Heading for a flare. Shall I add an immunosuppressant?

[Luciejane]

I have GCA (3.5 yrs) I'm adrenal insufficient and just had my 3rd Synacthen test last week. The results show that adrenals are slowly improving but not where they need to be. Been taking 2.5mg pred for a couple of months. However my CRP and ESR which have been normal for months are now raised, CRP 16 and esr 26. Not too high but my neurologist thinks it signifies heading for a flare. Increased to 3.5 for the last week and definitely feel better. He now thinks I should add an immunosuppressant drug to help me. I've always been nervous to do so but if it can help me get into remission maybe I should?? Then it's a question of what to take and he's said we should consider the biological, one which I know is widely used or methotrexate and he mentioned another. All thoughts welcome please!! Thank you

[PMRpro Ambassador]

I replied on the other thread so I'll copy and paste here for completeness. I also meant to say - I would be surprised if they approved Actemra/tocilizumab when youa re at such a low dose. You certainly don't have "refractory GCA" by our standards if 3.5mg pred manages it. It can take more than 3,5 years to burn out!!

"An immunosuppressant drug will only do the same as a little bit more pred appears to be doing - possibly. It will only work as long as you are taking it, the same as taking enough pred. And apart from Actemra nothing is likely to entirely replace pred. In fact, even Actemra won't: it works 100% for about half of GCA patients. There are at least 3 mechanisms that create the inflammation and Actemra only works for one of them. You would still require pred for the others if YOUR GCA is due to them.

You obviously need slightly more than 2.5mg, it is likely I think that 3mg would be enough and I personally think it is crazy to add in another heavy duty drug that isn't guaranteed to work at that low a dose. I know that Prof Sarah Mackie wouldn't, That would rule out methotrexate and leflunomide (probably the other he mentioned). And arguably the longer term adverse effects of that low a dose of pred are far preferable to introducing the biologic, Actemra.

You will get into full remission with GCA, i.e. no symptoms with no drugs, when the underlying autoimmune disorder burns out and stops. There is no drug available that will achieve that. They are all only potential steroid sparers. If you were stuck at 13mg it would be a different matter, but you aren't.

PS - there is a way to go before they can say you have adrenal insufficiency since it is hardly surprising that your synacthen test is suboptimal when you are still on 2,5mg pred, it can be loads to suppress corticol production. They are wasting time and money repeating them yet.

[Luciejane in reply to PMRpro]

How do you define refractory GCA? I've had 2 flares trying to get below 10mg. Now I'm below 10mg and my bloods have been within normal range until now.

[PMRpro Ambassador in reply to Luciejane]

What you are looking for when tapering in the lowest effective dose at any given time. The pred cures nothing, it is a management strategy to manage the inflammation an underlying autoimmune disorder creates. In GCA you start with a very high dose to knock the inflammation out as quickly as possible because of the very real risk of sight loss. Then you titrate the dose to find this lowest effective dose - it will reduce over time but there is no fixed time line and GCA can often take 4 or 5 years or longer to burn out so you don't need pred any more. In our books, 3 1/2 years is fairly average and you being at 10mg certainly wouldn't make us consider it refractory. It has responded well to pred and you have been able to taper the dose pretty well. Had you got stuck above 20mg, maybe. There are doctors who believe that it should be gone in 2 years - if only. They would label yours refractory but we say they live in cloud cuckoo land.

[Luciejane in reply to PMRpro]

Ok thank you. I think my specialist looks at this differently. As an autoimmune condition he wants to dampen the immunity in order to help the GCA go into remission and therefore get me off the pred which has already stripped me of 8% of bone, given me cateracts and I live with a 24/7 tingling in my head hands and feet.

[PMRpro Ambassador in reply to Luciejane]

But many of us have tried these drugs and it hasn't helped the GCA/PMR go into remission - he's right, that would be the ideal. But it doesn't work like that, Not even Actemra/tocilizumab is guaranteed to do it.

[DorsetLady PMRGCAuk volunteer in reply to Luciejane]

In my view it means when the GCA is not responding to the treatment.. and that’s usually noticeable at higher doses

As you have got so low without significant issues then the implies the treatment is working for you.

However as you are flaring at similar doses then would say you have reached your lowest dose that is managing your disease (for the time being). Won’t always be, but is for now.

For many GCA lasts 4-5 years…so you may have a bit more time to go.

[Luciejane in reply to DorsetLady]

thank you