I'm on 6 mg of Medrol per day, I was still having some intermittent jaw and temple discomfort so my rheumatologist sent me for bloodwork. My CRP and sed rate were not just good, they were awesome, frustratingly awesome. The Doctor emailed me with the news and said that 'sometimes people with GCA continue to have some symptom-like discomfort even though there is no sign of trouble.' I also inject Actemra each week.
My immediate thought was to go back up to 8 mg. But if there is no inflammation would it matter?
I'll talk myself out of this speedbump in short order, but I'm disappointed. Anybody else in this boat with me?👩🏿🤝👩🏽👩🏾🤝👩🏽👩🏽🤝👩🏽👩🏻🤝🧑🏾👩🏻🤝🧑🏿👩🏿🤝👩🏽🤝👨🏾🤝👨🏼👨🏽🤝👨🏻👨🏿🤝👨🏽👨🏽🤝👨🏼💗
I'm reducing by 2 mg per month.
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Grammy80
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Hi Grammy.....we always say symptoms trump bloods..I should choose my words more carefully 🥴.
For me, whilst "only" PMR, the plus 5mg for a few days then down to the last dose where symptoms were better works. You will know in your own mind then if it "residual" pain (?!?) or manageable symptoms with a tad more pred. It may be that 7.5mg is enough, but getting any inflammation out helps determine that. The markers might be ok but just lagging behind. This isn't a long term solution if you can't get the Dr to realise it's not a race to zero. It's managing your symptoms to preserve your remaining sight and quality of life....even on actemra. 😘
Thank you for your responses... Poopadoopy, Devoid, PMRPro, Sheffield Jane!
As I was reacting to this news,previous comments about symptoms over blood and the speed at which I seemed to be reducing kept playing in my head. I'd also looked back at the reduction schedules that Dorset Lady and PMRPro had written so with your support I wrote the rheumatologist an email:
Dear Dr. Monaco,
Of course, I'm happy to hear the markers are normal but feel unsettled as to what to do next. I worked in dentistry for almost two decades and am pretty sure that what I am experiencing is not TMJ. When possible~I can check with my dentist though I doubt that she would see me now.
What concerns me is this pain, temple, and jaw, as well as the occasional numbness or 'contracting sensation' around my temple, is the same that I experienced at the onset, which started this whole thing and led to the diagnosis of 'sinus infection' last July.
I'll be 80 in September, and my desires are driven more by wanting to improve the quality of my time. Doesn't Actemra make me more vulnerable to an infection as well? Would increasing to eight mg per day place me in so much more jeopardy? Could I try 8 mg and see if the pain subsides?
I'll be anxious to hear your thoughts.
Thank you and my best, Marilyn
☺He wrote me back saying that I could go ahead and 'try' the 8 mg for a week and see how I felt. I feel strongly from listening and learning from so many of you that my reduction is JUST TOO FAST! Here is his response:
The answer is yes. 8mg of Medrol will put you at higher risk not only of infection (including coronavirus and you are already in a very high-risk mortality group given your age) but also all the side effects of long term steroids - osteoporosis and fractures, diabetes, perforated bowel, easy bruising - the list is a mile long. Actemra does increase the risk of infection but not as much as steroids do and the side effect profile of this medication is much better than Medrol. I remain in doubt that 8mg of Medrol will relieve your symptoms since 6mg didn't, but if you want to try it for a week I'm okay with that. If there's no improvement in the pain, then I would go right back down to 6mg dose you're on now.
William Monaco, M.D.
See, the big difference here in the states is I have two choices, work with him or try to find another rheumatologist who agrees with me. With an autoimmune disease, the steroids have to come from a rheumy who has the responsibility of managing them (and liability). The ophthalmologist who originally put me on steroids made the appointment for me to see a rheumatologist "who will be responsible for your steroids and monitoring". No GP or Primary care would prescribe the steroids...it has to be a rheumatologist. So, I don't have the flexibility that you folks do. I have enough meds to try this but when that supply is depleted nobody else will prescribe them....so I'm kind of in a bind.
You are the best, the very best. We'll see what happens this week, but then I think I'll approach him about cutting by just one mg. Thank you!!!💗💗
Hi Grammy, they just know they have you over a barrel. I really hope the 0.5mg helps. Stringent social distancing, hand washing etc is the main protection....why dont they consider the now and what is, rather than what could or might be. Litigation is the answer. His detailing of long term risk of doses under 10mg is highly dramatic!! Perhaps he ought to read this....
💖I know!! I enjoyed the link you shared as well. When my GCA wouldn't quiet down after a few months of 100+ mg per day I was told: "we cannot put you on Actemra because the risk, with your history, is too great." I was told then all the scary side-effects he mentioned yesterday and wasn't put on it for a few months. NOW, they seem to be dragged out of the closet, again. I think liability is a huge concern too.
I'm on so much less medicine than before and I would say an almost 80-year-old gal with a laundry list of a medical history falls into a certain 'category' no matter what. I just want to feel the best I can. HUGE THANKS TO ALL OF YOU~~for giving me the knowledge and courage to speak up.
We'll see how it works....then I have to work on getting a stash!! xo
Stash stash stash....I have a very smal one that could last a short while. I couldn't find my 5mg ones a few weeks ago and asked for a pack. I genuinely thought I had put them in the bin. Of course I found them behind my bin, but I had a new pack by then. I will use that one every blue moon! 🤫😉. Up to then I was month to month on 5mg. 💜
How does that work in the UK? Do you have to get a prescription every time or do they just mail you a pack each month? In the states, I have to reach out to the Doc to call the pharmacy every time I need Medrol and my GP wouldn't do it, he would always refer me to the rheumie for Medrol. When I was taking large doses each day, he prescribed a bottle of about 400 8mg tablets because I was taking 32 mg in the am and then 32 mg in the pm....I have a lot left. Then he prescribed 4 mg tablets so I would have to cut everything as I began to taper, I don't have a ton of them.
Why in the name of heaven would he give me all those warnings over 2 mg when I was taking 64mg per day plus Actemra. Helloooooo, liability. In the states, they did not send out a mailing to high-risk folks as they did in the UK....I think they figured it would be advertising for folks to litigate.
Well, I'm better off than most...I have all of you~!!
I have to either ring my gp or go online every month and order them (several times a month usually as meds in different dates). It's in the beginning I think you don't realise you need to stash and that's often when you are awash with them. It is a weird thing isn't it. 60mg plus and actemra and he is scaremongering over 2 mg!! 😤🙄
"Actemra does increase the risk of infection but not as much as steroids"
I beg his pardon - being on a biologic IMMEDIATELY takes you to high risk of infection according to the BSR (UK rheumies, like ACR). That's why you stop using the injections if you get an infection...
As for 2mg more Medrol making a difference - does he never listen to patients who flare when they reduce. What a very silly comment!
One thing I read suggested tcz was only a problem in combination with methotrexate. HOWEVER, the company that makes the stuff says:
"ACTEMRA changes the way your immune system works. This can make you more likely to get infections or make any current infection worse. Some people have serious infections while taking ACTEMRA, including tuberculosis (TB), and infections caused by bacteria, fungi, or viruses that can spread throughout the body. Some people have died from these infections. Your healthcare provider should test you for TB before starting and during treatment with ACTEMRA."
and versus arthritis says:
"Your doctor may decide not to prescribe tocilizumab if:
you keep getting infections"
and
"If you think you may have an infection, or you become unwell in any way, contact your rheumatology team or your GP. People taking tocilizumab do not always display the usual signs of infection, such as a high temperature, as they are blocked by tocilizumab. Seek advice if you’re unsure.
If you’re prescribed antibiotics, speak to your rheumatology team and cancel your tocilizumab infusion. Temporarily stop your injections until the infection has cleared up."
In the 10 years I have been on steroids, most of the time at above 10mg, I can't say I have had more infections - and you are never told to stop or even reduce pred if you have an infection and need antibiotics are you?
Yikes....that is scary. Round me, probably because there are people from all over the world, I think TB is getting more common.
I tend to take note when the company flag it up like that. It's really hard for me to know about infections due to the diabetes which got out of control in year 1. If I get an infection it is bad but I don't have many. I haven't had more infections needing abx on pred. In fact the 2 or 3 years leading up to dx I had terrible skin infections all the time.
That said about day 3 of the lockdown I had a bad infection in my hand and wrist but forgot to stop dmard fully for the week while on abx and it took about 3 weeks to get back to normal swelling wise. I had a cut on my foot that didn't turn after the initial swelling etc and I stopped dmard and it more or less went with my new favourite skin aid, brulidine, especially after I found and removed the glass shard from me slipper sole. 🙄
Yes - when the company says something a bit negative I always think it is likely to be true!! Certainly, because my husband has had TB in the past I can only be considered for tcz after a thorough check for TB and would also have to take the TB antibiotics for 8 months. More "stuff" ...
Thanks so much...I recall at one point when my Dr. sent me to Portland, Maine, for a consult and that specialist telling me how potent Actemra was. He was young, by comparison, who isn't?, and he said that he had no issues medically and that one injection of Actemra would change his blood analysis immediately.
I always appreciate your sharing...it just didn't make sense to me that 2 mg was going to put me in jeopardy !! Plus! I think he just tapers me too fast. Of all of you on the forum, I have not heard of one person being cut at about 2mg per week! Only at one taper did he leave me on it for a month.
So, Thanks! To all of you, I'm going to exercise my free will a bit more. You said UK rheumies like ACR....what does ACR stand for? I'm also going to search for the tapering schedule I have seen here before and work with that....hope I have enough stuff~!
.....I just thought of something else. I have a friend in NH that had GCA, she is an RN, her hubby, my old boss, is an orthodontist and in the family, they have five physicians. Her symptoms were picked up immediately, and she started the prednisone dance. Over these 11 years, she has never been able to get off pred completely, she still takes 1 mg. Each time she tried to kick the one, she couldn't.
So, it is clear, isn't it, that 1 mg. can make a difference? 💐💐
Hi actemera will give an unreliable crp reading and that has caused patients problems in the past, a switched on doctor should have been aware of this. I would ask them why they are interpreting this as all is well Also 2 mg per month is quick even on actemera
I have certainly become aware of this being on the forum. I think that may be at the root of the discomfort.....it has always been a 2 mg cut and, most of the time, every two weeks. I was on over60mg per day in late December. I hope now that I have stood my ground, I can slow down the taper. Thanks
Hi yes I was dropping 5 mg above 20 mg but always struggled so used to do 2.5 more frequently, from 10 mg dropping 1 mg per month, now on 5 just struggling with fatigue
I'm taking all of the shared experiences to heart ...and I think slowing the taper will make a difference. All of you gals go far more slowly than my Doc recommended...and my body felt it!! Thanks 🌸🌸
The ESR/CRP will not necessarily show up as usual if you are on Actemra - Prof Sarah Mackie says she goes only by symptoms in most patients. It is related to how Actemra works but they don't mean the underlying cause of the GCA is not still active and there is evidence of it possibly continuing to cause vascular effects.
In the clinical trials it was obvious that not all patients are able to get off pred altogether despite Acterma, with about 50% still needing some pred. As Devoid has said, this is a fact that seems to have escaped the notice of some rheumies!
And even with Actemra - your adrenal function will have to come back and that will happen slowly. Actemra does not have any effect on adrenal function - just time and low dose pred. If the symptoms you have improve then it would suggest it is either adrenal sluggishness or your body's response to the large cut down in pred dose, 25% at a time is an enormous difference. Actemra doesn't help that either. If it gets worse rather than better, then I'd try 8mg again.
I started the 8 mg today! ....and I'm going to take it slower too. As you could see he wanted me to go back to 6 mg if there was no progress after a week and I'm not going to do that, I'm going to give my body more time. I'm going to try it in the UK way!! 😉😉
I agree totally with the advice you have received. I wish doctors would do as much research as some of our members do. You are going to have to tread your own path in the face of this ignorance. Blood test results are not the infallible guide some doctors seem to imagine. I think your immediate thought of back to 8 mgs makes sense and if that doesn’t work within a few days, then possibly a magic 10 mgs that the body seems to like. You have already been let down once by doctors. I would take no risks and follow your body. Let us know how you get on dear Grammy!! 🌷💞
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