Hello hello friends all the best for 2023.

I just need to say it out loud I FEEL SUCH A FAILURE.

After the challengin time l had on Hydroxy I was determined l would cope with side effects from Pegusus Interferon low dose. This appears not to be the case so far 5 injections in, l have such pain usually in the trapezius /sternocleidomastoid which calls for high doses of cocodamol.

So much regular pain meds has resulted in chronic constipation. I've taken the usual laxatives but have a strong sence of the meds not reaching the spot if you know what l mean. I'm feeling very low right now a side effect others have experienced on interferon. Local GPs are not available for apps till mid January but l have reached out to the hematogist nurse who will gopefully respond soon .

Thank you

[hunter5582]

Sorry to hear that the PEG is also causing significant adverse effects; however, you are not the failure. The medications are. To put it in Thomas Edison's words, “I have not failed 10,000 times—I've successfully found 10,000 ways that will not work.”

Trial and error is sometimes part of the treatment process. So far, you have discovered two medication options that are not working well for you. This allows you and your MPN Care team to gather the evidence needed to determine a better care plan. Fortunately, there are still other options to explore.

Hopefully the hematologist nurse will respond soon; however, you likely need to consult directly with the MPN Specialist doctor at this point.

Wishing you all the best in the coming year.

[Hidden in reply to hunter5582]

Thank you Hunter wise and kind words. l will make make another appt with my consultant right away and talk with the clinical specialist nurse as soon as I can.

[EPguy]

So sorry to hear of your troubles. I'm on Besremi and having mild to severe neurological issues. But mine is near certainly from the flu vax I got two months ago. I had a rare auto immune reaction and have Dx of Brachial Neuritis. It affects some of the areas you note. It can start well after the vax and last for months or more.

I see you've had the flu vax a while ago. This is a very unlikely cause for you but have you discussed with a neurologist?

[Hidden in reply to EPguy]

Hi Guy l discussed the nerve damage to my thumb with my GP and may be linked to the Corona Virus and flu jab l had 2022. I do hope you are in recovery from the auto immune issues these are such painful condition and added to MPN can feel overwhelming and burdensome to say the least.Best regards

Adiewon

[EPguy in reply to Hidden]

2 for 2 on rare conditions is a pain. I am slowly healing if unevenly.

Is your thumb improving?

I got the covid and flu in opposite sides a week apart. So no doubt which one did it. I do recommend that method and I don't favor the idea of a combo shot they've been discussing.

[Hidden in reply to EPguy]

Hi EPguy we didn't (hubby and me) fancy the combo either but like you had the shots alternate weeks. The phereferal nerve damage came about after a severe bout of covid aQIV ( sdjuvanted quadirvalent) was the flu vac given out in the UK for those individuals aged 65 yrs.

Yes the nerve damage is still there although TENS pen does helps to manage it on the worst days.

All the best Adiewon

[EPguy in reply to Hidden]

They do say the risk of nerve damage (peripheral neuritis or PN) is much higher from getting the disease vs the vax that addresses it. Sorry you had that experience.

I will ask my Neurologist about TENS, I see it in the drug store.

In this reference "However, it (TENS) needs constant application.."

intechopen.com/chapters/65842

Have you found that to be true? Mine gets bad at night, typical for Brachial Neuritis.

Fortunately my pain no longer goes up to 8.

[Hidden in reply to EPguy]

Hi Epguy l use TENS pen when pain is at its worse and find releif for at least 2 or 3 days. But ouch I find its application painful and appy it fir around 20 clicks and its painful but worth it for me. Agree covid was the reason for my nerve pain.All the best

Adiewon

[EPguy in reply to Hidden]

Thanks for the motivation to look into TENS. I'll probably get one, it's not expensive.

[ritaandscooter1 in reply to EPguy]

I had a horrible reaction to the flu vax about 10 years ago so I don't get this shot anymore. Both my legs below the knee started swelling up and then went down to my feet......it was as if the flu shot exited my feet!! I went and had ultra sound done to make sure it wasn't blood clots which it wasn't. None of the doctors could figure it out. I knew it was a reaction to the flu shot. I wonder if out blood disorders tend to react with this vax? Kerry

[EPguy in reply to ritaandscooter1]

That is a strange reaction. Is it ok now?

I've been looking at all the adverse events and contra indications for the flu vax. On blood disorders the main item is the usual immune comp can reduce the response. There is one obscure contra with use of one with interferon gamma, but gamma entirely different from the alpha that we use.

I prefer getting vaxed as recommended, but I am a bit wary of the flu one for now. The measles and small pox and some others are/were no brainers since they work for life at near 100%. But flu is not nearly that effective, 50% at best from some recent info, and for just months, so the trade off is less clear.

[ritaandscooter1 in reply to EPguy]

There was no complications after the swelling exited my toes!! I get really weird stuff that is so different than the normal person who doesn't struggle with an MPN. For example I rarely ever get sick and have not yet contracted Covid. When I do feel something coming on........the symptoms are really mild and I sleep it off for a few days then it is gone. This happened this week, slight headache, slight fever, and extreme tiredness. Took covid test which was negative. I slept for several days and then whatever it was went away. I never seem to catch my husbands yearly colds either. Wonder if having higher than normal WBC's ups the immune system? Maybe there is a rare benefit to having higher WBC's? 😂 or maybe the daily emergency-c pack I take daily helps keep the sicknesses at bay! I agree with you about the pros/cons of getting the flu shot. Since I had a bad reaction from it and I tend to rarely get sick......it just makes sense not to get it. Our bodies react so differently from one another with how we respond to having an MPN and with the various treatment options. Very interesting. Take care......Kerry

[Mazcd Partner MPNVoice]

hi Adiewon2, so sorry to hear this, not very nice for you at all, I do hope that you get this sorted soon. Best wishes, Maz

[Hidden in reply to Mazcd]

Thanks Maz yes not nice at all however my body is sending messages loud and clear all l need do is listen and then sort it out.Best wishes

Adiewon

[nightshadow]

I would expect this to be so incredibly frustrating! I wish I could give some practical advice to ease the pain and constipation, but I've got nothing. (I am assuming you've done the warm prunes, etc. route as well as medications.)

But rest assured, you are not a failure. Some of us are only navigating puddles with our MPN's, you are navigating an ocean with yours.

If you haven't already, you might explore some meditation techniques. They don't help with pain (well, they might actually, but no guarantee) or the constipation, but they can help you cope with the situation until you can get a hold of your GP or MPN specialist.

[Hidden in reply to nightshadow]

Namasta friend lm unsure as to how well l would cope these days without my daily meditation practice. I spoke with my clinical support today who advised l should call 111 in the morning, as a medical intervention will help at this time.But thank so much for your support on this delicate matter.

Adiewon

[LittleLuna in reply to Hidden]

hi. Sorry to hear of issues with both meds.

For your pain, have you considered asking for a referral to pain management specialist? I had one and have to say it has been a life saver as with PV my main pain meds were contraindicated.

Many options and tools they will discuss. They gave me new nerve medication and I use tens machine as needed. It works for me.

I do hope you get some medical support for the pain control.

[RCBr]

Have you been doing anything repetitive that could caused the trapezium pain...I had that for several months a few yearsago....agonising I know...it was caused when I helped my daughter with a project that she was making. Lost the ability to lift my arm ...I hope you get it sorted whatever the cause is x

[Hidden in reply to RCBr]

RCB hello hello yes l think your right, l have a particular chair which I realised has very little support for my body so l try to make sure l don't spend to much time in it. Also my painting and drawing has to be limited to 2 hours twice a week nowadays. I have a meeting next week with consultant and the hematologhy team to talk about the way forward. All l know is that bone and muscle pain have gotten worse for me and are linked to my meds.Thanks for your response it has helped me to think about the upcoming meeting.

All the best 2023. Adiewon

[ritaandscooter1]

Do not feel like a failure and certainly listen to your body and reactions to various treatments. I did okay on HU but was only on it for one month because I didn't like the risk of skin cancer. I then was hopeful that PEG would work but my body reacted strongly against taking it....liver ALT shot through the roof immediately and I felt neurologically horrible...this was on a dose of 22.5mg which is half the dose of the regular 45mg!! We are all different with how are MPN affects us and how we respond to different treatments. My MPN specialist (Dr. Tefferi) has me on 2 aspirin a day and phlebotomy's which has worked for me for over 20 years. (62 years old now) I workout daily and don't have any other health problems. We are all completely different. Respect how your body is reacting and find a course of treatment that works for you! Kerry

[Hidden in reply to ritaandscooter1]

Thank you for your response l do seeem to have lost any self confidence l ever had. Can't take asprin because of wafrin mores the pity. I have a team meeting next week and totally no idea what is going to happen all l know P Interferon is not for me.Take care friend

Adiewon