Reducing Pred and taking other tablets.

Been to see rheumatologist today for all my test results post PMR diagnosis end of Dec17. Disappointed that the Biopsy for GCA is positive. But ESR has come down ‘significantly’ so the plan she had suggested is to reduce Pred from current 40mg to 20mg by the time I see her again in April. I. Worried about the dreaded flare up that I have read about on here. I have a clinic appointment in between for a blood test. I’m also going on bisphosphonate to protect my bones as my mother has osteoporosis as did her mother... I also need folic acid to go with the adcal and aspirin I’m currently taking. She has also ordered a bone scan in 4 months time when I will have been on Pred for 6 months by then.

Any thoughts, advice, experience welcome please...

Thanks

Karey

[Hidden]

Hi,

If you have GCA it doesn’t really matter if the biopsy is positive or negative. The good thing about a positive biopsy is no one will ever question your diagnosis.

The taper from 40 to 20 seems a little steep but I pretty much managed my own schedule and just let the doc know when I went in how it was going. I read up on everything and decided the slower route was better for me. I am at 2 years and down to 4mg prednisone currently.

I am sure there are other GCA folks out there that had a similar experience as you in the beginning who will offer their opinion .

Best

Karen

[Hidden in reply to Hidden]

That was my initial thought - seemed steep drop in a short time, from all the advice I think I will get to 20 in my own way, I feel so well at the moment I know it is Pred euphoria but I worried about having a flare and going back to square one.. thanks for your reply x

[DorsetLady PMRGCAuk volunteer]

Hi Karey,

Welcome, sorry to hear you have GCA, and hope the Pred has improved things for you.

You don’t detail your reduction plan, so the only thing I would say is you ideally want to be on the initial dose for at least 4 weeks (but I’m guessing you maybe are on for 2 or 3?). I think the guidelines say reduce then at 2 weekly intervals- but I’m not entirely convinced that that is long enough, it can sometimes take that long for a flare to occur. 3-4 weeks is better, then you are sure that the current dose is controlling symptoms before you reduce again.

I expect she also told you to reduce 5mg at a time, that will probably be okay until you get to 25mg, then you might need to do 2.5mg a time.

You may be fine on the tapering plan she’s given you, lots are, but don’t reduce if you don’t feel your symptoms are under control.

Have a read of this as well

healthunlocked.com/pmrgcauk...

[Hidden in reply to DorsetLady]

She told me to reduce from 40 to 30 starting tomorrow for 2 weeks then to 25 for 2 weeks then to 20 for 1 month...

[Hidden in reply to Hidden]

Thanks for those links x

[Polywotsit PMRGCAuk team member in reply to Hidden]

Hi there. The reason that you are encouraged to drop down pretty steeply is that you don't need those high doses once the inflammation in your arteries has been damped down. Giant cells will have been dispersed and over-production of inflammation-causing neutrophils in your blood will be under control. At 40mg a day the prednisolone is starting to strip your bones of calcium within a few days. So if you can drop to 30 and then say to 20 or 25 you will be doing yourself a favour. Not everyone can do it - some can. In my opinion and that of all the medics I have asked about this, 2.5 mg a time is too slow when you are on high doses - it means that your body is getting dependent on those high doses and you are also increasing your cumulative dose of steroid. Therefore the steep drop at the end of the acute phase, and slower drops from about 15mg down. Hope it goes well for you.

[Hidden in reply to Polywotsit]

Thanks for that it is really helpful

[DorsetLady PMRGCAuk volunteer in reply to Polywotsit]

Hi Kate,

I agree with most you say, however I don’t consider 25mg is a high dose in relation to GCA which is why I suggested the 2.5mg drop from then on

It’s all a matter of perception I guess, but I would rather the GCA was fully controlled in the first few weeks/months, which is when a flare is most likely so I’m led to believe, and sight loss is still a possibility (albeit very small).. But then maybe I’m prejudiced in that aspect.

[PMRpro Ambassador in reply to DorsetLady]

I agree with you DL. I can accept that once the giant cells have gone there is a lot less need for a high dose. However - NO-ONE can tell how long it takes to get rid of them or how long the underlying autoimmune part lasts and I believe there is a VERY good reason why Quick and Kirwan's reduction approach works well to avoid flares. They keep their patients at the starting dose for a month - which is generally 60, not 40, and every dose thereafter for a month, down to 20mg. Their flare rate is 1 in 5 instead of 3 in 5:

rcpe.ac.uk/sites/default/fi...

Start at 40mg by all means - but don't rush the patient down to a lower dose too fast. It is predictive of trouble ahead - a loose quote of Quick and Kirwan.

As for "At 40mg a day the prednisolone is starting to strip your bones of calcium within a few days" - I believe that is often over-egged. Try telling that to the 2 ladies I know who never even had calcium and whose bone density didn't change during their GCA journey. The incidence of osteoporosis in pred patients in the long term is not significantly different from that in the general population. Most of the time they don't know what the patient's bone density was before pred - the first dexascan should be done in the first couple of months but many patients don't get one without a major fight. So the bottom line is - they don't know.

Just like the bottom line with high dose pred is: none of the side effects are worse than the potential side effect of CA. And at present we have several people on the forums who experienced it.

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Hi,

I think you quoted somewhen that the uncertainty of the state of the GCA cells can still raise concerns in the first six months. It was in a reply to someone flying with GCA, and the major concern was if a patient has it in their large vessels as opposed to the head.

[PMRpro Ambassador in reply to DorsetLady]

Must have a look - but it does ring a bell.

[Polywotsit PMRGCAuk team member in reply to PMRpro]

I am a great admirer of Professor Kirwan and consider he and his team have been terrific leaders in making rheumatology listen to the patient voice. However, following Quick and Kirwan's reduction schedule from 60mg per day means that the patient will take in over 5 grams of prednisolone in four months. That's more than they will take on in a whole year at 10mg a day. So we anxiously await the adoption of effective steroid sparing drugs to reduce the overall consumption of steroid in the acute period and afterwards. There are several steroid sparers available for rheumatoid arthritis and other forms of vasculitis. GCA has been in the shadows and the idea that it's acceptable for GCA patients to be on high steroid doses for months on end hasn't helped us move forwards. I hope we're on the brink of a breakthrough with a new generation of drugs coming through. We're worth it.

There are imaging techniques available now, such as Optical Coherence Tomography, that can non-invasively show the reopening of the arterial lumina (the inner tube of the arteries) following initial steroid treatment after a short number of weeks.

[PMRpro Ambassador in reply to Polywotsit]

There is also work by Dasgupta that shows there is still evidence of neutrophil activity after 6 months of high dose pred (i.e. over 20mg) even though the blood markers are lowered, thus allowing the potential for resurgence of inflammation when the dose is reduced too much. A few weeks of high dose pred does NOT assure all the risk is gone.

Obviously I agree that the patient needs to be on the lowest effective dose of pred - but it should not be a breakneck reduction regardless of the patient reporting a return of symptoms. And that happens a lot.

DMARDs in RA are not "steroid sparers" - they are Disease Modifying Anti-Rheumatic Drugs. They work on the mechanism of the disease which is a very different matter.

[Polywotsit PMRGCAuk team member in reply to PMRpro]

Yes, it appears that after an initial sharp drop, there is a resurgence of neutrophil activity at about 6 months in some people. However, we were discussing the acute stage. And as the BSR told NICE committee on Tuesday, no dmards have proved to be reliably effective in GCA. Karey at least doesn't seem to be on a breakneck reduction, which is good.

[Hidden]

There you go Karey, all good info!

Hugs💐💐

[Jocelyn344]

I have found that 300 mg aspirin helps with 'inflamed' state, and I can function. GP does not like it, but it make life tolerable. To increase calcium intake I am not taking adcal, it can give the wrong kind of bone, but make sure we have whole milk, proper cheese and eggs. How some people can get down to a low dose quickly is beyond my body!!