unusual symptoms

[Grendall]

Hi all,

I hope everyone is doing well or as well as can be….

I am also on a ET forum on fb and asked a question, therefore just trying to get any further info from here before my appt next Tuesday.

So for what I would say has been a period of a good year now but recently very more frequent. I keep having episodes of (all at once) and out of nowhere, getting stomach ache, having to go to toilet, profusely sweating (literally dripping) and then very violently vomiting, to the point I nearly pass out.

This seems to be occurring 2/3 days after injection out of nowhere and with no warning signs.

Earlier this year I suggested to my nurse to reduce my dose due to regular chills etc after administering my dose as it was disabling me for a good few days per time (this worked)

I have been on interferon now for a couple of years with varying doses over that time, I am only now administering 65ml per week.

My query is, has anyone else encountered this sickness/diarrhoea and profuse sweating and passing out after administration?

I am wondering if my body is now rejection the interferon!

Any feedback would be of great use

Thank you in advance

[Scottishterrier]

Hi please can I get an et invite for Facebook I have et jak2+ since 1994 the only problem I have had was a hepatic infarction to the liver in 1999 I am on one hu a week and also have hyperthyroidismStay safe

Scottish terrier

[Grendall in reply to Scottishterrier]

Hi there,

I don’t think I can invite you but if you type in Essential Thrombocythemia, there appears to be 2 sites and you just click on ‘join’ and then you will see posts from people like on here, good luck

[ainslie in reply to Scottishterrier]

My 2 cents is the info and quality of posts and responses on MPN on Facebook is not as good as this forum or some other forums, that may be an understatement

[Scaredy_cat in reply to ainslie]

very true. Healthunlocked is much better

[Grendall in reply to Scaredy_cat]

I totally agree actually, I was just trying to use it for any similar experiences

[GardNerd in reply to ainslie]

I totally agree with this - especially the part that your assessment is an understatement. 🙂

[hunter5582]

What you have listed are all possible direct side effects from Pegasys. You mentioned a concern about pancreatitis on your other thread, which is a possible but rare complication with Pegasys. If present, pancreatitis would be a contraindication for the medication. Since you have a valid serious concern, this should be followed up urgently. While the side effects may well be directly from the Pegasys or another cause, you would not want to ignore a potentially more serious underlying issue. Your MPN care team can initiate the assessment but may need to refer you to another specialist.

[EPguy]

I experienced the passing out part, I hit my head hard and didn't even know till the scar showed up. You can see details in my post Last Dose. You don't have the Sx I did/do, but with a sudden extreme deterioration you do want to rule out emergent autoimmune (A-I) disease ASAP along with the direct effects Hunter refers. Existing or increasing A-I is another contra indication in the IFN label.

You can also see the list of A-I test I got in another post; your Dr may suggest others for your GI related complications.

You may want to hold off on further doses till the Dr meeting. Is your Dr well informed on IFN?

[Wyebird]

oh no! Considering you gave been on interferon for a while this is unusual. I think your heamo needs to know.

Good luck

[Exeter21]

it sounds like you need dose reducing. Speak with an MPN for advice at Guys Hospital local hospitals not good on advice. I am on Peg Interferon originally weekly 45. Made me feel awful & couldn’t function . MPN reduced it to 45 monthly & been great on that dose for 2 years now & readings all in range. . Interferon is very slow acting but quality of life is important & the sickness etc is your body telling you it doesn’t like it. I am afraid I would have reduced the doseage myself when I was first prescribed if MPN had not agreed.

Our bodies all react differently but only an MPN is expert to help you . 👌

[ritaandscooter1]

OMG!! Grendall, these are serious warning signs that something is wrong. If these symptoms are happening since you started Pegasys you need to speak to your haematologist. It sounds to me like your body does not like this drug at all. Just my 2 cents. I lasted less than 2 months on Pegasys. Best wishes........Kerry

[Exeter21 in reply to ritaandscooter1]

Doseage related from my similar experience. Dose reduced symptoms went 👍

[Grendall in reply to Exeter21]

thank you. I have been told to inject fortnightly and see how I go

[Angelinagaffer]

The first impression I got when reading your post was:- it sounds like Gallstones, maybe a trip to the GP or AEBest Wishes 🙏

I hope you get an answer and feel better soon..