Gca steroids

[Fifelassieo]

I was at doctor today, have had jaw pain, blurred right eye, headache, this is all on the rights side. Doctor put my prednisilone up from 17.5 to 60, she thinks it could be gca and has asked for an urgent appt to see rheumatologist. Can anyone give me any advice on this and what is the best way to take 60 pred

[PMRpro Ambassador]

All at once - and immediately. Don't wait until tomorrow. At least take 40mg now to make today's dose up to 60mg.

I hope she doesn't seek "urgent" - "emergency " is the word she needs.

All the best - and hope you can see someone quickly. If you do develop any visual symptoms despite the high dose do go to A&E immediately.

[DorsetLady PMRGCAuk volunteer]

Hi,

Sorry to hear you may have GCA. It’s scary, but treated correctly you’ll get through it.

This is link to guidelines -

pmrgca.co.uk/assets/files/2...

I had GCA for almost 6 years, been in remission for just over 2. Have a look at this, my take after my illness went into remission.

healthunlocked.com/pmrgcauk...

Take your Pred in one dose in the morning, you will find you are probably hyper active initially, but after a few weeks that does settle.

Come back with any more specific questions please.

[jinasc]

I am assuming you are located in Scotland. If so click on this link and read up on the Scottish Charity which also runs support groups and is part of the Alliance Group.

pmrandgca.org.uk

AS PMR Pro says you need and emergency appointment not an urgent one and take those steroids. If you hear nothing tomorrow ring the GP and clarify the situation.

[Fifelassieo in reply to jinasc]

I have to go back to doctor Friday morning. Thanks l will

[Fifelassieo in reply to Fifelassieo]

Sorry she also took more bloods

[Hidden]

I was diagnosed with GCA about 5-6 months after PMR in Dec 2015. I went from 15 mgs to 50 mgs. I was on 50 for a month then 40 to 30 etc. the upped dosage made me feel as if I was on an emotional roller coaster. I had sore jaw, right temporal headache and pain to touch, along with scalp sores. Since then I have always had a tiny niggling of right side headache.

This last Oct my rheumatologist said he felt my GCA was in remission.

I have bounced all over the place on tapering down and at present am back at 15 mgs after a huge flair of GCA which bumped me back up to 60 mgs to kick it hard. I never seem to manage to get under 10 mgs without a flair. As to the blurry eye I always say it is blurry and it mostly is my right eye but it actually is more hazy. The eye physician says my optic nerve is fine and he is the one who tapered mefast from 60 down to 15. At 15 I feel the tenderness of my right temporal area. Just did some labs so will see where my inflammation markers are.

If you live with someone let them know Pred will make you up n down ... it helped because when I would start spiraling down my roommate would say. Remember what you told me about Prednisone... yep I would go take a nap. This too will pass.

[lesley2015 in reply to Hidden]

Hi Lin-calif

Interesting, I amalso in the middle of a flare - diagnosed with prm/gca almost 4 years ago. I often have a niggly paid that never really completely goes from my left side, often a tenderness and the vision in that eye can be blurred, eye tests on optic nerve etc fine. Rheumy discounts this and says it would be both temples and it would be double vision not blurred, so interesting you have similar symptoms - what is your Rheumys opinion of this please if you dont mind me asking??

[Hidden in reply to lesley2015]

Well between my right side n your left side we should see double. I have moved n my new rhuematologist is one month out. My eye exams are always great no issues but the hazy eye is almost always there when the niggling pain kicks up a bit. I don't ever remember hurting in both temples it has always been one sided. The last flair was the only times remember my jaw hurting on both sides... With right side much worse.

[lesley2015 in reply to Hidden]

It seems we are all different - yet my Rheumy seems to expect us to have all identical symptoms - frustrating !

I hope you are continuing to settle from your flare - its so frustrating isn't it?

[PMRpro Ambassador in reply to lesley2015]

He is wrong - I do wonder where they develop these ideas from? Blurred or double vision is mentioned in almost every guideline and I posted in the last day or so about bilateral not being essential and according to some medical listerature is even unusual:

healthunlocked.com/pmrgcauk...

I know quite a few people say GCA is bilateral - PMR is definitely usually bilateral and symptoms not being bilateral is a reason to think again. But I see no reason why GCA must also be bilateral. It may cause bilateral visual loss but that is more because the optic nerve is affected at a point where both optic nerves have joined.

This work

ncbi.nlm.nih.gov/pubmed/118...

says "Temporal arteritis is a giant cell arteritis that affects large- or medium-sized elastic arteries. Often, only 1 temporal artery is affected. We describe a patient with both temporal arteries being involved simultaneously. To our knowledge, this particular constellation has rarely been described so far."

and this

ncbi.nlm.nih.gov/pmc/articl...

says " ...It may have a diverse presentation. The most common presenting symptoms of GCA are fever, malaise, unilateral headache, jaw claudication, polymyalgia rheumatica (PMR) and ophthalmoplegia."

It isn't uncommon for one TAB to be positive and the other not. If the GCA is affecting the occipital region it may affect a large amount of the optic nerve or just a smaller area.

[lesley2015 in reply to PMRpro]

Thanks PMRpro, lovely to have better undetstanding of facts, I am slowly getting better standing up for myself but it makes it easier knowing the actual facts !

[Fifelassieo]

Thanks for the reply, when you were on the 50 pred did you take them all in the morning or split the dose, there seem to be conflicting advice on this. I live on my own, so it is hard to guess my moods, but l do feel l am a little depressed with it all.

[DorsetLady PMRGCAuk volunteer in reply to Fifelassieo]

There has been some discussion about splitting doses, particularly with PMR, but personally I think it is better to take the full dose at one time with GCA, especially early days.

If you feel depressed, then please discuss with your doctor..

.

[Fifelassieo in reply to DorsetLady]

Thanks l will do as you suggest.

[Blearyeyed in reply to DorsetLady]

Definitely , one dose .

It can take a few weeks to get used to , extra drowsiness then insomnia .

You may think you are all over the place for a while but it's best to get a notebook and write down any symptoms or improvements you have had to show your GP and then Rheumy.

Drink alot of fluids as the change in dose and the inflammation can make you very dehydrated and this can make your head and eye pain worse.

Get rest at the moment , there are no jobs , events , family chores that are more important than you getting your balance back and all of your energy should be spent on adjusting to your dose and getting your symptoms under control .

Get other people to understand that this is important and they need to help you more right now and do things like cook , clean , organise so you can relax , as being calm and relaxing is as important for GCA as the Steroids in the beginning. Tell them honestly and calmly the facts , it's easier for them to cope with if they know the truth in a practical way.

If you aren't on a vitamin / mineral supplement take one from now in the middle of your breakfast so you absorb it all , you may not feel too hungry for a while from the anxiety but also the way dose effects your stomach but it's really important to get all your nutrients to help reduce your inflammation.

If you feel that your eyes are very dry and sore , get your GP to prescribe you some good eye drops ( I have Celluvist , single dose , they are expensive but the best so GPs do try to give you others first) a night time gel called Vitapos A is also beneficial to maintain your eye health stopping drying but also giving eyes vital nutrients while you sleep. These help to soothe your eyes while the recover from any impact the GCA has had on your eye health.

Take care , stay calm , think positive and sleep when you want not when you should and you will feel better soon. xx

[Fifelassieo in reply to Blearyeyed]

Thanks for the insight.

[Hidden in reply to Fifelassieo]

I always have taken one dose in morning no splitting for me. It is also on empty stomach which I am lucky because it has never upset my stomach.

[gifford7]

If your bloods are high, CRP & ESR, this supports a GCA diagnosis.

If you suffer any vision loss it becomes an emergency situation; then the recommendation is pulse dose methylprednisolone by infusion, 500-1,000 mg/d for 3 days. see:

keepandshare.com/doc/821187...

"BSR and BHPR Guidelines for the management of giant cell arteritis"

"Uncomplicated GCA (No jaw or tongue claudication or visual symptoms):

. Prednisolone 40-60 mg (not <0.75 mg/kg) daily until

resolution of symptoms and laboratory abnormalities [26, 27].

Complicated GCA:

. Evolving visual loss or history of amaurosis fugax: i.v.

methylprednisolone 500 mg to 1 g daily for 3 days [28, 29].

. Established vision loss—at least 60 mg prednisolone daily [30, 31]

. In all patients:

. Low-dose aspirin 75 mg daily (if no contraindications).

. Bisphosphonates and calcium vitamin D supplementation.

. Proton pump inhibitor.

(iv) Urgent referral to specialist care.

(v) Urgent referral for a TAB.

(vi) Perform the laboratory investigations: full blood

count, U&E, liver function test and ESR/CRP. "

[Sheilamac]

How scary for you! I hope the Prednisolone knocks it on the head quickly for you. Let us know what your bloods say.

Do you live in Fife?

[Fifelassieo in reply to Sheilamac]

Thanks, l live in Dunfermline

[Sheilamac in reply to Fifelassieo]

I'm in Tayport x

[PMRpro Ambassador in reply to Sheilamac]

Quite a Fifers support group on this thread alone with Jantayl too!!!

[GinnyMa]

Here is what my doctor said to me after diagnosis: go straight to the pharmacy to get prednisone prescription and then go straight home and take the 60 mg of prednisone right away. No side trips!

[Jantayl]

Hi

I live in Freuchie, fife, and want to share my experience hoping that it will help. Diagnosed PMR Nov 2017 then GCA Feb 2018 - after day assessment in Hospital and with persuasion from me the consultant increased Prednisolone to 60mg and immediate referral to local rheumatologist appointment the next day. I take all medication first thing in morning - second adcal tablet in afternoon. ....and so far so good. After slight flare Oct 2018 I am now at 11mg Pred. I have tried to keep active throughout walking daily approx 5-7 miles. I just take each day as it comes and hope I am able to keep reducing the steroids.....without any major side effects or hiccups?

[Sheilamac in reply to Jantayl]

Hello, just checking in as I am in Tayport maybe us Fifers can meet up sometime. X

[PMRpro Ambassador in reply to Sheilamac]

I'm sure there are a couple of others - why not start a thread?

[Fifelassieo in reply to Sheilamac]

Would be nice

[Jantayl]

Good idea - perhaps share our experiences of this strange, previously unknown to me, unpredictable ‘condition’? I read this forum posts every morning, finding it very helpful in ‘managing’ the ups and downs and individual side effects.