as a 10mg reduction with the symptoms/inflammation remaining under control! Some others have to do it much more slowly or their symptoms return. Far better to reduce in smaller chunks - that way you can see more easily at which point the inflammation may be breaking through and quickly get on top of it by returning to the previous dose.

Was it an ESR or a CRP blood test that revealed a result of 47? The CRP is considered by many experts to be a better marker of inflammation and once the inflammation is completely under control the reading should be anything between 0 and 5. The blood tests can be a very useful guide together with symptoms when reducing and ideally should be carried out before a planned reduction.

It is understandable to feel terrified in these early days following diagnosis but rest assured that as long as your inflammation is kept well under control, you will have little to feel concerned about. The most important thing to bear in mind is that you have been diagnosed and prescribed timely treatment which has protected your eyesight.

There is an excellent book available: 'Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide, written by Dr Kate Gilbert and available on Amazon or direct from PMRGCAuk, pmrgcauk.com.

If you are in the UK, there are also various support groups dotted around where you can meet up with others for a cuppa, a chat and support. Meanwhile, there is always someone around on this site for a 'virtual' chat and to offer advice from their experience with GCA.

[Determineddebbie in reply to Celtic]

Thanks for taking time to reply . I'm still on 40mg and no reduction until rheumatologist on28th so will hopefully start tapering after that . I'm dreading appointment and have today started diary so I don't get tied in knots

[Celtic PMRGCAuk volunteer]

Heron, it is quite usual to prescribe aspirin alongside steroids provided no contraindications exist. It is referred to in the BSR Guidelines for the Management of GCA :

"Low-dose aspirin has been shown to decrease the rate of visual loss and cerebrovascular accidents in GCA compared with patients not treated with aspirin. However, there are also conflicting reports regarding its efficacy at preventing ischaemic events in GCA."

I wasn't prescribed aspirin but I do know many people for whom it has been prescribed.

[Caro12line]

Celtic has said it all. Just to say I was very confused and frightened at first. My biopsy was negative but the Pred stopped the pain within 48 hours. I went 3 months without a positive diagnosis. The diagnosis came after an Ultrascan underarms, neck and chest. The Rheumy saw something and sent me for a PETCT scan and they found inflammation in my Aorta and Subclavian arteries and diagnosed GCA. So GCA is not always in temporal arteries but elsewhere and mine did cause headpains although I am still a bit confused how that happened! Good luck

[Celtic PMRGCAuk volunteer]

Yes, that's right, Heron.

[Maxine-59]

I have Pred Aspirin and Omeprazole, aswell as a couple of things for my bones. I am careful to take the first 3 after food. I am not over joyed at taking any of them but know they keep safe with less risk of a cardiac event or stroke (CVA Or TIA) - having not taken a single tablet before it took some getting my head around. A year later I'm an old hand X

Best Wishes

Maxine

[Determineddebbie in reply to Maxine-59]

Thanks Maxine x

[Apple2]

I had similar results for gcc beginning of March 2016 and although my doctor initially put me on 40mg after the result lowered in to 30mg then 25 and again to 20 and again to 15mg at intervals of 2 weeks. After that I am now allowed to lower them at 4 weekly intervals.

Am now down to 12.5mg a day but do have blood tests every month to check my inflammation level and as long as its is below 5 I can follow the chart the doctor gave me.

Hope this helps

[Determineddebbie in reply to Apple2]

Sounds promising . Did you gain weight ?

[enen in reply to Apple2]

Apple2 are you dropping by 2.5 every 4 weeks?

[Doralouise77]

Low dose aspirin is definitely recommended in the treatment of GCA. Here we call it 'baby aspirin' and it's around 75 or 80 mg and it's ordered 1 per day.

Cheers

[enen]

I was previously diagnosed with GCA 5 years ago. Pred for 18 months to treat the GGCA but now 5 years later have developed PMR. After 6 weeks of 20mgs of Pred and a blood test which reflected a drop of over a 100 on my ESR my GP advised a drop to 15 on the Pred yet my inflammation came back and had to increase to 20 again! How can this happen when my bloods showed Norma!! Will the Pred work as well this time as before I dropped?

[PMRpro Ambassador in reply to enen]

While you are on pred and the inflammation is under control then there should be no production of the proteins that cause the raised ESR - it will get back to normal levels. This production lags behind the rise in inflammation so it may take a while to go up again in a flare and symptoms are always king. In some people it doesn't rise while you are taking any pred so blood markers are not always reliable - and having normal blood levels does NOT mean the PMR has gone into remission and you don't need pred. It just means you are taking enough or more than enough pred to achieve drug-induced remission - a very different thing altogether. There are no symptoms but the cause, an autoimmune disorder, is still ticking away in the background.

However, a drop of 5mg represents a drop of 25%, top US experts years ago said the maximum recommended step reduction in PMR should be 10% to try to avoid the problem of steroid withdrawal rheumatism which is so similar to PMR in appearance that you can't tell which is which, it is assumed you are flaring and you raise the dose again. Often if you stick it out then the steroid withdrawal pain fades over a period of a couple of weeks - if it is a flare it will get worse over that sort of time.

This thread describes a slow reduction plan:

healthunlocked.com/pmrgcauk...

which many people on the forums have used successfully to reduce without too much discomfort. Not only does it make the reduction less uncomfortable but it also more accurately identifies what you are looking for: the lowest dose that achieves the same result as the starting dose.

It is being used in a clinical study in the north of England and several UK rheumatologists are using this or something very similar with success in avoiding flares.

[Determineddebbie in reply to PMRpro]

That sounds interesting re clinical trial . Do you know what hospital trial is ? My daughter wirks in clinic let trials she may get acsess ????

[PMRpro Ambassador in reply to Determineddebbie]

Not unless you live close to the hospital in Leeds! It is looking at use of pred, side effects and gentle exercise in management of PMR.

[Determineddebbie]

Hi I'm new to all this do will follow your post , that seems a big 1st drop. ?

[Determineddebbie]

That seem like a big 1st drop , how did it make you feel ?