Giant Cell Arteritis

[earlyfordv8]

I went from 60mg Prednisone down to 5mg and started experiencing headaches. I was diagnosed with GCA 5 months ago. I am now going up to 12mg from 7-8 -10mg per day. The headaches may have subsided but I will need 1 more day to be sure! My question is about aspirin. Some reports I read suggested Vitamin D3 for bone strength and aspirin 100mg ? I can only find Bayer 325mg in the states. How will aspirin react to the 12 mg of Prednisone? Plus I am also taking the Actemra injection weekly?

[DorsetLady PMRGCAuk volunteer]

Sorry to hear about your GCA, but have to say reducing from 60mg to 5mg within 5 months then no wonder your headaches returned - even with Actemra that’s breakneck speed.

In the past a small dose of aspirin [75mg] was prescribed alongside the steroids, but that seems to have fallen out of favour nowadays. Probably because it’s a NSAIDs so can also have an adverse effect on your stomach. But I can say that I was already on a small dose [as part of a cocktail of meds for high blood pressure] all the time I was on steroids with no issues whatsoever.

However I wouldn’t recommend a daily dose of 325mg and certainly not without medical supervision.

And if the headaches aren’t being controlled by the increased dose, please go back to your doctors. as a matter of urgency, at 5 months in, your GCA is still very much alive and kicking.

The guidelines do recommend a VitD3/Calcium supplement be prescribed alongside Pred plus as SnazzyD has said we recommend adding in VitK2

[SnazzyD]

Actemra doesn’t necessarily replace Pred because it only targets one inflammatory mediator Interleukin-6. If your GCA is driven by this alone or in the main, Actemra will be very effective in making Pred much less needed. However, if other mediators are involved, Pred which has a wider scope, will need to be part of the picture. It is individual as to how much. Your reduction speed has surpassed the level you need relative to your autoimmune activity which is obviously still active, which is unsurprising at only 5 months in. You need a new plan with your doctor to account for this.

I was started on aspirin 75mg but it was withdrawn. I was told that research no longer supported its use especially in view of the risks of stomach bleed. Pred makes one’s small blood vessels more fragile so you don’t want extra bleeding risk on top of that. Vitamin D3 is useful and many of us also take K2 to aid calcium deposition into bone rather than in arteries. This is very relevant if one is supplementing with calcium, something that is often prescribed with Pred.

[PMRpro Ambassador]

Low dose aspirin was recommended in the past but at the last compilation of Recommendations it was removed because the risk of bleeding outweighed the rather doubtful level of benefit. So now it is said not to use it unless required for another diagnosis.

However - as DL has said - no wonder you were struggling with a taper rate like that. Most people take more like 6 months to get to 20mg and GCA is very prone to flaring in the first 6 months although it canflare in the first 18 months. The only exception would be if you are also on Actemra and that does allow that sort of speed of pred reduction for at least half of patients. But even it doesn't work for all patients since GCA can have at least 3 mechanisms creating the inflammation and Actemra only works for one of them.

[spoof99]

I have been on 81mg ASA for years it was the first thing I did when I started having angina...Pharmacy to the ER which led to stents for 95% blocked artery.

I just recently doubled the dose to 162mg out of concern for a corotid artery blockage which may or not have caused my GCA like symptoms...

You should be able to get low dose aspirin in any pharmacy or use a pill cutter!

[DorsetLady PMRGCAuk volunteer in reply to spoof99]

Yes you can -but it should still be checked with doctor..

[spoof99 in reply to DorsetLady]

I plan on mentioning it to the Neuro next week when I talk to her....just trying to be a little pro active I don`t like the pace that things are moving right now...Took 3 weeks to get the ultrasound done and that is after me sending a couple of emails and a phone call asking where the referal was because the clinic hadn`t recieved anything from from the rheumie, rheumie also wanted a biopsy done right away what I got was an appointment 8 weeks later. When I told her this she said she will have her office look into it, I followed up on Friday and the office was closed...pretty bad given the office is only open 2 days a week.

Hopefully I can impress upon the neuro that we need to be a little more attentive to the situation!

[PMRpro Ambassador in reply to spoof99]

Did you decide to do that yourself? Aspirin won't alter a blockage, it is a platelet inhibitor and usually you wouldn't double the dose, you would combine it with another.

[earlyfordv8]

I appreciate all of the great comments and everyones concern!. My latest comment regarding Prednisone, I said Idid get down to 5mg and started getting headaches again. Dr suggested going up to 20mg but I decided on going to 12mg. The last 2 days have been ok! I picked up a new prescription of Prednisone today and my dr put on the label to start at 20mg for two wks then drop to15 mg for 2 weeks and then 10 mg til I see her in late April. Should I follow her advice or stay at12mmg and see how it goes? Sincerely Earlyfordv8

[PMRpro Ambassador in reply to earlyfordv8]

If you are OK at 12, keep going. It really isn't necessary to go back that far if you have overshot the dose you need. Gives you a stash of pred in reserve too!

[DorsetLady PMRGCAuk volunteer in reply to earlyfordv8]

See how things go on the 12mg… if it's enough then fair dos… why take more than necessary? But at least you do have more if they are required.

[earlyfordv8]

thanks for your advice! Not sure whether to go to 20mg or stay at 12mg? I'll sleep on it!

[PMRpro Ambassador in reply to earlyfordv8]

If 12 is doing the job - and it should really - then it is a waste of pred going to 20. And I don;t mean in terms of the tablets, I mean in terms of accumulated pred dose which is a significant factor over the time of PMR.