Hi my MPN family. Today I had my first weekly -Interferon injection after being on Hydroxy for 6 years for my PV.
What, if anything, can I expect to feel or not with this new course of treatment.
I am still awaiting my antibody test results from Hematology. If I am found to have Lupus then I will be nervous of carrying on with Interferon as it has been found that using it on Lupus sufferers can cause heart damage.
Still a waiting game at the moment. Thanks my lovelies xx
Hi Jill: I've been on interferon for 15 months now for ET. I'm not sure if the experience changes much depending on which MPN you're dealing with, but I can tell you about how it's gone for me.
I was started with a very low dose (sorry, don't remember the number, but it was really small) and have increased the amount every couple of months. I'm currently at 66 mcg injhected weekly. I continued on HU (500/day, 7 days) until my last doctor's appt. in June. Now, I take one capsule every other day. If my counts hold stable, we'll keep reducing until I can stop taking it altogether.
Overall, the experience has been completely positive. The injections became a matter of course pretty quickly. I've experienced very little in terms of side effects -- occasional diarrhea in the day or two after injection in the first six months, but it rarely happens now. I have a history of depression, so I watch that closely - although with the way the world is right now, it's hard to know what to blame when I get a case of the blues. But there's been nothing out of the ordinary there to worry me.
Most importantly, the change has been successful in reducing my platelet count. Last round of tests they were below 300 for the first time in years. Other markers to watch have all stayed steady.
The one thing that surprised me was how long it took for me to see and feel the impact from changing medications. I've since read here that interferon can take a long time to reach full efficacy, so it makes sense now. When I asked my doctor about it at the last appt, he said he expects it to take a year. While there were certainly improvements in counts and how I felt from the beginning, I noticed a significant up-tick in impact right around the year mark. Again, I'm not sure if that varies depending on the MPN.
My biggest ongoing physical issue is debilitating fatigue and while that is still a problem, it has gotten much better since starting interferon. The lows are not as severe and don't last as long and the periods of feeling stronger sustain longer. I'm hoping that will continue to improve as time goes on.
So... this is much longer than I expected when I first started writing and may be more than you wanted to know 
It just turned out to be so helpful to lay it all out here and get a clear picture of how this journey has gone. I hope it helps you with your transition.
Good luck on the lupus tests.
Take care,
Kim
That is really happy to seem your positive result. Waiting time is worth.~ Hope those result could be more and more obvious as time.
Thank you Kim. Your reply has given me some reassurance, though I could do without anymore fatigue. I would give the world for a full nights sleep. I am so tired in the morning that my speech is slurry and I cannot get words out for the life of me. This morning every fibre in my body hurts and is tired. I am hoping maybe to much that this new medication will help me? Take care x
Hi Jill -- I know exactly what you mean, and I've was feeling the same way when I started interferon.. I felt so completely depleted. That's gotten better since I changed meds -- not entirely eliminated, but better. I still haver periods of feeling to tired to do anything, but not as bad as before, and not for as long a period of time. And when I do feel better, I feel much better than I did and it lasts longer. I'm still a far way from feeling "well" and being as active as I used to be, but I can do a lot of things more consistently -- like see my grandkids, paint, cook, see friends -- than I was able to do for a long time. I really hope you find some relief with this change. I know it give me a much better outlook on life, thank goodness. Take care of yourself. XX
Hey Jilly. The reaction to PEG is dose-defendant. You may not feel much of anything after taking it. At 45mcg I feel nothing at all from taking it. It is doing a good job controlling my platelets. My WBCs have taken more of a hit than I would prefer, but so far I am OK. RBCs are not coming down as much as the other blood cells. May have to do a phlebotomy soon. 😣 . On the whole my PEG journey is going OK.
Regarding the Lupus (if that is what it is)- I am hoping that what you have encountered is actually Hydroxyurea-induced Lupus erythematosus. (odd thing to hope for). Perhaps coming off the HU will resolve the problem. Hoping and praying that is the case.
All the best my friend.
Thank you my lovely. I did feel good thinking no more putting chemo drugs into my body. I am hoping the joint pain will subside because I was up 7 times during the night, just sitting on the edge of the bed trying to ease the pain. I am feeling really drained with it now. Keeping fingers crossed. I had my bloods taken for haematology last week and 3 of the tests were out of range for the first time ever. It was a community nurse who bough out my Interferon jabs and she is coming to take my blood in 3 weeks. Could get used to this home service. Take care my friend x
Hello Jilly hope you are feeling ok today - like you I changed over from HU (after 13 years!) to Peg a couple of years ago - and abut like with HU, the side effects of Peg do seem to be very individual to each one, some have no effects at all, others do. Tiredness/fatigue tends to be a common one and I remember my consultant saying to me most of her patients find their fatigue falls into a pattern over time, with some feeling the worst of it the day after injection, others 48 hours later - for me it is the 48 hours after, next day I am a it spaced out, but the 48 hours after I am very curl up in a ball tired - so you get to know your pattern and pick a good day of the week to inject where the following days fall in with your pattern as to what you have to get done. As mentioned above, dose does make a big difference on effects to and I imagine you will have been started off on the 45 mpg dose. Let us know how your side effects go and we can all input from there as there are a few effects that can come along on Peg - but hope you are one that finds it doesn't impact much at all. All the best
Wow, reading people’s responses I am wondering why I have been started on such a high dose. I have been given a dose of 180 once a week??? Got to admit this is my first day after injection and I feel floored but I don’t know if it’s from the drug or lack of sleep because of pain. I am optimistic that it will do wonders and I am hoping that I never have to take chemo drugs again, even though I am grateful for the stability it has given me for 6 years. Here’s hoping xx
Oh yes that is a high dose BUT as we always say each patient case is different and there will no doubt be good reason your consultant has done that, interferon tends to be slow acting and builds over months so perhaps there are circumstances when a higher dose is needed for quicker effect so I am sure your team are looking after your own particular situation - just rest well and do so as much as you need - it is good treatment very effective .
Hey Jill , , no experience to offer on this one but just to wish you all the best going forward on Interferon as it's always a tad scary changing meds especially when other influences are in the mix. Hope all goes well my friend. Chris x
Good luck and I hope it works well for you and brings your results down x
Hi Jilly
Everybody seems to have wildly different experiences within the vast range of "what to expect" listed in that confusing leaflet which only seems to talk about taking four times the dose and mostly in conjunction with another drug. I found the MPN leaflet much more comprehensible and helpful.
Anyway, for what it's worth, this is just one experience, which I am only just beginning to get my head round.
I did my first Peg three weeks ago, expecting any or all of the physical symptoms I had been warned I should prepare for. I had upped my Vitamin C to 12 grams a day and was making sure to have loadsa filtered water and was pleased to experience nothing but a mild spattering of symptoms that might or might not have been the Peg and soon disappeared anyway. The first week I totally missed the mind symptoms because it was during the most recent heatwave. I am used to my brain freezing when it gets hot and I just live with it. So four or five days not being able to function didn't come as a surprise.
But the second week was the same. As if my get up and go just got up and left for a few days, taking all my ability to think and concentrate along with it. But I still wasn't cottoning on to what I now think was really happening so just reported increased tiredness and more sleeping at my phone consult last Monday.
What I just thought was an increase of my usual tiredness and weakness was actually confusion, inability to think about anything at all, let alone concentrate on it. Putting it down to tiredness was just an excuse to go back to bed and rest or sleep and not think about it.
Knowing I was going away this week end I decided to delay my Peg till I got back, but the day before yesterday, 5 days after the previous jab I felt physically fine but experienced absolutely no interest in the trip whatsoever. In fact I decided I really didn't want to go. And this is my first campervan rally in two years which I have been looking forward to for months and months. So I simply went back to bed. Couldn't decide whether to cancel or wait and see if I would get my mojo back any time soon.
And I did. Woke up yesterday feeling fresh as a Daisy. Dosy Daisy had disappeared and I couldn't wait to get started on preparations for the trip. Of course I can still only keep going for an hour or so at a time, but being ET, geriatric and arthritic that's just normal. But when I had to go rest, my head was still buzzing with thoughts of the preparations for departure, the long drive and the weekend. And serious gratitude to find I have got me back again. Crazy Daisy the Merry Widow !
Of course I need to report my new take on the situation but I know my platelets are already going down and most people here on Peg seem to find their worst side effects are when the treatment starts and begin to reduce as it takes effect. So today I am super optimistic. When I get back on Tuesday I will have had more time to reflect and be more prepared for my next shot Tuesday night.
I'm already thinking Nyacin. Ginkgo and other stuff from my supplement cupboard. Making the best use I can of my brain while it is actually working.
And thank you so much for your question Jilly. It encouraged me to put my thoughts together.
Warmly Daisy
Hoping you will spend more time as Mojo Daisy.
Since it appears you are open to complimentary health interventions, there are a few i could suggest that might help (based on my own experience with them).
Curcumin works great for arthritis inflammation/pain. Much better than NSAIDs.
N-Acetylcysteine or L-Glutathione are also helpful for inflammation control.
American ginseng is good for a mild energy boost. Do not use the Asian ginseng at is harsher and more likely to have adverse effects.
Qigong (Tai Chi is one form) is very effective for mindfulness, balance, flexibility, and general health. There really is something the the flow of energy (Qi) that you have to experience to understand. Whatever it is, it does help.
Nutritional balance is also of key importance. I found this out when I was tested and found to have Vit D, Vit B/folate, and magnesium deficiencies. I now take supplements for each of these. I would also note that we can ill afford exposure to toxins. My mercury levels were very elevated. Apparently too much tuna. Cut back on the mercury-foods and levels are Ok now.
Fatigue due to iron deficiency from the PV treatment was starting to be a problem. It is part of why I started on Pegasys. Hoping I can get those levels closer to norm once the PEG is controlling the blood cell levels.
Given the complexity of our cases with MPNs and the meds we take I take nothing for granted. I consult with an Integrative/Functional Medicine doc about all of the complimentary health interventions I use. If something is biologically active enough to help you, it can also hurt you and interact with things.
I do hope you get off to your campervan rally. It is great fun and beats sitting around inside. Perhaps you can have a bonfire like this one. Nothing like a nice fire on at night when you are camping.
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