Actemra (Tocilizumab) - fantastic results in the first month

Ouch. Back problems are the worst. How quickly are you reducing your pred dose, I'm just winging it.

Flip,

Sorry I missed this question you posted a few days ago. My rheumy sees me once a month and I also have labs a few days before I see her. She's now reducing me 1 mg pred per month. The Actemra and MTX better keep me in remission. Jan

nice and slow.... I've been reducing at 1mg a week, with no problems. Previously I was struggling to reduce .5mg any time!

I'm hopeful it will push and keep me in remission. I want my life back!

OMG the wedding was awful! His family are a nightmare! But, they are married now, and I w/don't have to deal with them again.

I was diagnosed in Dec 2014 - so I've had PMR for exactly 2 years. I've had a rough ride with it - couldn't get below 20mg at the six month mark and was getting very sick with side effects. The brain fog was rediculous. I simply couldn't function. I had months off work. At the end of the first year, so 12 months ago, I was put on Methotrexate. This worked very quickly and I was able to reduce to 15mg fairly quickly, then did the DSNS method to get to 7.5mg.

When I started on Actemra I was on 7.5mg (was on that dose for about 4 months) and now down to 5.5mg. I'm reducing my pred by .5mg a week - which is incredibly fast - with no withdrawals. 

It is so good to have such positive news😊 Hope you let us know how it goes. My rheumatologist is considering the Acemtra for me I think...but getting approval and paying for it is another question. I live in Colorado, U.S.A.

I'm VERY lucky - been able to get it for free through a trial.

Given how well it's working for me I think I'd be happy to pay for it if it meant going into remission years quicker.

You said originally you thought he was reclassifying you as RA - what trial is this?

Are you in the USA?...and are you on Medicare? I know the drug is very expensive. It is approved for RA. How long have you had GCA.

Sorry Eileen, I can't help you. But I do know he had to reclassify me as having RA in order to get it and the trial ends in Sept 2017.

No Kathy, I'm in Australia - and it's VERY expensive here too!

My rhuemy had to reclassify me as having RA to get it even though I don't have RA. I'm his first patient with PMR to try it.

I have PMR, not GCA.

Oh right - not a PMR trial then, that's all I needed to know.

no, not a PMR trial - although it is for me and the rhuemy!

Eileen, you seem to be the most knowledgeable,regarding pmr, and GCA, so i have several questions, and concerns to ask you, as my rhemy just back yesterday from 3 wks holiday, and i want to ask pertinent questions re my issues with symptons. ok, you know my history, started at 40mg as gp prescribed, no relevant bloodwork done prior to gp thinking i had pmr, so from there, oct 12, till end of oct , or nov 1 was fairly comfortable, was reduced every few days to eventually down to 20 mg,for first week of nov, didnt have too many issues, re pain, then, nov 8th, pain started up again, same inital symptons, not as severe mind you, now that is a month ago, still at 20 mg, and have had pain, shoulders, buttocks, hamstrings, upon awakening especially, even waking through night , every 2, 3 hrs, with pain some nights, worse in am,s when up, usually 5 am or so, one night few days ago, up at 2:20 am, and all night and all day, took catnaps when i could, but bad day, so first question, if 20 mg has not managed pain, symptons etc, for over a month, would this indicate another disease, if so, what would you think rheumy should be doing, ie, what tests for other diseases, since bloodwork has been clouded as ? i have read up on GCA, but have none of the typical jaw, headache, etc, issues, vasculitis ? RA, my gp says blood work didn,t show that,  and then of course, how about eliminating possibility of more serious,cancers, cardiovascular( stopped crestor, statin on oct 5th), i have a tearful breakdown at least once or twice a day these days, don,t know if lack of sleep,chronic pain, depression from pred or what, but know i am getting stressed more and more, not knowing what is going on with my body, i have to add, i have a window of a few hrs, late afternoon, early evening, where i am not too bad, that is more comfortable, short lived, pain returns in shoulder around 9-10 in evening, so please mull my story over, and give me your thoughts, i know all the info regarding tapering, side affects etc, but seriously, if i,m still enduring these symptons, for over a month on 20 mg, what is your advice, i did a blood test yesterday, had a req from rheumy last visit, that she wanted me to do initially a week before i see her in jan, but speaking to secretary yesterday, suggested i get it done yesterday, and rheumy will look at, but am pessimistic as to what that will tell her, since been on pred for 2 months now, and know it changes blood levels, please help me with the questions i should be asking her, i want to call her today, thank you

Cheryl - almost every time you have posted I have given you my thoughts, there really isn't anything else I can tell you. 

The doctor decided she wanted to see you without pred clouding things as much. She has decided on some tests she DOES want to see - and, if I understand you correctly, is suggesting now you do it a bit sooner and she will look at it. Until that is done no-one on earth could make any suggestions about anything. I have no idea what she is looking at and she doesn't know what they will tell her until she gets the results. Having negative tests isn't always a bad thing or a don't know thing. There are loads of tests that can be done - and once you have them they suggest which direction to turn to choose the next investigation.

It's like doing a jigsaw, when you look at a single piece it means nothing and could fit in many different places. Medicine isn't a straighforward thing, it is rarely black or while and that is especially so in the case of autoimmune disorders of any sort. What you see on TV, House for example, is NOT how it works in real life. It's plodding detective work and there may not be a simple answer at the end of it. Nor may there be a simple treatment to offer. There aren't many things in this field that can be cured - but they can be managed well enough to allow a decent standard of living. 

Until she has those results, until she has some indication of what it probably isn't, if she's lucky, what it might be, she isn't in a position to answer ANY questions. And you need to leave her to do the tests and look at the results so SHE can tell YOU what is what as far as she can see. You aren't buying a kitchen or a new house or a new car. Medicine in the US may have been brought into the consumer world by the introduction of Press Ganey scores for patient satisfaction - but your health is not a commodity that you can pick and choose about. It comes the way it comes. True, how the healthcare teams manage your expectations can be good or not so good - but when your expectations are unrealistic you are always going to be disappointed by their offer. 

I know you are in pain - but so are a lot of us, even with a diagnosis and treatment. It can take years to get a "label" for our illnesses - it is said that time scales for a diagnosis of autoimmune disorders are in the 5 to 10 YEARS range. There are quite a few of us who have been ill that long on here. That isn't necessarily the doctor's fault, it is the reality that there aren't always tests that give 100% exact answers. An x-ray or scan will show you have broken your leg - and they can fix it so it doesn't move until your body heals itself by growing new bone. The immune system isn't as simple as that in either sense.

There are a lot of things that haven't been discovered yet. If you had been born even 40 years earlier you wouldn't have had the hope of any treatment, whatever it is you have. Rheumatoid arthritis for example, crippled people. There is a blog called The Seated View - Lene Andersen who writes it is our age, slightly younger I think. She is in a wheelchair and dependent on others because when her RA started as a child there were no treatments and her joints became so damaged they fused, just like many RA patients before her. Today young people who develop JRA and older people with RA are managed with medication and joint replacements that mean they remain mobile - but they are still ill, still often in pain and fatigued. 

Please Cheryl - let your rheumatologist work her way logically through the maze to see if she can find the answers. Don't have unrealistic expectations of how quickly you will have an answer - or even IF you will get an answer of the sort I think you expect. There may not be one. There may not be a label, I hear patients wailing about the doctor only saying "undifferentiated connective tissue disease" - it doesn't matter which it is or isn't, whether it is an inflammatory arthritis or which it is, whether it is lupus or not, the signs and symptoms are managed similarly, the drugs are from the same groups. Often, all the label really means, if you get one you recognise, is that they got this result from this test. All that matters is that they can help releive the pain and symptoms.

Eileen, that,s my whole point, she hasnt suggested any other tests, just coast along on this 20 mg so far, and have been on for over month, not managing pain, i would have thought she would have suggested other tests as well, that,s what is frustrating, so doesn,t seem you have any more ideas for me, i,ll just have to try and be pro active and ask her what other tests she has in mind, to help with this diagnosis, thanks anyway

Cheryl - have you actually READ  what I have said? Have you actually read and listened to ANY of the posts I have written to try to explain to you what has to happen?

No - YOU don't have to be proactive yet - you need to let HER get on with her job. She has waited for your body to be on a lower dose of pred, she has ordered tests to be done now and then she will look at the results. 

Then, and only then, will she herself have any idea what she needs to do. If you keep pestering her with questions that she nor anyone else can answer you are interfering with her thought processes. 

And as I already told you - it takes more than a few months to make diagnoses in most of this sort of case - and your GP did slow this down rather. You are no worse of than a lot of other people with similar problems. Be patient and let your doctor do what she does a lot better than any of her patients.

 

Cheryl, I have followed all of your posts and Eileen's responses.  Clearly, you are very frustrated by your condition.  We have all felt it at one time or another. Often many times as we travel down the rocky road of PMR.

However, Eileen has given you very sound advice.  Please read through everything she has said once again.  Twice if necessary.  Take down some notes. I often find that writing bits of advice given throughout these posting helps my steroid brain sort things out.

 You need to work through things with your rheumatoligist.  I'd give my eye teeth to have a specialist of that sort in my corner.

Wishing you well.