I was diagnosed with GCA by gp in feb 2016, tender scalp ESR 80 transient sight loss, given 30 mg of prednisolone and referred to local hospital for biopsy. No tesponse from hospital, gp kicked up dust and sent me to eye clinic at another hospital a few days later, ESR down to 40 no damage to eyes fortunately. First hospital produced appt a month later, so no biopsy as gp's fax had " disappeared into th ether ". Consultant there spent 15 months sending me to every other dept she could think of on the basis she did not think I had Gca although I did have PMR. All sent me back with comments such as " Gca a strong probability". After a 5 day stay in hosp after easter 2017 with sepsis and a discharge with a request for urgent rheumy appt ( which is booked for oct 2017) in june I consulted privately one of your recommended specialists who said he thought it could not be anything else! Now I have developed cataracts so bad I cannot drive, we live in the country and my husband is due for wrist surgery.
My GP is very anxious for me to reduce the pred, for most of this year I have been yoyoing around the 20 mg mark which leaves some pain but not impossible.
Various consultants have mentioned steroid sparing drugs, what are the community's experience of these?
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Cally55
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My local rheumy here in Italy is strongly of the opinion that, while they MAY help some patients with PMR he isn't convinced (and neither are most German rheumies he said), they have no place at all in GCA. They MAY help reduce the dose, there is no guarantee and they add another layer of side effects. And they don't work overnight. Nor, to the best of my knowledge, can your GP prescribe them without specialist approval. The speediest and most reliable option in GCA is tocilizumab - but I think you have to apply for individual funding because of the cost.
Your GP is being silly - if you need 20mg you need 20mg and after your history I'm not surprised you need 20mg - the sepsis will have set you back badly. Your GP may have kicked up dust originally - but HE could have sought an EMERGENCY appointment after your sepsis episode. Urgent just means a bit sooner than routine - so 12-18 weeks instead of the now mythical 18 weeks.
You have seen an eye specialist about the cataracts I assume? Are they happy to operate at 20mg? Some are.
Where are you? Who did you see privately? Dr Hughes?
Cally, it does sound as though you have had a bumpy ride, your first consultant sounding very similar to the first one I saw, who in spite of sending me to seemingly every clinic in the hospital, failed to diagnose me. I do hope the eternal wait for the rheumy appointment in October proves successful, but, if not, do let us know roughly whereabouts you are in case someone can recommend someone from their experience.
With regard to steroid-sparing drugs, I avoided those, preferring to stick to just the Prednisolone but always at the necessary dose at any given time. A few people have found that adding a steroid-sparing drug has helped them to reduce their steroid dose down to lower doses more easily but there are many people for whom this hasn't worked. If it does become necessary for you to take a steroid-sparing drug, then perhaps your new rheumy will be able to make a special case for Tocilizumab - it is at present prescribed for rheumatoid arthritis but not yet approved for the treatment of GCA, although we do very occasionally hear of someone for whom it has been prescribed. Good luck with the forthcoming appointment - may it herald better days for you.
I fought against 2 of them who wanted to put me on steroid sparers, the last one caused high blood pressure and I already have that . In any event you haven't been on steroids that long, the so called norm is 3-4 years and that's where I am now and down to 4.5
I developed cataracts in both eyes which were threatening to stop me driving . I found a brilliant Ophthalmologist who had no hesitation about removing them,I was on 10 for the first eye, he would have done them when I was on higher doses. You just need to find the right one
Thank you all for sound advice I will hang on till I see rheumy, who may be different from last time, the team on the letter is led by someone else. My gp is doing her best but I think she only sees the crises with steroids, not the pain without them!
Yikes! I've never heard of anyone with the suspected GCA of being on such a low dose of prednisone. 30mg is nothing. Everybody who's ever talked ABOUT GCA in any of my PMR groups that have a suspicion of GCA are put on 60 mg or better to start. I know you're not in the US but you need to try to do whatever you can to get into someone who can manage your Prednisone better than your GP is.
The recommended doses for simple cases are 40-60mg - yes 30mg is pretty low but if it is enough to manage the symptoms that is OK. The high doses are needed for patients with visual symptoms to reduce the risk of loss of vision.
Hi - I have been diagnosed with cranial GCA and this developed after PMR so the Pred dose was raised and the GCA was controlled initially by 21 mg Pred. I have since been on 19mg/ 20 mg of Pred for over a year. Each time I attempted to reduce I would have the head pains return. I have since started Leflounomide as a steroid sparer, this is by recommendation of my Rheumy. I have just reached 18mg, reducing using the DSNS method, reducing 1 mg per month. I must admit I haven't felt so well the last few days, with some dulled pain at the back of the head and faint pain at the sides of the head. I'm just going to wait a little while and see what happens. It is my belief too that the steroid sparers probably help the PMR symptoms but I'm not too sure re the GCA- perhaps time will tell. I also was under the impression ( again I'm not too sure if this is how I interpreted it) that they would try you on a steroid sparer before even considering actemera. I will investigate this with him if I need to. I would say that I have been taking Lefloudomide for about 5 months with no side effects.
It seems to me, and I am not a medical person in any shape or form, that the current pred dose is just about controlling the symptoms and not knocking it down to a comfortable level. Once I was on the 60mg, everything went away. As I reduced, (before reduction plans came along) if I reduced and the aches and pains did not subside after about 4 days I went back to were I had been comfortable and waited about a month before I tried again.
No-one ever talked about 'withdrawal symptoms', but if you have been taking any drug for a while, the body gets to like it and does not want to give it up...........you have to sneak up on it.
Remember TCZ ) now re-named Actemera is not yet licensed for use in GCA in the UK. It is for Arthritis, but it is expensive. You might like to read this:
Thanks jinsasc - like you said, I mentioned to my Rheumy, Rod Hughes, did I need to go higher- he disagreed and hence the position I'm in at the moment. Go back to see him early November although I can contact him by email before and he is very good at replying.
Hi Cally - I was diagnosed with GCA having had a Temporal Biopsy in August 2016, put on 60mg Prednisolone which stopped headaches overnight, by end of January on 22 and a half mg, having really struggled to reduce - my Consultant felt I should have a steroid-sparing drug to help me get lower and started me on Methotrexate. I managed to reduce to 16mg by the end of May but felt increasingly unwell and overwhelmingly fatigued so was taken off it and after a few weeks felt so much better, and have now managed to reduce to 12mg without it.
Interestingly Professor Dasgupta, the expert in GCA based at Southend Hospital and who is leading the research into Tocilizumab with whom I had a telephone consultation said that Methotrexate was only effective in treating GCA if used at the start of treatment.
Tocilizumab is being trialled in about six trusts in the UK, but not sure which ones, otherwise it is very expensive to get hold of.
The primary endpoint results were reported last November - it works. Actemra/tocilizumab has been approved in the USA for GCA and is being used in individual cases in the UK while they consider whether it should be approved.
There was a consultation document last year about its use in GCA and Takayasu's arteritis in the UK. It was approved for Takayasu's but not GCA - as there was inadequate study evidence. Of course there wasn't, it was 6 months before a large scale trial reported!! But they did say if such evidence was provided they would reconsider.
This all sounds very interesting. I seem to have a number of other slightly uncommon pred side effects as well as the infection and the steroid cataracts. I have been on 40mg of pred for short periods, my family find me unbearable after about 3 weeks and on one occasion I started to see things that weren't there! However be assured that I am not going to stop taking it, the partial loss of sight from the cataracts is bad enough!
I have Psoriatic arthritis and I have been on Imuran (azathiopirine ) for about 10 years ( I tried methotrexate, sulphasalazine, and Arava). April 2016 I was admitted to the local Public hospital with a 1 sided headache the pain was 10+++++ ( could not stand light or noise either ). I was in there for 2 weeks most of the time in pain (long story basically on high dose pain meds so nothing worked, I have since reduced them to a low dose ). I was finally discharged after a lot of tests and a 3 day ketamine infusion that lifted the pain.
My biopsy results from the temporal artery show -- Although the overall features are not entirely specific , they may reflect treated temporal arteritis. Report = Mild Adventitial Inflammation.
I was admitted to hospital on the 21st of July 2017. I had a 10+ headache and blurry vision and severe scalp tenderness.. Since the April 2016 headache I was getting sicker every day, by the time I went to hospital this time I was sleeping more than 18 hours a day, no energy, no appetite, night sweats etc.
I think the only reason I lasted as long as I did and without the eye damage was because I was on the Imuran.
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