Update on Pegylated interferon and parastheasia

[Bobadog]

Hi

I wondered if anyone out there who is experiencing the finger and feet numbness using Pegylated interferon treatment ,has a noticeable reduction with these symptoms after reducing /stopping the treatment?

I have been taking Peg( 45 mcg fortnightly) since October ‘21

H/C now .41

WBC creeping down(2.9)which was not an issue pre Peg.

Monthly venesections are no longer required though which is great,as iron levels have improved

Transferrin saturation now 20(was 9)

But I now have more issues with fatigue,breathlessness,which I appreciate are common side effects with Peg,

Perhaps this is the natural progression of PV not just Peg treatment ?

I am still quite active,(walk dogs/swim)but probably take 50%less exercises.

The numbness is a real issue now with numbness,red stiff finger joints,and sore feet.

I am discussing my treatment on Monday with Prof H and team at Guys regarding

-reducing Peg,or stopping altogether?

-How long does the beneficial effect of Peg on blood counts last after the treatment has stopped?

Many thanks for sharing any other experiences regarding the numbness…and recovery from this?

Very Best wishes to all,

Bobbie

[ExtraFox]

Hi Bobadog, your experience of finger numbness is struck a chord! Since early last Autumn I have a constant strange wooden feeling in the fingertips of both hands which is especially noticeable when using a 'pincer grip'. Like you I have PV, diagnosed last Summer. I was put on Hydroxycarbamide, and I had wondered if the finger numbness was due to that - or the colder weather which doesn't help. I get achy tired feet too when standing around or doing everyday household chores, but it's OK when walking.

Overall it sounds like you have much more troublesome symptoms, and I hope you have a helpful session at Guys tomorrow. All the best.

[Bobadog in reply to ExtraFox]

Thanks very much for the reply.

I suspect these symptoms may be a cumulative affect of the Peg,or in your case hydroxy .

I shall enquire further tomorrow .

My sensation was fine until a month or so ago.

Perhaps it is something that is unavoidable ,and one just has to tolerate this?

Our treatment is certainly a balancing act between benefit and side effects.

However if there is a window of opportunity to reduce the dose,I am very keen to do so.

It would be interesting to hear if any of the Besremi users have experienced this neuropathy too,after using it for several months?

I will certainly update you after my discussion.

Thankyou and all the best,

Bobbie

[Hydranga18 in reply to Bobadog]

Have you had your B12 checked .. lack of can cause Peripheral Neuropathy… hope all goes well at your consultation

[NCB1983]

Hi! The numbness you’re experiencing has resonated with me. I am on 135mcg interferon, weekly and this winter (more than ever before)the tips of my fingers go bright white and numb (especially my index fingers, more on my right than my left hand). It’s really debilitating as it’s every day. Even when my body feels warm it can happen but it especially happens if I have washed my hands in cold water or if I am playing tennis. But it can just happen sporadically. I mentioned it to my Haemotology department about a year ago and they suggested I double the aspirin I’m taking. I’ve done this but it’s not helped. I have now asked for an appointment with my gp…. I will be really interested in getting an update from you, after you’ve had your appointment with Prof H. Thank you for sharing as it makes me feel less like it’s just me suffering through this symptom! As you mentioned, it may not be anything to do with the meds or the condition, I just want to know what to do to make it stop or just happen less often!

[NCB1983 in reply to NCB1983]

Got my hubby to take a photo so that I can show the gp

.

[Cakeface in reply to NCB1983]

That looks like it's possibly Raynaud's.

[NCB1983 in reply to Cakeface]

yes I think so too. One day I guess I the gp will phone and I can ask.

[Meatloaf9 in reply to NCB1983]

Looks like my fingers. Started 5 years ago when my Dx was ET and not not on any treatment and continues now that I am now PV and on HU for the last 19 months, no different. Best to you.

[Bobadog in reply to NCB1983]

Hi

You are certainly not alone ,and it is interesting to discuss these symptoms with other sufferers.

I shall let you know the outcome of my chat tomorrow,

Thankyou ,and keep up the tennis🤗,

All the best Bobbie

[Bluetop in reply to Bobadog]

Yes, I have PV and hve taken hydroxy for 7 years -this is something which has developed over the last 3 or 4 years -mostly in the winter. I shall be interested to hear the outcome of your consultation.

[Bobadog in reply to NCB1983]

Hi

After my consultation…

I am stopping the interferon,but perhaps that is due to my (comparatively)stable haematocrit levels ,but decreasing WBC levels over the last 4 months.

Prof H was not sure the paraesthesia/Raynauds was directly due to the interferon.

She suggested a rheumatology opinion,to eliminate other causes .

The peg has certainly stabilised my haematocrit levels very successfully.

I shall post an update on the paraesthesia change (if any) after a couple of months of ‘no treatment’

Also interesting to see how quickly the haematocrit rises again. …or not.

I think this is a trail / error situation ,but I’m willing to give it a go.

Managing lifestyle helps (food/strengthening back exercises/ minimise stress!!)

It’s easy to relax this when we are feeling a bit low and exhausted.

We all have different symptoms and side effects to deal with ,requiring an individual response from your consultant/Dr.

I hope things improve for you very ,very soon ,

Bobbie

[Manouche]

Hi NCB1983,

This is typically a Raynauds’ Phenomenon. I get it from time to time.

medlineplus.gov/genetics/co...

[Hidden]

I too suffer from this particularly when cold. It mainly affects my thumb and forefinger and my 2nd toes. Interestingly, I haven’t started medication yet but it’s ‘revealed’ itself since my haematocrit levels have dropped significantly.

I meant to say that I also have PV

[Bobadog]

Many thanks Flora.

My symptoms aren’t related to the cold weather ,as they are constant.

But interestingly,they are related to a significant drop in my haematocrit levels,

Thanks

Bobbie

[Orangeboykitty]

The photo of your hands is just like mine used to look. Sometimes my fingertips were multicolored....blue, red, white, purple. I was on Pegasys, 45mcg weekly, when this was going on. Am now on Besremi, 50mcg/2 weeks and gradually the numbness left and fingers returned to normal. It's quite a relief because I work with my hands a lot.

[Margaret2022]

Hi I started hydroxy last October and was taking one a day. It then got upped to 2 on Saturday and Sunday and 1 weekdays . After that I got a numbness in my finger tips also the aching in my hands and feet has become bad . I also get fatigue badly the trouble is I suffer from fibromyalgia which has these symptoms I was always a very happy lively person but it’s bringing me down 😩 I got my blood test today I hope the levels are stable would be nice if I could drop the intake too we will see. It’s good to chat about these things . Have a great day everyone 😀

[gvibes]

Hi. I have p-Vera diagnosed 2+ years ago and on Pegasus for 2 years. No pvera symptoms initially. Presently on 45/week. Blood counts controlled -no venesection in over year. I have the hand tingling and arm pain developing now. My interpretation is that this is a pvera symptom (which you will see on the list of symptoms) and not so much related to the medications. I believe the blood control by the pegasys does not relieve all disease symptoms. As we know, everything gets pretty fuzzy between disease and medication impacts. At higher doses of pegasys I noticed blurred vision, fatigue, leg pain etc that I attributed to the drug. Hope you figure it out. Take care.

[George1976]

In July 2020 developed neuropathy in my feet after 4 years of Pegasys 45mcg weekly but it was mostly weakness and not numbness. Eg: I cannot walk on my heels and tiptoes are impossible on right foot as well. My wbc was below normal for a few months at the end as well.

After this I tried stopping to see if I would have a lasting platelet reduction effect and get strength back in feet but the platelets came back up so I began taking injections again but less often. The frequency became more sporadic after I was advised to stop by a top MPN doctor at Johns Hopkins, he said basically that we don’t understand exactly how Pegasys works so I should stop since I was low risk with CALR ET. Weakness and numbness and pain along with dizziness, reflux, night sweats and weight loss ensued until i finally took my last dose of peg 2 years ago almost to this day. The last dose caused a wicked burning in my lower legs and i vowed to never take it again. Early on it was a great switch from palpatations of anagrelide but now it felt as if it had ruined me. My platelets topped out at 890 2 months later and I started Hydrea. Symptoms at that time were extremely intense flu like headaches and hearing problems. All this seems to have improved a bit with my platelets in low 500k range but weakness in feet has not improved. No more night sweats or reflux, hearing is normal and weight back up. Still not sure why platelets at 700-900k can make me feel so incredibly bad considering they were 1.8m 8 years ago and I felt fine.

A couple docs thought Covid could be to blame but I never tested positive until 7 weeks ago. Took paxlovid then and I think it may have helped end my reflux. Hard to know for sure.

One potentially useful note is that my CALR alle burden initially tracked down to low 30% while on peg. Then as my platelets became fully normal the alle burden went back up to 50% and the weakness came on.

Last week my doc advised not to try Besremi as it too has peg interferon, that I seem to be allergic to it.

[Mirror368 in reply to George1976]

do you have ET or PV? Your post is very interesting,

[George1976 in reply to Mirror368]

ET

[nor76]

Sorry to hear that. I am still on pegasy but there are no side effect except low ne in wbc. A little bit tired and lost appetite but not serious.

[bertthomas]

I have PV, confirmed Jan 2022. Only symptom I have is what folks in this thread are reporting. Numb, stiff, heavy, burning, tingling in both legs from the knees down, every day for the past year. VERY annoying but not painful. I've been on Pegasys for 11 weeks now, currently up to full dose of 180 mcg Pegasys weekly. Also eleven 500mg Hydrea capsules per week. Last HCT reading was 46.6 as I attempt to transition off of Hydrea to just Peg. Peg is certainly not kicking in yet. Also on Xarelto since last July's lung clot occurrence. Taking .25mg of Mirepex for the RLS/leg spasms that only occur when dropping off to sleep. I see an MPN specialist at the Mayo clinic 2 or 3 times per year. Just my $0.02 as I enjoy hearing other's experiences on this site. Thanks to all for sharing.