New to GCA

[viamonv]

Just got diagnosed with Giant cell arteritis. Have so many questions and feeling scared.

Did the pills help? How long have you been on them? Do you get to a point that you are good and you are cured?

Please advise..

[SheffieldJane]

Thank goodness they caught it. Prednisalone should help enormously. You will feel better on the lower doses though once you are ready to reduce nice and slowly. Welcome to the forum. There are a lot of very experienced people on here who have been through every stage of GCA. I expect DorsetLady will be along with her wisdom - she’s a bit jet lagged at the moment. Yes you will get better and it will take its time. Ask your questions as they arise. Don’t be scared, undiagnosed GCA is the scary thing.

[viamonv in reply to SheffieldJane]

Thank you. Just never been sick which is a blessing but now this. Are you still on meds?

[Celtic PMRGCAuk volunteer]

Hello viamonv

I just wanted to step in quickly to reassure you and to say that as someone who has experienced GCA with PMR, I so understand and empathise with how scared you are feeling following your recent diagnosis.

Yes, if you are talking about Prednisolone pills at the usual starting dose of 60-80mg, they absolutely help to bring down the inflammation that causes the symptoms of GCA. If those symptoms result from inflammation in the temporal arteries, then the medication is vital to protect vision. If initial blood tests showed raised inflammatory markers in your blood (ESR and CRP) then those tests should be repeated regularly in these early days following diagnosis to confirm, along with an improvement in your symptoms, that the dose is successfully controlling the inflammation. It is then important to remain on that dose for 3-4 weeks before attempting a reduction, and that reduction should not be more than, say, 5mg from a starting dose of, say, 40mg.

As for how long someone remains on the medication, it can vary from person to person - as each of us can present slightly differently with our symptoms, so can we respond a little differently to the medication. The condition can take anything from two years upwards.

There is no known cure just as there is no known cause but the disease goes into remission as long as the inflammation is kept under control by the correct dose of steroids during the course of treatment, and you should gradually start to feel much better. It is important not to overdo things but to have as much rest as possible, especially in these early days of treatment to give the steroids every chance to do their job.

You should have been prescribed a calcium plus Vit D supplement alongside the steroids and these should be taken several hours away from the steroids, ie Prednisolone with breakfast and Calcium plus Vit D with lunch and dinner.

If you haven’t had a bone density scan, then do request one to get a baseline reading, and certainly before any bisphosphonates medication is suggested.

It was my experience that the GCA symptoms affecting my temporal arteries disappeared as if by magic within a few hours of my first steroid dose; my PMR proved a more difficult nut to crack. But both went into remission some 6 years ago after 5 1/2 years on treatment.

No doubt you will have lots of questions so ask away and there will always be someone around who can answer them from their own experience. Also, check the PMRGCAuk website where you will find lots of information, including support groups dotted around the country if you are in the UK. Hope that helps you to feel reassured, especially knowing that there are several of us here who have recovered. And you will, too.

[Sallydvs in reply to Celtic]

It was so nice to have read this. It makes things seem a little brighter down the road.

[Celtic PMRGCAuk volunteer in reply to Sallydvs]

Sally, so glad if that helped - it’s important for those of us who have come out the other end of this journey no-one ever expected or wanted to take to spread the word that there is life at the end of the tunnel. Yes, there are always those few who will have more bends in that tunnel than others, but it is important to remember that there will be loads of patients out there who will have problem-free, text-book journeys we will never hear about because they haven’t felt the need to seek support. Things are definitely “brighter down the road” and I wish you all the best and may the light at the end of the tunnel soon shine brightly for you and everyone else looking for that glimmer.

[Sallydvs in reply to Celtic]

Thank you so much. It means so much to hear this

[viamonv in reply to Celtic]

Are you still on meds? Or is that forever?

[Inger62 in reply to Celtic]

Thank you soo much Celtic! Glimmer me needs💫

[viamonv in reply to Celtic]

thank you

[Hidden]

Hi viamonv! Welcome, and don't be scared, although that is a totally natural reaction to this diagnoses!!! I am a "newbee," as I was just diagnosed with GCA & PMR on November 13th , 2017. You can see all my posts (I think if you follow me) which tells my story... There are many others, on the site, who are much more experienced and more knowledgable about both diseases than I am. You will find their help invaluable.

"Yes," the steroids help, although they do come with their own set of issues and side effects. Hope for the best, but be prepared for the worst. You may (or may not) experience a myriad of weird and scary side effects... check here if you're in doubt. Also, you may be on the steroids for years... not months, so be mentally, and emotionally prepared for that. : (

I am sorry to say that I have personally found GCA & PMR to be quite the incapacitating. I have not been able to work or volunteer at the hospice, since diagnosed. Now, I have had some issues with "tapering" (reducing the steroids) and have gone down, only to have to go way up again, and start over. So maybe you won't experience that!

I am not to the point where I would say I am "good," but than again it has only been 102 days (but who's counting!). I am always tired.. exhausted really. I have lots of minor aches and pains, but the horrible headache is gone (and for that I am most thankful!) And I can no longer do the silly things I used to do... clean the house, change the sheets, do the grocery shopping on my own, go into town all day shopping/looking around... I spend a lot of time at home, but that is my choice as I am comfortable here.

Everyone is different and your journey will be unique to YOU! I wish you the best of luck and sincerely hope your journey passes quickly and without complications.

[viamonv in reply to Hidden]

Thank you

[Daisychain12 in reply to Hidden]

Mamici. Me too. Xxxxxxx😭😭😭😭😭

[DorsetLady PMRGCAuk volunteer]

Hi viamonv,

and welcome, as another GCA survivor I’ll reiterate Celtic’s words, you will get through it. Mine was undiagnosed for 18 months, so I had a difficult start, but after that a reasonable journey, some hiccups, but not as complicated as some.

I’ve been off the Pred now for almost 18 months and just got back from a 3 month holiday in New Zealand, so life does return!

Have a look at this post, and maybe through a couple of others of mine to give you a “feel” of what lies ahead.

But as Jane says now it’s diagnosed you can move on.

healthunlocked.com/pmrgcauk...

Take care

[viamonv in reply to DorsetLady]

Thank you I was afraid this would be forever. I don't get tired but lots of pains in face, temple and shoulder.

[DorsetLady PMRGCAuk volunteer in reply to viamonv]

Hi again,

What dose did you start at and when? If you are on the correct amount then your pains should recede within a few weeks, if they don’t then maybe you need a bigger dose.

[viamonv in reply to DorsetLady]

I am at 60 just started this week. Last night I wake up at 5 soaking wet and my heart was racing and Charlie horse. This is crazy. Did you have anything like that?

[PMRpro Ambassador in reply to viamonv]

I think that is quite common. The inflammatory substances are shed in the body at about 4.30am and although officially I only have PMR I wake at about then feeling very hot though rarely with a sweat as such.

Pred at high doses does cause fast heart rate. However, the autoimmune part of the disease can cause arrythmias too so if it doesn't settle do ask your doctor to check it out.

[DorsetLady PMRGCAuk volunteer in reply to viamonv]

Hi,

No I didn’t have either but I had other side effects. Guess you win some, you lose some!

[Insight329]

Greetings, Viamonv! I’m so sorry that you’ve been told you have GCA, but very glad that they caught it. I, too, have GCA but with PMR. It is scary being told that, but please know that you can put some of those fears aside as you’ve been blesssed to have found this site. I once described this site as having a doctor on speed dial. (Ok...not the same, but the next best thing as many answers to questions to be found here.)

There are those that have walked this walk and by experience and education have become experts on PMR and GCA. We call them Aunties (and Uncles). Fortunately for us , they are willing to help us in our journey through it, also.

Therefore, I’d encourage you to read back through past posts. It will help you learn more about your illness. And in turn will help alleviate some of your fears.

I think one of the first things that I learrned from here (and one of the best) was to change my diet to low carb/no sugar. It will help keep those crazy steroid food cravings at bay, will help with the weight, and may also help keep diabetes in check. Another thing is not to take your calcium at the same time as your Prednisone. They don’t play well together.

Again, welcome to the community. Don’t hesitate to ask questions and remember the search engine, too, is at your disposal.

[Insight329]

Also, if you keep having muscle spasms, you might need to up your potassium intake and magnesium. Do a search on magnesium. It has been discussed recently and should be easy to find. Be wishes.

[viamonv in reply to Insight329]

thank you will do.

[viamonv]

Has anyone on here at point where you don't take the meds?

[Insight329]

Re-read Celtic and DorsetLady’s responses and you will see that they are both in remission.