Time to take back my life

[jeannette65]

Had gca for 2 years now, on 3mg of steroid and toxicilimab monthly infusions. This is the best I've felt in 2 years. Time to take back all I lost to gca. So with the new year I'm having physiology to strengthen my legs, started at slimming world for the weight, started driving again now I've lost my brain fog. Slowly making positive changes. I wish you all a happy and healthy new year. Thank you to all for the advice and support over the last 2 years. Stay positive there must be light at the end of our tunnel.

[Hidden]

Great News & Very Best Wishes for 2017 💐

[jeannette65]

Thankyou

[betty1943]

Hi jeanette65

I have had GCA for 2years now and now down to 2mgms steroids. I'm interested about the toxicilimab. I can't find it in the BNF can you tell me what it is please? I'm waiting for the spring to start a dead slow reduction of the last 2mgs.

Well done it's a joy to feel a bit more positive isn't it?

I would also like to thank everyone for their help and support and just to say, keep on keeping on.

A big thank you and is that a light I see on the distant horizon? If not keep going!

[jeannette65 in reply to betty1943]

Hi Betty 1943 toxy is a infusion monthly. My consultant had to get permission for it because it's very expensive. He was refused the first time and was told to send me to Addenbrooks for acessment. But he persisted and finally got the funding. I was on rituximab before that and that was ok for my ra but needed extra for the gca.Are you on any infusion? or just pred alone? I'm hoping you are feeling the same way I am.And there's got to be light.

[betty1943 in reply to jeannette65]

I havnt got RA but Osteoarthritis. No I'm not on an infusion just Pred. alone. Yes, I'm feeling ok but wonder about dropping any further. PMR pro seems to think staying at 2mgms would be ok, but, I worry about the side effects of Pred. I lost a stone when first diagnosed and have managed to keep it off, I also kept walking twice a day with my dog but reduced the distance as my muscles became weak. I must admit I fell a few times and fractured a couple of ribs!

Good luck to you and all those who give us so much support and advice.

[Joyismami in reply to jeannette65]

My Mom was diagnosed in September with GCA.. This has been nothing short of a nightmare for her! She was put on Prednisone 60mg daily and has been unable to taper below 35mg, at which time they put her right back up to 60mg a day again and she remains.. She did receive her first infusion of Actemra yesterday and will continue to do so every four weeks as they try to reduce her Prednisone again.. Ever since the diagnosis she has been extremely fatigued with pain in both legs, short of breath at times, and unable to most things she could do before.. It is so frustrating to see her go from being 100% active to very limited activity due to the pain in her legs.. She no longer drives or works due to the fatigue.. Prior to the diagnosis of GCA she had no medical history at all and was on no medications.. Very healthy and active, still working, 82 year old..Thankfully the ER Physician diagnosed her GCA immediately, started IV Prednisone and was able to save her vision.. I am trying to stay positive for her and keep her spirits up, but I can see how frustrating this is on her and I am trying to learn as much as I can about this disease. I was happy to find this site that had some recent activity of others who have or are going through the same thing.. Joy

[PMRpro Ambassador in reply to betty1943]

Tocilizumab is a biologic drug currently used for RA. There has been a large Phase 3 clinical trial for using it in GCA which seems to have brought very promising results. There are some people in the US and Australia who are on it but outside the trials it hasn't been generally available previously.

A consultation was done in the UK last summer about its use in Takayashu's arteritis and GCA which resulted in a decision to approve it for Takayashu's but not for GCA (the only difference is the age group of the patients). However, since the results of the clinical trial have been brought out this is being rethought.

It is not likely that it will be generally used for GCA in the near future, it costs £17K per year and it isn't yet clear whether it will be used for a short time to induce a longer term remission, I would expect it to be made available for refractive GCA - i.e. where patients cannot reduce their dose significantly without flares.

rheumatologyadvisor.com/spo...

Tell you - if I ever get to 2mgs I won't be worried about reducing any further! 5mgs will do for me!!!! Do hope the last bit of your reduction goes well.

[betty1943 in reply to PMRpro]

PMRpro can you tell me, at 2mgms of Pred (I've had GCA for 2years and 2months) would you advise I remain at 2 mgms or attempt a reduction to nil. I thought it would be better to drop to nil to reduce the chance of any side effects of the Preds.

[PMRpro Ambassador in reply to betty1943]

My comment was based on the fact I have only once managed to get to 5mg in over 7 years on pred! I tried lower - the fatigue was mind-blowing and then I had a flare this time last year, back to 15mg, and am now at 8mg. I nearly got to 7mg but have had a humdinger of a cold.

No - if you can do it, of course reduce to zero. but be realistic and very slow because this last bit is the hardest as the relative drops are bigger. But there are a few people on this forum who have got to the Club Zero stage after GCA and I'm sure they tell you how they dealt with this last bit. Celtic and DorsetLady spring to mind - I'm sure there are others.

There is no hurry though - the side effects at this level are minimal.

[betty1943 in reply to PMRpro]

Thank you for your help, I think I might ask Celtic and Dorset lady how they did it.

Happy New Year

[PMRpro Ambassador in reply to betty1943]

SLOWLY!!!!!

[betty1943 in reply to PMRpro]

Yes I have the slow regime written down but made the mistake of starting it in the autumn and it started to drop my mood at the beginning of 1mgm.so went back to 2mgm. Until the spring.

[jeannette65 in reply to betty1943]

You've done well to get that low🤗🤗

[Rose54]

good luck

We can achieve anything as long as its realistic and we want it enough

[SheffieldJane]

Well done jeannette65, I suspected that there was light at the end of the tunnel! Happy New Year!

[Jackoh]

Well done Jeannette65. Happy New Year to you with health and peace x

[Green_girl]

It's such a joy to not have brain fog and to start living again isn't it!! Well done to you and hope you continue to gain health. Several years after recovering from just PMR I still find myself grinning from ear to ear when I think of what it was like and how I feel now. Hope it is the same for you. Do continue to go slowly though, and to recognise that you've had a debilitating and serious condition which will leave its mark - Pred does affect muscles even after we stop taking it.

Enjoy all your new found freedoms - and enjoy smiling lots!!