just a question

[Staroftheday]

this might sound silly but I got diagnosed in 2022, with ET an jac2 am on pegsy injection wkly , I have started to get pain only slight in my left arm and a tingling in my fingers through out the day then today on my right hand one of my fingers turned white and cold , is any of this connected?

[hunter5582]

That is not a silly question at all. What you are describing sounds like possible paresthesia and/or a microvascular issue. This is something that needs to be reviewed with your MPN care team. On the outside chance that is is developing neuropathy, it is something you would want to let your MPN care team know about ASAP. Not that this seems likely, but better safe than sorry.

[Staroftheday in reply to hunter5582]

Thankyou hunter for your knowledge I see my doctor at the hospital on Wednesday,

[Anag]

I have ET and I am on Besremi the next interferon after Pegasus. Everything was going well for me for about seven months and then all of a sudden the pain in the feet pain and the hands started. The joints, the ligaments also in the shoulders, eventually all at the same time. This was at 200 µg. Funny thing was, the symptoms started when the interferon finally kicked in and knocked down my thrombocytes. It was amazing how well it worked, but at a terrible cost.

I stopped for 2 1/2 months and it took two months for the thrombocytes to slowly climb up to the point where I had to start taking something again. So I restarted Besremi at even at 50 µg 2x in a month, then 75 µg 2x in a month, thrombocytes were coming down. There was no pain. I was happy, but I did have a permanent acupuncture needle in my ear where it reduces inflammation in the brainstem. Apparently the interferon is causing inflammation to my brain stem and the middle part of the brain. I have found evidence about this in published studies.

Last week I raise my dosage to 75mcg, but at the same time took the needle out. Now the pain started again, but less. I will be reducing to 75 µg where things were still going well.

hydroxyurea, causes extreme neurological symptoms in my case, so I wasn’t able to continue. I was on anagrelide 3-6 capsules a day for six years. They were not successful in keeping my thrombocytes down all the time I was a complete jumper and my numbers would go from 350 to 900 and therefore I had to check my blood every mont thank you,h which is a real bore! since starting the interferon I reduced to one capsule a day. 😁 Since the anagrelide has caused me, heart problems overtime that are permanent, The insurance allowed the terribly expensive Besremi. Sometimes it is necessary to find a balance in the thrombocytes, and in the body by mixing treatments. The most important thing is to know your body really well.

I am on an anti-inflammatory diet for six years and I love it. Even with the ET diagnosis, 6 1/2 years ago and all flip a location. I am much healthier now at 59 then I was at 42!!! no more eczema, or depressions or fatty liver or histamine, intolerance or sleep, problems or eye migraines,… no more smelly morning, breath, or smelly armpits or plaque on my teeth, although I no longer use toothpaste. Just water and bicarbonate of soda twice a week. No more chemicals in my house. Even though I have an ET I believe that it’s the first time that I am genuinely deeply happy in my life. 🙂

[Janis12 in reply to Anag]

What an amazing story, I wish you well and continue to be 'inflammation free'.

[Spanelmad]

I would contact the heam nurse specialist and let them know, in case your meds need tweaking.

[Staroftheday in reply to Spanelmad]

thankyou I see my doctor on Wednesday

[EPguy]

IFN is great medicine and worst case outcomes are rare. Below is my opinion based my bad outcome only.

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First question is, are your blood counts stable and ok? If not that could explain your symptoms. But as Hunter says " On the outside chance that it is developing neuropathy":

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I'm the autoimmune (A-I) scout on the forum. See:

healthunlocked.com/mpnvoice...

for why I care so much about it.

Pains of various sorts are common with IFN and not by themselves usually an urgent matter. But I see you've had bad discomforts for most of your PEG journey which may add significance to any further reactions. (based only on my experience).

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**The tingling as you describe can be a neurological condition. And the cold white finger could possibly be early signs of Raynaud's Phenomenon. See the image here and the link for why Raynaud's is worth attention:

hopkinsmedicine.org/health/...

Neuro and A-I complications overlap. The two autoimmune type reactions you note could point to early Sjogren's, an evil thing you really don't want to "catch". Same for any other other A-I disease.

IFN is the only med we take that has an FDA black box warning that specifically notes irreversible A-I as a possibility. And Sjogren's is one of these in particular, noted in some IFN labels. Women are 9/1 more represented in Sjo. There are several members who have had this Sjo risk arise. Most had it reverse upon quitting the IFN, as is known. I'm one of those who did not.

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My opinion is: you should stop IFN immediately and then discuss with Dr, in that order. (again based on my sad history) Do check the CBCs while off therapy. Mine held for three months till I started Rux. Please consult a neurologist and rheumatologist also. Unfortunately finding any Dr knowledgeable about Sjogren's is very difficult, but the Raynaud's like condition is a flag and neuro is usually part of the Sjo experience even as Drs will tell you other wise. Mine started with neuro only.

Odds are your not at risk for these worst case events, but better to check it out asap.

Raynaud's Phenomenon

[Staroftheday in reply to EPguy]

Thankyou so much this is what my finger was like it was my right hand and my finger next to my thumb all the way down, I also had blood done last week as I was feeling really down and tired my bloods shown a lack of folic acid , I have also have extra thirst and dry mouth, doc also done diabetes test showed nothing, I feel a bit lost but hopefully will get there thankyou for your knowledge and support

[EPguy in reply to Staroftheday]

New "Dry Mouth" and new fatigue. I see your prior post: I "feel like there is something in my throat when I swallow it hurts". This is a classic dry mouth effect that is known with Sjo and indicates you've had dry mouth for a while. Your alarm bells are ringing. These are further strong evidence of a Sjo risk.

Look also for new dry eyes, one or both of eyes and mouth can be dry. This is from immune attack on the glands that keep these wet and protected. But one can have Sjo with minimal dryness also.

Raynaud's can come and go, as with most Sjo symptoms. I had it last year but so far none in the current cold season.

Have you by chance had any recent infections or vaccines?

If you started a new medicine recently that can also cause dryness, many meds do.

Regarding medicines, there are some specific to Sjogren's that can help with dry mouth.

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Again just my opinion, make an urgent meeting with your Drs. You can decide which, if any, dose is safe. Very good odds you'll get better in these Sjo like symptoms once off the IFN but timing matters. I'm never to try IFN again as mine is irreversible and permanent. But what to use instead if your Drs say no more IFN is a question.

Unfortunately Sjo is at least 2nd most common A-I behind R-Arthritis but rarely Dx correctly and in fact a journey down mystery lane where few know anything. Average time from symptoms to Dx is many years, as Drs resist offering this Dx. Mine was easy as it was aggressive enough to be without question.

Sjo is currently untreatable unlike what we're used to here, but this is about to change.

Please check my post on the long list of tests I had looking for the hidden trouble. Normal blood tests won't find most A-I markers.

healthunlocked.com/mpnvoice...

There are others tests too. Note that ~30-40% of Sjogren's will test negative for SS-a, the specific Sjogren's antibody. RH and ANA are two other important ones here. But all can be negative and still have full Sjo.

Why IFN is so specific to Sjo in rare cases is strange.

[Threelions in reply to Staroftheday]

Just a quick Point on dry mouth/thirst.

I get it and apart from the obvious - keep hydrated - I have found wearing nasal strips at night helps a lot as it assists breathing through the nose whilst asleep.

Prior to using them I would wake up with dry mouth & sore throat frequently.

They really help.

All the best

Mark

[Island-Lady]

I am on Pegasys and have been for two years. I only recently started getting where some of my fingers turn white when I swim in the cold ocean. For me, I am not sure of the cause, but a friend who has reynauds said that the best way to deal with it is to get your core warm with hot fluid that you are drinking. of course seeing your doctor and researching further is called for and I wish you the best of luck. It makes sense that since in et we have high platelets, that can be a contributing factor to Raynauds if that is what you have. Again I am wishing you good news from your doctor.