New poll live - for people with GCA

[Polywotsit]

On Tuesday we have the second NICE meeting to consider tocilizumab for GCA. It would help us to have one or two statistics ready in case we need them. One is to have an idea of how long people are struggling with GCA, how long it takes them to get off steroids. If you could respond to the poll (over 100 already have!) and perhaps post a comment about your experience e.g. of flares, of having to increase your steroid dose, experience of drugs other than steroids - that would be fabulous. Thanks.

healthunlocked.com/pmrgcauk...

[Soosie56]

I became ill at the beginnng of December 2014 and was diagnosed about six months later with PMR, then GCA, going up from starting at 20mg of prednisone to 40mg daily. Nearly three years later I am on 13mg daily having had a number of flares at around 8.5mg. I have put on over two stone in weight, am far less mobile (I used to walk and go to the gym previously) and always suffering from fatigue.

Onward and upwards (or should that be downwards?) 😄

[marieann49]

I was diagnosed with GCA and PMR in May 2017 .I had 6 infusions of steroids and chemotherapy.I was on 60 mg of steroids, and have tapered down to 12 mg today.I also take methotrexate, 20mg, which I have been on for 5 months . I had one problem with tapering down last year .I got to 15 mg and started getting pains in my hips and head .I had come down by 5 mgs , so my consultant told me to go up to 20mgs .I now taper down by one mg a week , until I get to 12, which I will stay on for 2 weeks , 11 for 2 weeks. I will then taper by half a mg to get as low as possible on my steroids. Marie

[Marijo1951]

I first had GCA symptoms at the beginning of April about a week after starting with PMR symptoms. I was actually diagnosed at the Royal Free Hospital on 31 July and immediately put on 60 mgs per day of prednisolone which reduced to 40 mgs after 4 weeks. My problem has been that on the two occasions when I have reduced to 25 mgs I have had a strong flare in GCA symptoms and had to go back to 40 mgs per day. The second time, a few days after Christmas, I was also prescribed methotrexate. This hasn't so far made me feel any better. In fact it just seems to have worsened the extreme fatigue and brain fog that I was already experiencing. However I understand that it usually takes at least 6 weeks for beneficial effects to show themselves so I am keeping an open mind on that. I am very concerned that NICE are denying us the opportunity of trying a drug that may well tackle GCA directly and not just the symptoms. Given that the worst possible outcome of GCA is loss of sight, I would have thought it was worth the investment.

[mngirl in reply to Marijo1951]

Hi I too was diagnosed in April (Positive biopsy). I have experienced flares since August. Every time I tried to reduce my dosage from 20mg. I started Methotrexate in Dec.I have had 5 doses I am not sure if it is helping but at least it has changed my appetite. from " if it doesn't eat me I will eat it "'I have fatigue especially if I do anything out of the ordinary. I was someone who never got sick. I have had 2colds and 2uti's. My markers are up again . I have the temporal headache so it is probably a flare not the cold. I hope the methotrexate is going to help. My doctor did mention Actemra. I don't know though.

[Marijo1951 in reply to mngirl]

I too was never ill before last year. I wish I'd known how lucky I was and how valuable good health is but as Joni said 'You don't know what you've got til it's gone'. I can't say I've noticed any reduction in my appetite since starting on Methotrexate, so I envy you that. I can't believe the hunger pangs and my obsession with food.

[Tcake2]

I was struggling with neck pain and very bad pains in my temples for some months before visiting optician for deteriorating eye sight and double vision. She sent me back to Dr.'s, who did blood test , prescribed pred. and arranged biopsy. Diagnosed with GCA and PMR 2 years ago, started on 40mg prednisone. Got down to 12mg last April then had a flare - back up to 15. Reduced by .5 mg but had another flare in September when on 11.5mg. Back to 15mg again, reduced gradually but unable to get below 12 mg without symptoms returning. Despite flu jab I have had a stream of coughs colds sore throats and chest infections which leave me exhausted and needing an inhaler just to breathe. I'm trying so hard to reduce pred. My blood pressure is sky high, take 2 omeprazole a day to counteract stomach problems, have gained weight and can only sleep a couple of hours a night. Rheumy has decreed I must also take methotrexate following latest flare but I am resisting as I feel so rough on the current tablets I'm loathe to add yet another. Would be so much better if we could treat the illness and not just the symptoms. On a bad day I don't know how I'll survive 2 more years of this.

[sondya]

Hi Kate - I was diagnosed GCA in December 2016 after CRP was 76, visual auras, jaw claudication and severe headaches. Put on 60mg prednisone immediately and soon CRP dropped to 4. Stabilised at 9 now. A positive left temporal artery biopsy reinforced the diagnosis. Since then, it's been the long journey of tapering off prednisone, omeprazole, Fosamax and probably that little heart-shaped aspirin. Now, dropping pred by 1mg per month, currently on 3mg, I have been told the GCA is in remission.

* My hair went curly.

* My raging appetite has decreased (as predicted) and weight is back to pre-GCA level.

* My eyes are very dry and inducing tears is fruitless. But, at worst times, resort to sucking a blob of wasabi which brings on a flood!!! Much nicer than messing with artificial tears.

My local hospital rheumatologist and my GP are monitoring progress. Blood tests and rheumatology clinic visits will continue for as long as necessary.

I live in Auckland, New Zealand.