I didn't expect the following during my last appointment with my Rheumatologist: I told her that some symptoms were resurfacing after having reduced from 20mg for 2 weeks to 17.5mg, for 2 weeks (due to go down to 15mg. 2 days after appt), slight pressure in left temple and newly developed persistent earache on right. She stated that she wanted to get me approved for weekly injections of Actemra - this has never been mentioned before. She told me to go back up to 20mg. until such time that the approval process goes through. She said it would probably take a month. I asked her what the tapering schedule for Prednisone would be at that time and she said it would go down to 15 for a week, 10 for a week, 5 for a week and then completely off. I expressed my concerns that it seemed awfully fast and she just hmmmmed and said you've been reading things on the internet. It seems that her thoughts are that Actemra be used in lieu of Prednisone not in conjunction with, and from what I've read Actemra is a steroid reducing drug (at least at first) that will allow for a gradual but quicker taper off of Prednisone until such time that one would only be using Actemra. Am I wrong? Thoughts?
Actemra and Extremely Fast Taper off of Prednisone - PMRGCAuk
Actemra and Extremely Fast Taper off of Prednisone
It is my understanding that Actemra is not a substitute for Prednisalone but is very effective at enabling some patients to come off Pred more quickly. Again it is not a cure for the disease, it just helps with the inflammation. It helped me to get down from 40 mgs Pred to 10 mgs in record time.I then stalled at that dose and began to have painful Diverticulitis symptoms that inevitably led me to have to come off Actemra. It is a side effect and a contraindication. I was disappointed and would try it again if I was able.
Do you mind me asking what your tapering schedule was when going from 40 to 10? Was it weekly as my Rheumatologist is requesting I do? I do have concerns about Diverticulitis. My voiding habits are already a little iffy as is. What were your first signs/symptoms when it came to Diverticulitis? Did it come on fairly quickly?
My first Diverticulitis symptoms were a persistent boil- like pain in my lower right abdomen, it is more usual on the left in westerners I have been told. This was sometimes accompanied by nausea and sudden vomiting and a permanent tendency towards loose bowel movements.I was diagnosed following 2 colonoscopies , an endoscopy and a camera endoscopy. It comes and goes in severity and I need to be careful in what I eat and portion size. I have been prescribed Lansoprazole 30 minutes before Pred and Buscopan before meals. My tapering was dead slow ( see FAQs) and I reduced by half a mg at a time. I am now on 5 mgs, stalled by a second bout of Covid ( probably) and post viral symptoms of extreme malaise, fatigue and brain fog. I hope this helps. At one point I was put on a cancer pathway. The virus interrupted a continuing taper.
My rheumy who has used it a lot was adamant that I needed to wait a bit before tapering - your rheumy may think that it kicks in immediately but no-one else I know thinks it does so that fast.
There is a very good reason that Actemra is used in conjunction with pred at the start - there have been NO clinical trials using Actemra alone for GCA and it would be unethical to put a patient's vision at risk if the Actemra didn't start to work quickly enough to reduce the inflammation that is threatening the blood supply to the optic nerve. You are showing symptoms that are typical of GCA and she is right to consider it may well be still active. However - it is NOT reasonable of her to dismiss years of clinical trials with Actemra and the approval process which was on the basis of using Actemra and pred in tandem. Even within the clinical trials, patients flared and had to increase the pred dose temporarily. She is being arrogant IMHO.
She really needs to get a reality check: the internet provides access to the same medical articles SHE reads so blanket dismissing your concerns as "you've been on the internet" is unreasonable in her part. I have read the clinical trial documentation - and drawn my own conclusions. She isn't the only person to be able to understand such articles.
And those clinical articles include the fact that only half of patients are able to get off pred entirely when on Actemra. This is due to the fact it has been shown that there are at least 3 mechanisms that create the inflammation in GCA. Biologic drugs like Actemra/tocilizumab are extremely specific in their action, it works ONLY on the production of the cytokine IL-6 and on nothing else. If YOUR GCA involves the other mechanisms for inflammation, then they will continue, unaffected by the Actemra. In that case, you continue to need pred to manage the other inflammation. And that is why the 2 drugs are used in tandem - in case those mechanisms are involved.
In addition to that, you have been on high dose corticosteroid for nearly 6 months, more than enough to have suppressed your adrenal production of cortisol - a substance essential to life. After only 6 months, it is unlikely to take long for the HPA axis (hypothalamus, pituitary, adrenal glands) to wake up and start producing enough cortisol but it is almost certain that it will take longer than a month.
If everything goes well, dropping to 5mg in 2 weeks is possible (but I wouldn't want to do it until I had been on Actemra for at least a month) and the last 5mg I would want to do over maybe 2 or 3 months to reduce the risk of developing an adrenal crisis.
She needs to bear in mind that you have already done the first part of the taper of pred. It is one thing starting at 60mg at the same time as Actemra and reducing the pred dose at that sort of rate - even without Actemra you have got to 20mg before GCA symptoms have reappeared. In the trials, the Actemra had a few months to start to work effectively before the patients got to the more critical doses. But you are on the cusp now at 20mg and if the Actemra hasn't yet "kicked in" then dropping the pred dose too fast risks the GCA symptoms flaring again. I think it is an unnecessary risk.
I am always so appreciative of your replies. I have read many studies since embarking on this journey and although I may not take in everything, I am able to get to the cruxt of the findings. Your experience and ability to guide others with facts and a no-nonsense approach is truly a gift. In the end I will have to tell her that I am uncomfortable with the quick taper knowing that I am armed with what you have said above, and suggest to her the need of a more suitable plan to be in place before I make any decisions. If it's her way or the highway, then I will have to forego the use of Actemra and see what her attitude is then - I may be hitting the highway.
Thank you so much!
I have been very confused by the concepts some Canadian rheumatologists are espousing - they generally seem to think they have some hotline to a special dispensation when it comes to PMR and GCA! The diseases are the same whatever country they appear in. The drugs are the same. There is no special magic wand that means they can flout all the scientific evidence gained during clinical trials even if pharmacuetic companies may at times be a bit economical with facts that don't suit them!
But the bottom line is it is YOUR body not hers and if you aren't comfortable with her ideas, she is the one at fault. It is - or should be - a shared decision that should be made between you and accommodating realism.
Thank you xxx
No, you're not wrong! I started Actemra when I was stuck on 15mg pred. I was put on a fast taper - but that meant 1 mg per month, nothing like you've been asked to do. When I got to 11, the rheumatologist speeded it up to 1mg per fortnight. I got away with it down to 4mg, but after that it had to be much slower. I had a flare, and had to go back up. Currently going down very slowly, still with Actemra. Seem to be stuck at 3.5mg. Rheumy said not to expect to get below 3mg. you also may have to deal with the adrenals issue.
So you see, it may not be a case of either pred or Actemra at all. Depends on which inflammatory factors you have. The good thing is that you will be able to get by with a lot less pred.
What will your rheumatologist do if you take Actemra, stop pred, and then get a massive flare?
It astonishes me how little doctors know about how drugs work. They are very happy to poo poo the pharmaceutical industry, but at least they could bother to spend time learning how the products work.
piglette, this is why I don't place a lot of trust in the admonishment: Ask your doctor. I'm not saying one shouldn't ask, but one should also do research and get opinions from a forum such as this.
I have got to the point in life where everything I hear, read, etc etc I assume is fake news unless I have solid fact. The rubbish around nowadays is unbelievable.
Bear in mind though that much of the opinion on forums is not informed opinion. We try to be better than that but how can the outsider know?
That is true also!!! Besides, what works for one may not work for another, but sometimes we are so desperate for a solution that we try a new suggestion.
Which is where many a problem starts ...
Yes, that can happen. I'm quite certain someone with good intentions made a suggestion for me, which I then considered my last hope (I had tried everything else). I used it once and it made my problem worse. At this point, I learned to accept there wasn't a solution. Sometimes, "time heals."
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