I’m seriously thinking of changing from Anagrelid to interferon.
I’ve always had heart palpitations from Anagrelide. All doctors to date said no interferon (I have Hashimoto) and no HU ( I have inborn anaemia). When I tried it once, I had nasty neurological side effects.
Now I found a new MPN specialist. Only 5 in all Austria. I drive 180 Km to get there. She’s a team player and easy to talk to. She said interferon is better for ET and all her patients with Hashimoto are on it, that we must keep a close check on the dosage and my Hashimoto.
After 4 years of an autoimmune paleo diet, keeping vitamin D, selenium and iodine at optimal levels, not just in the normal range, I’ve managed to heal my thyroid 60%! It’s grown and I went from 200mcg to 90. Immune system stable.
Any experience/advice about the switch?
Anyone with Hasimoto on Interferon?
She said I’d take one shot a week.
appreciate every comment! 🙂
Anag
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Anag
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Sounds like you have a good plan and that you are in control. I have et and take peg. Would recommend starting on a low dose 45mcg to let body get used to it and increase as necessary. Drink loads of water. Let us know how you get on
Thanks. I found all kinds of studies in internet that say Interferon worstens Hashimoto and others that say it doesn't get worse. Best address is always experiences from those on the medication. Ive also read from others that starting low is good (I'm also more sensitive than most people).
Yes my doctor seems good. 9 years ago we had dinner with her and her family and then they had dinner at our summer place. Our 9 yr olds had a theater course together near Salzburg. Then I lost her because she changed her tel number. I found her by reading an article about ET in the Vienna University Clinic Report! I couldn't believe it. She then remembered and laughed. We both have let our hair go gray. I will keep this a doctor-patient relationship. Friends never make good doctors for us. They see too much or too little. They don't want to believe that you can be sick, thus a uni Prof friend didn't see my ET that was obvious for 7 years and three TIA's.
Give it a try your specialist will monitor you. I found I couldn't take interferon it seems to work for most. I am weighing up switching from hu to anagrelide but am worried about an increase in palpations.
from what I’ve read, palpitations do happen to some; not rarely and not often. I’ve had the palpitation since 2017 when I started the drug. I’ve been taking acetyl l-carnitine for almost a year now and they keep the palpitations and check. I just spoke to my doctor tonight and she said I would be taking Besremi. I should start off slow with a 50 mcg injection. This works for two weeks while continuing Anagrelide, then going up to 100mcg every 2 weeks. Then I will taper off the Anagrelid. Apparently this works better to curb not only the thrombocytes but also the megakaryocites that are mutated; the only medication that stops the ET from getting worse. We will have to keep a check on my thyroid hormone status, every two months for a while. It’s a process.
same here, but since I am having such problems with Anagrelide and the normal interferon is more or less out of the question since it has such a strong curve at first, which is dangerous for my thyroid. Because of this, I’m getting special permission. The cost is astronomical! Most drugs are like that and the more it’s used/sold, the cheaper it’ll get.
Try the Anagrelide and see. Everyone is different! (Thank God) 😁Good luck.
Hi Anag, I have been taking Interferon since Sept 2019 and my thyroid function was monitored along with my blood counts and blood chemistry because of the risk of Interferon causing autoimmune hypothyroidism. Unfortunately, I did develop Hashimoto’s after about 2 years on Interferon. No one has suggested I stop the Interferon and switch to something else but I now take Levothyroxine as well. I think there is a link between interferon and the risk of developing other autoimmune diseases so if you already have one, I suppose there may be greater caution about starting Interferon but maybe your doctor will have more information about the relative risks.
I hope you find the treatment that suits you soon.
I used to take the highest amount Levothyroxin available 200mcg. Once I went on the autoimmune Paleo diet, my whole immune system became better, and I had my first cold two weeks ago after five years of no colds although I suffered all my life from bronchitis and cold that would never go away except without antibiotics. My eczema went away after 33 years of creams and Cortizone!
4 years ago, I switched to bio, identical thyroid T4 hormone from pig, and since taking selenium, lots of vitamin D and some iodine, and removing all toxicants out of my house, including cosmetics, I have been slowly able to reduce my T4 intake to about 85 mcg and my thyroid grew more than 50%! Hashimoto is definitely curable. functional medical doctors have answers which conventional doctors don’t. By the way I had Hashimoto since I was 11 and although I had thyroid test yearly from 20 years old, it was first diagnosed when I was 31!! Most doctors only test TSH! That’s not enough perhaps you had it before. I was checked by doctors in the US, Canada, UK, Germany and then Austria. I’ve lived in all these countries crazy!! I was sooo sick! A doctor at a party diagnosed it by listening to my symptoms alone and the 2 was later she did a blood test and confirmed
I have ways of settling my immune system. Regarding Besremi, If I see that my antibodies are crawling upwards, we will hopefully find a way to settle the immune system. The injection pen has two dosages for one month. I will be able to manage the amount per dose before I inject it. The advantage of besremi is that it is distributed equally over the two weeks and I will not have a stronger dose in the beginning that will taper off. This is what convinced me to start.
I don't know if the it is supplied where you are is different from here in the US- but hopefully it is.
What I receive monthly is 2 separate syringes with 500 mcg of medication in each, meaning that I waste most of the drug each time I take a dose. I started at 50 mcg every 2-weeks, so wasted 900 mcg for that dosing cycle, and now that I am at 100 mcg every 2-weeks, I'm wasting 800 mcg each dosing cycle,
I spoke with my MPN-specialist about it, and she said that that's the only way the pharmaceutical company will supply it. I was hoping to get a multi-dose stock bottle and syringes to draw it up myself, but no such luck- they appear to have us over a barrel.
She did say that in Europe, due to a better regulatory system it's not done that way, but even if it's 1 syringe with 2 doses, unless they supply variable dosages [i.e., a 2x 50 mcg syringe, a 2x 100 mcg syringe, etc.] there's going to be a lot if wastage.
It would be better for everyone [except Big Pharma] if it were like my F-I-L's short-acting pre-prandial insulin in a multi-dose syringe that has a dial to select the dosage needed per shot, and replaceable single-use needles for each dose.
Likewise, Jakafi is charged at a "fee-per-pill" rate here, so you have to have a new prescription for each dosage increase [i.e., it costs twice as much to take 2- five mg tabs vs 1- ten mg tab, etc.]- which is ridiculous. But what else are we going to do?
It has a dial to set the dose. Seems near identical to your insulin med. This system apparently was not ok for US FDA.
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My Dr has explicitly told me to use all that is in the syringe. I posted before on a detailed way I consider to be safe and effective (but not officially sanctioned anywhere) . It's worked well for 8 months so far. I wonder if your Dr could agree to trying multi dosing. It's effectively the same as you're already doing with that other biologic, insulin, except injecting Bes by real time dosing requires a good dose of hand-eye coordination. I think FDA nixed the dial and the real time dosing hence the wasteful published procedure.
Another finding recently is storing the syringe pointing upward keeps the bubble in good order. When i kept it sideways the bubble became plural and harder to get the air out. This was in our RV where there was motion.
I did broach the possibility of saving and using the syringe for multiple dosing as you mentioned, which is honestly something that I would have no problem doing in spite of the warnings, etc. not to, but SWMBO is adamantly against making any changes on my own recognizance, especially as I'm still in the earliest stages of treatment with Besremi, and not on a stable dosage.
I do wish [for the sake of economics and my general philosophy of waste not, want not] that we had the medication available here in the format that you do there- unfortunately the lobby's of Big Pharma are strong here and the pockets they line are many on both sides of the aisle.
I had to read the conversation a few times to understand. Wow.
What I find is that the syringes or the dosages are made one size fits all that they dont have to make different sizes. The waste is not a monetary one, because the production costs are probably very low. The development and the testing of the drug was huge. My worry is that our environment is full of medicinal chemical waste and this will additionally add lots of unnecessary interferon into the eco system. Just think what all that can do to the environment. In the US, they are finding blood thinners and the pill in the drinking water in many cities! Then they are wondering why 57% all young men are having difficulties fathering a child. It's not a subject to be neglected.
I'm glad I am getting a pen. I have no problem using a syringe, but the pen's just easier. it would also help more patients who don't have a steady hand of fear of injecting themselves do it properly. I used to be terrified of injecting myself. Would break out in sweat and get dizzy. (Ski accident, where I had to inject blood thinners daily).
Thank you all for answering and for your insights! Keep well everyone! You've helped me a lot. 🙂
I agree I wish we had the pen in US. The real time measuring is not easy, you have to watch the plunger and pull out at just the right moment as it passes an arbitrary marking line that is different every shot. And you can't predict the starting point to measure from till all the air is out. So quick arithmetic and keen eye is needed just before the jab. I've got it figured but I don't think they could approve and publish such a procedure.
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On drugs in the environment, it is a real big problem. I suspect HU chemo might persist in the environment for example. One positive here is biologics (IFN, Insulin) break down fast and may be less a problem. This article contrasts biologics with others that are more risky:
"Many drugs include molecules that are not found in biology — such as halogen groups — that make them more persistent in the body and the environment...The increasing importance of biologic drugs, which break down more readily, will also help."
Halogen for example includes Freon that has been a big problem, being a "forever" chemical in the air.
wow! Thanks for the explanations. I do believe that the dosage system in the States, which you are explaining, is unscientific and dangerous. So many people do not have a steady hand or eye. Unbelievable. I’m curious what my pen will look like?
The prescribed US method is actually quite easy, accurate and clinically safe. The dose is set by dumping the extra of the 500 mcg of juice till the plunger is at the correct dose. And this can be done at leisure with the syringe at eye level away from the body. Then just inject till the plunger stops.
Problem is it's super wasteful for example a 150mcg dose dumps 350 of juice. (~USD 5,000 wasted)
So my Dr won't have it, hence my multi use procedure that I have set up. It's not approved or recommended in any official way but works well for me.
I feel comfortable in general since multi dosing is known in the Euro pen and some insulin pens. Here is a prehistoric study (1980) that found reuse of both needle and syringe was safe (But I would never reuse the needle for more than one session):
"Multiple use of disposable insulin syringe-needle units appears to be safe and cost-beneficial."
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