So I've been on interferon for a few months for ET. And whilst the physical side effects are unpleasant they are improving. The mental/emotional ones are really starting to get hard. I am painfully aware that I need to give the whole thing time to settle and work. So quitting (although is an option) doesn't seem like the logical descision right now.
Does anyone have any experience of 5htp? I know it's a precursor to seretonin production. But are there any side effects/pros/cons/things to consider thqt people have found?
Thanks!
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Rochyne
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I have been on interferon for about 8 years so I will comment on your first question.
It is good you are coping with the physical effects. They can be challenging as I still experience.
The emotional reaction (for me depression and low mood swings) can be harder to cope with too. I found I had to have a system to identify what level they were. Mild to Kill Bill. I had to have a strategy to cope. When it is mild I accept I will do less and try to go on a walk. When it is at its worst I only realise it because I am so impatient and intolerant. I tried to explain it to those around me but that didn't work and I would cause such a lot of friction. So again I have various distractions like visiting friends for short periods, catching up on shopping etc. The real problem for me is to be aware of when it is happening. And then there is the fatigue. When the two come together I go to bed for a while, sometimes hours.
But! I tell myself I am so lucky to be on this drug. I will accept side effects. I hope that the claims for interferon are true and that it stops the bone marrow getting fibrous and so halts the progression. That end goal keeps me accepting of the reaction I have. I discuss it at every visit but say I accept it and don't want to change it or to add a combination drug.
Finally hope. I found the physical and emotional side effects to be less in intensity and frequency depending on the dose and how often I took it. over the years they seem to be reduced. So I hope you will find this too and it gives you the strength and purpose to continue - if that is what you want to do.
Thankyou for your reply. This is reassuring to hear! That spiralling feeling when I'm low is horrible. And it just feels a bit like it's a question of willpower if I'm going to cave or not. I maybe need to discover my own strategy. Not sure. Right now the cons outweigh the pros. But I will stick it for a while longer.
Hi Rochyne - I can't comment on 5htp but am sorry to hear that interferon is giving you problems. Are you on normal interferon or the pegylated type, such as Pegasys? I have been on Pegasys for 4 months now with great results on my platelet count and no significant side effects - my haem has many people doing well on it and says side effects are much less than on normal interferon. Best of luck, Andy
I'm taking roferon. Which is the normal one I think. Thanks though, a few people have mentioned peg interferon so I can ask about it next time I'm at the hospital!
Definitely worth trying - my understanding (purely as a layman!) is that Pegasys is essentially a slow-release form of interferon so your body never gets the big hit that the standard form of it gives you, hence less side effects. I guess Pegasys may be more costly but don't let them use that as a reason not to let you try it if Roferon isn't working out..!
I have no idea about 5htp, but have experienced the low moods with Interferon and ET, my tolerance levels have reduced as well. I have cut out alcohol compleatly for 6 days of the week, which has helped. My wife and I have also seen a health psychiatrist which has also helped, and I agree the side affects and moods are improving with time and support.
I find that when I am having a good day I try and do too much which then makes me feel worse the next day. So I am trying to enjoy the good days and if things don't get done so be it, you are the expert on yourselve, be a little selfish and make time for something you enjoy doing and don't feel guilty about it.
It's hard though isn't it? I hate not being able to do things. I totally agree with the doing too much on a good day knocking onto the following days. But the low mood is a whole other issue. I don't drink, or smoke, my diet is fairly good, I exercise a fair bit. But yesterday for example I was super low. Quite grumpy and teary. But I took my dose on Wednesday night. Usually I'm good (ish) by Friday. I guess I'm looking for some magic cure. Which is wishful thinking!
I have been on Roferon interferon for 18 mths now, dose is 3miu 3times a week. The mood swings and fatigue are the hardest part. Oh and the fact that I hate having to do the injections but I guess I am just a wimp. Yes as suggested ask about the peg-interferon. Yes some of the physical effects have eased over time, like dizzyies and muscle pain but not completely. If you still can't deal with it after 6 months it is certainly time to discuss alternatives, how about HU or Anagralide?
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