Checking in: Rheumy diagnosis GCA

[Cobalt2sister]

well, dear folks, after all this time working with Neuro-opth and retina specialist they were uncertain if GCA since negative biopsy. Had strongly considered TIA since I had 2 in Aug but all MRI etc clear. So she referred me to rheumatlogist. Today rheumy says GCA and ordered CT to check aorta for involvement. (Scheduled for this saturday). Also, many blood tests.

I was concerned I was tapering too fast...feeling dreadful and continually in mild tachycardia and thankfully she agrres. Rather than dropping 10 mg every 14 days she's doing 5 a month ( for now). I'm at 40, down from 80. ( prednisone)

She suggested Actemra (tocilizumab) but only if after I read about it, I felt comfortable with if. Am a little nervous about another new drug and self administrating injection...yikes! What's your experience?

She was concerned with my bone density ( not osteoporosis but osteopenia with significant bone loss and high fracture risk. ) worried continual prednisone and this. But my primary care jusf started me on Fosomax ( alendronate).

Sorry this is so long winded! Its a long, complicated journey often uncomfortable!! and frightening for all of us but all the more reason I am so grateful to have this wise and supportive community in my life. Best to all: healing and fond wishes for well being.

[HeronNS]

There's a lot for you to take in, but I'm going to add one more: Have a look at my story as you consider the way forward with your bones issues:

healthunlocked.com/pmrgcauk...

[Cobalt2sister in reply to HeronNS]

Thank you. Very helpful and informative. I saved your post. All the best...

[LemonZest11]

Just a word of reassurance with regard to the self-administered jab of Actemra, I too was apprehensive but they show you how and really, it's nothing after the first jab. All the best on your journey 🙏

[AyJayBass in reply to LemonZest11]

Agree! I have been self injecting with a traditional syringe for over 5 years, (nothing to do with PMR/GCA). There really is nothing to it.

[Cobalt2sister in reply to AyJayBass]

That's encouraging! Thanks.

[Cobalt2sister in reply to LemonZest11]

Thank you. Encouraging news as I am a little apprehensive. Have you had any side effects from the drug? How long you taking it? It shortens the time you're on prednisone, right? But how long do you then usually stay on the actemra. I know that's probably not answerable. In any event thanks and goid luck to you.

[LemonZest11 in reply to Cobalt2sister]

The only side-effect for me is neutropenia which has been addresses by less frequent jabs. I have tapered to 2mgs pred. We are only allocated 12months of weekly injections in Australia but spreading them out has meant that I have been on it for over 2 years. It's working brilliantly for me, but apparently not for everyone. You can only give it a go. 🤞

[Cobalt2sister in reply to LemonZest11]

Thank you. So glad its working so well for you. Obviously worth a try so i'll probably give it a go. Doctors not pressuring me ...wants me to make informed choice. Thanks for responding

[Cobalt2sister in reply to LemonZest11]

That's good to know. Thank you for your kind good wishes and best to you as well!

[123-go]

Hi. It certainly appears that you have a good team behind you in terms of investigations and it's encouraging that you are listened to. Once a diagnosis is confirmed I'm sure that you'll be able to deal with what is ahead: the not knowing is horrible and unsettling.Sending my best wishes. 🤞🏼

[Cobalt2sister in reply to 123-go]

Thank you for your kind wishes. Yes, the not knowing anxiety producing. I think I do have good investigation team which I appreciate and don't take for granted. I know that can be hard to find. I hope your own journey is good and filled with healing.

[DorsetLady PMRGCAuk volunteer]

Good that it looks as if you are finally going to get correct diagnosis, and scary though it may be at least there is a way forward.

Good luck, and as you know we are always here.

[Cobalt2sister in reply to DorsetLady]

Yes, a way forward indeed. Proper diagnosis and care just such a weight lifted that my eyes might be "safe" with proper treatment. And yes, so reassuring that you are all there...thanks.

[SnazzyD]

Great to be heard; it’s horrible if you know something is wrong but others don’t give any reason. As for the injection, it’s not like one in that you don’t even see the needle, so there’s no hand shaking as a pointy bit inches closer to you and plucking up courage to make the final jab. But, if you really do need shut your eyes you can, it’s that easy.

[PMRpro Ambassador in reply to SnazzyD]

Depends - if it is an epipen thing, you're right, if it is the pre-filled syringes, (what I have) there is a needle cover to remove and you see the needle!! And there is a plunger to press.

[Sharitone in reply to PMRpro]

Have you just started TCZ then?

[PMRpro Ambassador in reply to Sharitone]

Yup, last week

[Sharitone in reply to PMRpro]

Welcome to the club...! I hope it does the trick for you!

[123-go in reply to PMRpro]

I hope it works some magic for you.

[Sophiestree in reply to PMRpro]

We're you given Actemra for your PMR?

[PMRpro Ambassador in reply to Sophiestree]

Last week ...

[Sophiestree in reply to PMRpro]

Will be interesting if you see a change. Let's hope so.

[PMRpro Ambassador in reply to Sophiestree]

Stiffness has changed already.

[Sophiestree in reply to PMRpro]

Wow! AmazingLong may it continue

[Cobalt2sister in reply to SnazzyD]

Love your description!!! Funny, but then again....were you injecting once a week? How long do you take it for? Imagine it varies case to case...side effects? Thanks

[SnazzyD in reply to Cobalt2sister]

I’m not but have seen others do so but have used a similar system for other drugs for something else some years ago. However, having said that, PMRPro says the ‘old’ system is still out there. However, even with that you do get used to it, though I didn’t when I had to give myself a series of intramuscular rabies shots in the 80’s. For side effects search for posts on it here because there have been lots of discussions about that.

[PMRpro Ambassador]

That sounds a FAR more reasonable rate of drop!! 20mg a month is a big change by any standards ...

[Sharitone]

Don't worry about the self-injecting, even if you get the prefilled syringes. It gets a little easier every time, particularly if you award yourself an extra square of chocolate afterwards. Burt do consider injecting at a time when you can rest for the remainder of the day if necessary, as it can make you extra tired for a while. Also, the first couple of my injections were followed by a kind of tidal wave of weirdness about an hour later, but this hasn't happened again since.And if you don't get on with Actemra, you can stop it straight away. Good luck!

[Cobalt2sister in reply to Sharitone]

Thanks...especially liked the chocolate advice!!! And thanks for tip about resting... How long do you usually have to take it for? ( though I imagine that's very individualized)

[Sharitone in reply to Cobalt2sister]

Actemra? For as long as it takes, I guess. Though it does take a while to kick in. Here in the UK it is usually restricted to 1 year for GCA, so that must be effective in most cases. (Or is it just too expensive?) However, if you have a different diagnosis, Takayasu's Arteritis, you can have it for longer, which suggests that 1 year is not always enough.

[PMRpro Ambassador in reply to Sharitone]

The pharma company didn't provide adequate long term data to NICE for approval to be granted for a longer period. The clinical trial was for a year and they haven't yet submitted data for the follow-up study which would demonstrate benefit.

PS - that was from the horse's mouth ...

[PMRpro Ambassador in reply to Sharitone]

Just realised what I dislike about these particular prefilled syringes - the needle jumps out as soon as you release the pressure on the plunger when it reaches the end of its travel.

[Sharitone in reply to PMRpro]

Are they not all Roche? With mine, the needle is already revealed in all its half-inch glory when you take the cap off. Then you stab yourself, push in the plunger, remove the needle, and then when you finally release the plunger, the needle leaps back in. If it is made by different companies, then that explains the lack of success I had when after a tip-off from one of our American forum friends, I phoned Roche to find out whether they provided travel bags, for keeping it out the fridge. The short answer was 'No'. They directed me to the NHS Choices website, which didn't even mention TCZ/RoActemra! I also phoned the company who provide and deliver it. Their answer: we're not medically qualified! So I asked a rheumy nurse yesterday. He said to arrange travel for just after injecting - useful if you're going away for more than 6 days - and it should be all right out of the fridge for up to 28 days, but he might be giving me wrong info there. (He was). In the end the advice was to buy a good coolbox. Well, dur!

[PMRpro Ambassador in reply to Sharitone]

That's what I meant - the instruction from the nurse was to count to 10 before releasing the plunger so the needle remained in situ a bit longer. But the spring was far more powerful than I expected and even the slightest change in pressure triggered it to retract.

I was handed a small coolbag and gel pack to freeze to bring home the first packs issued by the hospital pharmacy - our health service pays. The handbook they issue also suggests buying a coolbox that operates from the car battery for travel - the coolbag and gel pack are for up to 6 hours. If flying, I get paperwork to arrange for it to be stored for the flight if I need to take more than 1 week's injections.

[Sharitone in reply to PMRpro]

Thanks, that's useful.

[PMRpro Ambassador]

Not in Europe - the entire needle retracts into the body of the syringe in the version of Ro-Actemra issued here by Roche.

[PMRpro Ambassador]

I can't put it more clearly - the needle retracts into the body of the syringe. I also know the type of syringe with a cover that comes over the needle - totally different:

youtube.com/watch?v=VcuJI-S...(Not working as expected?)

Not recommending her aseptic technique mind ...

[Sharitone in reply to PMRpro]

Mrs Nails would not be impressed by the person on that video!