Actemra Is Now In My Life

[Kentishgirl]

Hi everyone, Kentishgirl Girl Here, we I am now on actemra, I'm not happy about it! the possible side effects scare me to death!!, the data sheet indicates you can suffer horrific side effects, having the desese in itself is a pathway to horrible side effects! and to add this lot to the mix, just adds more uncertainty.

On Wednesday, my doctor now wants to add Addreolate? he says to protect my bones? My husband did a great deal of research on this drug, and what he found was shocking!!

Mercy the developer and maker of this stuff, lied, and cheated their way into the market, they were challenged by the food and drug administration numerous times, for their inappropriate business practices.

They spent millions of dollars lobbying congrest to get this product approved and on to the market, and of course our money/power hungry senators, and congressmen gave them what they wanted.

I have arbitrarily decided to not take it!! I feel that it puts me at another level of risk, actemera is bad enough!, what do you guys think, are any of you on alendronate? if so, what has your experience be?

One last thing, the doc, reduced my pred down to 17.5 mg's from 20, tapering to 10, at 2.5 a week, my markers were all negative!😊 for those of you in the States, happy labour day, hope where you are living, mother nature is going to be kind to you?

To the rest of this great band of brothers, and sisters, be well, be safe, Love one another.

Kentishgirl

[SheffieldJane]

Long time no see Kentishgirl. Thank goodness for people like your husband. I personally have been put off Alendronic Acid by what I’ve read and the unwarranted pressure to take it. At first I thought Actemra was going to be the wonder drug that it was trumpeted to be. Then I began reading worrying things about serious side effects. I can’t remember why it was prescribed to you, are you in the U.K ?

I am so glad that you are being proactive about your treatment. I have nothing useful to add except that I am on a fraction of the drugs I have been offered and hope to continue that way. I wish you well!!

[Kentishgirl in reply to SheffieldJane]

Hello Shefieldjane, your right I have not been on lately, had so many balls in the air, Jane I am not in the U?K. we are from there, kent as you have gathered I'm sure, we are in Washington State in the mad crazy usa! with a lunatic for a president!

I have had two dexa scans, both show a small amount of osteopenia, and very small amount of osteoporosis! My Rhumy insist I should be on the alendronate, if I should break a hip bone or thigh bone, I will be dead in a year! and it would be a slow long painful death!!😲

My husband's reading of the alendronate contraindications states that this stuff can cause bones to break more easier!? his further research tells why, this crap, does nothing to strengthen the inner core of the bone, just the surface! my husband was an engineer for Boeing, and his training involved metallurgy to some degree, he says "if you harden the exterior of a metal/bone, without improving the inner core of the substance, all you are doing , is making the object more susceptible to fracturing, under a sharp load!"

AaWith a fall, bones that have been made brittle, will not be resilient, they will snap like a dried out twig! the FDA criticized Meark for that reason ! So the Rhumy can jump up and down all he wants!! I ain't taking it!

Thank you for your response Jane, I wish you good luck with your slow withdrew al from pred, and hope you can live a normal life, bless you

Kentishgirl ( Eileen )

[SheffieldJane in reply to Kentishgirl]

Of course you are Kentishgirl we’ve had this conversation. PMRPro has given you her wisdom. I am shocked that any responsible doctor would say that you would be dead within the year with a fracture. Like you I have read that people have reported more fractures whilst on it. The jaw necrosis, as a rare side effect frightens me too. Why are they pushing it so much when contradictory research is emerging?

I know so little about Actemra and am unlikely to be offered it. I’ll stick with getting off the devil I know ( Pred). Take the vitD + Calcium and try to walk more. I have been slothful of late - no grandchildren to motivate me, all flown away. I hope all goes well for you. I think some of us would be better off seeing engineers.

[PMRpro Ambassador]

All drugs have horrendous side effects listed on the data sheet - especially in the USA with its litiginous culture. Even aspirin. However - the markers are immaterial when you are on Actemra, that's what it does, stops the stuff that raises the markers. It doesn't mean the GCA isn't still there. Something of which many doctors appear unaware.

Have you had a dexascan to see if alendronic acid would even be warranted? I took 4 tablets, was very unhappy, did my research (this was 9 years ago so far less on tinterwebs but basically the same as your husband) and discussed it with a different GP. We agreed to wait for the dexascan result which was fine - and the following 2 scans over the years have shown almost no change and a result firmly in the normal range. No alendronic acid. Just calcium and vit D (important really) and I walk as much as I can. Could do better there I admit. HeronNS is the "diet, supplements and exercise" guru, she has a post about what she did to wrest her bone density from almost osteoporosis to fine, no treatment required.

[Kentishgirl in reply to PMRpro]

Hi PMRPro, thank you so much for your advice, I will look into the diet, I am so glad you are doing so well!!😊😊😊 let's pray you can get off of, or down to a very low dose of preds, as we all strive to do! I do also exrcise, I walk 5 days a week, Kentucky5 told me she is taking the shots, and has had no side effects from it, good for her, I hope she has complete success! Well good friend stay well, may the gods of good health watch over you,

Bless you,

Kentishgirl

[Kentucky5]

Hi. I have PMR/GCA- Aug. 2017... 58 yrs old...Started on 60mg prednisone... 6 weeks later started weekly self-injection of Actemra. Refused bone saving drugs... year later, today, I am tapering from 4 to 3.5mg prednisone and still on weekly Actemra shots. I have had no know side affects from the shots. I exercise 4X a week. I have done well with both preds and shots. My belief is give it a try. If it gives you trouble, quit... but should it work, you have gained a faster track to being prednisone free.

[Kentishgirl in reply to Kentucky5]

Hello Kentucky5, thank you for your input and I am so glad for you, you are able to tolerate the actemra! I have had three shots so far, with no reaction, but today, I am in a terrible funk! I threw up this morning, and all I want to do is sleep?

What is happening to me ( I think ) is the cost of this drug! Is making me sick! at $400 a shot!! $20.000 a year! is daunting, Medicare doesn't pay, we have medicare, and a supplement, but no Commercial insurance! Doctor says he can get the provider of the drug to give me assistance?? We have to wait and see?😟

Thank you for your help, you take care of yourself, bless you,

Kentishgirl

[Kentucky5 in reply to Kentishgirl]

Hi. DO HAVE the DOCTOR do the assist plan. It is wonderful! The company WANTS people to be able to afford it and use it. My cost is low with the program.

[Kentishgirl in reply to Kentucky5]

Hey Kentucky5 that is good news, i'm glad you qualified, keep your fingers crossed for me, you have cheared me up no end, thank you!!😊😊😊

Kentishgirl

[Hidden]

Hi Kentishgirl

I declined Alendronic and found this book really helpful. It's an American publication (I've used a uk link, but my copy was shipped from the States).

It's easy to follow nd has practical advice about ways to reduce osteo risk. Explains Vit D, calcium, K group etc etc and Ive found it easy to supplement diet with food rich in what I believe I need. I hope things improve for you.

amazon.co.uk/Your-Bones-Pre...

[Kentishgirl in reply to Hidden]

Hi Australsurfer50, thank you for the heads the book, I am in the States, and havnd it on Amazon aND will order it tonight! thank you! I have heard from a reliable source, that this drug, was developed from a cleaning fluid, used to clean the hulls of ships!!!😲 how true it is, I can only speculate? I did read on a critical site, how crooked the process was to get it approved ! an d on to the market? Why? if the product is so good, it will sell itself!!,

Again thank you for your concern, and helpful advice, stay well, bless you,

Kentishgirl

[PMRpro Ambassador in reply to Kentishgirl]

Do tell me more! It sounds a rather stretched line to me - from someone who has an agenda to discredit bisphosphonates.

[HeronNS in reply to Kentishgirl]

This is what glyphosate (Monsanto's infamous Roundup) was originally developed for. I think it was to clean out, descale pipes, boilers, etc. No wonder it destroys the guts of insects and is implicated in human gut problems!

Bisphosphonates, on the other hand, are related to the white phosphorus handled by people working, for example, to make matchsticks. Without proper safeguards they developed "fossy jaw".

[Lauren103]

Hi

I am taking Fosamax and Actemra. My first doctor did not prescribe anything for my bones. In just 2 months time I went from a normal bone density test to osteopenia. Around the same time, I was fortunate enough to referred to an excellent rheumatologist. He immediately put me on Fosamax. Like you, I was worried too, but I took it as prescribed every week. I just had a new bone density test. I was so happy when I read the report. My test was normal and stable. No osteoporosis or osteopenia. My bone density increased. So, although the documentation about these products is scary- I am glad I took it.

[PMRpro Ambassador in reply to Lauren103]

How do you know that you went from normal to osteopenia in 2 months? The only way to measure bone density is dexascanning and it is not accurate enough to make such a statement in such a short time. Osteopenia may only be a very small change from normal, it is the term used for all t-score readings between -1.0 and -2.5. -0.9 is normal. -1.0 is osteopenia. And it is a very long way from -2.5 and osteoporosis.

[Lauren103]

Hi

Originally, I had a bone density test because I had never had one before; it was scheduled as part of my regular yearly exam. At that time I didn’t know that over the next few months I would be diagnosed with GCA/PMR. That first bone density test was a baseline; I had neither osteoporosis nor osteopenia. Once I was diagnosed, I saw my first rheumatologist. I was started on 60 mg of prednisone. My rheumatologist thought I didn’t need Fosamax because my bone density, as evidenced by my test, was fine. I ended up changing to a different rheumatologist. He wanted a new bone density taken. It was then that I saw the change in my results. I couldn’t believe I had developed osteopenia in such a short time but I had. That was over 2 years ago. Recently, my rheumatologist scheduled another bone density test to see how things were going. My results show no osteoporosis or osteopenia. I actually improved; I have returned to a stable and normal score. I haven’t had any trouble taking the pill once a week. Of course, like everyone else, I look forward to a time when I will not have to take all these meds. I should have been more detailed in my former post regarding all this. Thanks for your response; it has given me a chance to make things a bit more clear.

[HeronNS in reply to Lauren103]

Were your scans done in the same facility on the same machine each time?

I had scans a year apart on the same machine, even placed in a really uncomfortable position the second time because physiotherapy had straightened up my spine, so I would be in exactly the same position as I'd been in the first time! In the intervening year my pred dose had been above 5 mg for about seven months, and I improved my bone density from -2 to -1.6 only through nutrition including a few supplements and appropriate exercise. I hope to have a third scan later this year, three years since my second one and hope things are still good.