I guess I’m clutching at straws here but I’m not keen and will probably decide to not start Ruxolitinib at this time, so that just leaves Peg.
I will post an update as to what’s going on since my last haem apt which was a couple of days ago but as always the monthly appointments tend to upset me so I must wait for this to pass to re-digest and recalibrate because nothing stays the same, damnit!
I’m sorry you’re so frustrated. At least you’re questioning everything and being proactive. Why don’t you want to start the ruxo? A lot of people on this site really like it.
Thanks Cja, I’m more disheartened than anything, I felt like I was put in the too hard basket at my last appointment and that it frustrated my haem. Seems I’m unclassifiable… I have all of the major criteria but none of the minor for MF. I’m trying to decide if I want to take Ruxo or not as I only have fatigue, really, and I can handle it, so I’m wondering if I should save it for further down the line….for a lot of reasons. A few being that it can lose it’s efficacy, it is a DRUG, the unpleasant side effects and a compromised immune system.
My Haematologist said if started EARLY it can extend life expectancy. The COMFORT study does not have me convinced, it seems like a complete mess to me, lol.
A bit of a conundrum, I’d appreciate your input Cja, I’m at a bit of a loss.
Jacqui
Hi, Jacque, I understand, that starting medication is a very difficult decision. If you’re not happy with your hematologist, you should change.. Is there an mpn specialist in your area? Also, ruxo is not just for MF. My original Hematologist put me on it when he thought i was transitioning from ET to PV. I actually felt more energy on that drug than any of the other drugs I tried before like Hydrea and anegrelide. But after a few years I developed anemia and my new hematologist, an MPN specialist, thinks that the ruxo may have contributed to my anemia. Unfortunately, with our disease, there’s no magic bullet or formula. I wish you well in your decision.
That makes so much sense, thank you. Unfortunately, I have run out of haematologists here in Sydney, must laugh! Oh, well, as you say there is no magic bullet. I much appreciate your words of wisdom and honesty. I believe it pays to be realistic and accepting. All the very best to you yourself Cja.
Hi, I hope to address your original question about history of depression and whether that would be a factor in choosing to take peginterferon.
Depression is often a difficult subject for people so I get that there have been few comments on that subject. It is an illness like any other and should not carry stigma but ....
So, here goes. I have been treated for depression in the past. I think I had always had anxiety and premenstrual dysphoria but would never take treatment or even mention it to my doctor as I had a grandmother and aunt with severe bipolar mood disorder. Antidepressants can trigger severe mood swings if you are genetically predisposed without your knowledge.
Well long story short I did take antidepressant therapy after my husband died suddenly but continued to take treatment for a few years after as life was very stressful and it did help particularly with anxiety. Now retired and off antidepressants for a few years and started peginterferon.
My attitude is that if I develop depressive symptoms I would take antidepressants again rather than stop the interferon. I tolerate the low dose very well but had to knock it back when it was increased due to eyelid swelling and elevated liver enzymes. But interferon, at least for some might be actually treating the illness not just the manifestations.
As for how to ensure that depression is noted and taken care of should you decide to take it I would suggest that you give one person that you trust in your life to tell you when you are not yourself, not functioning, not able to smell the roses, and to tell your doctor. At that point you can decide for yourself if taking a drug to treat the effects of another drug is the better course. Sometimes it is, and definitely is, or not.
For myself, I will consider going back on antidepressants if things tank, but so far my mood is pretty positive.
You have friends, Lauren
Hello sweetheart! You have been on my mind as I have been meaning to reply due to your response to an earlier post of mine.I’ll start with addressing that firstly and I’m hopeful this reaches you before your appointment in June. My comment regarding salt and your response gladdened my heart because it works for you and I don’t feel that it’s all that bad a thing, salt is loaded with necessary minerals, I believe. I may have misled you, I was only thinking about what the the balance clinic specialist mentioned to me, but this was pre diagnosis! In retrospect and in my case I am sure it was due to high platelets. My visual disturbances (hence being sent to the balance clinic) was like putting on someone’s really strong prescription spectacles that did not suit me. From a chat with Steve Socrates, I think it’s term is monocular vision.
I hope this all makes sense and that you focus on more pertinent issues with your next appointment. And I hope you get some good news from your next appointment please let me know.
Sending love,
Jacqui.
Hiya!
I is lovely to hear from you and yes, natural salts have other trace elements and taste good too. I really like Maldon's and cook with a Mediterranean sel-de-mer, and of course the nice pink stuff, oh and the moist grey sea salt from France. It doesn't go bad and takes up hardly any space in the pantry so you can have lots of salts on hand.
Your vision issue sounds like a trip to The Fun House, but I bet it was not fun at the time. Has it cleared up?
I get blood tests every two weeks and can monitor hematology, liver and kidney parameters myself, I have medical training too. Of course I value the input from my MPN specialist. Like Hunter and many others on this site I think it is a good thing to keep apace of the science.
I hope you are having a wonderful spring and that things are opening up where you are.
XO, Lauren
Lol, you’re salt rave, hilarious….I’m sure they love you back, every one of them.
Yes, the vision quest is over, thankfully they only lasted about 30 seconds but did quite freak me out. And what I forgot to point out to you is that the balance clinic specialist could only figure it to be dehydration. And that people with low-ish BP like myself should drink loads of water and eat lots of salt, little did she know it was a symptom of probably high platelets at the time.
Every two weeks, sounds good, I shall compare down the line should I go on some meds. I’m guessing otherwise it would be once a month?
New seasons always takes a little while to get going these days but after our La Nina this summer its become quite chilly already. I don’t usually like the cold but I’m enjoying this one so far.
Hopefully you’re enjoying some lovely spring weather and that your summer stays safe from wildfires. xo
Ya, well maybe a bit overboard on the salt thing....I make a sourdough bread with topping of fresh rosemary leaves, garlic olive oil, flake salt and cracked pepper that my friends can't get enough of. A covid skill, bread baking, that I will appreciate for the rest of my time on earth.
We are probably having similar weather, today grey, occasional drizzle and 12C. The hot tub sounds like a good thing to do this morning to warm up. That is one of my symptoms, I am now cold almost all the time though in past really disliked hot weather. Heating bill is a fright.
Good your vision cleared.
They monitored my blood q2wks even before meds, though that was at first diagnosis. and it was not long until first haematologist talked me into taking HU. I guess when I am deemed stable it might drop back to monthly.
Wildfires a concern here for sure, though not the fires in my vicinity but the smoke can be really unpleasant.
Be well, Lauren
Thanks for your reply Lauren, I’m a bit fed up with everything I so I can’t reply back … I really just need to drop out of all this now.Be well as is possible dear friend.
…mmm, can’t live without my sourdough ☺️.
Excellent exposition on salts. I like the lovely pink Himalayan salts. Apparently I need to expand my horizons! Also need to make more bread. I am out.
The very two-weeks at initiation of HU until things stabilize is the standard protocol. PEG-IFN is apparently similar, but not necessarily as often. Just staring up Pegasys, my docs are doing labs at initiation-2-4-8 weeks. Will likely be monthly for w while until we see how I respond and we get the PEG dose titrated to where it needs to be.
All the best to all of you all.
Hiya, hope things are going okay with the pegINF. The lovely pink stuff has little iodine, though so some of the salt has to be iodized. I always thought that living near the sea meant that you got iodine from hmmm, the veggies and stuff grown in the soil. However we are not often eating produce grown in soil and local, even if we try and we have a very active local home-grown food network.
I think that I will do a search and see which of the natural salts have best iodine levels and then I won't need the processed stuff. A project.
Enjoy a little bread baking soon..
Take care
Hi! Bipolar makes it more complicated though if you have taken an SSRI (Zoloft) in past and not become manic and as you say it is "mild" bipolar disorder that is less significant than if it was bipolar 1.
I did come across a case report of a man who had a severe and very difficult to treat Bipolar 1 disorder who was stable on Lithium and an antipsychotic, then took relatively high dose INF alpha for Hep C. When the interferon was discontinued he became acutely manic but was eventually stabilized.
Very difficult to take any lesson away from a case study published in 2008.
Your haematologist is bound to be cautious with INF given the severity of your anxiety symptoms and the fact that I don't think people get quite the follow up they would get with the current pandemic restrictions on actual visits. If I was that specialist I would ask for close psychiatric follow up if you insisted you wanted to try. Psychiatry is better with direct contact of the person and the psychiatric team which should include family and trusted friends.
Your situation definitely sounds complex and confusing too with suddenly being told you have probably progressed from ET to MF as you said in your other post. Is your haematologist very conversant with MPNs? I asked for and got a second opinion on my bone marrow biopsy so that was at least possible for me. That was even though the first pathologist was not at all uncertain about diagnosing the marrow as consistent with ET without any signs of fibrosis.
I reduced my dose after the facial swelling, but did not discontinue and had only been on the increase for 2 weeks and my eyelid swelling went away which I really appreciated. There was no other change, though hope to see my liver enzymes come down with my next blood test.
My depression would not have been classified as Major Depressive disorder but what used to be called Dysthymia with anxiety, so called minor depression. It waxed and waned but made me a grumpy person at times. It never stopped me from functioning. And so much better now that I am retired and get outside more.
How nice that you adore you husband!
Take care and keep us posted on what you learn and decide. Lauren
Has anyone moved from Hydroxy to Ruxolitinib.
Has anyone had to give up work due to having MPN ? 
Anyone else experience worse side effects on Besremi as compared to Pegasys?
Critical illness claim success!
Curious of Other Peoples Experiences
