Recently diagnosed with GCA

[Keeping_healthy]

Hi everyone. It took me a couple of weeks to look at online sites as I was too scared as to what people’s experiences were, I didn’t want to read anything negative, but now I just want to inform myself on moving forward.

My story is I’m a 50 year old British women, who currently lives in Florida. I started with continual headaches at the beginning of May and put it down to having to wear a mask. After my first visit to the doctor, I was told to get migraine medicine, then a week later I went back and was given an ECG, an x ray , a blood test the following day and a CT scan with contrast. After the scan and results of the blood test I was phoned immediately and was told to get 60mg of prednisone. I’ve now managed to see a rheumatologist, which has made me so much better. He did an ultra sound on my head and confirmed the Giant Cell Arteritis. I was so scared to do the biopsy, but he said there was no point and I was already on the treatment anyway. He’s also going to put me on Actemra, which I will self inject.

So this is basically where I’m up to on my journey. I just want to do everything possible to avoid unwanted side effects. I’m following a low carb/ketogenic diet, to avoid weight gain and I want to perhaps look into what other supplements would be beneficial. So any tips and tricks would be appreciated!

[PMRpro Ambassador]

Hi, and welcome! I'll leave the GCA intro to DorsetLady and Snazzy who have both had GCA. But if you have any specific questions - just ask them. It's easier than us writing for ages and it being no use to you

[Keeping_healthy in reply to PMRpro]

Thank you.

[SnazzyD]

Well, I’ll pass the buck at this early stage to DL’s brilliant introduction to these conditions.

This really is the worst bit I think when one is reeling, bonkers on Pred, tired, wired, frightened like walking to a tornado that looks like your new life. My advice is, find some tame brain cells and start absorbing information. I totally get the need to distance oneself from the bad bits but I’d say being empowered is so much better. The way you walk this journey is yours so be mindful of the problems people have, but keep reminding yourself, it isn’t necessarily your fate. Then, hardest of all, you accept this, yield to the necessity of caring properly for your body and try not to cling on to everything that is normal for you. A new normal will come that will change too as your dose reduces. It’s great you’ve started the diet now. Keep the salt really low to avoid fluid retention. Have a read of DL’s piece then fire away if you want to. By the way I’m at the other end on 0.5mg Pred 3 years later after 60mg Pred (no Actemra) and no flares along the way. You will get there.

[Keeping_healthy in reply to SnazzyD]

Thank you. I have been pretty stunned by this diagnosis. I’ve lead a relatively healthy life with diet and exercise. I know there is no known cause, but it’s hard to get my head around and I’ve been kind of burying my head in the sand.

[SnazzyD in reply to Keeping_healthy]

One theme that seems to run through people’s stories is trauma or unsustainable stress and sometimes a triggering infection of some sort. At the time of diagnosis, on paper, I was a very fit, healthy, working 54 year old. Without my hindsight goggles, it blew up over 2-3 days. Also with hindsight, my mind and body had been screaming at me for years but I was adept at ignoring it. Add to that an overdeveloped sense of duty and service, chemo a while back, one curve ball from life after the other and it was a perfect storm. This really does make one rethink the way one does things so it can force a change for the better, though at first it just seems like all cost and no gain.

[DorsetLady PMRGCAuk volunteer]

Hi and welcome

this is a link I send to most new patients - it cover both PMR and GCA - with more info via other links - it a starter and may answer some questions., but as PMRpro says if you are particular issue please raise it.

healthunlocked.com/pmrgcauk...

[Keeping_healthy in reply to DorsetLady]

Thank you so much for all the information. I’ve just ordered the book you recommended on my kindle. I’m going to try and manage this as best as I can and I guess that means not burying my head in the sand! Incidentally my Dad had a hand disease, that required surgery that hailed from those pesky vikings!

[DorsetLady PMRGCAuk volunteer in reply to Keeping_healthy]

They surely got about!

[enan-illuc]

Hi Keeping,

Welcome to the club nobody wants to be in, GCA. I have GCA/PMR and take Prednisone and Actemra. I think the main point to remember is that this will pass with time. Be patient with yourself and I think you will find this Forum very helpful.

Actemra has worked very well for me, I hope it works for you also. Stay strong and welcome to the club.

[Keeping_healthy in reply to enan-illuc]

Did you have any side effects with the Actemra? Or did that help with the effects of the prednisone.

[enan-illuc in reply to Keeping_healthy]

Hi Keeping,

I did not have any side effects from the Actemra but I did not (still donn't) like giving myself the shot. It allowed me to reduce my Prednisone, I was stuck at about 23mg of Prednisone for some time.

I started at 60mg of Prednisone, had a lot of Flares, got stuck at 25mg, was put on Actemra and I am now at 1.5mg of Prednisone but it took about four years. You have to be patient and keep a positive attitude. The slow taper worked the best for me (see Dorsett Ladys taper post). I hope this helps.

[Keeping_healthy in reply to enan-illuc]

I was reading about weight gain and getting fat deposits on your face, back and abdomen along with possible facial hair growth and hair loss. Have you experienced this?

[enan-illuc in reply to Keeping_healthy]

Hi Keeping,

Yes I gained weight, a lot! But I lost it as I dropped my Prednisone. My feet swelled to comical size but also went to normal as I dropped my Prednisone. I did not have hair loss.

Prednisone is a powerful drug and it was/is very effective for me. I am not a medical expert but I feel GCA and PMR takes time and patience. You do get back to the 'old self' but it takes time. Stay strong

[Devoid]

Hi I’m in the uk diagnosed after 2 months of the worst head pain I had ever experienced, didn’t get on to well with high dose steroids, then methotrexate was added which just increased further side effects, then actemera from November last year. I know it’s not a wonder drug for everyone but for me it’s given me my life back. My rheumatologist said when he first saw the scan report that I would have been put straight on actemera in the states , but because it is funded here you are put on steroids and a soarer first in my case methotrexate which was for 15 weeks when I was just deteriorating every day. I do hope actemera works well for you, and as you are starting it early it should benefit you

[Keeping_healthy in reply to Devoid]

Thank you! That is so good to know, that you had a positive experience. I’m just now waiting on the approval from the insurance company, for the Actemra, but my doctor thinks I should be fine. I’m not to read up on the drug as yet, but do you believe this could really improve my situation?

[Devoid in reply to Keeping_healthy]

From the 3rd injection I noticed an improvement, prior to actemera they couldn’t get the inflammation under control but since I have managed to reduce the steroids and since stopping methotrexate have started to feel more like my old self. I would say make sure you rest plenty as this illness takes a lot out of you. Please feel free to ask if any concerns. Every ones experience is different but I don’t mind sharing mine if it’s of help

[Keeping_healthy in reply to Devoid]

Yes I’m very interested in your story! Everything is so new and I don’t know what to expect, so listening to other people’s experiences is very helpful.

[tangocharlie]

Quick question to moderators, I notice Americans post about Actemra a lot - is it what we in the UK call Tocilizumab?

[Devoid in reply to tangocharlie]

Yes