An alarming visit: Rheumy suggested infusing with 500 mg per day for 4 days after I've already been tapering for 4 months

[montebello]

Hi all, I'm a GCA patient, diagnosed in AUG via a positive Temporal Artery Biopsy. I started on 60 mg for 2 weeks, then 50 for 2 weeks, etc. down to 20 mg at which I've been holding for about 5 weeks. Yes, I realize this is a rapid taper, but that's what my GP and Rheumy suggested so I followed their advice.

Last week, I had a blood test and my inflammatory markers went up -- not a lot, but they did go up. My Rheumy requested an office visit. I saw him today and reiterated my current symptoms: blurry vision -- sometimes one eye then the other eye -- double vision, but only when I tilt my head one way or the other (I'm almost positive this is because of my prescription lenses), shortness of breath, sweats, fatigue, and a come and go back pain between my shoulder blades. I reminded him that I've had that back pain for almost a year -- and wondered aloud if I've actually had GCA for that long. I also reminded him that I was a 3 mile per day fast walker but now I'm lucky to get 5000 steps in because of fatigue and shortness of breath.

He responded by saying "well, it's totally up to you, but I recommend that you get infused with 500 mg per day here at the hospital for 3 or 4 days." I asked him "why?" He said, well, I don't want you to go blind and I don't want your aorta involved. I told him he was ALARMING me. I told him I wasn't criticizing him, but was it really necessary to go to that extreme after being on PRED since AUG? I also asked him if there wasn't some sort of imaging that would confirm the need for this level of PRED. He said an MRI would help, but that "current GCA guidelines do not prescribe any particular actions as a result of the MRI findings," and that he was fairly sure from my symptoms that I am in need of a "punch" of higher PRED.

Then, I told him about this forum and how I've learned that many in the UK follow another taper routine, i.e., instead of reducing by 10 mg every 2 weeks, many of you reduce by 10 mg every 4 weeks.

He said, "well I have no problem with that at all -- in fact, that's a good idea. Let's do that instead of the infusion!" His final recommendation of the day was to more-or-less START OVER AGAIN: 50 mg for 4 weeks, then 40 for another 4 weeks, then 30, then 20, etc.

I'm SO SORRY for this long message -- but I'd appreciate your thoughts on all this. I'm nervous about it -- and anxious about going back to 50 mg. I'm already feeling like a zombie at 20 mg! Then again, the consequences of getting it wrong are disastrous. Gees.

[DorsetLady PMRGCAuk volunteer]

Well many would say his final recommendation was nearer the mark, although the first was not that outrageous as he was worried about your sight.

You did put the suggestion of 10mg reductions every 4 weeks into his mind, so at least he is listening to you….

Maybe 50mg for 4 weeks is slightly high, 40mg may be enough, but he is trying to protect your sight, which really is all you can ask of him.

[montebello in reply to DorsetLady]

Thanks so much for your quick and understanding reply. I needed that.

[PMRpro Ambassador]

To be honest - if it were me I would seriously consider the pulse therapy. Do the sums - and the longer term high doses he is suggesting add up to more. A month at 50 is 1400mg, you are through that in 3 days with the pulse therapy. Did he say what dose you would go to then? Studies have shown that the more usual pulse therapy used at the initiation, 1000mg/day for 3 days, results in a smoother taper afterwards and a lower cumulative dose. With the pulse therapy the pred is out of your system within a few days (5 half lives takes you to a very low level within 24 hours).

[montebello in reply to PMRpro]

Wow. No, he did not say what dose I'd revert to after the pulse, but ill ask. Thanks for the advice

[montebello in reply to PMRpro]

What dose would YOU say i should go to after the pulse?

[PMRpro Ambassador in reply to montebello]

I don't know. Usually with the mega high pulse therapy they drop back to 60mg because those cases are involving visual symptoms. In your case I would expect a drop to 40mg, possibly 30mg once the pulse therapy is completed but I don't know what he has in mind. The high dose will clear out the inflammation far quicker than a month at 50mg - for the same dose.

[Grammy80]

As you may or may not recall, I was diagnosed with GCA in August of 2019 and that was only because I lost sight in my left eye. I've been on prednisone ever since August 5, 2019. I cannot give you the date, but I had to return for infusions of 1000mg of pred for three days during my first year. Only last fall, when my blood test warranted it, I had to return to 40 mg per day.

There would be no question for me if I were having blurry vision. It would appear that the GCA is not quiet enough for the pace of taper you have been on. I now see a neuro-opthalmologist to safeguard my right eye...and it has taken me three years and three months to get to 4.5 mg.

He sounds like one of the sharper rheumatologists; it takes time, but please don't risk your vision. If I had blurry vision today, I would retake the infusions and restart my taper all over again. Your sight is precious. 💞

[montebello in reply to Grammy80]

Grammy, in thinking about this I'm a bit confused. One if the listed side effects of PRED is blurry vision. So why am I to be alarmed if I have it, and why would a physician want to increase dosages to combat it? What a bewildering disease.

[Grammy80 in reply to montebello]

I know it is tough, believe me. Yes, pred can cause blurry vision...and GCA can cause blurry vision. The pulse treatment is to increase your odds that you will suffer no permanent vision loss....because you can't be absolutely sure exactly what is causing the blurriness....so why take a chance? If you were to do nothing.....as my doctors did for months....my losing sight proved it was GCA. At other low points when my markers were elevated, my prednisone was increased. Of course, I've experienced some of the side effects of pred these last three years but I still have 20/20 vision in my right eye.

If I ask myself if I want to experience a pred side effect , NOT increase my pred OR lose my sight.........? Guess what I would do?💞💞

[Grammy80]

I wanted to add.... Sometimes it helps if you remember, we are managing a disease, not curing it.💞

[montebello in reply to Grammy80]

Thank you, Grammy, once again for your very relevant comments

[Grammy80 in reply to montebello]

I understand how hard it is for everyone who has had to put their old life on the shelf until PMR or GCA is managed and still. Acceptance is the first step to developing a new lifestyle. For me, it meant listening to books I hadn't had time to read, eventually sitting and watercolor painting.....having to hire someone to clean my house...YEAH!!! It took me a really long time to accept the fatigue because I had jet fuel in my veins, plus my grandchildren are in Canada. Sniff. It wasn't so bad when I lived in Maine, but now I'm at the tip of Lake Michigan... GCA forced me to stop living on my own. Shudder...that was a bitter pill.

Hang in there and keep reaching out. I have an excellent rheumy and it sounds like you also do. 💞🤶🏻

[KASHMIRI1]

I think if l was you l would definitely go for the high dose or an infusion. You have done very well in such a short time. The chance of vision loss is a very real problem with GCA and just not worth the risk. I was diagnosed nearly three years ago and am just at 8mg off pred. Like you l was a walker and very active but now can just about get to the end of the lane. Autoimmune illness bring a lot of issues with them and my time with GCA has taught me the meaning of really listening to my body.

[montebello in reply to KASHMIRI1]

Thank you for this info

[Darcy2000]

It sounds familiar…I ended up with 1000 mgs over 3 days …and the started the very slow downward taper at 60 mg… and now after 18 months and weekly Actemra by epinpen …feeling great .I especially like the DR.s acceptance of your suggestion…shows some open mindedness and humility

[montebello in reply to Darcy2000]

Yes, the rheumy does seem open. Only my 2nd visit with him, and I might have mistook openness from indecision on his part. Still establishing a relationship

[Sophiestree]

Hi. I had three days of 1000mg and was wired, running all round the house! Mind you, that soon changed. It sounds to me like your Rheumy was being quite sensible offering you 3 days of 500mg, it might knock it on the head and then start on the tablets. I was then on 40mg for a month, 30mg for a month and then 25mg for a month. I then took on the slow taper recommended on here.

Blurry vision has been one of my biggest bug bears (aside from the symptoms hurting etc) and frustrates me enormously. I am assuming it is pred, but it might be permanent, who knows now after over 2 years.

You have had some great responses here, and you need to decide what feels right for you.

Good luck

[montebello in reply to Sophiestree]

Certainly agree on the great responses. Thank so much for yours

[MiloCollie]

I don’t know enough to advise but I’m sending you a big hug! ❤️ Good luck

[montebello in reply to MiloCollie]

I'll take all the hugs I can get. Thank you.