Anti TNF

kunaljain

Hello Everyone,
My mother (Age 49) has been detected with Rheumatoid Arthritis and doctors have advised to put her on Anti TNF (Anti-tumor necrosis factor) Medication. I have some questions about the same and would be glad if someone with significant knowledge on this could answer:
1. Once you are on this medication, will this have to be taken lifelong?
2. Does the person become restricted to his/her house and cannot go out due to the risk of catching infection?
3. I have been reading on a number of web pages that the use of this medication makes the patient prone to Cancer/Tuberculosis. Is this true and broadly what % of patients have developed Cancer/Tuberculosis due to Anti-TNF?
4. I have also read that this is a very expensive treatment. What is the approximate annual cost of this?

Would be extremely thankful if some one could advice
Cheers

stickywicket

Hello kunaljain. It's nice to meet you but I'm sorry to hear your mother has R.A.

We are only fellow patients so our knowledge and expertise is very limited but I'll try to answer your questions as best I can.

1. R.A. unfortunately rarely goes away once it has arrived. For some lucky people it might do so for short periods but I wouldn't expect that to happen. Because we have the disease for life we usually have to take the medication for life too though it is unusual for someone to be given anti-tnfs as a first resort. DMARDS usually are tried first.

2. It's true that those of us taking DMARDS or anti-tnfs are at greater risk of catching some infections and also find it harder to overcome them but I don't think I have heard of anyone who has become housebound out of fear of catching such infections. On the contrary, the use of modern medications enables us to keep the disease from attacking and deforming our joints so that we are more able to lead normal lives.

3. We are not doctors or statisticians and can't evaluate the risks of side-effects. What we all have to bear in mine is the balance between the risk of any side-effects with the known problems of the disease itself. Also, statistics don't tell the full story as many people who develop side-effects may have other, long-standing medical problems, in addition to the arthritis, which would put them at greater risk.

4. It is an expensive treatment. I think all anti-tnfs cost upwards of £10,000 per year. I'm guessing your mother is not a UK national and therefore will not get this treatment on the NHS. If she lives outside the UK and is having to pay for her own treatment, I would certainly query why DMARDS have not been suggested first. They are cheaper and often perfectly adequate on their own. I've been OK on them for many years.

It might help if you contacted our Helpline to talk to them about all this. Also, if you look at the top right of the page, in the Publications and Resources section you'll find a lot of useful booklets which you can download.

Your mother is lucky to have such a kind, helpful daughter. I wish you both well.

kunaljain

Hi Stickywicket. Thank you very much for sparing time to respond on my query. I understand that we are all fellow patients here and patients sometimes are better able to understand the problems and questions than Doctors. Your response does clarify some of the doubts that I have and will contribute significantly in the research that I will now have to do in this issue. Thanks a lot!!

dreamdaisy

Hello, I am on an anti TNF treatment (my third one in fact) and have not once bothered about the risk of side-effects. What really counts is the quality of life now and these drugs can greatly enhance it (if one is lucky). Those who are taking these meds are monitored regularly so at the first sign of trouble things can be dealt with. I had some trouble with my second one, enbrel, and that was picked up thanks to my having my bloods done on a regular basis: I felt OK and had no idea that anything was amiss. I am far stricter now with hand washing and always carry some hand gel with me for when I am out and about. I have had a couple of chest infections but nothing more serious.

If your mother is going straight onto them then she is fortunate, here we have to try the DMARDs (disease modifying anti rheumatic drugs) first, and fail to respond adequately to them, before we are given the chance of the big guns but as public money is being used I suppose that is not surprising. Phil Mickelson (a golfer) has apparently the same auto immune arthritis as me but to look at him, still playing golf, I find it hard to believe. His first treatment was an anti TNF.

I hope all goes well for your mother, doctors deal with the theories but we deal with the reality of living with arthritis. DD