GCA and PMR reduction question.

Sorry cc - I'm not a mind reader - why were you surprised? What implications?

Your description fits with someone with GCA whose presenting symptoms were the PMR bits just before progression to the temporal artery and surrounding arteries being involved. GCA doesn't have to start as "GCA", it can pussyfoot about looking like PMR for a long time. You can have GCA without it ever progressing far enough to appear as visual symptoms - they only manifest when the blood supply to the optic nerve is affected.

I haven't had GCA but MrsO has, she had severe PMR for over a year before the GCA signs and symptoms appeared. Some people never have PMR pain - the inflammation is not all over, what symptoms you have depend on which arteries are involved.

Why were you surprised at 110 weeks taper for PMR? That's 2 years, the textbook time. We are beginning to wonder whether the "flares" so many people experience are actually reduction problems - hence our suggested very slow tapers. Kirwan and co get a flare rate of 1 in 5, a third of that found with other reductions. I suspect most of their flares come in the below 10 range - too fast for a minority of patients. You can't tell in advance who will have problems - so our idea of VERY small steps in a reduction for all covers that.

Eileen

cc

"When you reached the dose where you started to feel symptoms again were the first symptoms that you felt that of PMR or GCA?"

I was never completely pain-free down through the doses but my blood test markers were used as a guide to whether it was safe to reduce (I'd had very elevated markers at diagnosis). I reduced successfully from 40mg down to 5mg when all my body pains started to worsen. I had previously been advised to continue my reductions by 1mg a month from the 10mg dose so, knowing no better at the time, in spite of the worsening pain I continued reducing down to 3mg - at this point I feared having to take to my bed again and after a phone call to the rheumatology helpline was told to increase back to 10mg.

So, finally(!), to answer your question - the returning symptoms that I experienced at 5mg were those of PMR and not GCA.

Eileen and MrsO, thank you both for your reply. I am just trying to understand my problem. And add a note to address questions that I have not seen answers for. This taper Is scarystuff especially when both you and your partner have vision problems.

This is the table that I referenced in the entry portion of this note and it was taken from a PUBLIC document at http www w3 org. I am at the PMR regimen point after 5 months.

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table 5 Our giant cell arteritis treatment regimen over 124 weeks

• 60 mg daily for four weeks, or until remission induction, then

• 50 mg daily for four weeks, then

• 40 mg daily for four weeks, then

• 30 mg daily for four weeks, then

• 20 mg daily for four weeks, then

• As per PMR regimen for 104 weeks

Best Regards,

CC

This is what I located in the "Physicians Reference" portion of this web site. I guess I should have done my research before posting my earlier note.

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Recommended treatment regime:

The suggested regimen is daily prednisolone 15 mg for three weeks; then 12.5 mg for three weeks; then 10 mg for four to six weeks; then reduction by 1 mg every four to eight weeks or alternate day reductions (eg, 10/7.5 mg on alternate days).

It is important to treat the patient's symptoms and not to rely exclusively on the inflammatory markers to guide treatment. A persistently or recurrently raised ESR or CRP may indicate an underlying or intercurrent disease.

After the first few months of treatment, once the disease is controlled, asymptomatic patients with persistently raised inflammatory markers should not continue to be treated with high doses of prednisone just to reduce these markers.

The recommended continuing dose of prednisone is the lowest dose that keeps symptoms in remission. Patients with chronic disease are usually maintained on 2.5-5 mg prednisone daily.

Glucocorticosteroids are often needed for two to three years, although about 10% of patients will relapse within ten years and require longer courses of treatment.

cc - The first reduction you showed is that from the Kirwan group in Bristol which I reference frequently - obliquely since we are only allowed to reference links within this forum but it is in a pinned post in this thread.

Unfortunately not many physicians have read the second reference you posted. It is similar to what we say repeatedly!

Eileen

Hi

I started off with GCA and never had raised levels which I believe happens in a lot of cases. I started at 30mg and after 21/2 years am only just down to 141/2. Mt PMR symptoms started after about 6months. I find that I can only go down 1/2mg at a time but I am now following Eileen and Mrs O advice as I have had a couple of flare ups. One thing worrying me I don't have any blood tests as doc says mine weren't raised at beginning of diagnosis so there is no point. Has this happened to anyone else.

Will close with the thought that its a beautiful sunny morning here in Leics which always raises the spirits.

Carol

cc

Bear in mind that all the "recommended" treatment regimes you may come across are just that...."Recommended". Everyone is a little different in both their severity of disease and in their response to steroid treatment. The main aim is to get you to the lowest dose that controls the inflammation - now that dose can be tricky to spot but with a slow tapering regime it is much easier to identify the dose at which any symptoms might be returning and quickly go back to the previous dose. At larger and faster reductions, it is much more difficult to identify that important dose at which dose the inflammation might start getting hold again.

Just to quote my experience, as someone whose blood test markers always corresponded to how I felt, after two weeks I was able to reduce from my 40mg starting dose to 30mg; after another week from 30 to 20; after a week from 20 to 15; after two weeks from 15 to 12.5; after two weeks from 12.5 to 10. Before each reduction my symptoms were checked and blood tests repeated. My reductions were then slowed to 1mg a month, which proved successful until the 5mg point as outlined in my previous reply. 5mg is often a sticking point for many patients - the 10mg dose often seems to be another sticking point.

As has been mentioned many times, some patients do not have raised blood test markers and for them it is crucial that they are guided by their symptoms alone. I considered myself lucky in having raised ESR and CRP markers at the outset which returned to normal quite quickly, certainly within a month of my starting dose, and these were continually checked by my rheumatologist before each reduction.

About 1 in 5 patients never have raised ESR or CRP and the chances are that if they weren't raised at the start they won't tell you much later either - they are only a guide though. I've never had an abnormal reading in 10 years!

Whilst those tests may not mean anything you do need other blood tests done at least every 6 months - to keep an eye on steroid-induced problems like diabetes if nothing else. You also need an annual eye check to measure pressures (as in glaucoma) and watch out for cataracts but that can be done by an optician in the UK. Regular BP checks are also a good idea.

Carol

"One thing worrying me I don't have any blood tests as doc says mine weren't raised at beginning of diagnosis so there is no point."

Your Dr is probably right in that if your ESR and CRP weren't raised at diagnosis, then it is unlikely they will rise during your treatment. However, I would have thought that some routine/general blood tests would be carried out periodically whilst someone is on steroid treatment. Eileen is someone who doesn't have raised inflammatory markers and I'm sure she will be along with her experience regarding blood tests.

Hopefully, you have had a Vitamin D blood test - very important, as deficiency can lead to pain in similar areas as those of PMR, and possibly other illnesses as well.

Do hope the "flares" are a thing of the past now on the half mg reductions.

Sunshine here in the South East too - long may it last!

Thanks Mrs O. I am type 2 diabetic so spec get my bloods tested that way but def never had a vit D test. Didn't know that could cause pain. Its always nice to check in with the group I've learnt a lot from you all.

Carol

I cannot understand why Doctors dont adhere to ESR markers my Doc found I had PMG by my Blood test which was 38, after exactly 12 Months I am at Present with an ESR of 10, and following the old dose /new dose method.Hopefully I will be fully on 6mg shortly by following this method which I cannot thank enough for the info. I saw my Doc this week and he agreed with method if that is what I am doing and it agrees with me, I see my rheumy in two weeks lets see what he says. Good luck everyone.

The ESR is only a guide - in some people it is never raised, in others it goes down with pred and never goes back up even in a flare according to symptoms or lags behind by some considerable time. That may of course in some cases be due to the return of symptoms being from steroid withdrawal not a flare of PMR - hence our suggestion of the "dead slow and nearly stop" reduction idea.

Thankyou Eileen you have been so helpful , I am on your dead slow reduction and the withdrawal is not so noticeable. I intend to keep on this as long as I can and my Doc said he would rather I had New dose 6 days /old dose 1 day etc, but I feel happier with your suggestion, Thankyou so much .