Interferon--does ones age make a difference?

[jeanr]

I'm on Hydroxy and would like to try interferon. My hematologist has told me that she will apply to see if I can go on it (I'm in Canada) however she warned me that as I'm 74 I might have difficulties. She added that she has an older patient who has started on it and is not doing well. Has anyone started on interferon later in life and how did your body react? Input would be appreciated. Jean/Winnipeg

[charl17]

I am on Pegasys and I am 69. The side effects are tolerable and I now alternate 180 mcg and 90 mcg per week. I had problems last fall from HU. Fortunately, I am in general good health, exercise and have a supportive spouse. I live in a low maintenance senior community. So when I feel wiped out I just go lie down until it passes. My wife feeds me snacks and appetizing meals to keep me eating well in spite of lacking appetite. Everything depends on your general health, your support systems and your unpredictable tolerance for Pegasys.

How did my body react? Mostly fatigue and gurgling intestines. HU made me dopey and sleepy. Pegasys sometimes makes it difficult to sleep even when I feel wiped out. Sometimes I have a headache. Sometimes I get sweaty and sometimes I feel chilled.

[jeanr in reply to charl17]

Thank you very much for your reply, it is really helpful. I am pleased for you that the side effects of Pegasys are tolerable. I think you are right it comes down to general health, tolerance which can be unpredictable and support system (glad to hear you have such a great support system). Good wishes to you and your wife. Jean

[francesb]

I took it until very recently, with Hydroxy as well, I’m 71 and started it when 69.. no real side effects except going hot and cold the first day, they say flu like symptoms may occur so I put it down to this. It is a slow acting drug so if you do take it your doc needs to start low at 45 and wait patiently to see what happens, I learned this the hard way when my consultant didn’t know this and kept increasing the dose, finally I found the information myself and told him and it did work once we did it correctly. Good luck.

[JackLina in reply to francesb]

Well that's a familiar scenario. I find that giving correct info to my haema has helped immensely with my condition. He really had no idea at all.

Convinced that lower doses were ineffective and I should start at (wait for it) 180 mcg, I almost screamed in fear and told him about correct dosage for my age and condition.

It took for me to contact Roche directly to prove to him that the drug is available in 90 mcg syringes and that lower dosage is the norm. They are very helpful if anyone else requires this. ATB. P

[jeanr in reply to francesb]

Thank you for your reply. Your experience sounds encouraging. I was interested in that you took both at the same time - Hydroxy and Interferon, and thanks for the point about starting with a low dose. Good to hear from you, I hope you are doing well. Jean/Winnieg

[shellsween]

I started at 59 I didn’t enjoy the side effects at first, I am now on Pegasus and doing well. From what I have read everyone is different some handle it Very well and others are unable to take it same with hydroxyl is. I hope they approve you and that works well for you also

[jeanr in reply to shellsween]

Thank you for your reply. Pegasys does sound like the easier option, although I don't think its offered here. I'm glad to hear you are doing well. Jean/Winnipeg

[swimswam]

I’m 63 and on Interferon, ( I’m in the UK and my consultant was told by my health trust that NICE didn’ t approve Pegasys for ET and wouldn’t pay ). I was informed that II wouldn’t tolerate Interferon well at my age, and should opt for Hydroxy. Decided to still try it as I swim open water which involves being outside in the sun regularly in the summer. Been on it 5 months,, quite bad achy side effects to start with but fortunately only dry mouth and headaches the next day now. Platlets fell within a month from 660 to 409. Downside is I have to inject 3 times a week!

[JackLina in reply to swimswam]

Have you tried drinking 3 pints of water a day (headaches usually cured with that) and try as much as possible to follow a low inflammatory diet for the aches and pains. I have found that both of these have an immediate, beneficial effect on my side effects. Granted, the aches and pains are usually there but more bearable with that diet. Maybe that's because i can't quite manage a whole day without an 'injection' of carbohydrate (chunk of bred with my homemade vegetable soup).

All the best. P

[jeanr in reply to swimswam]

Hi swimswam-Thank you for your reply. I was impressed by your decision to go with Interferon despite the advice that you received---I'm glad it worked out for you. I was interested too in your point about the sun. Your platelets did well going down in one month. All good wishes for summer and swimming. Jean.Winnipeg

[jon1972 in reply to swimswam]

swimswam, are you on regular interferon instead of Pegasys? I assume so since you say you are taking it 3 times a week. I didn't know anyone still prescribed that stuff anymore.

[swimswam in reply to jon1972]

Regular Interferon Alpha, I have tried for Pegasys, Sherwood Forest Hospital refuse to let my Haemo prescribe Pegasys even though he wanted to prescribe it, I was informed that it wasn’t approved by NICE for ET, and is too expensive. The only way I was allowed Interferon is to have the old fashioned stuff ! Feel very aggrieved as obviously other hospital trust prescribe it for ET.

[hall2]

This is very interesting reading. I’m due to start this week and I hope I won’t get many side effects! My haemo said 90% of people tolerate it pretty well!

[JackLina]

Hi Jean. Yes, I have and I am 100% better on it than hydroxy, which caused me to experience unbearable, debilitating side-effects. I am 67 now and started this last June. My haema told me if I couldn't cope with hydroxy, I would be worse on Pegasys (pegylated interferon) but he was incorrect.

I have had every side effect going (no hair loss however) but nothing that I couldn't cope with and now, almost one year on, my body is accepting the drug without as many side-effects.

My platelets were reduced within 3 weeks to within normal range and for a few months now they have been well within normal range.

The fact of my age, my previous (one minor) stroke and many (apparent) TIAs, he allowed me to try it. Thank goodness I did. On Wednesday this week my platelets were 230. Yes, there are a number of effects that I am far from happy about but the lack of threat of stroke etc. really appeals.

i am a person who has big problems with any drug attempting to reduce cholesterol or high blood pressure. You name it, I've been prescribed it with the same outcomes. I end up on my back (literally) and unable to function due to side effects. I now take clopidogrel (which I have for years now) and inject 45mcg x Pegasys every 10 days.

We are all different so I would be loathe to accept a comparison with another patient as a suggestion you should think twice before giving it a try. All the best. P.

[jeanr]

Thank you JackLinda for the encouraging post. I am on hydroxy (for about 5 years) but my platelets are suddenly rising and I've had to increase the dosage so far with no decrease in platelet numbers. I think I'm going to ask if I can try interferon Hopefully my request will be approved. I do appreciate people responding with their experiences. I was impressed by your continuing on despite side effects> I'm glad to hear that your platelets are low now and you are coping and hopefully the worst is behind you. All good wishes, Jean/Winnipeg

[tracey13]

I know when my husband asked for jakafi it had to go to a board of senior staff to see if he qualified to go on it. We are in England!

[MoNut]

I was on interferon everyday from 1991 until 1999 as my platelets settled down and I managed on aspirin alone. I had a break then until 2006 but was told interferon was too expensive (I am in England) so I was put on Hydroxy. I didn’t have any bad effects from this except last year it was changed to Anagrelide, which was a mistake.

[jeanr in reply to MoNut]

I was interested in your reply MoNut-- when you first were on interferon from 1991-1999 was that in the UK? Are you still on Anagrelide after Hydroxy? Thank you for your reply. Jean/winnipeg