Azathioprine

[sslhayes]

Has anyone taken Azathioprine for GCA with any success? I was diagnosed with GCA three years ago. I have been taking Pred ever since but each time I get down to 5mgr my inflammatory levels go up and the rheumatologist increases the Pred. She now wants me to take Azathioprine as well. However, having read the information on it I’m not madly keen. I would be grateful for any of your experiences of this drug.

[Blearyeyed]

I'm sure Pro will fill you in with the studies on this and you will hopefully get answers from someone who has tried it.

It is a steroid sparer , but Methotrexate is used more commonly , as it works quicker with better results.

I remember reading about a small trial were the Azathioprine took up to a year to make a significant difference over a Placebo on helping to reduce Steroid dose for GCA and PMR , MTX if you can tolerate it is meant to start to help within a month.

Azathioprine from my friends experience for another autoimmune condition had to be stopped because it was having increasing side effects. They since took MTX and have reduced their steroids on it and had less side effects.

It does make a difference which medication you can take as an individual though.

[HeronNS]

Just as a matter of interest, you say your inflammatory levels go up, but do your symptoms also reappear or worsen?

[sslhayes in reply to HeronNS]

No and I tell the rheumatologist this every time. I always feel weird on the Pred but never feel any different whether inflammatory levels are lower or higher!

[Blearyeyed in reply to sslhayes]

Have you got any other conditions that might affect your inflammatory markers as well that they aren't taking into consideration ?

Even things you may not think about like rashes or headaches ?

Is it the Rheumatologist that says you need to stop the Taper or increase just on the inflammatory markers?

[Hidden in reply to Blearyeyed]

Out of interest too. How often should inflammation blood tests be taken to determine how our levels are....then surely it would be appropriate to start to taper our Pred, but not before.

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

Early days I had mine done monthly - then provided I felt alright in myself and the levels ok I reduced.

Later on, either every 2nd or 3rd month.

My GCA tapering was controlled by my GP and me - and my GP who had missed my original diagnosis was extremely cautious.

Not everyone has raised markers - so testing them has little point really. But others like me, like to be aware of them.

However, you should always be guided by your symptoms - or rather lack of them - when you reduce (supported by bloods if you/Dr want) - and NOT always by the calendar - if you’ve had a rough couple of weeks - just be aware that can put your taper back. Unfortunately some doctors don’t allow for the vagaries of life to disrupt ‘their’ plan.

[PMRpro Ambassador in reply to Hidden]

They are so unspecific that you do need to be clear about how they apply to YOU. Were they even raised at diagnosis? Certainly if they were and then fell steadily in response to pred, accompanied by improvements in symptoms, then monitoring them monthly makes some sense in the early months of pred management if that is an option - it isn't always easy to arrange monthly blood samples to be taken and dispatched to the lab in a timely manner (the ESR must be done within 4 hours).

[Blearyeyed in reply to Hidden]

As DL said , I was tested every couple of weeks in the first six weeks. Then each month for two months.

I had two big flares when I was rapidly reduced on steroids early on, this reduction was done first for diagnosis , then to try to reduce my steroid use because of my other Health needs , I was tested during those Flares.

Now my inflammatory markers get done if I go in with inflammatory symptoms , not necessarily GCA or PMR symptoms , but also for other things to help them rule out those conditions or an infection or injury as the cause of my Pain.

Recently , my markers have been raised a few times , but not because of GCA / PMR , from chest and stomach infections and Cellulitis.

It's the symptoms as well as the markers that count , and then when it's advised the positive reaction to Steroids , inflammation changes are not always GCA , PMR or Pred related . It's good to remind them to look at all your symptoms properly when you go in with problems and not just assume that it's always PMR or the Pred.

[Katiecatweazel]

Hello, Everyone is different but my experience with Azathioprine in conjunction with Pred for GCA was short and sharp! After a few days I was severely affected, couldn't balance and I was taken off it straight away. Eventually none of the DMARDS tried worked for me and I was given the go ahead for Tocilizumab, which seems to be going well. Best wishes to you.

[DorsetLady PMRGCAuk volunteer]

If you don’t have a return of symptoms - but get raised markers at 5mg then I think your Rheumy needs to be looking for other causes.

Many things can raise your markers - from a stubbed toe to a virus to a reaction from an operation - latter happened to me.

If it’s something long term - then when you are above 5mg it’s controlled , but below it surfaces again. Do you have any other issues that might cause it? However obscure you might think they are?

What do you mean by you feel weird on Pred irrespective of blood levels?

I think your Rheumy is perhaps taking the easy option and blaming PMR when it’s not that.

[PMRpro Ambassador]

Really not sure that there is much evidence for it as a steroid sparer in PMR/GCA but if after the 3 years I had been able to get to IRO 5mg and it controlled the symptoms unless I tried to push it lower I would be saying no to aza.

Below 7mg is what is called a physiological dose, similar to the amount your body produces naturally to be able to function. As such it has few adverse effects and you could remain at that sort of dose for the rest of the time it takes for the GCA to burn out without any real problems. I think the consensus on the forum is that GCA takes 4 or 5 years to go away altogether for most people - many doctors are very impatient, believing the "GCA lasts 2 years" mantra which is palpably untrue for the vast majority.

At this stage the return of adrenal function is also a problem so that will require a slow reduction.

This is the only study I know of:

ncbi.nlm.nih.gov/pmc/articl...

where they found it takes a year to show any significant lowering of dose - but it is a tiny study, very poorly powered, and that may be the reason for the apparently slow onset of effect.

In that year you might find that with a VERY slow taper that you could get to a lower dose anyway - so why add another drug with its own layer of side effects? DL's last reply says the rest of what I'd say. If your symptoms are stable there may be another reason for increasing markers which are so non-specific they can only be taken as part of a big picture. They aren't 100% for monitoring the disease - just a guide and are ALWAYS trumped by symptoms.

[Cally55]

I have found azathioprine helpful in reducing my prednisolone dose. I have taken it for over a year now and managed to drop from 15mg to around 10 quite quickly. In the last month a neurologist increased my dose of azathioprine to 150mg from 125 and the long term upper body pain I had has gone. This has been accompanied by a small increase in pred, from around 8mg to around 10.

I have experienced no obvious side effects. Previously I tried methotrexate, gave up after 2 months because of dizziness and leflunomide which I managed for 8 days! Violent gut rot among other things.

I have had GCA for 4 years now and have had nasty side effects from prednisolone. I still have some eye pain, hence the neurologist but it is definitely better on this regime. I have not had raised markers but bloods have never been taken when I reckon I am having a flare!

I am waiting for an appointment for an MRI to further investigate the eye pain.

These steroid sparers seem to work for some and not for others. For me it has been worthwhile.

[Theziggy]

Took it for a few weeks , but it caused breathing difficulties and faintness, so was taken off it