Experiences with

Interferon beta-1a

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

Hi has anyone been able to source interferon from any pharmacy in Ireland as I'm off now as in shortage again platelets 964 only on aisprin hospital are happy enough to keep me monitored for now tks to everyone in advance

Hello Friends, After careful consideration, I decided to join this trial. Since I was diagnosed in 2017 I have been on Hydrea, Interferon and Angerlide. Recently my platelets spiked over the millions so my MPN Specialist, Dr Gotlib at Stanford, suggested this trial. I was hesitant at first but the more

I did my first injection of 125mcg of Besremi on Sunday. I was on 135mcg of Peg Interferon. I wanted to try Bes during the shortage to see if it suited me better. So far I’m really not sure. It seems to have caused me stomach and intestinal issues. I have terrible diarrhea and really smelly gas. Immodium

When I was 49 I had a hip replacement and a year later I felt off so the doctor ordered a blood test in which it came back my platelets being too high. (1000) I was sent to a specialist straight away and was put on aspirin then Interferon. After an eighteen months I stopped taking them but eventually

Hi again, I started with Besremi (100 mcg, biweekly) 8 weeks ago and so far there hasn't been any visible effect on my platelets count - still in the range of 700k. My other blood counts have been in the normal range from the beginning (ET/prePMF, Jak2+, high-risk). I havent been on any other medication

I started the medication back for 3 days and started getting cramps,massive cramps so I quit it again. My platelets are around 900,000 at the moment. I have a oncology appointment Thursday morning to discuss this. I can't take interferon so what could I ask the Doctor?

Hi all After some time on Pegasys Inteferon, my haematologist agreed to retest my allele burden. When diagnosed it was 14%, now less than 1%. (Blood, not BMB)Yay! Meeting to discuss soon. It's only with thanks to this forum that I learned about and pushed for Pegasys Interferon near the beginning of

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