As my clinic appointment approaches I am getting more and more undecided about Interferon. I am currently on 500mg Hydroxycarbomide daily and platelets stay in the late 700s to 800s . My haematologist says we need to get them under control and as I have declined an increase in HU is keen to get me to change to Inteferon . From what I have read on here this is something that could potentially take quite a while to see if it’s going to work for me . I am worried about side effects as I have none on HU . I have a really busy year as we are determined to go on as many trips as we can . My husband had had 2 heart attacks and we want to do them whilst we still can . I have had ET for at least 15 years and am wondering whether I am better to stay as I am feeling quite well or risk getting side effects by trying a new treatment to try and lower my platelets. Also the fact that I already have a thyroid issue is putting me off interferon which I’m told can affect the thyroid . I just don’t know what I’m going to do .
Still undecided about Inteferon: As my clinic... - MPN Voice
Still undecided about Inteferon
Noting that we all respond differently, it took me only 8 weeks on 45mcg Pegasys to drop PLT from the 700s to the 400s. You may or may not respond the same.
Suggest that you consider what your treatment goal should be. The emerging consensus is that there is no particular value to have PLT < 450. The risk of thrombosis is not associated with a specific PLT level. There is a risk of hemorrhage when PLT near 1 million. Your treatment target should be individualized to meet your needs.
You are correct that the interferons can affect the thyroid. That does not mean that it will be an issue but it is s risk. It may be that staying on hydroxyurea at the current dose would be a preferable option if you are comfortable with the PLT in the 700s-800s range. Suggest that you consider your risk tolerance in making this decision.
I do not recall whether you are seeing a MPN specialist. If not, then this would be a good time to do so.
Wishing you all the best.
Thank you for your reply. It’s always good to see you aren’t alone in these concerns . I really don’t know what to do and it’s only me that can decide . I need to ask my consultant about an MPN specialist I don’t really know how to go about it seems like I’m questioning her ability. up to now seems as if she’s quite knowledgeable on MPNs .
If your Dr is agreeable, you could ask about starting on a very low dose of IFN while continuing the HU.
Have you ever gotten mutation tests? If so is the level (VAF) changing? One valid reason to take IFN is to try to reduce this level, or at least try to prevent increase. But if it's stable that reduces that reason to switch. IFN does have its particular risks, thyroid is a well known one, while you know you're not having much of them with HU.
I understand your hesitation, feeling well as is tops a lot of other considerations.
I see you had a bad reaction to the flu vax a couple years ago. Has that happened since?
I only know my mutation test showed MPL . I think I have always had the wrong reaction to my diagnosis which was not to let it affect my life and to do this I am in denial . This means I have not been proactive in finding out anything about my condition. I just have my appointment and they have been phone appointments for so long. I just say I will carry on as I am and then forget about it best I can . My husband is high risk for dementia and has had 3 heart attacks so my main focus is on having as many trips as we can while we can . This is why I don’t want to risk new side effects . have recently had pressure to do something different as my platelets are stable but not dropped to the level they want . I also sometimes think about the interferons ability to halt or slow progression of ET but think after 15 years this may be too late for me . I had the flu jab with only minor side effects this year
I relate so well to enjoying when you can. If you can still travel every moment doing so is precious. You can read my prior posts to know where I come from here and why I asked about the flu shot.
The benefit of IFN for MPL is not as well established as for Jak2, but limited info suggests it could have one. And time with a stable MPN does not limit the opportunity to alter it.
But the risk of at least mild discomforts at some point is significant with IFN. As I describe it, it's a med that you know you're taking. Based on posts here for most this is not a big problem, but for some it is.
If I were in your situation, in my opinion, I'd leave things alone and feel well to enjoy life with my husband. I messed up mine.
If you are concerned about your PLT level, you may be qualified for this trial in UK. Bomedemstat is designed to reduce PLT and this study is for those who don't get adequate response to HU. But even here you'd be adding unknown side effects where you currently have none.
genesiscare.com/uk/speciali...
As a sidenote, Whether or not you plan to switch to the interferons, one consideration is that since you plan on traveling a lot, it will be much easier to travel with hydroxyurea than with the interferon which needs refrigeration. I did switch from hydroxyurea to interferon, but that was because after a year and a half I was extremely sick on the hydroxyurea. I started Pegasys at the dose of 0.25 because I was concerned about side effects. I have been fine on it and have done well with few side effects, but it did take me almost 2 years to bring my platelets down. Everyone responds differently, and perhaps for you Pegasys would work quickly.
Thank you , I am ok on current low dose of HU but not at all keen on increasing it . What side effects did you get from peg ?
so sorry not to have gotten back to you sooner. I do not have very many side effects on Pegasys. I feel the most like myself that I have felt in a few years, however, recently I have experienced some muscle and joint pain which is much worse than any I have had previously. Also I will often be very tired for one or two days after my injection. That being said, I am very happy with Pegasys. I am sure that you will make the right decision for you and I’m sending you warm healing wishes..
Thank you. It’s what I’m worried about making the wrong decision. I have a very busy year with 2 cruises booked and 2 family holidays . One with grandchildren and one with my recently widowed sister . We are determined to do all of this whilst we still can. Quality of life is important to me but am I wrong in not starting a new treatment which may be more beneficial to me in case I get side effects and can’t do all this . Or do I carry on as I am at least for the rest of this year . Everyone keeps saying it’s my decision and I’m struggling to make one .
Hunter and EP gave you good answers, I will add that I wouldn’t be concerned about thyroid , that can be monitored and easily treated with thyroxine or NDT, platelets at 700-800 is not a big deal unless you have symptoms or other health issues.
I see your point about not rocking the boat while you have responsibilities that need you to be on your game. Only you can decide on that one. It may be a idea as EP said to consider starting very low on Peg even 22.5mcg and stay on HU and slowly increase Peg and as your platelets fall reduce the HU and increase Peg but very slowly, some do that although some report the two drugs don’t mix so well. Keep an eye on thyroid though.
I doubt 15 years is too late especially if you are stable, also I don’t think sort of being in denial is ideal, it can be easier but maybe not best, it depends on how the individual wants to lead their life.
If you did try Peg, remember if you don’t like it you can come off again, most if any sides will clear in about a week, that was my experience.
HU is convenient but there seems some evidence that Peg etc MAY have some ability to slow progression for SOME people who CAN tolerate it. Ditto with Rux.
I already have a thyroid issue , have had it for over 35 years. Unfortunately I was never well until I took advice from Thyroid UK through the Thyroid site from Health unlocked . Looking back on my blood tests now we have access to our medical records they were always dismissed by gps as being satisfactory although I can see now they weren’t . A great number of thyroid patients have to have their blood tests done privately and adjust their own dose accordingly. It’s a great shame that this is another reason I can’t trust them to monitor any changes in my thyroid if Inteferon did affect it . It makes interesting reading on that site due to lack of training of gps . I
Hi, I have Et going on four years now and take hydroxy. My platelet levels were increasing so my dose went up. I was a bit fed up with hair loss and the need to use sun bloc every day so I asked for a change to pegasys. I have been on this almost six months now, a low dose every two weeks and they are gradually reducing my hydroxy as my platelet levels are coming down. The thought of being on two poisons at the same time worried me somewhat but this has all been supported by the input from an MPN specialist at my request. I can stop the pegasys if I do not like the side effects which for me appear to be low mood but I want to give it a chance so I reckon that after a year we should know where we are at although I am not an expert of course. Best wishes.
That’s something I didn’t realise , I thought it was just a switch . Did you feel the low mood even on the very low starter dose ?
Hi, I have been on the same dose of peg since we started the switch. The low mood thing is hard to measure for anyone but I would say I cope with it quite well as I exercise daily and have a great set of friends, it is certainly not putting me off continuing with the transmission.
Besremi worked very fast for me, within months. It also affected my liver when the dose reached 200/300 mcg. So after time off it, I started and stayed at 100 mcg. I do have side effects that made me pretty miserable over the winter, though some might have been due to the PV itself. Because now, after about 6 months at 100 mcg my HCT and platelets are stabilized in the good zone, I'm down to 50 mcg, twice a month. As of yesterday's injection. Yay! But I do feel like a medical experiment! Anyhow, I'm super glad I'm lowering the dose, though throwing out 9/10 of the provided dose seems criminal, at the price Besremi is. Healthy spring to all!
As my chronic visual migraines changed and decreased, my sleep problems increased, as did bone and muscle pain/cramping (very new), bloating and GERD (admittedly chronic). Some of what I experience is listed as a Besremi side effect, some as a PV effect. I used to write it all down as it comes and goes, but it seemed to make my health issues too large a part of life. Interestingly that I did not get my "2 day after injection exhaustion" effect this month; I'm down to a tiny dose as an experiment, per doctor's approval.
Hi jodary,
Just wanted to give my opinion on what I think you may already have decided on: sounds like you’re feeling fine as you are now and that you want to stay that way and enjoy the next couple of years travelling and not worrying about new medication and side effects! If you are able to not worry after what your doctor said about your platelets, I think you should go with how you clearly feel!
I tried pegasys for 5 months and am now back on anagrelide as I developed hyperthyroidism. Feel better but of course lacking hope of disease reduction. But - better live your life well while you can.
Just my opinion and I wish you luck!
Thank you so much . You are correct in thinking that I have more or less decided to stay as I am for the moment at least . Mainly due to commitments and plans to travel this year . My problem is that my Dr will not be happy for me to do that as she’s pushing me for an increase in HU . I’m aware that I’m on a low dose which I tolerate ok but not sure what an increase would do with regards to side effects . At the back of my mind is also the possibility that Inteferon may halt progression of disease whereas HU won’t . All in all I haven’t a clue what to do so will probably try and put off any changes and not do anything different for a while . I know I won’t get a good response at clinic on Friday .
There is also the option of a slight increase in HU and then it would be easy to drop it again if you feel poorly. Also, your decision now is not final! You can always ask to go on interferon later on if you feel more up for it. A change in medication is a big deal and takes some strenght I think and if youu’re not motivated it makes it even harder…
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