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Joined: Jan 2018
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GemStar Offline OP
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Hi, I have been advised that it is difficult to be prescribed anti TNF drugs and I'm just wondering what your experiences have been in getting the injections. thank you. x

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The routine here in the U.K. is that Anti-TNF can only be prescribed by a consultant rheumatologist. The patient has to have been treated unsuccessfully with at least two NSAIDs. before Anti-TNF can be prescribed.

When the patient is to go on Anti-TNF they have a check of general health including a test for T.B. Funding is then applied for to the patients Local Health Authority. This is usually just routine and the funding is usually granted without any problem.

The Anti-TNF injections are provided by a private heath company. They send a nurse round to see the patient so as to instruct them how to use the injections and what to do if they have any problems. Regular orders for the drug is arranged over the phone and delivered by the private health company in their own transport.

This is all provided and paid for ao free of charge to the patient by the British National Health system. I would be interested to learn how things work out in other countries.

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GemStar Offline OP
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Thanks Frederick, that's really useful. I have had the chest xray and blood tests for TB etc and I have an appointment at the Rheumatology clinic to discuss anti-tnf but I was told you have to jump through hoops to be given the go ahead to start treatment. Wish me luck 🍀 x.

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In the US it seems that most private insurance plans require unsuccessful treatment with NSAIDs. I would prefer to do without the biologics if it means requiring the consumption of NSAIDs as I am of the belief that use of NSAIDs contributes to root cause (gut permeability).

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Originally Posted By GemStar


I was told you have to jump through hoops to be given the go ahead to start treatment.



If your pain is bad enough you will jump through all the hoops you need to to get bit of relief. Expect some side effects but nothing you can't handle. Best of luck with it all.

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Hi there,

In Portugal only a rheumatologist can prescribe Anti-TNF.

No need to have failed attempts of NSAIDs. I had some side effects from anti-inflammatory treatment but my doctor thinks that Anti-TNF are a way better treatment since there's a slight chance of delaying fusion of any kind.

I've been taking SIMPONI (golimumab) for almost 2 years now and I've been somewhat ok.

After the TB tests and being approved for treatment I get the medication for free. I have to get it from the hospital monthly.

Side effects: In two years i only had 2 major colds (seems like lung things have a slower process of healing) and a slight skin fungus. Never had skin problems before.

We have to be checked every 4 months to keep using the ANTI-TNF and it's requested that you stay in shape and all the blood levels like sugar levels and cholesterol stuff under control.

Simponi really made a difference in my life and everyday i'm thankful for not having the pain i used to feel.

I'm HLA-B27 positive.

Best of luck for all of you!


Rock on!
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Interesting to learn how things are done in other countries. I used to get checked out every three months when I was on Anti-TNF but they did seem more relaxed about such things possibly because I had been on it so long.

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Hi GemStar,

When I was diagnosed 12+ years ago in Australia, Remicade was the treatment of choice.

However, the drug could only be prescribed by a rheumatologist after fusion was visible on x-rays. The amount of pain, inflammatory markers, bone changes detectable by MRI etc were not taken into account. The band-aid nature of western medicine at its worse, unfortunately.

In Ireland, biologics are prescribed via a rheumatologist, for which the waiting list is 14-months currently on the public system. It is possible to see a rhuematologist privately: certainly worth it if you feel that biologics are for you.

Best, Ag


HLA B27 +ve. Localised pain in SI joints, lumbar and thoracic spine. No swelling. Eyes OK, peripheral joints OK. NSAID usage from 2005 to 2018, meloxicam.

Least favourite saying: No Pain No Gain.

2005 - Diagnosed after two years of debilitating SI pain, early 20's
2017 - Waitlist for rheumatologist in Ireland=14-months
2018 - Seeking alternatives
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For me, finding a rheumatologist who could and would diagnose and treat me was the challenge...that took 12 years and several rheumies.

Once I found one, then it was easy. He said I had to have failed at least 2 or 3 nsaids...I failed 10+....

He's retiring and I need to find another rheumy as I think only a rheumy can prescribe it, but i'm also seeing my dermatologist and gastroenterologist within the next month or two to see if they can prescribe it if I'm between rheumies. I have had mild psoriasis, but on humira, it is completely gone. and my rheumy and gastroenterologist suspect IBD. But who else might be able to prescribe my humira, I will find out after seeing my dermatologist, gastroenterologist, and rheumatologist...I just wish my rheumy wasn't retiring....it took 12 years to get to him after going through a lot of rheumies who wouldn't help me.



sue

Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
chiro
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)

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