I finally had the muscle biopsy yesterday. It was a much bigger deal than I expected, the Neurologist himself performed the procedure with at least 5 other people helping in the OR, like major surgery. A few days before, I had lunch with a Neurologist, a friend who was in the same med school class as my OH and only treated MS patients her whole career. I asked her if she thought I could have Parkinson's, she said I had absolutely no signs of it. Then I asked her if it could be MS to which she said it was possible but given my age, highly improbable. I had not considered MS till she told me that my difficulty walking was the same as what some of her MS patients described. I can control the unsteadiness, the buckling knees if I really concentrate but it's a huge effort so I either walk like I'm drunk or like a robot.
So I shifted my research to MS and came up with some disturbing information.
Actemra can apparently cause demyelination which is damage to a part of the nerves and cause neurological symptoms.
I won't know the results of the biopsy till the 4th of April and maybe this new information is not relevant to me but had I known that developing MS was a possible side-effect, I would never have taken it.
Actemra for PMR and maybe even for GCA is IMO, a huge, completely unnecessary risk. Just wanted to warn anyone who is wishing or considering taking Actemra.
That’s disturbing news - if it’s proven in years to come. Maybe best to stick with steroids with all it’s (perceived?) faults which is tried and tested over many years than go for something still it it’s infancy.
But I guess if no-one tries new drugs, we will never move on. Depends whether the risk of the drug outweighs the risk of the disease!
Exactly DL, there are yet many side effects that are not listed for Actemra. Apparently there are other biological drugs that do include demyelination as a side effect.
My Rheumy works in a clinic in a teaching hospital in the US. (She is also on the hospital staff.) During my appt. after Actemra was first approved for a standard treatment for GCA in the US she said that there are 2 patients in the hospital who took Actemra, now diagnosed with some kind of gastric rupture. My understanding is that this diagnosis often results in a 3 month hospital stay. Therefore she did not want to give it to me. I am 5.5 years into GCA and sometimes PMR. Now at about 4.25 mg. Pred. I had been thinking the same--not to take Actemra only because I seem to be slowly decreasing Pred. consistently with minimal side effects. Simply observing with no scientific discipline I have noticed that on this site many fairly new PMR patients are already on it.
As DL says - in the USA. I doubt you would get it most places unless you have intractable PMR. And I totally agree - I think Actemra for "just" PMR is OTT unless there are VERY good reasons for not using pred or the PMR has been going on for a very long time. Even so, at 15 years I'd have to be very sure I was being monitored VERY closely...
Thank you, Heron.. I saw a TV show produced here in Spain.. one of those shows that investigate fishy business operations. This episode was about how doctors in Spain gain financially through prescribing new, expensive medications. I was shocked! In the case of PMR/GCA, prednisone works just fine and doesn't have nearly as many side effects, that are not nearly as morbid as the newer drugs either..
The consent form I signed only listed added risk of infections and activating a dormant hep B.. I considered both those risks as reversable. I wouldn't have signed if a degenerative neurological disease had been on the table.
That is shocking, but I suppose it's the end result of what was very common practice back in the day when my father was a GP, the drug companies sending literature in a format which gave you a collection - postcards with cool stamps from around the world (I still have them, from my childhood) and other little presents. And the reps would come to the office and leave multiple samples of new drugs. So I think the incentives just get bigger and bigger (and the price of the drugs goes up and up). My doctor was much more determined that I should be on a bone drug after she went to an osteoporosis workshop, and I've always been suspicious about who sponsored the workshop.
What a horribly worrying time you are having Gaijin. MS is what I thought I had before my PMR diagnosis. My lovely grandma had it. I must say, she never lost her zest for life and interest in other people.
The news about Actemra has just crossed it off my list. What is it with complex modern drugs? They seem worse than the diseases. Please take care, I feel really concerned about you. 🌺
and the link you give says "There is absolutely no proof of a causal relationship between tocilizumab and MS in this patient, "
So this is possibly something of a flight of imagination. The patient had previously been treated with anti-TNF therapy in the form of etanercept - which DOES cause demyelination. It may not have been noticed earlier, the development of the demyelination may have been delayed. The patient may have been developing MS anyway.
I've also looked as some of the other links suggesting a link. None of them have cast-iron evidence that tcz causes demyelination. Yes, demyelination has occured in patients who were on tcz - but it has also been used safely in patients who already had evidence of demyelination after anti-TNF therapies.
Never forget: correlation is NOT causation!
I agree that it is not a good idea to jump straight to Actemra for PMR. I think that pred used carefully and sensibly is the preferable option. But one swallow doesn't make a summer...
You should really be VERY CAREFUL about what you post here. This article talks about ONE person that was diagnosed with MS after being on Actemra for a short period of time while also on many other drugs. In fact and this is a quote from the article “There is absolutely no proof of a causal relationship between tocilizumab and MS in this patient, but it is also not excluded that tocilizumab might have caused secondary autoimmunity in CNS.” The authors wrote. It should also be noted that this woman was a taking methotrexate, vitamin D, naproxen, and dexlansoprazole. and had other conditions so before you start scaring the many people who are on this drug successfully please think twice. And consider that you are not a doctor.
And with this last post I am off this forum. I am blessed with excellent doctors and will rely on their support and resources as well as the Vasculitis Foundation. I am not in this forum for people’s OPINIONS.
I would like to thank all of the kind members who provided me support over the past few months-without your kindness and knowledge i would not have made it through the difficult early days. For your honest answers I am eternally grateful.
Further if you had truly done your homework you would learn that In 2013 the manufacturer Genentech issued a safety letter addressing this issue. All drugs have safety issues it is up to the individual, their doctors and families to make informed decisions.
To be fair, that document says "Most patients who developed GI perforations were taking concomitant nonsteroidal anti-inflammatory medications (NSAIDs), corticosteroids or methotrexate"
It also says "The safety and efficacy of ACTEMRA® for conditions other than RA, PJIA, and SJIA have not yet been established."
Which do both apply for PMR/GCA patients who are put on Actemra.
A respectable doctor would discuss all of those possibilities before prescribing as mine did. In fact I was tested for TB before being allowed to go on the drug.
My original point was that the article was not well represented in the posting - only one portion was referenced and that is a dangerous behavior. Thank you
I'm so glad you are putting this information out there. My research here inn the States showed the same thing. I,too refused actemra. My sister has a disease similar to ms that causes demyelination. Actemra can also activate latent TB....I didn't want to risk any thing further.
So, I didn't intend to shoot a runaway donkey in the arse here but, I think what resonates with many is the eagerness and enthusiasm of doctors to risk us into actemra add if there are NO risks, only recovery. That little print warning of possible complications should be taken seriously. Its there to protect the pharmaceutical company from legal liability. ( don't blame us, we told you this could happen) GCA treatment seems to be THE wild wild west... I know there are some people who tolerate actemra. I've read and heard of more-- that do not. Biologics are big guns.
I'm fairly new to this forum.have received ample encouragement and information. I appreciate the respectful open dialog here.
Dear Gaijin, I just wanted to give you some support for your neurological issues. I have horrendous, progressive neuropathy affecting many sorts of nerves and my "top" neurologist is exploring all sorts of diagnoses, for which I present with some evidence. I feel for you and understand how scary it is. I am on this forum because I also seem to have PMR. In the distant past, I took TNF inhibitors such as Enbrel and my neuro is not ruling them out as causes of my neuropathic symptoms. You can msg me if you want to talk. All the best.
I am sure that when I first had GCA I was referred to neurology who excluded MS. Whether this was because they failed to organize a biopsy in time to confirm GCA or standard practise I don't know, if it is then it would mean that fewer people struck with MS would end up not knowing whether it was there already or possibly related to treatment!
It is horrible to discover that the treatment for one disease, in my case pred has caused another, osteoporosis. But as Pmrpro points out regularly pred is still the best for PMR and GCA. Actemra in the UK is only for GCA and I think rarely.
Hello everybody. I apologize for acting like a child and not responding on my own thread. I had been reading bits and pieces of the threads regarding the moderating which stressed me out and then I went on my thread and I read the first sentence of a reply that seemed harsh, I realized I had offended someone, (whose username I didn't recognise) and caused a conflict. I will go through any length to avoid conflict though I'm always working on being braver. Also, most people on this forum are articulate and write so well while for me it's a struggle to put down my thoughts. I don't speak my native tongue nor my mother tongue anymore so my language skills are deficient.
What I tried to convey in this thread is that demyelination is a possible side effect of tocilizumab. I'm not sure but I think it is even now included as a possible side effect on the insert. And it is listed as a side effect of other biological drugs that end in "zumab".
During the time I have been on this forum, I have seen numerous posts advising against taking AA, PPIs and statins, so I didn't think that my post advising against Actemra would offend anyone.
I took Actemra for 6 months, after it kicked in, it was like I was in remission for about 2 months, Then I started having symptoms again, different ones than before my PMR dx. I had all sorts of tests done before going on Actemra.. Tb, HIV, etc.. I also had several vaccination. I had no infections of any kind, no colds even, during the treatment.
I have been off of any prescription medication now for a couple of months which has made me realise which symptoms were a side effect and which are being caused by whatever condition it is I have now. I am pretty sure that I did have PMR and that the Actemra really did get rid of it. The two months or so I was on it with no symptoms at all was quite spectacular.
I should have known better than to post a study that included only one patient.. I was bound to be corrected by PMRpro! I hope everyone accepts my apology. 🙏
Didn't mean it to sound like correction - it is just the sort of discussion I'm used to and it was interesting. It was someone else who seems offended - but I would say they did the same thing, quoting a text that actually doesn't refer to the majority of patients here. But we all have our own problems with doctors who don't mention everything - so in that sense I don't see why it is wrong to tell others and ask for our opinions.
Don't be so hard on yourself. You write very well, you occasioned an interesting discussion, and anyway the logic of medical research is always difficult to fathom for us laywomen/men. And, whatever the side effects of Actemra actually are, as has been said, biologics are big guns not to be taken lightly. I was given several biologics for RA and had serious (pre-myeloma) blood changes. Some research suggests the blood problem can be caused by those TNF inhibitors, and other research suggests it is a pre-existing condition that is a contra-indication for those biologics. None of this was even mentioned in the pharmaceutical company literature, because it is still provisional. Also wanted to say I sympathize with the language muddle, as I have lived abroad.
I can read a German text and translate it to English without even thinking. There will be German words I have translated umpteen times a day all week - ask me what the English word is in German - and I can't tell you!!! I often DO know it in the context of a German conversation, It's a really bizarre feeling - and the reason you should only ever translate from the foreign language to your native language. But I can generally "do" being ill in German, as can OH.
They say that truly bilingual people have difficulty translating words... It has to be in context.. So that means you are probably at bilingual level in German. But maybe it's an urban legend?
OH grew up in Rome, speaks 5 languages well, is a natural linguist, is intimidating but complimentary (to me). He speaks of passive (reading, understanding) and active (speaking) language. I had to read German, French. Italian, throughout my career as an art historian, lived in, and traveled for work to, Italy and France, even translated some art criticism, and well, gee, gosh, golly, don't know what has happened. Old age, prednisone, illness, others speaking (sometimes better) English to me, all have me speaking some strange hybrid language, even when I can still read perfectly well. 🤣🤣🤔🤔😜😜
We were only at the bilingual level and our spoken German wasn't fantastic - but when we returned to the UK we spoke a mix in the house, probably because the girls had words they didn't know in both languages because of age. I reckoned I'd got a long way in the language when I day-dreamed in German - no idea if I night-dream in German as I never remember dreams. When I met my best friend in Germany her little girl was a few months old - she is from NI, English her first language, but she knew next to no "baby world" words in English.
However - although we do both "do" being ill in German quite happily, which is just as well given that is the option here, I do like the fact that the new regional head of rheumatology speaks such excellent English and wants to keep his skills up! His nurses are fascinated too and love listening to us.
English, at least when compared to Spanish, has many more layman terms to describe symptoms. In Spanish the word "mareo" for example can mean nausea, motion sickness as well as dizziness.. No wonder doctors here are not interested in hearing patients describe their symptoms!
Some things are like that in German - not helped by the fact that German as used here isn't quite the same as in the region of Germany where I learned my German. There "Mir ist schlect" means "I feel sick/nauseous" - but apparently it doesn't here!! As I discovered when I was feeling VERY unwell!!!
I find it quite a handicap to describe symptoms in Spanish even though I've lived here for 46 years..I usually just use Spanglish.. I say everything in Spanish except the symptoms, which I say in English pronounced with a Spanish accent.😜
Your corrections or whatever are always welcome,PMRpro. There are so many useful things you have taught me and I have no problem with people disagreeing with me, either .. I just think the tone of the first sentence that I peeked at on the email notification made me panic... I thought I must had said something terribly wrong to provoke such a tone. I was already freaking out about something else, too..
Thanks for your kind comments, I also had a similar experience when I asked a group of young men what language they were speaking. They were fishermen from the South of England!
I took Actemra for 8 months (I think I said for 6 months before but it was an error). After it kicked in at around 5 weeks, I experienced a complete remission. It lasted around 10 weeks at which point symptoms returned with a vengence. At first I thought it was an adrenal insufficiency but enven after going back up to 12.5mg of prednisone, my symptoms got worse. I had extreme fatigue like never before, and new symptoms that reminded me of my mother's who had parkinson's appeared. So I went to see a Neurologist who has ordered all sorts of tests including a muscle biopsy and has promised a definitive diagnosis in early April. I was told by a friend who is a retired neuro specializing in MS that I was too old for MS although one of my symptoms, a kind of ataxia - like gait, reminded her of symptoms that her MS patients described. I can sort of control it if I concentrate on my walking though it's a big physical effort to do so. Apparently this is a symptom of Parkinson's as well as MS. So I started researching MS when I came across the infamous article.
I apologize again for the misunderstanding I've caused. I seemed to have caused a member to leave the group, even, which is terrible as this community is the most intimate and informative one I've come across.
I went on Actemra against my family's wishes. I was told by my rheumi that the only added risk I personally had was a latent hepatitis B that could reactivate. I went to my GI specialist and told her, she said there was no problem if I were to be closely monitored. Which I wasn't, IMO, but that's another story. Anyway. I wanted to try Actemra for my PMR as I was given the opportunity that most of us don't have yet, thinking I would be contributing in a small way to PMR.
One of the first things PMRpro advised me about PMR is that you need to arm yourself with a lot of patience. The tapering has to be super slow and you never know how long the desease will stay with you. That really is the most important advice. I believe now that prednisone works, and the low doses required to control the symptoms of PMR are not nearly as detrimental to our health as any of the new drugs.
I only meant to highlight this belief in my original post that has caused so much controversy.
Actemra did work for me but knowing what I know now, I think I would have stayed on the prednisone alone. I didn't want anyone to think that Actemra caused MY symptoms, Im not even sure if I have demyelination. I hope I was clearer this time.
I will be more careful about what I post in the future.
Your gait problems are similar to mine. I can control how I walk but it really hurts to walk with proper posture and controlling my legs.
I took the subcutaneous injection every week, I think it was around 160mgs..im not sure but I think it only comes in one dose.
I was told to taper much faster than what is advised on this forum and it's probably protocol by now although in Spain, the smallest dose is 2.5 mg of prednisone. I did the slow taper (by one fourth of the 2.5 pill every month although toward the end I realised that the pred at such a low dose was doing nothing.
There are so many autoimmune diseases and they say when you have one, you can get more. Some people have several AI conditions.
When I was diagnosed with "probable PMR" in October of 2016 my main complaint was muscle fatigability. When I walked my knees would start to buckle and I would have to rest. My muscles were also intolerant to exercise. Now I can do weight machines at the gym and I don't get severe DOMS anymore. I have completely different symptoms than when I was diagnosed with PMR.
Your pain and gait problems are perhaps related to spinal degeneration? My neurologist ruled that out somehow the first day I saw him when he ordered a muscle biopsy and
7 viales of blood to test.
You won't be a burden to anyone on this forum. Not many people have had experience with Actemra on here. It's either prescribed as monotherapy or in conjunction with methotrexate and /or prednisone. I would just keep tapering maybe by the faster tapering schedule - Dorset Lady's one. If your symptoms went away after you started Actemra, it's clear that it's working. I stopped taking it because it stopped working, if it works for you, I think after a year, you can go off of it and hopefully you will be in remission.
Hope I didn't scare you with
the demyelination, it sounds like your pain and trouble walking have already been diagnosed?
You are no burden to anyone on this forum. Not many have any experience regarding Actemra, though. I'll answer any questions I can..
With Actemra you can usually reduce quickly down to about 5mg provided the symptoms don't reappear - and, contrary to what some doctors tell their patients, you CAN flare while on Actemra. They obviously haven't read the study documentation which makes it obvious that for some people Actemra may reduce the pred dose but not dispense with it altogether. However, Actemra makes no difference to the recovery of adrenal function and slow reduction below 5mg is still required for that reason.
What I meant was that if you were to drop from 3.5mg pred to zero without a slow taper, you are putting yourself at risk of an adrenal crisis. It may not be painful, but it could be life-threatening. Even if your adrenal glands are CAPABLE of producing cortisol, it does not mean they will do so when required when they have to make that big an adjustment. It depends on a whole range of factors, not a single organ and substance, but several organs/glands and hormones. That is why you should reduce in smaller steps.
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Flying with Tocilizumab
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