Anti TNF: I have just qualified for Anti TNF treatment... - NRAS

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Anti TNF

medieval-ali
medieval-ali
30 Replies

I have just qualified for Anti TNF treatment, I am really apprehensive about starting this treatment as I do not know of anybody on it. I have read loads on it but never spoken to anyone on it!

Is there anybody on this forum who has this treatment who can tell me how they are responding and how it has changed their lives.

Thank you

Ali

30 Replies
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farm123

Which Anti-TNF have you been prescribed as there are a number of different ones. For many people Anti-TNF changes their lives for the better. As with the DMARD's it can take time for them to work and to find the right one for you. Farm

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medieval-ali

As I only passed this morning, I am to take a couple of days just do do a little more checking as i'm a bit unsure, then I have to choose which one (absolutely mindboggling) and give the RA nurse a ring. I am currently on Leflunomide which I will stay on.

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farm123

It is hard when you are given a choice but at the end of the day there is no easy way to decide which drug will work the best for you. I have had a few over the years as have many on this forum. Don't be put off by 'self injecting' as there will be training given. Farm

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medieval-ali

Has the Anti TNF worked for you, would you recommend this type of treatment?

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farm123

I don't think mine is a good example but I would not have been able to manage without either the Anti-TNF's or biologics as my body will only tolerate 200mg hydroxychloroquine out of the DMARDs. We don't know what the future will hold and I started at 19 and have therefore been through a range of drugs over the last 28 years. Mine is sero-negative inflammatory arthritis and I cannot tolerate methotrexate. It has been the last 3 years which has been the worst medication wise but it looks as if finally things are beginning to settle (hope I have not spoken too soon).

I had Gold injections for around 7 years between my two sets of kids. Enbrel for 7 years until either my body got used to it or the disease went up a few gears. Then Humira for 9 months but it could not control me enough. Then on to the biologic Rituximab for 1 cycle followed by Tociluizumab for 5 months and the last 14 months on Abatacept plus 200mg hydroxychloroquine.

I would definitely encourage you to try as in time this disease can attack joints and once any damage is done it is not reversible. If one drug does not suit you the next one might.

Farm

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medieval-ali

Thank you for your comments, I to over 15 years have gone through all the normal drugs, hydroxychloroquine, methotrexate ect.., none of which I could tolerate, it is just finding the right balance, Leflunomide did it for me for 10 years then the last 3 I have been having Cortisone injections alongside. It's just not enough anymore so hopefully onto a drug that will help!

I need to stop being an Ostrich and get my head out of the sand and try this treatment!

I hope your treatment is finally working and you will get some long term relief.

Alison

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Barrister

I started Humira in October last year and it has made an amazing difference to my symptoms. It's natural to be apprehensive but sometimes you just have to bite the bullet and get on with it. For the first couple of injections I got terrific headaches and neck pain but since then it has been fine and it started working for me within the first 2-3 injections. Clemmie

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medieval-ali

Thank you for you really positive response, it really has helped to hear from people with real experiences with the drug. I hope it continues for you.

Alison

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cathie

anti-tnf is a new body of meds which have transformed many peoples lives. try not to worry, read the NRAS leaflets. Some are given by infusion, others by injection. I've had both. The first lot, infusions of infliximab + methotrexate worked for almost ten years for me. I still had some RA symptoms but nothing like before. There is some concern about the fact that they're immunosuppressant and this poses problems for some people. I found that I didn't suffer more from infections than before, but I used to have the flu jab and tried as much as possible (I was a teacher) to keep away from people dripping with colds etc. One of the best things is that the medics keep a very close eye on you especially if you're having infusions. They found that methotrexate was having a bad effect on my liver so I had to come off both, and its taking too long to find a biologic that will work for me now.

But I would encourage you to embrace this opportunity which should give you a lot of relief from RA symptoms. I wish I'd spent more effort on my general fitness when I was in remission, but have been upping the physio and exercises recently which has to help. I hope you do well!

Cathie

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medieval-ali
medieval-ali
in reply to cathie

Hi Cathie

Thank you for your comments they are very helpful, The one thing I kept finding with the info out there is that RA suffers on Anti TNF could be at high risk of infection. The information is so negative, which is why I signed up and decided to ask for real peoples opinions!

I too was a teacher of in a Primary School but came away from the little germ breeders!

My husband has a road bike and is classed as a MAMIL (middle aged man in lycra) He encouraged me to give road bikes a try and now I have had a new lease of life with this form of activity, give it a try if you can, last year I did a 54 mile ride for Charity around the New Forest, the recipients were NRAS . I started off last year, in January in my front room on a road bike indoor trainer. couldn't do much to start with but the persistence soon paid off! I think it is the best low impact exercise and a form of natural anti-depressant, now my family do it with me! (you do need very padded cycle shorts though).

I hope that the RA medics can help you to find the right course of treatment to get you back on form again. Keep up the good work with the Physo and your exercise, exercise really is the key to keeping mobile.

Good luck

Alison

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cathie
cathie
in reply to medieval-ali

You're right about the exercise. I had a catastrophic experience with a rheumy (have now changed drs) and have been very immobile. But my wonderful physio recommended a floor pedaller and I am up to 120 pedals from barely being able to do it. So I'm quite proud, but know I will have to start from a long way back when I have my knees replaced.

On the infections, try not to worry. I've found that if you take reasonable precautions a lot can be avoided. I try to tell friends not to visit if they're pouring with cold, but grandson and daughter are more difficult to keep at bay! It sounds as though you're on the right track. Just from my experience, I was in what they called 'remission' for a long time. An inexperienced rheumatologist thought that meant I could come off all meds. Dont let them do this to you except very slowly and cautiously. I fought it but should have asked for a second opinion which is easy enough to get usually.

All the best, C

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medieval-ali
medieval-ali
in reply to cathie

Well done you, you should be proud, it is so painful to do some days, gently does it.

I did a little every day and got a bit obsessed lol, as this did not effect my joints at all.

Ditto on the visitors with colds, It is very annoying when sometimes people don't quite believe you when you say sorry I can't come if you're ill or if someone tries to come to you with colds ect., I've had a few battles with some rellies in the past over this, I caught Swine Flu this way! They just don't get how serious this can be. Especially when the white blood cells are down. I have been on Leflunomide now for 10 years and along with Cortisone injections have managed very well, until recently!

Thank you for the insight into not coming off of the drugs, my nurse has already said if it becomes manageable they will reduce the Leflunomide down to 10mg but that could be 6 months away, I will certainly remember your comments! You tend to believe the 'experts'!

I wish you every success with your treatment, by the sounds of it you are a fighter and you will achieve your fitness back.

Good luck

Alison

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allanah

Have a chat with the Nras helpline? They can give you details and have lots of in depth reports on the website on biologics, but what ever one go for it, we r lucky having these drugs available to us, good luck x

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juliecooper74

Hi,

here's another positive reply. I've been on Enbrel for 6 years now and I can honestly say it's changed my life. I'm on methotrexate too, and apart from v painful wrists, my RA has been in remission. For me, the only negative is plenty of minor infections. The usual coughs/colds take ages to clear up, and as a classical singer it's a bit of a nightmare, but nothing compared to the pain I was in before with my RA.

I self-inject, but it's absolutely fine. I hop into a lovely hot bath afterwards and almost look forward to it!

I send you lots of virtual sympathy and very best wishes through the internet.

RA can be such a lonely business, but anti-tnf drugs, if they work for you, are a huge blessing. Grab them with both hands and be grateful for the wonder of the nhs and the fact we don't have to pay thousands of pounds for them!!!!

All the best

Julie

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medieval-ali

Thank you Julie, It is a huge relief to be getting lots of positive feedback. Your right about the lonely business of RA, whilst my immediate family sort of understand how painful it is, people just don't realise, and when they say are you ok today, they're not really wanting the truthful response and people would soon bore of us if we really did tell them how we feel! Only another RA sufferer would understand!

Long may your remission last and you continue to Sing, wish I could hold a tune lol!

Good tip about the bath I will give that ago, When my first session starts, as with the help and advise from all these lovely people I think I have made up my mind.

Alison.

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Scottishlad

Hi

Been on Cimzia for 2 years now. Only thing I have noticed is that I need to be a bit more careful if I get a cut or graze, they seem to take a little longer to heal and often look inflamed (could just be an age thing :-), we take longer to heal as we get older ). A plaster and a bit of Germolene usually sorts things out, or I use glycerine and magnesium sulphate paste if there is something deeper that needs to be drawn out.

What ever you decide, I hope the anti-tnf works for you as well as Cimzia has for me.

Cecil

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medieval-ali

Thank you Cecil, It's been lovely go get positive feedback and advise.

Look after yourself.

Alison

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Kikideelili

Hi Ali

If you have been lucky enough to get the go ahead for anti tnfs go for it! Some people are desperate and they either don't qualify or their commissioners won't pay! I was on anti tnfs before Biologics and they stopped me from having those all over flares where you are so dependant. They are live changing. I even managed to go back to work for a while. I know it's scarey starting new drugs, I was very anxious before I started on Rituximab, but they are so good for so many. I think it's unfair of your rheumy to get you to choose? But if you work and you don't have a supportive boss it may be worth going to injections rather than infusions which mean taking time off work. Although bear in mind the equality act probably states that your employer has to make reasonable adjustments to your working pattern to accommodate hospital visits? Cab will know. Are you in the uk?

Best of luck

KiKi

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medieval-ali

Hi Kiki

Thank you for your comments, I have made up my mind to go ahead and give it ago.

I am very fortunate that I don't need to work anymore and have a very supportive husband and family,

I live in Northampton UK, I love to walk and cycle and having my hobbies stopped and hindered by such a disease if very frustrating at times. I believe the body is a bit like a 4x4 use it or loose it, so I do try to get on with it regardless, sometimes exercise helps other times I just want to hide under to duvet lol.

As for choosing which drug, I never did Cell research at uni or school, so having to decide which drug is coming down to how many times I have to do it, So Golimumab is going to be the first one, as you only have that once a month!

I hope your flare ups are now minimal and you are well.

Alison

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IainM

Hi Ali, I am now on my third Anti TNF/Biologic, I have been on Enbril, which worked wonders for me but I had an alergic reaction to it so had to come off, I was on Cimzia which done nothing and now I'm on Tocilizumab injections, currently talking with my rheumy team to go on the tocilizumab infusions as I feel that it may work better for me, because with the infusion your dose is based on weight, and so because of my weight I will get more of the drug with infusion, rather than injection which is a measured dose. I too was asked to choose which one I wanted third time round, but I discussed it with my rheumy nurse, which I'm sure you will be able to do, also I must point out a few things, yes it is an Immune suppressant, but this doesn't mean you have no immune system, far from it, our immune systems are over active, fact, these drugs calm it down, not kill it, so we still have a healthy immune system working away, yes there are side effects, but by and large most people get on fine. In fact since being on Biologic drugs I very rarely get a cold or such and if I do it's mostly gone the next day, and I'm sure this is the same with a lot of people, and the same as with Dmards you are closely monitored and any infections you are taken off the drug straight away, and put on antibiotics, I have been given them as a precaution also with any hint of possible infection. So what I'm saying is don't be too worried as the vast majority get on with absolutely no problems :), hope you are well and you choose the right one for you first time :)

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medieval-ali
medieval-ali
in reply to IainM

Thank you Iain,

This is the first time I have used this site and I can honestly say, why the heck have I not used it before.

It is reassuring to hear that infections are not as problematic as the gumph on the drugs suggest!

I know when researching this form of drug you only really get the negative. The last couple of days on here with real people has been fab.

Thank you

Alison

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Beverley-NRAS

Hi medieval-ali,

Understandable to be apprehensive. It can be a bit much to take in, especially as there is so much information and it is difficult to whittle it down to a manageable size. Please do give the helpline a call and we can discuss the various options with you:

0800 298 7650 Monday - Friday 9.30am - 4.30pm

regards

Beverley (NRAS Helpline)

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dickfend

Hi Ali I have been on Infliximab infusions (every 6 weeks) and Methotrexate now for the last 10 Years and I can say that it is brilliant for me! It allow me to do things that I would not be able to do without it. I still get flare-ups and bad days, but on the whole absolutely brilliant! However, everyone one is different and it may take a time to find the best one for you, so please be patient, but if you have this option, go for it. It is not everyone that gets this opportunity because of the tremendous cost to the NHS. I really do wish you well and hope you get the best for you. Regards Brian

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medieval-ali

Thank you Brian, I will ring my Rheumy nurse tomorrow and let her know that I have been talking to lots of people on here and I am positive now that I would like to move forward with the treatment.

It has been lovely to get so much support from people with the same condition as me! I should of found this site earlier.

I am so pleased it has worked for you and plenty of others I feel so much better today about it than I did yesterday.

Thanks again

Alison

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dickfend

Hi again I think you are doing the right thing an I'm sure you won't regret. I was equally apprehensive before I started, but am now glad I made this decision. Wishing you well and pain free. Brian

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medieval-ali

Thank you Brian, your comments are very reassuring.

Alison

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magglen

I have been on Enbrel, an anti TNF, for several years and have been very well. There have been no adverse side effects that I have been aware of. i am back on my feet, walking several miles every day. I do have some pain in the joints still but this is due to the damage the RA did before I started Enbrel. I hope it works as well for you. Go for it! xx

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medieval-ali

Thank you for your comments, I am going to ring the RA nurse today for the go ahead! I have had lots of positive comments.

Alison

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magglen

I wonder if anyone has heard of something called First Defence which is obtainable across the counter at Boots. It is a nasal spray and is said to line the inside of the nose to prevent a virus being absorbed and taking hold. The suggestion is to take it immediately one has the first symptom of a cold but can also be taken if one is in a place where there is likely to be a virus about eg a plane, theatre. other closely populated area. I would be interested to hear from anyone who has found it affective. I have some by ready.

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medieval-ali

Hi

Yes I have heard of First Defense but never used it, I think I will give it a go Feb as I am going on a plane, last time I flew I caught a nasty cold which lasted for months. Thank you for the reminder!

Alison

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