Has anyone else been denied biologic therapy for the ... - NRAS

NRAS
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Has anyone else been denied biologic therapy for the same reason?

Embriony3
Embriony3

I’ve been diagnosed with sero positive RA since the year 2000 and I’ve just seen my hopes of finally getting biologic treatment dashed for the second time, at the very last minute. I’ve been told I get so many skin infections, they’d rather I took my MTX again (it stopped being effective a year ago). I have to carry on like this unless or until another flare up happens. I was SO close to getting the script, when I happened to mention a spot on my leg that looked infected. My big mistake! Apparently if I get frequent infections with methotrexate then I’d fare even worse with the biologic drugs. I’m not sure. I reckon money comes into this and methotrexate is cheaper 😡. All this last year’s painful flare up has resulted in is more painkillers which I now have the hard job of quitting, at least to a level where I was before this episode began. I’m gutted. I really thought my RA would soon be a thing of the past. The previous time I almost got Etanercept, but I had an operation on my right wrist coming up, which if successful would deal with most of the pain (which it did).

Seems like I’d stand more chance of getting Etanercept if I had Alzheimer’s like my mother, as they are currently trialling the drug. The snag there is that Etanercept doesn’t cross the blood brain barrier so it needs giving by lumbar puncture.

21 Replies
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Embriony, I had to really persist to get my biologic. Of course methotrexate is cheaper, but I had such bad reactions to it my quality of life was worse than the rheumatoid. Lefleunomide was even worse. Omg it was like I was poisoned. Fortunately my rheumy gave me the biologic no problem. I so hope you get yours. Please don’t give up .

Embriony3
Embriony3
in reply to Stars27

Thank you, I feel money is the biggest drawback, even if it is safer when it comes to skin infections! When methotrexate first lost it’s effect, I was put on lefluenomide and I agree with you. It was handy that my main painkiller at the time was dihydrocodeine, as the diarrhoea caused by the lefluenomide was nicely balanced against the probable constipating effects dhc would have had. It was not a nice drug; when it caused even more skin infections I was put back on MTX, but the injectable preparation which was better.

Downtime
Downtime
in reply to Embriony3

Embriony Ive been on Humira for 6 months, I took Mxt alone for 4 years and still take it with the biologic. I don’t know how serious your skin infections are. Are they fungal? I have had a couple of fungal skin infections since taking it, but I also get skin cancers, basal cell and squamous. Ive had these before I had RA so I’m prone the them anyway.

The Rheumy dept had a lot of discussion about this before I started the Humira and together we decided that the benefits were worth the risks.

I think sometimes they can be too cautious but I don’t know how bad your infections are. The cost always comes into it I suppose but it shouldn’t. Humira is actually due to become much cheaper now as their patent is up and most hospitals will be using a biosimilar from December.

I hope you feel a bit better soon and that you can maybe get them to reconsider to see how you go at least. Maybe the infections won’t be any worse. x

I'm sorry you have been disappointed about being prescribed a biologic drug, but don't get too stressed thinking it's only a cash problem. If your Rheumy really thought you would benefit from a biologic drug he would apply for funding....& it is up to the AHA team who assess the application for approval. . As he has, for now, decided it's not appropriate he is probably just thinking of the problems it could cause.

If you look back on this site at skin reactions to biologic drugs & see how nasty they can be,,,,,sometimes being really painful & taking a very long time to clear up........maybe he is just being cautious?

Have you asked your Rheumy, if you maybe go without getting any skin infections for say six months ......will he reconsider prescribing you the Etanercept? Nothing is forever& that may be a possibility.

I am waiting for biologics again,but at the moment i have a iffy TB jab come back and until i have seen the respiratory team i won't get it. I was given a biologic once before but guess what,yep i got a chest infection and i was whipped off it pretty quickly. If you get a infection it makes it more difficult to recover from on these drugs.xx

Hi Embriony

I really am sorry you are going through this at the moment.

Just keep on asking for it don't give up. Before I was given mine I recorded a daily diary to show how bad it was. I used a colour scheme to show the diiculties I was experiencing. After having treatment I still do so now to show improvement.

I found it extremely difficult to make them understand but this worked for me. I also have skin problems but so far all good.

Don't lose heart. We are all here to support and encourage you.

Take care xxx

Biologics do suppress your immune system more effectively than methotrexate, so that there is an extra risk that you would have a really severe skin infection that your body would not have the immune response to fight off. It's always a balance between the good effects and the bad ones with anything that works!

Biologics can seriously suppress your immune system. I was on Humira but its been suspended because I have had 2 kidney infections, parotid salivary gland infection and tonsillitis on and off since July. My tonsils are coming out tomorrow. I've been at the point of wondering which is worse, the disease or the "cure".

Hello

Who told you Etanercept needs to be given by lumbar puncture? Do you mean for RA treatment?

I inject Etanercept once per week.

However it’s not working anymore after 15 years... so need to have a newer class of biologic.

AgedCrone
AgedCrone
in reply to JGBH

I think Embriony3 meant Etanercept is being given via Lumbar puncture in the trials for Alzheimers...not for regular RA treatment?

JGBH
JGBH
in reply to AgedCrone

That’s interesting. I thought so once I posted my reply. It makes sense.

AgedCrone
AgedCrone
in reply to JGBH

One little comma made all the difference!

Maggsie
Maggsie
in reply to JGBH

Hi, interesting that Enbrel has become ineffective after 15 years. I'm in exactly the same position. Have you spoken to your rheumy regarding another biologic?

JGBH
JGBH
in reply to Maggsie

Yes my rheumatologist will start me on Abatercept, but there’s a 3 months wait. Am in a great deal of pain, can’t function at all.

Not sure how this Abatercept will work, it’s different from the anti-alpha necrosis factor like Etanercept. Nervous but need help.

Hi there I’ve been on abatacept for 3years now and it’s really worked for me, I still do metaject at 15mls as well, hope you find it works for you too.

I'm on biological but if there's a hint of any infections before next round then won't give it because as been said as immune system suppressed it can't fight any infections you may have. It's not always about money but protecting your health xx

I have asked for biologics many times and have always been refused on the grounds that I have more OA than RA. There is also a thought that I may have PsA. The pain I get is horrendous and sometimes I just don't know how to carry on like it. I have been on mtx for nearly six years and to be honest, I don't feel that it does much good. I am also on tramadol, paracetamol, morphine patches and oramorph and I am still in bad pain. I just don't feel that it is fair that they won't even give me a chance to try a biologic to see if it works for me. I just don't know what to do about it anymore.

I hope you have some luck Embriony and I am sorry I don't have any advice to give you.

That's hard for you. But infections on biologics aren't to be taken lightly, and they can open you up to other skin problems like lymphomas.

Presumably you've been tried on the standard triple therapy of MTX, hydroxy & sulpha? That worked well for me for many years.

Otherwise can you not ask to discuss again with rheumy to see if there are other ways to manage the risk? A lower starting dose perhaps, promising to take massive care & take your temperature every day - I don't kno but perhaps there's something that would change his/her mind.

Might be worth doing a bit of research....I am on abatacept precisely because I have a long history of infections, and this biologic is supposed to be the least problematic for me.

If you go to the NRAS site, there is information on all the biologics. It's easier to argue your case if you know your subject.

Good luck!

Hi Embriony3,

I have recently started Etanercept (Benepali) and have been told not to take it if I develop an infection/virus until it clears up. This is because you're more prone to them due to the medicine and can have an adverse reaction and be dangerous. It's not a cost thing, your Rheumatologist is just being sensible. I know how frustrated you must feel with all this, the pain is debilitating. I too had terrible reactions to Methotrexate and Leflunomide and after all the tests, qualified for Etanercept. When they applied for funding I was told it could take up to 6 weeks but it took FOUR MONTHS!! I was unmedicated for 6 months in total because I had stopped taking the Leflunomide 2 months prior to the application for funding so believe me, I know the pain. I can only wish you well and hope you get some respite soon.

Hi and many thanks for all the excellent stories and advice. Every reply has really helped me see that the rheumy actually has my best interests at heart. The skin infections have cleared up, but I shudder at the thought of unwittingly insisting on something that could possibly turn into cancer. The infection I had twice was MRSA - staph aureus that positively thrived on fluclox! Yes I’ve tried sulphasalazine/hydroxychlorequine/MTX but the hydroxychlorequine caused a horrid itching every time I had a shower so I stopped it. And yes, sorry if I phrased it badly, but I did mean Etanercept is being trialled for Alzheimer’s, but as it doesn’t cross the Blood Brain Barrier it has to be given by lumbar puncture.

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