-This post applies to just the rarest of circumstances and does not implicate the well established safety of IFN as we use it. -
I've been checking out trials etc for Sjogren's for obvious reasons. I came across this one which has a clearly presented note on the IFN-autoimmune connection I've posted on. This IFN is the type 1 we take, but it's of a sort created within the body, so not the medical version if there is a difference.
But it does illustrate my experience that if you're tipping to a concerning immune condition, adding more IFN is contra indicated. This therapy is specifically looking to reduce systemic IFN as an end point.
My real life example is that "last IFN dose" that clearly tipped me to the abyss.
In practice I think this supports the "lowest effective IFN dose" strategy that many members are already doing. (and I didn't)
(I plan inquire on this trial)
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EPguy
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I certainly agree that less is more with IFNs or most any other medication. While I have had a positive experience with the IFNs and support their use for many with MPNs, I would not ever recommend taking more than the minimum needed to maintain a hematologic response. I just do not believe that the putative benefits justify the intrinsic risk of higher doses.
Pharma Essentia hasn't gotten the memo of this dosing even as real world data are arising. I know various studies found no connection of dose to VAF, while there was for CHR vs VAF.
I agree the case is ever more compelling on the min dose approach.
Interesting! I suspect that genetic test results will one day be part of the dosing decision for drugs like interferons. I got a few bits of info from 23andMe on being a predicted rapid metabolizer of one set of drugs (increased enzyme activity), a predicted normal metabolizer of two cancer drugs I don't need, and having predicted decreased protein function for something else. My current doctor is guessing that I'm reacting very efficiently to the low dose of Besremi I'm now on--we'll see if that pattern continues. I over reacted to the covid vaccine I had in late September, and then got some sort of mystery virus a few weeks later. Tomorrow I get the flu vaccine if I'm feeling up to it. I don't know what all this says about my immune function, but it tells me to keep wearing masks in crowded indoor spaces. And to keep my fingers crossed for all of us at this site.
You're doing the vax timing well if my experience and the recent post's comments are a guide. Lots of time spacing.
Is your over reaction to the vax better? On the other forum (Sjogren's) I'm in there is a pattern that the Moderna this year is getting strong side effects.
Yep, I've taken all Moderna vaccines so far. The over-reaction I mentioned started 9 or so hours after the shot, and then raged for less than 24 hours. After that I began taking Besremi again after being everything half a year. A few days after my 2nd Besremi @ 100 mcg, I began almost a week of some other (supposedly non covid) virus, with bad aches into the bones and joints, utter exhaustion, and mild temperature disregulation. I reported this to PharmaEssentia in case it was a reaction, but, really, who knows? This second episode ended with a light but lasting cold of sorts. My third Besremi injection has not brought me low, though I'm pretty self protective these days (that is, not pushing myself.)
I have two friends currently down with Covid, and their symptoms sound a bit like my "virus" so I'm wondering about the efficacy of the Covid tests I used.
Post flu vaccine one day, and my joint aching is back. Is it flu drug or Besremi or the PV causing this? I also have had for a year now, with and without medication, a sort of freezing/burning sensation mainly in my torso that is so hard to describe. Luckily it is periodic not constant. I wonder if it is sludgy blood struggling to circulate. I can temper it a bit by tapping on myself, rolling on the floor in a sort of yoga move, or begging for a back rub. The joint pain however--don't know what to do about it. I walk every day and do qigong, but going down stairs for instance is suddenly like walking on wooden joints that have no flex. Disconcerting. Is arthritis a side effect of Besremi?? I guess I'll give the flu vaccine toxins a chance to be "cleared" by whatever organs are attempting that, and if it is still bothering me, talk to the clinic. Must I also go down to 50 mcg as @Pogm (see below) did, or perhaps better to have one 100 mcg a month and not have to feel this way every two weeks.
If it's sudden after the flu vax that does seem connected. Of course none of this is 100% knowable.
If the new joint pain or other strangeness persists it might make sense ask Dr about lower the dose or even take a break if your counts are good. Mine held for 3 months after that last dose. I had many issues after that vax, but then felt ok for a couple weeks. Then the warning with fatigue etc, and that's when the last IFN dose did me in.
For me, post is timely. I saw my Hematologist yestereday. We were considering a change to pegylated interferon due to about 2 years of uncontrolled bloods (after ever increasing HU doses and venesections). To my surprise my bloods were as close to normal as they get for me, despite pushing back on having the last venesection that was offered. So we decided to stay the course with the current treatment. One of the concerns with any type of interferon is that it will initiate an auto immune response. My Hematologist has seen this clinically outside of his experience with me. Eight years ago, after I took an unpegylated form of IFN for 12 months or so, I developed an autoimmune thyroid response (Hashimotos).
I just wanted to share my experience. It is always a balancing act for all of us to find what works. And I have found that every available treatment option produces side effects. There's a lot of things to consider when we choose a course of treatments.
Dear Community, please forgive any spelling mistakes in the above post. Spelling is not my strong suit. Take care, all you folks with some form of a MPD.
UnPeg IFN is a tough medicine. Could be you're primed for more autoimmune responses with either type.
One downside with peg IFN is if things go bad it persists in the system much longer, esp Bes. I think this is part of my permanent damage from that last dose. I will ponder this more in a later post.
If you have trouble again with HU you might discuss Rux. It can be quite effective for PV and at least for me the sides are lots less. Like IFN, Rux can reduce the mutation.
I am reducing Besremi as of today. My platelets are down, but I’m having terrible join and brain problems. I was diagnosed with some brain inflammation in my brain stem and mid brain. I’m having transcranial stlmulation therapy which worked immediately. My doctor offered me to stop the Besremi, but the alternative is to go back to Anagrelide, which has caused me heart problems. So what is worse a bad heart or bad brain? A bit of a double edged sword isn’t it? My very detailed blood test a week ago was very good, so I am reducing Besremi from 200 µg down to 125 today and may the Lord bless this decision!
I have a referral for Transcranial magnetic stimulation for anxiety. (near all Sjogren's pts have high levels) Is yours that or electrical? It TMS takes many sessions from what I've read. That's neat it worked so well for your inflammation.
Hoping your "lowest effective dose" works out well.
hi there! I just removed the Ducest PAVK brain stimulator after three weeks of wearing it straight and having pulsed waves sent to my brain stem throughout the day and night.
after that, I started with the PlatoWork TCS (transcranial electrical stimulation -commonly also referred to as tDCS or tACS) headset. The goal of this is to better my concentration, learning abilities and memory. There are other settings help with depression, anxiety, ADHD, sleep, etc. It activates the brain. To form new neurons, and I believe also to help clean the brain. But don’t quote me on the latter.
I will be using this once in the morning to stimulate learning and concentration, while doing tasks that require lots of thinking, and in the evening the same program on my front lobe to help call me down, rest and sleep. After five days, I will add one more sessions to the middle brain again, which will help with my tinnitus. That would be absolutely amazing! I’ve been suffering with that for about eight years!
I will definitely let everyone know how I’m faring in about a month of daily therapy. 😁
I reduce Besremi from 200mcg down to 125 mcg. We were able to do this because my thrombocytes have been regularly going down in the past months. I am still taking Anagrelide just one capsule of day. In two weeks, I will have another blood test to see where the platelets are. Above all, we are looking for a change in the side effects so that there is a reduction in the negative effect on my quality of life. 🙏🙏🙏
Thanks. Are you talking about Besremi? I dont understand 'This IFN is the type 1 we take, but it's of a sort created within the body, so not the medical version if there is a difference'. Can you clarify it, please?
Correct, both PEG and Besremi are interferon type 1. There are various other IFN types with different numbers and different Greek letters (there is alpha, beta, (both types 1's) and gamma (type 2) for example)
From my best understanding the IFN we inject is the same active IFN as the one our body makes. But even being the same it might matter how it gets supplied (shot or natural).
But the general idea I get is if one has an IFN triggered autoimmune like the image at top post adding more IFN-1 is not a good idea; in fact taking it out is the goal in this particular medicine.
The report below from George1976 has a great description of all the IFN types.
In your research have you noticed a role being played by Serotonin?
My experience with Peg appears to have left me with neurological issues that in many ways resemble long COVID.
Now just recently long COVID researchers noticed low levels of serotonin in this group and have started treating patients with SSRIs. I tried some lexapro and it seems to have resolved this dizzy throbbing in my head that I’ve had for the past 3 years. I never could and still can’t tolerate SSRIs generally but now I suspect my serotonin is involved in some way. And since platelets store and transport serotonin, perhaps my ET is compounding this situation.
This article on depression caused by IFN does say how serotonin can be impacted by treatment. Im hoping a long COVID clinic visit can help me explore treatment options. ncbi.nlm.nih.gov/pmc/articl...
These are all informative comments about the use of Besremi. I am currently on the lowest dose(50mcg) and will stay at this dose for awhile, after being at 100 mcg.for 2 months. Uncontrolled hypertension( now controlled with stronger dose of med) terrible headaches and increased urination occurred when I was at the higher dose. I reported these reactions to PharmaEssentia . The comment about brain stem inflammation is particularly interesting. I am scheduled for a MRI of my brain in 2wks. MPN specialist wants to rule out anything that could have contributed to headaches ,etc. I was reluctant but after hearing about this possible autoimmune reaction , I will go through with it. My platelets and hematocrit have risen now with lower dose so I will have a phlebotomy tomorrow. My flu vaccine was a "breeze" and plan for the Covid vaccine in a few weeks. I never had a problem with it, yet that was before I was on Besremi. Wish me luck!
I've looked into serotonin in the context of getting too much (serotonin syndrome) . I was experiencing a mild case of that. Many meds and supps increase serotonin.
But that report does point to increasing serotonin as being helpful. (It also has a great review of IFN types) On the % who suffer depression and the like, I think their data, as with many others, is from the hepatitis treatments that used high doses of mostly non-pegged leading to very high peak IFN levels. It doesn't seem that high on this forum but that's just a feeling.
Has your Dr discussed other options for increasing serotonin? One example is Silexan , a nonprescription (in the US) oral lavender oil. There are other less harsh options than SSRIs.
Unfortunately I've learned a lot about this stuff dealing with Sjogren's.
Thanks for the thoughts. Have not spoken to docs about testing or treating serotonin yet. Will check out Silexan for sure. Just can’t stop wondering why I had so much pain on my last dose of peg. Seems like the answer to that would be very useful.
Understand now you had a new type of strong neuro reaction to the last dose. What neuro symptoms did you get? In the present context we're thinking about any possible autoimmune reactions, of which neuro are common.
Unfortunately most Hems or even MPN docs are not looking here.
Had pretty bad depression on Peg but first real neuro issue was a mild TIA, then neuropathy in my legs causing weakness. Within a month I then had numbness in feet, then really bad indigestion, night sweats, dizziness and throbbing in my face head neck and spine, a lot of trouble sleeping. Not all directly neuro maybe. Then the last dose of peg made my lower legs burn very badly and seemed to cause intense pain in upper abdomen. Still have dizziness and throbbing in head and neck and some burning, numbness and weakness in legs. Curious if maybe there’s a doc out there that has experience with side effects from IFN that I could visit.
On IFN experience, it's only the last few years that large numbers of pts are using IFN for MPNs.
I am a good example of a clinical experiment for at least one Dr. Much of the historical evidence/case studies on adverse reactions are for nonPeg IFN and at the high doses used for Hepatitis. I think the largest ones for MPNs are the retrospective one we all discuss done by Cornell- (I think ~n 400, a mix of modern and older IFNs ) and the Bes trials.
So unfortunately the very large n studies that find these rarest reactions are being done by us right now. This is common with new meds. Many of our full experiences such as yours were not seen in the Bes trials as I can recall. An emerging theme at least here seems to use "the lowest effective dose". This conflicts with much practice and trends from the mfr.
In sum I feel we're on our own to be proactive monitoring these sorts of rare risks.
Hi EP Guy. Thanks for keeping us updated. This forum is so important to give us information about MPNs. And it must be difficult for you when so many others post on here about their positive experiences with PEG. We are all different, and can learn from the experiences of others. So thanks for your contribution to the forum. Best wishes
I'm good with Rux, esp with the recent data showing its allele reductions. I really liked the infrequent dosing of IFN but, esp looking back at my old posts, I had a fairly hard time on it. My main regret re IFN was taking a larger dose than I needed, per Dr orders, and especially the specific reason I had to quit (vaccine reaction). This "tough medicine" (My Dr's words) is smooth for most, but it is a surprise how many here are experiencing some of the "tough" side.
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