New member--trying to figure this all out- tapering with symptoms but no inflammatory markers

[AmyLW]

I am currently tapering from 50 mg started in May to now at 22.5mg. My headaches and eye pain were gone but have now increased again. My CRP and Sed rate NEVER show inflammation. My doctor doesn't want to stop tapering. Has anyone else been treated without blood inflammation markers? I am desperate to hear others' experiences with this. I want to be off prednisone (as does my doctor) but I don't want to risk losing my eyesight. How do we taper without helpful blood results

[DorsetLady PMRGCAuk volunteer]

Hi AmyLW,

You are not alone in never having raised blood markers, despite what the medical profession may say. Were they ever raised? If not, then how was the diagnosis reached?

Blood markers are not the most important tool to gauge whether you should reduce or not - a. As you know not everyone has raised figures, and b. Sometimes they lag well behind any symptoms.

So, the only way really to judge whether to reduce or not is symptoms, or rather the lack of them! If your headaches and eye pain is back, then I would suggest you have gone too low already, and certainly shouldn't be thinking about reducing any more. In fact the opposite, you need to increase the dose to get control of the inflammation again.

It's a delicate balancing act - you need to take enough Pred to keep the inflammation under control at all times, whilst SLOWLY trying to reduce.

Unfortunately nobody can say how long the GCA is going to take to go into remission - there is nothing you can do to hurry it up. It takes as long as it takes, and that varies from person to person, but 4 years is a reasonable pointer. In some lucky people is quicker, some longer.

We all want to be off Pred, but it not as easy as that, whilst you have GCA or PMR, for which there is no cure, you need to take it, and it's a case of finding the lowest dose that works for you.

Your doctor may not want you to stop tapering, but if he ignores your symtoms then he is irresponsible in that he could be putting your sight in jeopardy.

To answer your question - you need to taper only when you have no symptoms. I always did mine at monthly intervals making sure I was symptom free be fore I tried the next step down - whatever that may be!

[PMRpro Ambassador]

It doesn't matter what your blood inflammation markers do or do not do - the symptoms are ALWAYS trumps. According to the medical literature, up to about 20% of patients with GCA do not have raised markers - and many of them do not have any symptoms either. This is a condition called occult GCA.

If you are having symptoms again then you MUST at the very least stop reducing and preferably go back to the last dose that managed the symptoms.

You are under a rheumatologist I assume? They should be aware of the risks of relentless tapering when symptoms are present. If not, time to look for another perhaps if he won't listen to your complainsts of a return of symptoms. It is, when all is said and done, your sight that is at risk, not his.

The top experts in the field regard PMR as an absolute minimum of a 2 year taper - GCA starts with a much higher dose of, say, 50-60mg and they take about 5 months to get to 20mg and the beginning of a PMR reduction, so GCA is nearer two and a half years - that's with a simple, uncomplicated reduction with no flares.

[Doralouise77 in reply to PMRpro]

I am having a similar problem now. My CRP has always consistently spiked with a flare and gone down as symptoms went away. (sed rate doesn't elevate). Last week a headache started and CRP was elevated at 12 (normal <6). I went up to 40 (and have stayed there), which brought complete relief for a few days, but headache came back beginning of the week and yet yesterday CRP was down to 3. I've always relied on CRP level along with symptoms so what's different now? Rheumy away yesterday and no one local with any expertise. I assume I increase again?

Thank you.

[PMRpro Ambassador in reply to Doralouise77]

Difficult to say why that has happened - but GCA isn't the only cause of headache, it can be a side effect of pred too. Is it just headache - or are there any other GCA-type symptoms. And is the headache the same as your "GCA" headache was at the start?

[Doralouise77 in reply to PMRpro]

That's what I've been struggling with....when it started I spoke to my rheumy who asked the same thing....I described it to him saying it didn't feel like the original GCA one and he agreed.....it had started across both sides of neck/back more in the muscle/fleshy part and across the whole forehead, with waves of nausea, more like a migraine, but has progressively moved to the right side severe on the occipital bone and up into ear and eye which is my typical GCA headache.....but lying here now on ice it has moved again around to the back and across forehead and accompanied by nausea....I never experienced nausea with them before....this is 2 weeks now I've had this....with only short limited reprieves....

[PMRpro Ambassador in reply to Doralouise77]

Celtic on here had nausea with her GCA - and occipital headache is sometimes typical in GCA.

It could be the GCA has got worse - and you need a higher dose of pred to get it under control. 40mg is really the bottom end starting dose for straightforward cases. 60mg is far more usual from the top experts and they will go as far as 80mg when patients have visual symptoms. Would your rheumy let you try a higher dose to see if it brings it under control?

[Doralouise77 in reply to PMRpro]

Well I was in so much pain I went to the ER....not a GCA flare....headache gone....exhausted but will try to update later...thanks everyone for their input...it did help me sort things out and do something...

Cheers

[PMRpro Ambassador in reply to Doralouise77]

Good - not the trip to the ER but the result!

Looking forward to the gory details - in the meantime, REST!!!!!!

[missmylefteye in reply to PMRpro]

Just saw this. Huh, I had had occipital migraines for most of my life before getting this occipital neuralgia.

[tinwoman in reply to PMRpro]

Hi haven't been on site for a while. Wondered if you have heard of using LDN to help reduce steroid dose?

Your informed contributions to the site are much appreciated.

Regards

Tinwoman

[PMRpro Ambassador in reply to tinwoman]

It is a question that comes up about every 7 or 8 months. Originally when it was asked we on the charities looked into it and decided there was no evidence to support it - other than from people who are standing to make money out of seeing patients and providing a script. The last time it was mentioned I contacted one of the top PMR/GCA experts in the UK and asked her opinion - and she said much the same. I do know of one lady in Norway whose GP has put her on it - I have no idea of their system and how it is paid for. I haven't heard anything from her although I did ask her to report back with her experiences.

I had a bit of a google - and saw that one of the links claimed that "LDN is widely prescribed for autoimmune disorders". I seriously doubt it. If it were the rheumies I know would know about it. Another link says there are "many studies confirming the effect" - that I know is untrue! There are many claims - and that is not the same.

You may find this interesting:

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

and this

sciencebasedmedicine.org/lo...

I WOULD be interested to see a study of using it as a steroid-sparer in PMR to see what happens. It is safe enough used short term - but long term studies have not been done. Perhaps I would be more impressed if they didn't claim it worked for so many things!!!! That is far too often a sign that really it works for very few...

[tinwoman in reply to PMRpro]

Many thanks for your prompt reply. I'll have a look at the two links you kindly sent.

Regards

[vsapey]

I too am new to GCA/PMR. I am stuck on 40g prep and don't feel I can go lower without my head symptoms. My markers were low so wasn't given any medication, GP didn't think I had PMR and offered me Physio. My osteopath suggested PMR SO I looked up symptoms, I fitted into every box. When I started getting temporal headaches and jaw ache I went back to GP,got steroids 50mg. 80% of symptoms gone within a couple of days. So My bloods never seem to correspond with my pain, so ignoring bloods and concentrating on pain as my leveller.

My rheumatologist can't see me at the moment because of patient work load.

Without this site I would be completely lost.

[PMRpro Ambassador in reply to vsapey]

Given that GCA is a medical emergency - that's a bit off saying you can't see a patient having problems! Is there no other option?

[DevonMichael]

Hi I have just had a review with rheumatologist for my GCA having gone from 40mg in June to current 15mg and when I sought advice in the event of flare he told me the strategy was to go back to the previous dose that worked.

My inflammatory markers have normalised with CRP at 4 (previously 71.9) and ESR 10 (previously 130) so clearly these can fluctuate somewhat!

I too am concern about eyesight threat and read in an 'Arthritis Research UK' booklet on GCA that "your doctor may also suggest low-dose aspirin as extra protection against loss of vision". I raised this with the rheumatologist and he is recommending to my GP that I go on 75mg of aspirin along with the steroids.

Good luck with the tapering !

[PMRpro Ambassador in reply to DevonMichael]

Just to mention - the most up-to-date international recommendations which are about to be published will recommend AGAINST aspirin as it doesn't seem to make much difference and it increases the risk of gastric problems.

I know - they'll decide one of these days! Though I suppose it does show they are keeping their eyes and ears open...

[nuigini in reply to PMRpro]

PMRpro, great to see the statement "the most up-to-date international recommendations...are about to be published". Realizing that it's likely impossible to pin down the release date, do you think it might happen before the end of the year, or early in the new year?

[PMRpro Ambassador in reply to nuigini]

I honestly don't know. But you can get a foretaste from a Powerpoint presentation given by Prof Bhaskar Dasgupta at a recent PMRGCA meeting in Glasgow. Go to this page

pmrandgca.org.uk/research-a...

and there is a link to it under the report of the conference.

[granny-b in reply to PMRpro]

Very interesting presentation.

[tgca in reply to PMRpro]

My GP didn't mention aspirin at the start of GCA but the rumy did so I am taking them...it seems most sites recommend aspirin ?!

[PMRpro Ambassador in reply to tgca]

It was recommended in the "old" recommendations. They seem to now have decided it doesn't help - or rather, it doesn't help enough to be worth risking the gastric bleed side effect.

[tgca in reply to PMRpro]

Hey ho, out with the old, in with the new. Thanks

[DevonMichael in reply to PMRpro]

Thought it might be useful to show this from patient.info website on GCA. It mentions the gastric problem but I am also taking omeprazole to combat that issue! In my simple mind it seems I am getting a triple win for aspirin addition reduced risk of:-

vision loss

heart attack

stroke

Details from patient.info reads:

Low-dose aspirin

In addition to a steroid tablet, a low daily dose of aspirin is usually advised. 75 mg daily is the usual dose. The low dose of aspirin helps to prevent heart attacks and strokes. ( there is an increased risk of developing a heart attack or stroke if you have GCA. However, many people over the age of 50 are already taking low-dose aspirin with the aim of reducing the risk of a heart attack and stroke.)

Taking both a steroid and aspirin can greatly increase your risk of developing a stomach ulcer. If you take this combination of medicines it is commonly advised that you also take a medicine to reduce the acid in your stomach. The aim is to prevent the serious complication of a bleeding stomach ulcer from developing. Proton pump inhibitors (PPIs) are a group (class) of medicines that work on the cells that line the stomach, reducing the production of acid. They include esomeprazole, lansoprazole, omeprazole, pantoprazole and rabeprazole. They come in various different brand names. One of these will normally be advised if you take a steroid and aspirin.

[PMRpro Ambassador in reply to DevonMichael]

Yes - but the GCA stuff on patient.info is based on the OLD recommendations from 2010. This discussion has been about the NEW ones to be published this year or next.

[DevonMichael in reply to PMRpro]

Thanks for the clarification however I am still sticking with what is currently the official line of published perceived wisdom!

[missmylefteye]

Dr insisted i taper, got down to 30mg, & felt horrible, shut inside in left side head pain. Pain startex on right too. Back in 60mg now. Feel human again, despite pred side effects.

[missmylefteye]

My esr has always been normal, despite years of clinical inflammation, tgen arthritis & now most likely gca. Part of the reason it took so long to get closer to a diagnosis for me. At least drs are now pretty sure my problwm ia vascular & looking hard at gca. Ive read that esr is a notoriously unreliable test. If someone has any blood viscosity issues, drs should run something like a plasma viscosity test, which is more reliable. Also, could be problems in lab giving bad results with esr. I live at high altitude & am meditterranean. My haemoglobin & hemacrit are max normal, i wonder if that affected my esr results for one thing. Asked for plasma viscosiy test, but not supposed to be useful since im on high pred dose right now.

[PMRpro Ambassador in reply to missmylefteye]

Plasma viscosity isn't really significantly more reliable I don't think, there is a generation of doctors who were being trained when it became fashionable but I believe the vast majority of hospital labs in the UK don't offer it these days. If it isn't offered - you can't have it.

ESR isn't reliable - but for most people it does show inflammation (but where and what is another question!). Some expert doctors favour also using CRP but others don't get it - and anyway I know people whose ESR follows their symptoms while their CRP remains stubbornly normal. I also now live at altitude but originate from sea level areas - my Hb and haematocrit are high end normal and ESR very low - but that wasn't any different when I lived in Durham in the north of England which isn't far off sea-level. CRP has also never been raised - except one day when I was having an atrial fibrillation episode...

[Blurry62]

You have gotten good advice on this. I want to tell you, I've never had abnormal inflammation markets; Not once in this last year. My pain has always been like a stocking cap. Brow to occipital and ear to ear. GCA is a beast on the move. My rheumatologist hasn't had much experience treating GCA, and certainly not patients with atypical symptoms. He wanted to get me tapered off too soon and now I'm having headaches again. I've got an appointment with a specialist in march. You must study this out and self advocate. Be brave and bold. Good luck to you.