Experiences with

Interferon beta-1b

A study about dementia, sorting inflammatory foods vs anti-inflammatory. I'm always confused about this topic because people have such wildly differing beliefs about diet in PMR. (I'm not a believer) The other thing, Jack Cush at Rheum Now said that alcohol is anti-inflammatory in one of his podcasts

Interferon beta 1b and I have the scarring to prove it. The wife likes to tease me about all the lumps in my butt. No soft fat for her to pinch. Ahh well this is life with a chronic incurable disease. I HOPE YOU CAUGHT THAT.There is no cure for this, no matter what somenody says.

Hi everyone I was diagnosed with PV about 11 years ago and have been on Hydroxycarbamide since with venesections from time to time. I have now reached the point where Hydro is not really working anymore in controlling my platelets and my red cells are much too low so my consultant suggested moving

I have read that interferon can cause heart damage, I have not had heart fluttering or high blood pressure until recently, not sure if an interferon side effect. Anybody else had this problem ? Interferon otherwise is brilliant for me in keeping platelets controlled. Haematology again have said BP

Whilst I’ve been on Pegasys and Besremi I’ve been asleep at the wheel regarding new potentially game changing drugs. Now that I’ve had to switch to Ruxo I’m more focused on other options if/when Ruxo stops working. I know there are quite a few new drugs becoming available but as far as I can tell

hello, I’m a 50 year old female with ET diagnosed in 2021. Platelets were high at 1500 so was prescribed interferon 135mg. I could only tolerate 9 months after suffering every side effect it could offer! This brought me down to manageable levels, just on aspirin until now. Platelets are at 2000+ so have

Hi does anyone know if interferon is still as hard to source as it was as my pharmacy is finding hard to get it in again 🤔Tks to all in advance .

Hi to everyone I just have a question I have been storing my pegasys interferon in my fridge we have been without electricity for 9 days and i am wondering can I still give myself this as I am due to take it the end of this month my pharmacist isn't sure that I can and my hematologist nurse is

Saw my consultant on Wednesday. Told her I was having a liver biopsy the following day. She told me to stop the interferon I was on immediately! I am injected every Sunday with 90.mg. Later I wondered why ( when they referred me to the Liver specialist 5 months ago) they didn’t take me off it then?

hello all! After many years of having just 2 phlebotomy’s a year, I now have had 4 in the last 5 months. We checked my Jak2 and it is now 90, up from 7 in 2020. 2020 we were taken off Pegasys, which I had been on for 12 years, because I got nhl. I have not been on pegasys since. My counts have slowly

Hi all, i have PV and have done phlebotomies for many years, prior to that and PV I was a blood donor. 3.5 years ago I went on Pegasys interferon and it went well and my bloods are good BUT since then I've slowly been loading iron. First the ferritin went up to 600. If I went vegetarian it would go

It appears that I’ve developed autoimmune issues whilst on Pegasys/Besremi (bad mouth ulcers and possibly Crohn’s in the lower oesophagus) so now have to switch to Ruxo. I know EP has switched to Ruxo and I think Hunter? I’d be very grateful to hear about other people’s experiences and in particular

Hi all, I've just had a call from the hospital pharmacy and apparently I'm being transferred to interferon alpha... I was on Pegasus. I'm just wondering if anyone can explain the difference? My haematologist didn't mention anything, it's the pharmacist who's told me and I've now got to travel to Doncaster

I have a possible Crohn’s Disease diagnosis after an endoscopy on Monday showed a 7 cm ulcerative patch in my lower oesophagus. My Consultant thought malignant but managed to get the biopsy results on Wednesday and suspected Atypical Crohn’s. Need a Pet Scan to confirm. My concern is that Crohn’s is

Hello all, I saw some members discussing the dosage of interferon previously, and those discussions have been very helpful. I want to share that when accompanying a family member to a medical appointment last week, the doctor talked about some recently developments. The doctor told me that the manufacturer

Hi Everyone, Does anyone else have a diagnosis of PV + early Mylofibrosis intermediate 1 with focal grade 2 or similar but normal blood test results? I am starting on interferon soon and I’ve been told I’ll need another BMB in a few months to see how it’s working as we won’t be able to tell from

This is a recent presentation br Dr. Hans Hasselbalch regarding the role of inflammation in MPNs and the implications for treatment. It covers quite a lot, including CHIP, MPN comorbidities and possibilities of combination therapies. Dr. Hasselbalch is a strong promoter of the use of interferons

This report came up on the Sjo forum. It's a large multi-center study. The top broad message is type 1 interferon alpha (IFN-α-2) levels are of particular interest in Sjo sub-types and prognostics. This is the exact one we take. HigherIFN-α-2 levels are negative prognostically. They suggest measuring

HI all- I’ve been asked by my haematologist to switch from hydroxycarbamide to interfernon. I’m quite anxious due to the side effects as have tolerated hydroxy quite well. Is anyone else on inter and can help please

Is it possible after 5 years on low dose 500 daily to become intolerant to Hydroxy? Platelets only down to 700s but am reluctant to increase while not feeling great. My GP thinks I have symptoms of anxiety but I also have an under active thyroid so it’s not clear cut. The thyroid issue is the reason