A month into Pegasys, Australia …

[Pachena]

An Update 😃

Now a couple of weeks later and all is well. I saw my haematologist and we were both surprised and encouraged to see that my platelets had gone down 200 in the 4 weeks I’d been on Pegasys 👏🏻 Neither of us had expected that as we had decided on the low dose and slow results thinking in the long term my platelets would decrease and to save side effects. So to get such a good result so quickly is wonderful 🤩 The haematologist wasn’t too concerned with my day of tears or my dry eyes atm. She said we would keep an eye on those and if I had a bad day again to stop the injections and call her immediately.

She asked how my side effects were compared with Hydrea and I said they hardly rated at all in comparison. I really struggled with Hydrea and Pegasys was like a walk in the park. She suspected my side effects would reduce more the longer I was on Pegasys but to keep in touch and to call at any time if I needed advice. For now to keep to 45mcg a week till my platelets are normal and then we can extend the doses to 10 days, 2 weeks, monthly etc as time and results allow 👏🏻 My RCC is still in the upper limits tho she is keeping an eye on that while my WCC remains in the normal range.

I am very pleased with my progress and feel I’m in good hands 😊 I had also been following an anti inflammatory diet during those weeks so I wondered if that helped at all 🙆‍♀️

Thank you all for your help and encouragement 🌸😃

Original Post -

hi, I was diagnosed with ET JAk2 positive in Jan 2023 and confirmed with BMB in May 2023. On low dose of Hydrea for 6 months tho with lots of side effects, I decided I couldn’t remain on this for life. Female, 61 years (with 2x TIA’s in 2019).

So some time off and now one month into weekly injections of 45mcg to start off and see how blood tests go.

So I see my heamatologist on the 16 July. I’ll do blood tests later this week to see how I am doing. It is expected I will be on low dose for awhile and see how my blood cooperates before increasing the dose. I was on low dose Hydrea tho I didn’t cope with the side effects.

I have been doing well. Only slight nausea if I wake in the night early hours after injection. I’m so excited after my experience with Hydrea.

However I have begun to feel low and today I just cried without understanding why. It was a fright for my husband. We know that Pegasys does have a depression warning tho I’ve not really had much of a depression history. There was a time during my time in radiology in the late 90’s early 2000’s when they were changing ownership and much of the framework was changing that it was extremely stressful for everyone. My doc told me then that he had quite a few of the radiology staff on antidepressants from the stress at my work.

Today, I was a bit alarmed at my tearfulness.

My husband said maybe it’s the injections.

I had my fourth weekly injection last night of 45 mcg.

I hope not as it’s so much better than Hydrea.

I have just had mild leg aches and some prickly feeling under my left ribs. Otherwise all good.

Is there anything I need to ask at my appt with Mum haematologist on the 16th?

I really don’t want to go back into Hydrea and I’m not sure what other options there are 🙆‍♀️

Thanks for your consideration 🌼

[Spanelmad]

Your husband maybe right about Peg causing the tears, it is a known side effect. I would want to discuss this with Heam, 4 doses and then this may means your very sensitive.Do you have any autoimmune problems?

[Pachena in reply to Spanelmad]

Thank you for your reply 🌼

Yes I do, I’ve hashimotos, lichen sclerosis and had a couple of anaphylactic episodes. I’ve a wheat allergy and currently trying an anti inflammatory diet removing dairy, sugar, gluten and having healthy fats. High fibre and fermented foods to feed the gut.

It’s early days so I hope this passes and I can have a relatively easy treatment plan 😊

[hunter5582]

It is certainly possible that this is a Pegasys adverse effect. Hopefully the downward trend on mood will prove transient and will resolve on its own. Depending on your results, perhaps a lower dose of PEG could be considered if it is responsible for the mood issue. Perhaps intervention to balance out mood could also be considered if needed.

There is another platelet reducing medication that can be considered if both HU and PEG do not work for you. Anagrelide is also used to treat ET; however, it is a second-tier choice due to the side effects. Some people do tolerate it better than the other choices.

Given your history of TIA's, finding a cytoreductive medication you can tolerate makes sense. Hopefully, PEG will work out for you since you seem to tolerate it better than HU.

Please do let us know how you get on. All the best until then.

[Pachena in reply to hunter5582]

Thank you Hunter for the information on the other possible treatment.

I do hope this is transient. I know the option is there to just keep taking the aspirin tho I know two people who were disabled in the past year with strokes and I really don’t want to take the risk. I’m glad the ET was found so hopefully with treatment the chances are now very low.

From this group and the paperwork given to me I’ve read that with autoimmune problems, I needed to get a baseline check on my thyroid, eyes and other bloods. The haematologist did ask for more bloods and I asked my doctor if she could request a check on my thyroid. So I’ve had a recent ultrasound to check my nodules and seen an optometrist to check my eyes. I’ve developed dermatitis on my eyelids which is something I’ve not had before. Also now very dry eyes. Both probably things of ageing.

Thank you and I will keep in touch with my progress.

[EPguy]

I watch the forum for members on IFN at potential risk of autoimmune (A-I) disease. Along with severe metal health events, autoimmunes are in the Black Box warning in the US FDA label. Autoimmunes in particular can be irreversible, I have suffered this. Within autoimmunes, Sjogrens is among the worst case outcomes and has an apparent particular connection to these rare IFN outcomes.

On mental health, your comments "that Pegasys does have a depression warning tho I’ve not really had much of a depression history." is a concern. It suggest the IFN alone is bringing on a serious but otherwise absent event.

A bigger concern is your A-I history, Hashimotos is not that rare but is often associated with Sjogrens. Of particular concern is your comment: "I’ve developed dermatitis on my eyelids which is something I’ve not had before. Also now very dry eyes". Aging alone does not normally cause sudden large changes in dryness. An innocent reason for sudden and severe dryness can be a new medication, antidepressant for example.

Assuming no new med, it seems these conditions are recent, or recently much worse, since starting the IFN. If so you are at real risk for sudden onset Sjogrens. Each additional dose could tip it over. Pay attention too to any new neurological conditions and dry mouth.

My posts like this have saved some members this outcome. See my post "Last Dose" for why this sudden outcome is a worry.

Also see my post on Autoimmune tests I got. You should get an appt asap with a rheumatologist to discuss, although many Rheums are not knowledgeable on Sjogrens. In the meantime your GP should be able to order these tests. SS-a is an important one, Rh, ANA and CRP are some basic ones. However one can still have Sjo and all the tests come back negative.

In he meantime you should consider a break in the IFN till all can be clarified.

[ainslie]

depression is as others have mentioned a possible side of Interferons, some docs suggest a mild anti depressant if prone to depression even before starting Interferons. They are not everyone’s cup of tea of course.

If you have AI issues it’s a good idea to check out what EP guy is saying , I don’t know much about the subject but I hear Inf and AI issues can be serious and don’t always go away on stopping Inf. I know other patients with similar issues and should be avoided if poss.

[Pachena in reply to ainslie]

Thank you, Ainslie 🌼 I’m working my way through EPguy’s posts. Took me awhile to find them ☺️ I will definitely speak to the haematologist when I see her next week 👍🏻 Thank you for your support.

[Janis12]

Hi, sorry you are experiencing this it makes you think 'what is the drug and what is just getting older'. I switched from hydroxy to peg after four years because my platelet levels were increasing so my dosage of hydroxy had to also increase. I was upset about the ongoing hair loss and with the increased dose i developed gastritis so had to go on drugs for that....yikes! i asked my haematologist if I could try pegylated interferon which he was happy to oblige. I have been on 45mcg once every two weeks for 11 months now and am gradually weaning off hydroxy. My platelets have reduced initially but then increased slightly as the hydroxy dose was decreased. It was decided not to increase my peg dose as i am very slightly built and like you have developed a 'flat mood' which has an effect on my motivation and generally not very interested in anything. I have always been a very active person cycling, walking, gym, riding and exercise classes but have to admit although still doing it all if it was not for the fact that I am very disciplined I think I would have thrown the towel in on it all. I have also been a long term sufferer of general aches and pains and since taking peg this has just reached a whole new level. Perhaps it is just the low mood making me feel all the pain has got worse or is it just because I am now approaching 66 year old, who knows for sure. I have decided to ride it through for the time being, the doctor thought that was a good idea and in my own head I thought I would give this 18 months (platelet dependant of course) and then see how I feel. I am sure many other people on this site will share their own experiences with you, gathering as much knowledge as possible allows us to make informed decisions, with the help of the doctors of course. See how it goes and very best wishes to you. Janis

[Pachena in reply to Janis12]

Thank you for sharing your story, Janis, it does help.

I too have always enjoyed exercise and keeping busy tho I don’t have a lot of motivation lately. To be honest, my husband and I got back from overseas, being away 4 months and then we both got a nasty case of Covid a week after we were back on 4 July. I didn’t get better and 2 lots of antibiotics followed. My first Pegasys injection was delayed till 18th July and I’ve had 4 weekly injections since to start off slow and low. I did notice leg aches on some days after each injection. One of the members on here said that tho fatigue can be a problem, it’s necessary to exercise as it helps beat fatigue amazingly enough. So with how I felt, I realised that I must just set myself daily guidelines and be disciplined to do them for my own well being.

My husband got Covid again on the 4 July tho thankfully he wasn’t as sick as the first time. A different strain I guess. I was actually surprised he got it and I didn’t 🤷‍♀️

I appreciate the support. My husband said to continue and see, it may all settle and that’s what I hope for. I know two people in the last year who have been disabled with strokes and I really don’t want to take that risk.

To learn more from others here and ask questions when I see Dr Cleary.

I’m trying to eat well and take care. I don’t want to be unnecessarily fearful ☺️

Thank you 🌼

[Janis12 in reply to Pachena]

Let me know how it all goes, it is very difficult to know what to do for the best. Best wishes.

[Pachena in reply to Janis12]

Thank you, Janis12 🌼

[RoundTheWorld]

Hi Pachena. We’ve been on Pegasys a similar time and I’ve had some fairly sudden tears. I figure that for me (for now at least) it is more likely a normal emotional reaction to everything going on, frustration at having to live with less ‘abandon’ and being a bit daunted by a new treatment and a degree of uncertainty as it is a side effect of the interferon.

Having said that I have mentioned it to my haematologist (and will mention to the mpn specialist I will see next week). My husband (and I) are keeping an eye on it.

Hope you feel more consistently bright soon.

[Pachena in reply to RoundTheWorld]

Aww thank you 🤩 You expressed it so well. It’s good to know how others are doing 👏🏻 I did observe before I started the treatment that some found it hard and the statistics are that a high percentage will not cope with the side effects. Tho I really did and do want another alternative to Hydrea. When my haematologist expressed concern over how people cope with Pegasus, I said I hoped in the long run it would work for me. This I still hope and that as the weeks go by, I settle into it better ☺️

[Exeter21]

I kept to monthly payments injections of 45 & feel great on it. However on weekly felt awful. My MPN changed it to monthly . Now 2 years on it excellent but do not expect quick drop of platelets mine took a year slowly as body got used to drug but better than hydroxy for me & no side effects now. I always inject mornings plenty of walking & water 👌 Julia .

[Pachena in reply to Exeter21]

Thank you, Julia, that’s very comforting to read and to consider 🤩 I do hope long term for this to work for me, well, us😊 I don’t like being a ‘damper’ in our home ☺️

Also interesting that you inject in the morning followed by walking and lots of water 🤩😯

[socrates_8]

Hey Pachena...

All of that is great news... Glad to learn that the change from HU to Peg' has been of benefit...

Best wishes & you know where to find us in Oz if you need a chat at any time...

Steve

(Sydney)

[Pachena in reply to socrates_8]

Thank you so much, Steve 🤩 Wonderful to know of the support available 👏🏻