When do you downsize from original dose?

[People1]

How long do you stay at 80 mg after diagnosis? How many weeks after that do you begin to taper and at what dose?

[DorsetLady PMRGCAuk volunteer]

Hi,

Personally I stayed at 80mg for 2 weeks under guidance of Ophthalmologist because of sight problems. Once he was happy he reduced me to 60mg and referred me back to GP.

Between us, we decided to go for 5mg every four weeks provided I felt alright and bloods were okay.

Didn’t quite work to plan, but roughly.

I was referred to Rheumy but didn’t see one for 7 months- and he wasn’t much interested by then, so I dudnt bother to stay under his guidance.

Have you not been given any guidance by anyone?

[People1 in reply to DorsetLady]

I cannot get in to see a rheumatologist till January. My neurologist diagnosed but does not know enough about this condition to taper. Not sure where to go from here.

[DorsetLady PMRGCAuk volunteer in reply to People1]

Hi,

These are the current guidelines (which are under review) -

pmrgca.co.uk/assets/files/2...

Print it off and discuss with GP. The tapering regime says 10mg every 2 weeks, but most find that too quick. It does also say that patient views should be taken into account - so try for a slower taper.

[People1 in reply to DorsetLady]

Also DorsetLady did you have high inflammatory markers in sed rate, C-reactive protein, ESR etc? Not sure what they call these tests in UK.

[DorsetLady PMRGCAuk volunteer in reply to People1]

Hi,

ESR - 58; CRP-26.5. Not particularly high compared to others considering I’d been untreated for 18months.

[PMRpro Ambassador]

That very much depends on your consultant and your symptoms - and the reason for being on such a high dose. DL had already lost vision in one eye - the very high dose was in the hope of preserving the vision in the other.

If you have GCA (even suspected) you should be under the care of an experienced specialist - it is a medical emergency like a heart attack or stroke and no-one would say you had to wait until January to be seen for one of those.

This

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

includes a guideline for tapering GCA doses. Although they start at 60mg I would have thought a similar pattern was OK.

Where are you?

[People1 in reply to PMRpro]

Thanks PMRpro. I am on the States in Ohio. I spoke with a cardiologist friend of mine today and he is going to try and pull some strings and get me in to see a rheumatologist this week. Thank you for your help. The main thing is I do not want to be at such a high dosage any longer than necessary. I have been at 60 mg for for about 13 days now and wondered if I should start tapering. My opthamalogist performed a left TAB which was negative and is doing a right TAB today.

[Telian in reply to People1]

As has already been said depends on your symptoms, if you're seeing a Rheumatologist this week then stay put until then. Refer to my previous post to you re this. You will start to taper shortly but don't be in too much of a rush at this stage until your situations is more clear. ATB

[People1 in reply to Telian]

Thank you so much Telian. I had second TAB yesterday on right side yesterday and inflammatory bloodwork was ok. Left side was negative. A bit sore for sure. It will take a week to get results. I am holding at 80 mg right now due to continued blurriness coming and going in left eye. My severe headaches that had been going on for a month, sore scalp/points in back of skull, horrific neck and shoulder pain cleared up about 48 hours after I began the meds at 60 mg, but due to blurriness in vision and temple pressure my neurologist who originally ordered TAB’s wanted me to increase to 80 for a week or so until I can get in with someone more familiar with this illness to handle my case. Does it take awhile to get over the healing from TABs? I am pretty numb and somewhat sore. Also I noticed a pronounced temporal vein on left side more so after TAB. Is that common following such procedures?

[Mikb in reply to People1]

I imagine that after being on prednisone for 13 days, your other TAB will be negative too. That does not mean you do not have GCA. As I had eye involvement when diagnosed, I was put on 80 mgs and left there for a month. I had no pain after my TAB. Best of luck and hope you are in less pain soon.

[People1 in reply to Mikb]

Yes I agree. Mikb what were your symptoms and did you have a positive TAB?

[Mikb in reply to People1]

I had jaw claudication, sore neck and shoulders, scalp so sore I cut my hair really short as tying it back and wearing it down were both painful, excruciating headaches and then visual impairment in my right eye. I was sent by my optometrist to the hospital straight from an appointment with him. They did blood work which came normal. They did an ultrasound and MRI which came back normal. As they really believed that I had GCA, they had me on 80 mgs of pred the whole time. I believe on day 6 they did a TAB which came back positive. Then they gave me 3 days of 1,000 mg pred IV. They saved my sight. I still have a little visual impairment in my right eye but it's amazing how the eyes work together to sort it out.

[SnazzyD in reply to People1]

Poor you, yet another soul being mucked about. Was the Neurologost going to leave you on 80mg until January?? Have they not heard of a telephone?

Anyway, the TAB. Personally, I’d say forget the word “biopsy” and call it “minor surgery”. It is a very invasive procedure (available on YouTube 😮) with sutures underneath the skin line. The acute soreness should calm down after 48 hours but it may feel a bit tender or not right to touch for weeks while the inflammation clams down. Nerves will have been cut, not the major ones, so it’ll feel odd for a while while they sort themselves out. Wounds take 6 months to a year to mature anyway and I got niggles in my scar line and around it during withdrawal for over a year. It took me a few months to stop thinking I was having a flare. The sort of symptoms to worry about are increasing redness, oozing, persistent pain or swelling, especially from day 5 or so onwards.

[People1 in reply to SnazzyD]

Thank you SnazzyD. I cannot tell you how much I appreciate you sharing your experience with TAB. It truly is minor surgery. Did you have a positive biopsy?

[SnazzyD in reply to People1]

No. Never have I ever wanted bad news so much 😂

[People1 in reply to SnazzyD]

So since you did not have a positive TAB did they assume you did not have it and then slowly reduce and get you off the meds, despite symptoms, or what was your experience and how did they manage all this after negative TAB’s? I am on 80 mg right now and definitely had horrendous symptoms but my TAB so far has been negative. Thank you so much. If you have a link to your experience or are willing to share I would be most grateful.

[SnazzyD in reply to People1]

After some discussion they decided that although I was “too young” my symptoms and the very rapid positive response to them justified going down the full GCA route. I was on 60mg for a couple of days then 40mg for 6 weeks with no information other than some guidelines for reduction, but luckily I found this site. At this point I was left high and dry with no appointment from May until Sept. This was good for me because I could taper ask felt my body was ready for with plenty of trial and error on the way. When I got to Sept I was on 18mg and the Rheumy gave me a hard time with warnings of doom from Pred because I wasn’t down to 8mg. It knocked me flat but I did say I thought it better to reduce at a pace that didn’t bring on a flare and a return to high doses again. After all that he just said carry on, which I have.

[People1 in reply to SnazzyD]

Thanks so much Snazzy D. Cannot imagine being left high and dry that long but sounds like you worked a good plan.

[Telian in reply to People1]

The right side will probably be negative too as you're on steroids, mine was negative after 3 days on steroids but I had a positive Ultra Sound. I wouldn't worry about the raised temporal veins and discuss it with the Rheumatologist I'm not expert on those as I didn't have them but there's been disturbance and it's a known symptom of GCA. Were they raised prior to the procedure? The neurologist wasn't wrong to up the steroids but the sooner you get to see a Rheumatologist the better. Numbness and soreness is normal and will heal quickly about a week plus, my problem was not being able to lay on it for about a month but otherwise not too bad. You have both sides to contend with! I do wonder why but appreciate the neurologist was doing what he/she thought was necessary. Would have been more productive chasing a Rheumatologist as an emergency, which is what GCA is if untreated. Without knowing whether you are suffering withdrawals or a flare you ought to go to your emergency rooms as a precaution as you are having visual disturbances. The saving grace is you are on steroids but are you on the correct dose for the inflammation is the big question. Don't wait too long for this appointment if it's going to be delayed. Best wishes, let us know how you get on.

[People1 in reply to Telian]

Thank you Telian and agreed. Tomorrow I go back for a two day post-follow up with my opthalmalogist. Trying to get in sooner than Oct 15 to rheumatologist and trying to pull some strings. My opthamalogist has been keeping a close watch on my eyes, between TAB’s and no damage is apparent.

[Telian in reply to People1]

Sounds like a plan and I'm sure everything will be okay but can't leave anything to luck - you need to have some piece of mind now, you've gone through enough in such a short space of time. Keep us updated.

[People1 in reply to Telian]

Thank you Telian. I definitely will. Thank you for your kindness and support.