Hi, wondering if anyone can help or advice? I’ve been on avonex for 3 months now and have been getting very depressed. It seems to get worse every week. I’ve spoken to an ms nurse who has consulted with another, and they’ve decided I should stay on it for now, until my next appointment, but that’s not til the end of may! How long are you expected to stay on a drug before you can change? I hate feeling like this, it was suggested that I might think about anti-depressants! I don’t want to take medication because of medication, if you know what I mean! Any help or advice will be gratefully received! Jen xx
Depression is a listed side effect of Avonex correct.
Such a thing is not present in those who take Tecfidera.
Sorry if this is of little use in the immediate future. But i thought i would simply share this fact for your future considerations.
I second Paolo’s thought that depression is a listed side effect of Avonex.
Can you get hold of a nurse, MS nurse or general neurology nurse again? You shouldn’t be taking another drug (which has side effects) to counter the side effects of a DMD. Particularly when it’s not necessarily the best treatment available for MS.
If you are finding that Avonex is making you very depressed, then it should be your decision whether to stick with it or not. It is not something that should be decided for you. The job of an MS nurse is to help you make the best decisions for your health, not to make decisions for you.
Paolo of course believes that Tecfidera is the best alternative drug. For many people it is. It is certainly worth considering. Equally, if you’ve ‘failed’ on a first line drug (and unsupportable side effects could be considered a failure if your neurologist backs you up), then you could qualify for Tysabri. Which is definitely a better drug.
Sue
That is a very good point!
Don’t know about DMD’ s I have PPMS and I find all drugs I take have awful side effects so am off most drugs except for my antidepressant tablets which are marvellous I often say they are the best tablets I take each day. You just can’t win can you.
I was diagnosed in 2004 after a couple of mild relapses during the previous year. 6 weeks after diagnosis I woke up one morning and was totally paralysed down the left side of my body. Lost vision in my left eye and had trouble speaking. It took 7 months before I could walk properly again but I would say 2 years to fully recover. About 6 weeks after that attack and having been on steroids I was started on Beta interferon which seemed fine for the first 8 weeks. I was slowly getting better and more importantly felt better in myself. I was being really positive. Then I woke up one morning and felt very low and within 3 days was literally suicidal.
My mum called my ms nurse who told us to go in straight away and my consultant told me to immediate stop using the interferon. (12 years ago there was only the interferon drugs or Copaxone). They wanted me to stay off any drug for a month which I was really worried about given how bad my recent relapse had been. With 48 hrs of stopping the interferon the depression had lifted and I felt so much better within the next 7 days. I couldn’t believe a drug that was supposed to help me made me feel like that.
I started on Copaxone and have never actually had another relapse. However a recent MRI is showing activity and lesions so my consultant now wants me to swap to Tecfidera. The better the drugs get the more side effects they have unfortunately and although rare, it can cause a brain disease (PML) that can leave you far more disabled than MS or cause fatality. They monitor this by testing white blood cell count but personally given my history of reacting with Interferon and knowing how I react with any drug; painkillers and antibiotics make me sick, I am very reluctant to even try Tecfidera.
i would speak to your ms nurse again and ask what your options are as you certainly don’t want the depression getting any worse on top of what you are having to deal with already.
Best of luck.
Hi
I would have thought that you could go on Tysabri as you’ve now ‘failed’ on two first line drugs. Yes, there is a risk of PML, but the medics have now refined the JCV antibody testing so they can give you a much clearer indication of your risk factor. And that’s assuming you are JCV positive.
Equally of course, as you say Tecfidera has a low risk of PML as well, but this is covered by regular blood testing. Low lymphocytes mean you come off the drug.
I’ve had both, and have had side effects from both, but that doesn’t mean you would too. Tysabri gave me elevated liver function tests. Coming off the drug resolved that very quickly. I did have low lymphocytes from the Tecfidera. Actually it took longer for the lymphocytes to recover than the liver took to recover from the Tysabri.
In your position, if it were possible to go on Tysabri, I would investigate that. Before you start, you have a blood test which will not only determine whether you are JCV positive, but will indicate your risk factor. You may well be JCV negative, which means your risk of contracting PML is very very low. And you would have to become JCV positive.
Sue
- .sorry but I feel that I’m wasting my time and health by taking a v on ex .I’ve o my had 3 lots
- So in going to see m s nurse as you are really starting to give me the willies.
Rosie
Avonex doesn’t give everyone depression, it’s just that it is possible. If you keep an eye on your mood, particularly the day or two after you’ve injected, you’ll know whether you are affected.
All drugs have potential side effects. It’s just a case of weighing up the potential benefits against the possible negative effects. You are still better off taking a DMD than not. And in fact, Avonex has a very good safety record. Some people have flu type symptoms the day after they take it (usually countered by taking paracetamol), a few people have become depressed on the drug. Others experience different side effects. One very good thing about Avonex is that side effects go away very quickly once you stop the drug.
And many people have been taking Avonex for years, suffering few relapses and having no adverse side effects from the drug.
A good idea is to start keeping a diary of how you feel, physically and mentally. This way, you can check back to see how you’ve felt on drug days, the days following the drug and the days just before you take it. It’s a good idea whenever you start a new drug. That way, it’s clear that you’ve had adverse effects.
Sue
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- Thanks sue.I just felt that reading about all the different treatments that people are taking then maybe I have chose the wrong one.as for diary bio gen provided one in their support
- Pack.as of now I feel o k.bit of headache p/killers helped.so if that’s all I am a ok
- Rosie…