Biologics: Maybe I just haven't found the right... - PMRGCAuk

PMRGCAuk
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Biologics

valb232
valb232
69 Replies

Maybe I just haven't found the right section, but I don't see any mention of anyone taking a biologic drug in addition to prednisone. Is anyone taking Actemra or any other drug that is helping their GCA symptoms? Or something for PMR? I would very much like to hear from anyone who is or was, and the effect, side effects, etc. Thank you in advance.

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Yellowbluebell

Hi, as my pmr is being controlled by pred alone i cant give you any help with actemra but others will be along later when the uk wakes up. YBB

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PMRpro
PMRproModerator

There is only Actemra that has been approved, there are people in the US on it for both and one or two in the UK using it for GCA. In the UK the guidelines are very strict and it is only funded for a year anyway for difficult to treat GCA, it will be unlikely to be used in "just" PMR.

We have had a few patients who were approved for its use - but adverse effects or lack of effect (for whatever reason) were also a factor. It isn't a perfect answer - and it is very expensive. In many countries it is available immediately for RA - for GCA they still have to seek approval.

There are other IL-6 inhibitors being trialed in small pilot studies - but their use otherwise would probably be off-label which brings in funding issues. No other mechanism biologics are likely to help in PMR - or GCA if it comes to that - it is the pathways involved that are important. It is predominantly IL-6 with possibly a small proportion of cases involving other pathways but until they have been definitely identified it isn't entirely clear.

If you use the Search box at the top right and enter Actemra it will bring up a list of the past posts on the subject - restrict your search to PMRGCAuk or you will get the RA discussions too.

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Dream21

I have been taking Actemra for 11/2 -2 years. I have GCA/PMR. I could not get below 30mg Prednisone without a return of symptoms.

I now do a weekly shot of Actemra and on 2mg Prednisone. For me, it has been a wonderful drug to control my disease. Saying that...make sure you get flu shot, Zoster Vaccine, Pneumonia Vaccine, as you will be more susceptible to infections.

I have not had any flus or illnesses. I will not socialize with people who are sick, careful to wipe down handle on grocery cart, etc to minimize exposure to flus/infections. Also, cognizant about germs.

Some people are leery of Actemra, but if you need it and respond well, it can lesson your need for high doses of Prednisone.

I live in the United States. The pharmacy deliveries it. Also, once a month the specialist pharmacist will ask you about symptoms and side effects and look at my labs from the doctor. It is very well monitored.

If you have more questions, feel free to ask.

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Dream21
Dream21
in reply to Dream21

It sounds that in the UK it is harder to get and not widely used, like here in the States.

Probably because it is very expensive! Roughly $1,000.00 a shot. I take one shot a week. That is $4000.00 a month and $48,000 per year. Luckily, my insurance pays for it.

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PMRpro
PMRproModerator
in reply to Dream21

It isn't particularly widely used in the USA either, especially for PMR - I got the impression that some insurances won't cover it for PMR and personally I think the risks associated with biologics are hard to reconcile with use for PMR. But that is me.

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Dream21
Dream21
in reply to PMRpro

I think you missed something in my post. I have GCA and PMR. For hard to treat GCA, it is the preferred treatment. I understand that you have PMR, but with GCA it is recommended.

My case is the type of case they use it. I had been on Prednisone for a year and a half and could not get below 30mg. I had terrible side effects from the Prednisone.

It is used here for GCA and Rheumatoid Arthritis. Like anything your doctor would have to assess your health. It has done wonders for me.

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PMRpro
PMRproModerator
in reply to Dream21

I think it is stretching it to say it is the "preferred treatment" for hard to treat GCA. You took my reply out of context - Actemra is still a second or even third line approach to GCA, GCA is a rare disease, it isn't used that much as yet as it has only been approved for a couple of years - and even new so-called wonder-treatments have to be tried out and proven to live up to their names.

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Dream21
Dream21
in reply to PMRpro

I am going to respectfully disagree with you. I have researched this a lot. It is a new treatment for GCA. I have read the research.

Lucky you have PMR and did not have to make that decision. GCA patients are on higher doses of Prednisone. The person requested info., which I gave.

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PMRpro
PMRproModerator
in reply to Dream21

Do you think I haven't read the research? And discussed it at length with rheumatologists and patients who were involved in the research and in drawing up international guidelines?

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Dream21
Dream21
in reply to PMRpro

Arbitration Please

My daughter is a doctor, and we researched it together. It sounds like a cultural difference on how our countries choose to address it. I do not like be judged in a support group. This is an arbitrator issue.

It is used in the United States, more than you say. (Verified by my daughter, the doctor.) However, it is not a first drug option. You do not know my medical history or why my doctor chose this option.

TCA is a serious disease and there is not any cure. We have limited options to choose from. I would rather focus on the better life I am living now.If things change, I will reconsider my options. Blindness and inflammation of blood vessels is nothing to take lightly.

I do not like being bullied for my viewpoint, as someone who is using Actemra now. People are notified of the risks before treatment. As you know, steroids have their own damaging effects.

Two people on this thread sound like Actemra was offered. Everyone has to weigh their options and allowed to make their own choices.

People need to know that it has risks, but has allowed me to have a life after 3 years on the couch.

I am sorry you cannot just accept a difference of opinion.

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PMRpro
PMRproModerator
in reply to Dream21

I am not bullying you, you also know nothing about MY background. I just said I had looked at it too.

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Dream21
Dream21
in reply to PMRpro

Yes, you did. “I find that hard to believe...” You wanted to be right, not her someone’s testimonial. Well... this is my last post. You are doing your GCA community a disservice. Good luck and Good bye.

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Hidden
Hidden
in reply to Dream21

Dream21: If you happen to read this--- the forum's mantra is that tocilizumab is only an "expensive steroid sparing medication".

Stick around ... I like your opinions too. Nobody really knows anything. Research only says "evidence suggests" one thing or another. Statistics are based on probability. Data can suggest one conclusion but a different conclusion is always possible.

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Hidden
HiddenAmbassador
in reply to Dream21

My experience of Dr's and specialists in the UK is that they don't have the same level of experience with pmr gca and treatment as pmrpro. I have a 3 higher degrees and a doctorate and taught research methodology to everyone from community workers, nurses, podiatrists, police and med students for 20 years. I have diligently researched pmr in particular for over 3 years and still pmrpro has forgotten more than I know. I think most members who have been around a while know that too and know how many messages she replies to on a daily basis.

There is a cultural difference and differences in treatment in different countries. The members are predominantly in the country of origin for this forum and charity... The UK. It would be good if this was taken into account by all members. It would help interactions if you all filled your profiles in. The moderators read ALL posts and replies.... The more info we have they have the more specific the replies can be. In the UK it's extremely hard to have it prescribed and it is no where near first line treatment.

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Dream21
Dream21
in reply to Hidden

Are you the site moderator or just some else wanting to put me in my place?

Again ... IT WAS NOT USED AS THE FIRST line of treatment. READ MY POST.

If this is a UK only support group, then do not put it on the World Wide Web. The World Wide Web is to share info world wide. I will not comment on this forum again. Your GCA patients should fight for a voice on this site. If I was being prescribed Actemra in the UK, I would be pissed that one person was discouraging others to share their experiences about a drug my doctor prescribed. How do you GCA patients feel about one person being the authority on GCA, when she has PMR and not GCA.

If she is the spokesperson for your country that is your choice. However, if I lived there, I would be angry for her discouraging people who take the drug to share their experience. Does your medical community of the UK agree with her? This is a GCA/PMR support group. I shared my experience. Good bye.

She told me “I find this hard to believe.” If you allow bullies and do not respect other opinions that is not a support group. To give someone power over a doctor is dangerous.

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Hidden
HiddenAmbassador
in reply to Dream21

That is just rude. It's not just for the UK but if we don't know where you are we may not get the info right. I don't understand your aggressive approach.

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Dream21
Dream21
in reply to Hidden

Huh? Goodbye.

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Relative
Relative
in reply to Dream21

Dream21 I hope you stayed on as it is valuable to hear different information - especially from US and notUK - because Americans pay so much for their healthcare (which is an issue), they get much more. Where I come from actemra is first drug for GCA patients not responding well to steroids. This is a relevant discussion about GCA not PMR.

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Yellowbluebell
YellowbluebellModerator
in reply to Dream21

No poopadoop is not a site moderator but she is one of our ambassadors who does a fantastic job giving advice, but i am a moderator along with two others. As moderators we read everything that is posted on this forum including all of your recent posts.

Whilst you might disagree with pmrpro's opinions on GCA because she doesnt have the disease you actually have no idea of her experience or qualifications that allow her to talk about the subject in detail. I am assuming as your daughter is a doctor she is able to talk with some knowledge on diseases she doesnt have herself!! Therefore pmrpro doesnt need to have GCA to be an expert on the subject.

I will refrain from getting into an argument about how this forum works because as far as i am aware from the feed back we receive on a regular basis most people are more than happy with the way it is run.

Your verbal attacks on two members wont be tolerated and if you can not restrain yourself i will have no other option than to restrict you. Of course if you no longer wish to be a member on the forum as you have stated then you can simply delete yourself.

Regards

Yellowbluebell

Moderator

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KellyInTexas
KellyInTexas
in reply to PMRpro

It’s equally stringent to get biologics in the states as in the UK.

For a basic understand- in very simplistic terms for membership reading here- not to be nitpicked because I have no intentions of writing a comparative paper:

A basic idea is this: ( a working flow chart)

You can think of our American health insurance companies ( which are for profit yet government regulated ) sort of like your NHS / NICE guide lines.

To get biologics for my Autoimmune disease ( Im currently on Rituximab) I had to meet very strict criteria. I had to go through a protocol of trying and failing many treatments first.

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Yellowbluebell
YellowbluebellModerator
in reply to KellyInTexas

Thats the case in this country for certain drugs as well.

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Hidden
HiddenAmbassador
in reply to KellyInTexas

We all have hoops to deal with when it come to health care. I like the free at point of access model. But there are tweaks I wouldn't mind for non-attendance etc.

A few weeks ago a UK member was upset because she was on actemra, and the Dr's pulled it with no notice despite the fact s/he was making progress tapering pred and not flaring. Fortunately despite the limit of 12mths given by Nice,, the drs gave another 3 months and hopefully reassessed then. That's as close as I can remember it! So apologies if misremembered.

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KellyInTexas
KellyInTexas
in reply to Hidden

Now there may be a difference here. My doctor just re submitted and as long as he shows , “ proof of concept?” I can keep receiving it as long as my doctor feels there indeed IS improvement.

I have a specialist- why would he give me the infusions if he could not prove out the need or benefit.

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Hidden
HiddenAmbassador
in reply to KellyInTexas

There seems to be that approach for rheumatoid arthritis. It's supposed to be a "joint" decision with specialist and patient regarding continuation. But the NICE guidelines for GCA say limited to 12months. I suspect when the raft of research from the year 2 stages is published that may be increased if it shows good results.

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Chrisellie
Chrisellie
in reply to Hidden

Lets hope so the research has been completed and I am also looking forward to the report. I was told by the consultant, that at the meeting in Europe, it was extremely positive, but I will wait and see.

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Hidden
HiddenAmbassador
in reply to Chrisellie

That's a good sign. Fingers crossed. 🤞

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PMRpro
PMRproModerator
in reply to Chrisellie

The first stages do look excellent- it gets about half of patients off pred within a couple of years at most, often in a year. The other about half get to a lower dose of pred. A small number it doesn't work for. But the clinical trials are relatively small - it is only when it is being used in larger numbers that you identify potential problems - and I know of 2 or 3 on the forums alone who have had to stop tocilizumab because of adverse effects of varying severity.

The other major question is how long the effect lasts - will there be relapses. And that will take some years to establish. We are at that stage now.

It is good - not disputing that at all - but it isn't perfect and it isn't without risks. And it isn't for PMR without very good reason. It may work - but if every PMR patient were put on it and it doesn't result in permanent remission, the healthcare systems would become unaffordable, whatever sort they are.

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Chrisellie
Chrisellie
in reply to PMRpro

Agree.

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piglette
piglette
in reply to Hidden

The free at point of contact does seem to be abused more than it was. I was talking to a local GP the other day and he reckoned 50% of patients should not be there. He had had someone the previous day who insisted she was an emergency and had to be seen immediately. It turned out she had a paper cut.

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Hidden
HiddenAmbassador
in reply to piglette

I don't know how to reply to that. That would be one of the tweaks that would involve a fine or something. Someone was saying people called an ambulance and went to a and e with a splinter. 😭🙄😱

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KellyInTexas
KellyInTexas
in reply to Hidden

Slippery slope...

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Yellowbluebell
YellowbluebellModerator
in reply to piglette

What a waste of time!! You see it on tv where our emergancy services are called for all sorts of nonsense. My husband is a retired fireman and he went to so many ridiculous calls!

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piglette

People seem to phone up 999 with the most amazing requests. They complain about the restaurant not serving them on time, asking for a pint of milk and so on. Someone should write a book on some of them, they are so mind blowing.

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Hidden
HiddenAmbassador
in reply to piglette

There may be a couple of lists of these things.

metro.co.uk/2017/12/30/thes...

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Yellowbluebell
YellowbluebellModerator
in reply to piglette

I know!! You assume people are intelligent enough to realise what the 999 number is for but obviously not in a lot of cases. If they have mental health issues you can understand but most of the time wasters are just idiots!!

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piglette

I suppose some do not dial 999 but go straight to A&E with this trivia. There was one guy who several times complained of chest pains and would get an ambulance to the hospital. He then would say he was better and go home. It turned out he lived next to the hospital and wanted a free lift home. The ambulance people got their revenge the next time by taking him to a hospital thirty miles away!

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Yellowbluebell
YellowbluebellModerator
in reply to piglette

Oh brill!! Bet that cured him of his chest pains!!

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Hidden
Hidden
in reply to piglette

That could happen in the US but I would guess the person would have to be pretty stupid. It would be much cheaper to call a taxi. Many more people probably should call an ambulance and don't because of the expense.

One time someone called an ambulance for me without asking. I was perturbed and said if I wanted to go the emergency room, I would have driven myself. The ambulance ride is usually more expensive if the person is not admitted. I ended up in intensive care so it didn't cost me anything. My insurance company paid 100%.

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piglette
piglette
in reply to Hidden

In U.K. the guy got the ambulance for free although it probably cost nearly three hundred dollars to the British taxpayer. It meant he did not have to pay for a taxi, until he was stuck thirty miles from home!

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PMRpro
PMRproModerator
in reply to piglette

There are several TV programmes! "999 What's your emergency" had a whole programme on the abuse the call handlers receive for everything from telling someone that the 999 line and ambos are not a taxi hotline for when you are so drunk you don't know where you are and how to get home to them telling someone how to do CPR while waiting for the ambo to arrive.

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piglette
piglette
in reply to PMRpro

I have seen it, what gets me is how polite the 999 people are to some of these people and they even waste time bothering to talk to them.

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piglette
piglette
in reply to Dream21

In UK as people normally get their medication for free or a small charge about $11.5 per prescription, the government is very careful what is prescribed. You have to go through hoops if you want something which they think can be replaced by something cheaper.

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Dream21
Dream21
in reply to piglette

Yes. I understand. Our systems are different.

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Dream21
Dream21
in reply to piglette

Hi Piglette...We have our own heath insurance problems here in the states.

I was lucky to receive good benefits as a teacher. Many people pay higher copays due to how expensive health care is here, and employers do not want to pay the higher premiums on better health plans. :(

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piglette
piglette
in reply to Dream21

In UK we complain about the NHS but we are actually very lucky to have it particularly if you are poor. Also they are excellent in an emergency. It is their admin and computer systems that are so disastrous. We can have private insurance which helps skip the massive queues.

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Dream21
Dream21
in reply to piglette

That is wonderful.

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PMRpro
PMRproModerator
in reply to piglette

They have an excellent concept here: the cheapest generic for a drug is covered, if you want a brand, even if it is because you NEED it, you pay the difference. OH's heart medication also comes in a slow release version and that is what works better for him. But we pay the excess charge.

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Devoid

I am soon to be starting on actemera for LVV not well controlled with steroids and methotrexate. In uk

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Relative
Relative
in reply to Devoid

Where are you in U K?

Who is your rheumatologist?

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Devoid
Devoid
in reply to Relative

In the south west, saw rheumatologist within 24 hours of blood results, treated initially forGCA with steroids, then had ct pet scan and LVV diagnosis. Methotrexate introduced 12 weeks ago, no real improvement, funding for actemera passed 2 weeks ago, just waiting for the go ahead

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Dream21
Dream21
in reply to Devoid

Make sure to get all your immunizations and stay away from sick people. My husband is sleeping in another room when he is sick.

Also, if you have any type of sickness, you skip a dose for that week until you are healthy again. It has not been a problem to skip until you are better.

I wish you a successful time on the medication.

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Dream21
Dream21
in reply to Devoid

That is why I began Actemra.

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enan-illuc

Valb232,

I am on Actemra/Tocilizumab and it has been very effective. I have been on 162mg every two weeks and have not had a problem so far. I have GCA and PMR. You do have to give yourself the shot but you do get used to it. I hope this helps.

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KellyInTexas

I had recently asked this very question to PMR pro on someone else’s thread. Let me go back and see what I can find in her response to me.

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Dream21

Also, I was on Methrotrexate (No effect on my disease) with Prednisone before transitioning to Actemra.

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Devoid
Devoid
in reply to Dream21

Hi not sure,did you mean methotrexate didn’t help, I have now done 12 weeks on it building up to 25mg per week, really not sure if I have any real benefit, plan to reduce it along with the steroids. Had a couple of times when I’ve felt like not continuing with it , but then decided I needed to give it my best shot. Would be interested in your thoughts

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Dream21
Dream21
in reply to Devoid

I did try Methotrexate with Prednisone. I had no benefit from adding the Methrotrexate. Maybe your doctor can give you an idea on how long to wait for benefit before you taper. Good luck.

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Devoid
Devoid
in reply to Dream21

His plan is to start reducing the steroids and methotrexate once the tocilizumab is commenced, interestingly he said when he’d seen the ct pet scan results I would have been on tocilizumab if I was in the states but here Nice guideline says methotrexate needs to be tried first. I have been so unwell and my mobility is a real issue, so I’m really pinning everything on this, your experience and others have been a real comfort whilst I’m waiting so thanks, will let you know how I get on

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piglette
piglette
in reply to Devoid

Insurance pays for tocilizumab in the US, the government / taxpayer pays in UK. I think that is the difference!!

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Hidden
Hidden
in reply to piglette

I think the US taxpayers paid for my tocilizumab to treat PMR. My insurance company declined the request. The insurance company only did the administrative portion

My employer was a large university hospital and they provided health insurance to their employees at no cost. The university hospital was "self insured" so it wasn't unusual for the hospital to override the insurance company's decision if the care was provided at the university hospital.

I go to two different hospitals for medical care. The second one is for military veterans. The university hospital and veterans hospital are closely affiliated. In fact, the doctors are the same at both hospitals. The hospital for military veterans is more like "socialized medicine" and is government managed and funded. The care I receive there is at no cost to me except for a small fee for medications.

I'm not sure who paid for my tocilizumab but it wasn't me. I got it from the veterans hospital but didn't even have to pay the small fee.

This is probably confusing but the system in the US is very complex. A blend of government healthcare, private healthcare, government insurance and private insurance.

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Hidden
HiddenAmbassador
in reply to Hidden

Dadcue, it's not the mantra of the forum, the guidelines that are based on the first stage research for gca only, only allow it to be prescribed for 12months to reduce pred. It is not used for pmr. At all as far as I can see.... Obviously some gca patients have both pmr and gca so it may eventually IF found successful enough to be licenced for pmr. The problem is that the overall results are around 50/50 in terms of it being a treatment/"cure". When you compared the pennies pred cost and the thousands other drugs like actemra can cost the NHS, then as someone with pmr (and several other health issues) spending thousands treating somethi g that does make a massively significant difference to mobility, mental state and psychogical welfare then I would prefer the drugs go to someone with gca who quality of life may be more improved.

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Hidden
Hidden
in reply to Hidden

I'm not sure I understand what you are saying. This isn't a rebuttal so it is just a response to what I think you said.

Perhaps "mantra of the forum" is the wrong phrase. Very few people actually commented. It was a few people with the "loudest" voice who repeated it.

The question posed by valb232 was the following:

"Is anyone taking Actemra or any other drug that is helping their GCA symptoms? Or something for PMR? I would very much like to hear from anyone who is or was, and the effect, side effects, etc."

In my opinion, the question wasn't even addressed to anyone who hasn't taken a biologic since the title of the post was "Biologics". People sometime value first hand experience over research.

I have somewhat strong opinions about prednisone side effects. Safe and manageable isn't the way I would describe them. Prednisone is inexpensive ... that I would agree to.

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Hidden
HiddenAmbassador
in reply to Hidden

You had twice in quotes said it was the mantra of the forum. It's not. It's the UK NICE guidelines. That's all I was responding to. I know your views on pred extremely well.....

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Devoid
Devoid
in reply to Dream21

Was working upto April this year, when this hit me , can’t believe how life has changed, trying to stay positive and think about how it will feel when it’s under control

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Chrisellie

I have been using Actemra since Mid Feb this year and started 40 mg steroid last November. I tapered off steroids from Feb this year to 0 on 27 th September this year. The Tocilizumab /Actemra weekly injections have worked for me so far. No steroids, still on injections until the year is up. I am in Scotland and in the testing program due to GCA PMR and LVV. I hadn’t struggled with steroid reduction when I was started on Tocilizumab .

Some people find the injections work well, others find the infusion is better for them.

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Hidden
HiddenAmbassador

Hi valb232, I hope you manage to glean some info. If you look to the bottom (if on a phone) or at the right side (computer) you will see "Related Posts"..... There will be lots of of threads. And you can just keep looking at related posts for more. Just be aware of when the threads were posted as if they are months or years old then the member may not be fully participating still. I really hope you get some good ideas and info. 🌻

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Hidden
Hidden

valb232: Since you started this thread---tocilizumab worked well for me to treat PMR but I was switched to a TNF biologic for a different problem. That problem was given a higher priority than PMR.

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Hidden
HiddenAmbassador

Have a look at some of these. If you put actemra in the search box there should be information. My best wishes.

healthunlocked.com/pmrgcauk...

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KellyInTexas

Valb232:

I will address your question specifically:

I am currently receiving Rituximab ( high intensity) infusions for a very high Rheumatoid Factor ( 512 with 7 being the highest end of normal range)

I have the following conditions:

Polyarthropathy / bulging discs starting age 26

Arthritis age 35,

Myofacial pain syndrome

APS ( Antiphospholipid Syndrome) - severe/ progressive/ Refractory ***Primary

Lupus- mild

Ehlers Danlos

Sjögren’s syndrome

Chronic inflammatory Demyelinating Polyneuropathy

Seizures ( part of clotting syndrome-)

Immune Thromocytopenia purpura ( resolved)

Lupus Vasculitis (?)

All of these issues pointed to Rituximab being first line choice - as it eliminates the unwanted antibodies. especially with ongoing clotting ( DVT’s and a venous brain clot ) at a rate of about approximately every 8-10 weeks for 2 1/2 years.

My case of APS is considered progressive and Refractory.

I began Rituximab infusions on May 6 2019. The dose was 1000 mg per liter. Initial dosing was two weeks apart then every 4 months. I’m also on high dose Solumedrol 120 mg every 20 days and 5 mg tablets if I run out before I get to GP office for another injection. ( we tried depo- medrol injections are home- self administered at 40mg and it did nothing at all to control migraines which is top symptom.)

It’s been a little unclear as to what’s actually helping most- steroids, Rituximab, or a combo.

Antibody count is marginally down- from mid 20’s to 12, 14’.., my doctor says that’s not an accurate measure for some.

The clotting has not completely resolved- but we have also thinned the blood more. ( no choice- I’m not in a trial so it doesn’t matter. I’m in a life threatening state. We are first doing no harm.)

At first my Rheumatoligist ( together with Hematologist) was going to abandon Rituximab in favor of IVIG. But in the past couple of weeks we have been rethinking that. I am doing a bit worse, even though I continue the solumedrol. Was the Rituximab helping more than we thought? My joints are a little worse as Rituximab has left system.

Likely giving the Rituximab another go, because IVIG is know to cause clotting.

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