A further update on the old taper journey ... - PMRGCAuk

PMRGCAuk

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A further update on the old taper journey ...

LemonZest11 profile image
LemonZest11

Hello again friends on this long and treacherous journey, I am reporting back with some good news, yay! While I have remained on the three weekly (rather than weekly or fortnightly) tocilizumab routine, my inflammation has remained under control, so far. I have just moved to 1.75mgs pred on my cautious taper (too cautious according to my rheumatologist), and over the past couple of weeks I have increased my resistant exercise regime. I’m only lifting 2kgs but the exercises have really helped that bloody shoulder of mine, and I have been feeling the best I have felt in months and months. I’m almost too frightened to say this, don’t want to put the mockers on at this stage, but things are progressing slowly but well. Let’s see what this dose does!! Thanks for being here, no one else gets it. xxx

37 Replies
PMRpro profile image
PMRproAmbassador

Looking good so far! You're managing any adrenal issues at that taper????

LemonZest11 profile image
LemonZest11 in reply to PMRpro

Interestingly, I seem to be ok at the moment. Do you remember a couple of months ago (I think), I was taking ibuprofen, against the advice of those on here? I had quite a lot of shoulder/neck pain and I’m wondering if that might have been related to adrenal? Or perhaps that is still to come?

PMRpro profile image
PMRproAmbassador in reply to LemonZest11

Could well have been stressing you out - and not enough adrenal function to really cope.

LemonZest11 profile image
LemonZest11 in reply to PMRpro

Let’s see if I make it through this dose. 🤞

You are right to be cautious, you have come this far and have obviously learned to listen to your body. So I would just continue slowly but surely and please do not overdo the exercise.

Walking is good, lifting be careful, shoulders can be tricky.

BTW more people 'get it' now than 13 years ago............🤔 methinks.

LemonZest11 profile image
LemonZest11 in reply to jinasc

Haha, not where I am. I don’t even talk about it, I seem the faces glaze over so I just tell my husband who is a darling. Thanks for your advice, I really appreciate it. I walk, of course, but the weights have really helped, it’s quite remarkable. I won’t increase the weight, but I will increase the reps if it feels OK. I really know about tricky shoulders!!

HeronNS profile image
HeronNS in reply to LemonZest11

I agree. One of my friends finally got it when a relative of hers developed a different autoimmune disease, much more serious than PMR, which is also treated with pred. It's a pity more doctors don't "get it" either. Fancy you being down to a vanishingly small dose and still being told you are moving too cautiously! S/He needs a cuff up side the head to knock some sense into it!

Inspirational. Today I will have missed my third dose of Tocilizumab because I am waiting for a chest X Ray due to breathlessness and an abdomen scan to look at my liver. I had awful headaches yesterday and I am trying to decide whether or not to resume Tocilizumab. I only have 12 weekly doses left. Instinctively I feel that fortnightly would suit me better. Have you had no symptoms in between Tocilizumab injections? I think my Rheumatologist is on holiday so I am flying without a pilot currently. Treacherous is the word. I took a double dose of Pred by accident and felt great, then the head started. I am still on 10 mgs.

Oh Jane, it really is a journey, poor you. I have found absolutely no difference in taking the tocilizumab less frequently. I had developed neutropenia and so at first the jabs were changed to fortnightly, and then to 3 weekly. Now I wonder why they are necessary on a weekly basis. The other thing about the jabs is that the dose is fixed and we are all difference sizes, so if someone is bigger then the effect, I guess, might be less. I am not a big person and so perhaps I get enough having it less frequently. Or it’s just a big con on the part of the manufacturer and maybe we just don’t need it as frequently. I really don’t know. Have any of your carers ever suggested taking it less frequently than weekly? It also means that the script lasts longer, of course.

PMRpro profile image
PMRproAmbassador in reply to LemonZest11

In the clinical trial there was a marginally better result with weekly - but it really was quite small. And some people do do better with 2-weekly not being quite enough

LemonZest11 profile image
LemonZest11 in reply to PMRpro

“Do better with 2-weekly not being quite enough”, I don’t understand this comment.

Or do you mean that some do better on weekly and some on fortnightly, but for some that is not enough? What about 3 weekly?

PMRpro profile image
PMRproAmbassador in reply to LemonZest11

Every week is effectively the highest dose, doing the injection 2 weekly halves the dose and also the unwanted effects so is often used when the white cells are being suppressed a lot. But reducing the dose like that means that if there is a lot of the trigger for the IL-6 cytokine that cause the inflammation, production might start up again as the effect of the TCZ is waning. And of course - everyone reacts a bit differently.Does that make more sense? Should have said weekly in the middle of that sentence ...

LemonZest11 profile image
LemonZest11 in reply to PMRpro

Yes, it makes absolute sense, thanks. You are the trusted source, and we all depend on your wise counsel and research. I, for one, am so grateful to you, always sharing your vast knowledge. Many, many thanks.

It is interesting though, that I am managing on 3 weekly doses. 🤷‍♀️

PMRpro profile image
PMRproAmbassador in reply to LemonZest11

Isn't it - I wonder if they'll try stretching it further?

When is your chest x-ray? How long are you supposed to be off tcz before it happens? Aren't they putting you at some risk making you wait a long time?

The chest X Ray and the MRI take place on June 23. I am losing my nerve stopping Tocilizumab without guidance. I have been having pretty bad headaches. I don’t really think that I have a chest infection and my liver enzymes were not yet in the danger zone. I would feel differently if there had been massive relief after pausing the Tocilizumab but there hasn’t. Just a different kind of feeling unwell. I have significant side effects from Pred now ( hypertension & borderline diabetes and cataracts). So upping the Pred is not really a viable option. I may do the Tocilizumab injection tonight and see if I get the momentum to reduce my 10 mgs of Pred. I think in a sense, we are all making this up as we go along. DadCue is right. The aim is to get as low as possible on Pred with the safety net of Tocilizumab. I have always been guided by “ symptoms rule” but they don’t make sense anymore. Maybe fortnightly injections would suit me better.

Caught between a rock and a hard place. :( It would be interesting to find out if an injection of tcz did make you feel better this time. I sure hope you find something.

Just a different kind of feeling unwell. This sentence really got me! Been following your story - you've got such a lot on your plate. Best wishes re the X Ray and scan, and hope there's some resolution to it all.

Thank you! I appreciate you saying that.

DadCue profile image
DadCue in reply to SheffieldJane

"The aim is to get as low as possible on Pred with the safety net of Tocilizumab. I have always been guided by “ symptoms rule” but they don’t make sense anymore."

That's how I felt when the endocrinologist simply said to stop prednisone after I was in a holding pattern on 3 mg for about 3 months. The advise was to stop prednisone in one step --- zero and done. I did think of TCZ as my safety net. Knowing that my cortisol level was "adequate" and I felt reasonably well added to my confidence. I did do some tests by skipping my prednisone dose for a couple of days. Hydrocortisone as needed and permission to go back on prednisone at any time if I felt the need helped my confidence too. It all worked out and nothing happened until the uveitis recurred but that was a temporary setback.

Personally, my symptoms never made any sense when I was on prednisone. I never did know what was causing what. I suspect those those tiny white pills were doing quite a lot of mischief.

The biggest revelation happened after the uveitis recurred after being dormant for a long time. The trial of Humira was interesting too. After that, my rheumatologist looked at me directly and confirmed that I had multiple problems and he couldn't adequately treat all of them. Then he asked which one I wanted to treat.

I have never been troubled by 60 mg of prednisone followed by a fast taper to treat uveitis. The chronic pain and side effects of long term prednisone use wasn't sustainable so I opted for Actemra. Keep in mind I was stuck back on 15 mg of prednisone while still taking Humira and it just wasn't doing it for the pain.

When my rheumatologist wanted to try Actemra the first time, I was disappointed because I didn't know what Actemra was. I knew about TNF inhibitors and wanted to try one. I got my wish and it didn't seem to work for PMR. I couldn't wait to back on Actemra the second time.

I did ask about the frequency and my Rheumatologist said weekly was more effective. I don’t have much pain at all but I just feel rough all the time when on Tocilizumab. When I try to get below 10 mgs of Pred headaches start up. I think fear of what the headaches mean is hampering my progress. I am only a year into GCA.I am sick of moaning but I am genuinely cheering you on! 👏👏👏👏

And I hear your cheers, thank you. Perhaps tocilizumab is not the one for you 😞. PMRpro has told me about trials/reports she has read that confirm it doesn’t work in every case. I just hope, for you Jane, that things improve, and I am cheering you on as well. Sending all my love from Downunder to you 😘

Back at you! 💛🧡

Meggsy profile image
Meggsy in reply to SheffieldJane

Jane, I have also been feeling for you since the development of your latest heath complications. Also sending love from Aus. 💝

SheffieldJane profile image
SheffieldJane in reply to Meggsy

Thank you Meggsy. That helps!

Thank you so much for sharing this. I'm always so pleased to hear success stories. Long may it continue for you. 😀

LemonZest11 profile image
LemonZest11 in reply to 123-go

Thank you. And I am rooting for everyone ... hopefully we can all eventually move forward. xx

Great news LZ, long may it continue! I think the half-life of TCZ is relatively long, so that even after 3 weeks there might still be some drug in your system.

LemonZest11 profile image
LemonZest11 in reply to Rugger

Well yes, that must be true. Hope you are travelling well.

I'm interested in knowing what your doctor has recommended about discontinuing pred and then stopping TCZ. The endpoint for many people seems to be low dose pred and TCZ.

In my case, I was supposed to stay on 3 mg for a period of time because of poor adrenal function verified by an a.m cortisol level. The statement by my endocrinologist was that it would be impossible for my adrenals to recover so soon but no indication about how long it would take for them to recover.

I mostly stayed at or about 3 mg but I skipped days a few times to see what would happen. I didn't feel any difference when I skipped days so I was somewhat sure nothing would happen immediately if I took no prednisone for a day or two. I should have been more systematic but I wasn't really sure what to do at that stage.

At a followup visit with the endocrinologist another a.m. cortisol level was done. My level was thought it was "adequate" that time. She prescribed hydrocortisone "as needed" and thought it would be okay to stop prednisone. As it turned out, I never needed hydrocortisone. My cortisol level stayed adequate and continued to improve over the following year.

I'm now wondering how I will stop TCZ. I don't get too much guidance other then "try doing injections every two weeks". My prescription still says weekly so I can still do weekly injections if I need to. I can have refills (4 doses) every month but I just wait until I use my 4 doses before requesting more so that ends up being 4 doses every 2 months or so.

LemonZest11 profile image
LemonZest11 in reply to DadCue

Hello DadCue, it sounds as though you have things under control. I have no idea what the forward plan is with regard to stopping the tocilizumab, but at the moment, for me, it’s about coming off pred. Because my doses are now 3 weekly, I have a stockpile of the stuff. I continue to fill the prescriptions because there is an end date. I am planning to keep trying to reduce, and then I guess I will ask the questions about tapering the tocilizumab, even though I have quite a lot of it left. Who knows what the future holds 🤷‍♀️, just keep moving forward and enjoying my hopefully not temporary, situation.

DadCue profile image
DadCue in reply to LemonZest11

Interesting! I don't have any fear that my suppiy of TCZ will run out. I guess that I would stockpile some doses too if I thought my doses would run out in the near future. On the other hand, I don't like having so many doses in the fridge for fear that something would happen to them and they would be wasted.

I really have no idea how often I need an injection now or If I need any. I feel well and things have improved dramatically. However, there doesn't seem to be any plan to stop TCZ anytime soon. I don't know what would happen if I were to stop it.

LemonZest11 profile image
LemonZest11 in reply to DadCue

You wouldn’t try stretching it out, say, from weekly to fortnightly to longer, as a form of taper?

DadCue profile image
DadCue in reply to LemonZest11

Yes, I'm doing that. At the beginning of 2021, my rheumatolgist said to "try" an injection every 2 weeks. Originally, back in 2019, I was started on injections every two weeks and was able to taper off prednisone. Long story, but I ended up doing weekly injections for all of 2020. In any case, I didn't think going back to every 2 weeks would be a problem.

I had a problem after my first covid vaccine this past February. The pain was getting pretty bad and I was thinking TCZ had stopped working. That's when my rheumatologist "suggested" going back to weekly injections for the time being. She mostly didn't want me to go back on prednisone which was what I was suggesting to do.

The pain got better but I took a bit of prednisone for a week and weekly injections of TCZ. When the pain stopped, I went to TCZ every 10 days followed by injections every 2 weeks again. For my last injection, I waited 17 days.

LemonZest11 profile image
LemonZest11 in reply to DadCue

That is very interesting information. Thanks for sharing it, I think that will be helpful on my journey. Good luck to you, would like to stay in touch. xx

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