GCA/PMR Tapering below 25 mg, hitting a wall

[Lucy2013]

Being treated for PMR/GCA since early Dec 2018. No biopsy performed to get a conclusive GCA diagnosis, but the headaches (temporal region), symmetrical pain, etc. was sufficient to get me put onto 80 mg of prednisone with nearly 100% reduction of symptoms. Have been tapering, but each time I try to reduce below 25 mg, I get some (not all) of the aches returning plus the headaches. If the headaches are from prednisone tapering, I can tough it out.

This last attempt was tapering from 25 (8-days) to just 24 mg.

How does one make a self-diagnosis?

Can the return of headache at this juncture have a blindness risk, despite being on nearly 25 mg of prednisone?

[DorsetLady PMRGCAuk volunteer]

Hi,

If you have got from 80mg to 25mg within 3 months then that’s mighty quick.

If you have trouble tapering below 25mg, then that is telling that you need at least 25mg at this moment. So stay there for a least month before trying to reduce!

How do you make a self diagnosis? Easy! If you have a return of symptoms then you have gone below the level of Pred you need.

You need to be on a dose which gives you the same relief as your starting dose. Strikes me you’ve gone below that level?

You really need to speak to Dr regarding return of symptoms.

[Blearyeyed in reply to DorsetLady]

Hear ! Hear! From the GCA/ PMR Camp.

Speak to your GP / Specialist , tell them you are having trouble below 25 mg and the head issues are returning.

Stay were you are at the moment.

Flares can happen , you are doing well and don't want that.

[Soraya_PMR]

80 to 25 mgs in 3 months? Whoa! Slow down girl!

Pred withdrawal pains tend to be days 1-3. Symptom recurrence from too low pred takes a few more days (probably). Everyone’s a bit different, you’ll need to get wise to your body. But reducing at that rate you’ve barely time to differentiate one from the other.

Withdrawal pains might be eased by paracetamol. Symptoms likely won’t.

[Daisychain12]

Lucy this is a very big decision and I’m so sorry you are not getting good medical advice. You can’t possibly do this alone. Rheumatologists study for years before they are equipped to make decisions like this. None of us can know and you need a specialist to advise you. I had a similar story to yours and in retrospect I wish I’d handled it differently. The pred is marvellous but it can have severe side effects even many months after being on high dose. Please insist on seeing a specialist. Can you? Xxxxxxx

[Lucy2013 in reply to Daisychain12]

Thx.

I am seeing a specialist and following instructions exactly. However it is up to me to make real-time decisions when I am developing a headache around the temples. Specifically, I am okay with the pain, blindness is something I am trying to avoid. Deciphering tapering reduction symptoms from potential GCA headaches is something I don't have experience with.

FYI, with the prednisone, the ESR and CRP levels have returned to normal range, even with the headache symptoms.

I appreciate the road travelled by this forum; it is certainly not a straight line.

[Blearyeyed in reply to Lucy2013]

Try allowing yourself a month on 25mg to give your body chance to rebuild and recover before the next taper.

You don't want to push it too quickly , cause a flare , and then have to increase again over 25mg because you tried to move too far , too quickly.

Getting your vitamin and mineral levels up with food or supplements , having a month of creating strength back in your body with a balance of light exercise to increase muscle strength and rest is important. Prepare your whole system for the next reduction.

When you try again go down in 0.5 s , using method recommended here and keep a diary of your changes in pain and where it is. If the pain grows and continues again with growing symptoms it's your body telling you it isn't time to taper again yet , you still need more time to repair at the Pred level you are on.

Good luck xx

[SheffieldJane]

It is still early days for you Lucy2013. The dead slow nearly stop method could be brought into play now, never reducing by more than 10% of your dose. Allow yourself a little rest at 25 mgs for a month or so. You are still pretty ill and will gain nothing by rushing. Good luck.

[alvertta]

I wonder why no biopsy? Mine took 20 minutes and gave me 100% diagnosis. I find that confusing.

[Lucy2013 in reply to alvertta]

Initially treated for PMR (20 mg) in early Dec 2018 with quick symptom resolution. The GCA-like headaches (no scalp tenderness, no issues with my jaw) started Dec 24th and there was difficulty finding a surgeon my specialist trusted. After being directed to go onto a higher dose (80 mg) and waiting several days, my specialist hinted that the likelihood of finding a confirming biopsy was reduced. Specialist indicated that even under perfect circumstances, getting a positive biopsy result when GCA was actually present was on the order of 30%

[alvertta in reply to Lucy2013]

Interesting.

[alvertta]

There is an article from Edinburgh doctors that PMRpro posted that is a study of PMR and GCA and how to reduce prednisone while minimizing flares and back sliding. Check that out. You have gone very fast. I calculate I will be 44 months on prednisone if I follow their recommendations. I was diagnosed in October 2018. Started at 80. Currently 30. I have traveled a lot in the last two months and that has caused slowing down. Finding that alterations in diet are essential. No gluten. No sugar. No alcohol.

[Lucy2013 in reply to alvertta]

Thx, I have cleaned up my diet as well, except for the gluten. Again, how does one differentiate prednisone tapering symptoms for a GCA headache?

[DorsetLady PMRGCAuk volunteer in reply to Lucy2013]

Difficult sometimes. Not everyone has same withdrawal symptoms - some are similar to pre diagnosis symptoms. Others, like mine, were just a feeling of being off-colour for a few days.

Withdrawal symtoms start almost straight way when on new lower dose and then go when body is acclimatised to new dose , a flare usually takes about 5-6 days to appear and stays. Paracetamol may help withdrawal symptoms- it will do nothing for a flare.

On another point, your blood markers should be in the ‘normal’ range if the drug is controlling the inflammation - however they can lag behind symptoms.

[Omanain]

Thanks for this Lucy. I was diagnosed with GCA yesterday at the eye clinic in the hospital. (I was diagnosed with PMR last April and down to 6.5 Pred) Yesterday I was told to take 60mg Pred and as it was late afternoon I asked if I could leave it until the morning but he said no. That was now 13 hours ago and there has been no improvement in the head pain. Do you remember how long it took the pred to work?

He said he will arrange a biopsy but I wouldn't think there any point while I am taking all this pred? He said my inflammation markers were not raised, but that didn't mean a thing!! My big worry at the moment is that the pains in my head and jaw are caused by something else and I am taking all this pred for nothing. As you had good symptom relief I don't suppose you were worried about that?

Have you been told to reduce so fast? I would certainly talk to someone about the blindness risk, I was pleased to be seen by the eye clinic. Maybe you could ask for a referral?

Good luck x

[survivalist in reply to Omanain]

I have to say you are definitely not taking 60mg for nothing. If they do a biopsy fast enough, within a week to 10 days would be good, beyond 14 days perhaps too long. The 60mg pred level wil not have removed the evidence inside this time scale. A few days at 60mg is a Very Very small price in increased overall dose to pay V sight loss

[Omanain in reply to survivalist]

Thanks. I just a phone call to say they want to do the biopsy tomorrow afternoon.Thanks to another post today, I know what to expect!

xx

[PMRpro Ambassador in reply to Omanain]

There is one person on the forum who was first told they would get an infusion but instead was sent home with a 60mg oral dose - they lost the sight in one eye. There is no way of knowing if the infusion would have avoided it but that was why you were told you couldn't wait. If the pain doesn't reduce at all - tell them. But they will see you tomorrow anyway.

The advantage of trying for a biopsy is that if it IS positive you will have an answer that no-one can argue with in the future. But basically GCA is a clinical diagnosis above all. They wouldn't be giving you all that pred if they weren't fairly sure it is GCA.

[Omanain in reply to PMRpro]

Thanks PMRpro. That is exactly what the doctor said yesterday "No, take it today, you could leave it until tomorrow and then wake up blind"! I will only have taken 2x60mg pred by the time they do the biopsy today. I am trying to move the time I take it to the morinings as it disturbs my sleep a lot, so am taking it an hour earlier each day. At least as I am coming to terms with the diagnosis I can stop worrying about it, it's there now, so deal with it!! But I am inclined to be a bit hard on myself and feel that it is the worrying about getting GCA that has brought it on me!!! I'll be OK once I get some sleep!!! I hope you are feeling a bit better and your OH is more stable. Thanks for your wisdom and common sense.

[Lucy2013 in reply to PMRpro]

Just throwing something out there. In between doing stuff for my job, I did a little web searching and discovered that some cognizant specialist believe in a link between GCA and the herpes virus that causes chickenpox and shingles. In fact, biopsies were performed where the virus was found along side the giant cells.

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

ncbi.nlm.nih.gov/pubmed/268...

So has anyone on this forum experimented with anti-virals (acyclovir) in conjunction with steroids? Seems like a reasonable shot gun approach with limited risk.

[PMRpro Ambassador in reply to Lucy2013]

It is a single study with some weaknesses and while they may have a point, the chances are that almost everyone of our generation has that virus present in their body. There have been suggestions that PMR/GCA are related to various viral infections - none has been found that is common to all patients. There are also plenty of patients it hasn't been found in. And, however nice it is to think it could be a cause, correlation does not prove causation.

There was one lady who was trying antiviral therapy on the grounds you mention - though actually they aren't entirely harmless as others on the forums will tell you. She hasn't "reported back".

[Lucy2013 in reply to PMRpro]

Good points.

Below is another follow-up study: It gets into the fidelity of the different approaches.

academic.oup.com/jid/articl...

I am at an early stage with GCA and/or PMR where I am looking for a silver bullet to speed up the pace of the disease progression.

[PMRpro Ambassador in reply to Lucy2013]

Everybody does - and everybody thinks they will be the one to find what the medical world has missed. You could ask your doctor.

[Lucy2013 in reply to Omanain]

After starting the 80 mg dose/day, it took 3-days for the headaches to nearly resolve. I think I had some residual headache like pain due to eye pressure increasing from the prednisone. That too eventually resolved.

[Lucy2013 in reply to Omanain]

Get the biopsy if you are in a window of opportunity to get a good read. My initial inflammation markers were very high when I was just initially presenting PMR symptoms. When the headaches evolved (maybe a month later), my ESR and CRP were very low. As I indicated, XMAS created a hurdle for me getting a timely biopsy.

I am presently getting headaches, but I am not 100% certain I have GCA, which is an issue. I am trying to figure out the difference between a tapering headache and the GCA headaches. If I get some resolution with Tylenol, I will blame it on the prednisone. If I don't, I will call the specialist and I will likely have to step back and take a higher prednisone level (most conservative approach).

So again if you get tested and find out you do have GCA, then at least you will be more clear on the path forward.

Good luck

[PMRpro Ambassador]

You have been tapering VERY fast - and it is hardly surprising you are flaring at 25mg after only 3 months. A study done by Prof Dasgupta and UCL found there is evidence of an active inflammatory state even after 6 months of high dose pred (over 20mg/day) and that symptoms will flare up again if the pred dose is reduced too far. Flares are very common in the first 18 months of GCA and are almost always due to reducing too far, too soon.

If the inflammation gets out of control because the pred dose isn't high enough the risk of sight loss could return - it isn't true that any amount of pred protects you, it has to be enough.

[Heron82 in reply to PMRpro]

Hi Lucy,

my pattern of PMR in 2017 then GCA in 2019 is similar to yours, I started on 60 mg and got down to 25 mg with a few bumps along the way, but trying to get below 25mg is proving more problematic as like you temple headaches have returned usually starting ca. 4 am. I did not have any jaw claudication, but I did have some scalp tenderness and swelling of my eyelids near to the eye socket. I have never experienced temple headaches before and they only return on pred reduction, which has occured a couple of time in reducing from 60 to 25 mg. I didn't have a biopsy as my consultant said it should be done prior to initiating pred.

Over the past few days as well as the temple headaches, I've been having stabbing pains in the back of my eyes and dryness as though my eyelids are scraping the surface. I've up my dose by 5 mg and will see how I get on. One thing I've learnt with this condition is that a lot of patience is required. The support and advice from this forum is invaluable.

[Lucy2013 in reply to Heron82]

Hi, During that episode, I took a course of an antiviral called valcylovir for 2-weeks. Afterwards I was able to go lower on the prednisone without feeling like a flare was happening. Maybe a coincidence. I am now tapering around 4 to 5 mg. In that zone, I do get a lot of arthritic symptoms & mild headache that lasts a few weeks.

[PMRpro Ambassador]

This is the article that alvertta mentioned - not from Edinburgh doctors, it was presented at the Royal College of Physicians in Edinburgh but the group that did the work was in Bristol at the time, now spread far and wide!

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

If you look through it you will see a box with their typical reduction scheme from 60mg - they would have still had you at possibly 50mg after 3 months as they keep patients at each dose for a month or so.