Scoop on latest rheumi visit.

[Gaijin]

I had my 8th injection of Actemra last week, before I could get the next batch, I needed the rheumi's OK.

My rheumi has no interest in any of my symptoms, practically the whole time I'm sitting in a chair across from him, he is typing away, making it very hard to even get a word in! He showed me my CPR history on a graph, and seemed happy with the results of the Actemra injections. Too happy, maybe, and too confident in the efficacy of Actemra.

My next appointment with him will not be till the end of October, meantime, I am to have a blood test to check the level of tocilizumab in my blood, the sample has to be sent to Holland, where they analyze it, in order to allow doctors to fine tune the dosage. According to the tapering schedule the rheumi wrote out for me, I should be on 2.5 mgs by October. I'm now on 6.5, so it would be breaking the 10% rule no matter what method I use, so I'm keeping my fingers crossed that the rheumi, despite being so markers-driven, will take my symptoms into consideration if it turns out that Actemra isn't as miraculous as thought. My next appointment with rheumi in October will mark the end of the second year since my PMR diagnosis. I better get the paper that says PMR lasts an average of 5.9 years prepared to show him.

I feel well, as far as the PMR is concerned. I can now use my muscles without experiencing pain and climb stairs without having to rest every few steps. The sudden fatigue that overwhelms me off and on, is apparently a rather common side effect of actemra but the sicca symptoms have not been reported as such. The rheumi wasn't concerned, saying that Actemra is effective in treating sjogrens, too. So I didn't ask him to get me an antibody test for it.

He wasn't concerned about my total cholesterol being 334, either, he said Actemra raises both HDL and LDL which off sets the risk, plus being mobile now will help control the cholesterol.

Not sure if my experience with Actemra is of any interest but my reason for this post is to ask for ideas on the best tapering method to get from 6.5 to 2.5 by the end of October.maybe it will be possible with Actemra. My prescription for it ends end of December.

Have a good one, everybody!

[DorsetLady PMRGCAuk volunteer]

Hi,

That’s 15-16 weeks to taper 4mg. So either 1mg every 4 weeks, or 0.5mg every 2 weeks.

Depends on what you’ve done up to now, you might manage the 1mg using a slow taper - say start mine at week 2 rather than week 1 or try 0.5mg - but with that you need to make sure everything is controlled before you drop again - sometimes it can take 2 weeks for a flare to manifest itself.

healthunlocked.com/pmrgcauk...

Whatever you decide, just monitor symptoms carefully and if in doubt then stop. Keep a note for Rheumy as well!

Good luck

[Gaijin in reply to DorsetLady]

Thank you, DL, I really needed this information, I'm numerically challenged. When I told the rheumi yesterday that I was on 6.25 mgs, his jaw dropped😂, I thought for a moment he was shocked at my mathematical error but it turned out he was surprised at how I was able cut the 2.5 mg pill in half, "with a microscope?" , he asked? I said I used a pill cutter... Weird, right? He gave me a tapering schedule with 2.5mg tapers (lowest dose in Spain).. maybe doctors aren't permitted to prescribe dosages that require cutting pills?

[SheffieldJane in reply to Gaijin]

See we are sisters. Numerically challenged ones.

[Gaijin in reply to SheffieldJane]

Hahaha.. My DNA results show I am 33% from England and Wales! That explains the PMR, too!

[SnazzyD]

Hello. I would like to ask your Rheumy how he intends to monitor your adrenal function to avoid the risk of adrenal crisis if yours haven’t woken up to be able to cope with sub 5mg doses. Anyway, glad you have improvement in your mobility.

[Gaijin in reply to SnazzyD]

Adrenal function wasn't even mentioned, I'm not sure if being well on below 8mgs is any indication of adrenal function.. It's very hard to navigate within the health system here. The GP's are not in communication with the specialists, the ERs are managed exclusively by residents and consultants are not to be bothered except for very exceptional circumstances. The rheumatology department I go to does have a nurse who can be reached on workdays till 15:00, so one way or the other, I probably would get treated for adrenal insufficiency, but it surely will be an odessy!

[SnazzyD in reply to Gaijin]

Well, I felt it at 7mg, then, it got a bit better but 4.5mg I really feel it, so I’m doing no more than twice a week at 4.5mg until my Synacthen test results comes through. Two days consecutively on 4.5mg and I feel dreadful by the end of the second day. The 0.5mg drop from 5mg is quite significant I’ve found. The endocrinology nurse who did the test told me it was very important that I double up on doses if I am ill. I guess you need to look up adrenal insufficiency symptoms and be vigilant, trying to work out what is Actemra and what isn’t.

[Gaijin in reply to SnazzyD]

I do have an appointment with the endo in September.Not sure where I will be by then, but I will study up on adrenal insufficiency, which is what I though I had before the PMR diagnosis but had forgotten about, so thank you so much for your response.

[SheffieldJane in reply to SnazzyD]

I’ve been told to try 6 mgs once a week ( I am on 7 mgs) to stimulate my Adrenal glands. Choose your off day. ☹️

[Hidden]

Hi Gaijin, I definitely like hearing about your Actemra journey.... if I ever decide to ask about it for myself I know exactly where to go with my specific questions.... and it ain't the Rheumy!!!!! : ) Thank for sharing. I wish you continued success!!!!! Fingers crossed.

[SheffieldJane]

It is interesting and valuable Gaijin ( your name is because you are half Japanese isn’t it?) I came across a book with it in. It’s rather lovely.Maths is one of my many weaknesses, have you time to do 1 mg a fortnight? It will put the wonder drug to the test whatever you do and it is Rheumatologist driven not Gaijin driven. 🤔 Can’t you listen to your body? These are small doses in terms of ill effects.

[Gaijin in reply to SheffieldJane]

Yes, my mother was half Japanese and half Russian. She grew up in Manchuria but was repatriated to Japan after WW2.

DL did the math for me, I have 16 weeks to taper 4mgs. So I can either taper 1mg every 4 weeks or 0.5 ever 2. But I will definitely stop tapering at the first sign of any pmr symptoms, I will try though. The rheumi wants to try to get me completely off the pred and continue with only the Actemra for a few weeks... I'm going to try to stay in the moment, not stress over how the rheumi will react if my PMR doesn't disappear as he expects it will. Meanwhile, I'll be an Actemra Guinea pig and hope it works!

Not sure if I mentioned that the rheumi had a whole list of autoimmune conditions that Actemra is effective for, kind of like killing several birds with one stone😂😂😂

[SheffieldJane in reply to Gaijin]

I pray that you do get well with or without your Rheumatologist . I would feel inclined to keep a small journal of this period Gaijin. Actemra is a relatively new drug in the treatment of GCA. Don’t suffer unnecessarily, please!

What a romantic back story to have. Not without pitfalls as you’ve discovered though. I feel that you told me before, a long time ago. Apologies, my memory is shot. 🌺

[Gaijin in reply to SheffieldJane]

Thank you for reminding me to keep a journal.. I'm really bad at it... Never consistent. But this time it's important.

So far so good, but at the first sign of a pmr flare, I will take the measures advised here.

[Gaijin]

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

According to this paper, the earliest to check adrenal function is 4 weeks after total cessation of cortecosteroid treatment.

[SheffieldJane in reply to Gaijin]

Thank you for posting this. It is the third time I have read it and each time a little more goes in. I may be having the Synacthen test within the next few days if my GP can comply with the Rheumatologist’s request. Sailing to New York on Friday, leaving for Southampton on Thursday, so who knows when or how? 😖

[Gaijin in reply to SheffieldJane]

Sounds like a magnificent cruise Bon voyage, Jane! The synacthen test and everything PMR related ccan wait. 🚢😎

[PMRpro Ambassador in reply to Gaijin]

For accurate info probably - but doing the synacthen test sooner (at about 5mg) will show if the adrenals are CAPABLE. Leaving it until after you have finished pred altogether is more accurate - but that isn't much help if they aren't working at all...

[Gaijin in reply to PMRpro]

Thank you for the correction, PMRpro. Personally, I m OK right now on 6.25, but I have an appointment with the endo in September. If I have any symptoms of adrenal insufficiency I will ask him for the test, although this endo is the one that told me my adrenals were working just fine by looking at a simple blood test to check all my hormone levels which I got for my pituitary gland issues (I had an apoplexy and empty sella syndrome.)

Do you think all of us should have a synacthen test when we hit 5mgs?

[PMRpro Ambassador in reply to Gaijin]

A lot of endos and rheumies do think so. How does he know the adrenal glands can produce cortisol? There is corticosteroid present in the body - and the rest of the set-up accepts that instead of cortisol. I thought rheumies came up with a load of conflicting ideas - seems endos do too!

[SheffieldJane]

As long as I don’t keel over in the middle of the Atlantic - we’re not stopping. X

[Rimmy in reply to SheffieldJane]

Just don't lean over the side for the 'view' SJ - stay away from the edge !!! But seriously all that sea air should do you good - have a lovely trip !!

Rimmy

[SheffieldJane in reply to Rimmy]

No Titanic reinactment then?

[Gaijin in reply to SheffieldJane]

😂 😂 😂 Was so disappointed

[Gaijin]

When my OH was, thinking of retiring at age 65, about 7 years ago, I talked him into becoming a cruise doctor. So I arranged a visit specifically held for wannabe cruise doctors in South Hampton on a cruise ship. I stayed at the hotel and when he got back, I asked how it went and he answered, "I didn't understand a word they said" 😂😂 He did his residency in the States and not understanding the British accent I think is what put him off the idea😔... I was already envisioning myself cruising around the world!

[NanJean in reply to Gaijin]

What's an OH?

[Ruadh in reply to NanJean]

Other half - husband.

[NanJean in reply to Ruadh]

Thanks.

[Gaijin in reply to NanJean]

I learned the term on here, the British rarely use the word husband /wife anymore, it seems.. I like OH even though I don't really feel like my OH is my other half anymore 😂😂😂

[NanJean in reply to Gaijin]

I sometimes use Hubby. He often uses Better Half. "Other Half" sounds so impersonal.

[HeronNS in reply to NanJean]

I don't like "other half." I'm complete in myself, as I hope he is.

[SheffieldJane]

Mine nearly became a Labour Attaché in Brussels once - The Caribbean would have been better. I was up for it.

[PMRpro Ambassador in reply to SheffieldJane]

Fine - except the Caribbean is just like the UK this week but all year round!!!

[SheffieldJane in reply to PMRpro]

Yes but that was then, before I was preoccupied with my health. 🙁