I have ET (+ bone marrow fibrosis). I changed from Anagrelide then back to Hydroxycarbomide (which I don't get on with at all so they just tried it again) to eventually Pegasys Interferon Dec 2023. My platelets were very erratic but at my last blood test were finally down to just over 500 middle of December. I was on 90mg weekly of PEG Interferon.
My hospital in Northampton has completely run out of Peg and my last injection was 13 December 24. I was called just before Christmas to say that I'd be moving to Besremi and delivery to hospital would be 3 January 25 and I should come and collect and inject ASAP. Called twice on Friday and still no delivery. As Anita had said previously, are there withdrawal symptoms? I have have bad night sweats (so not sleeping well) and very very tired with back and lower back pain. Just feeling rubbish really.
I have pulmonary sarcoidosis (that came first in 2006) and I am treated with Azathioprine (immunosuppressant) and Depo Medrone steroid injections every 6 months.
I know it's a bit of a weird one to ask but if I'm on immunotherapy ie PEG Interferon which boosts your immune system but I am also on medication that suppresses my immune system shouldn't they cancel each other out or does it just mean Peg will take longer to work π€
Haematology at Northampton and Rheumatology at Royal Free London are both obviously aware of my conditions but it just makes me wonder?
Tbh I'd rather not take any of the meds. My mood is definitely very low with just general apathy and irritability when I'm on Peg so happy for the break.
As mentioned I don't tolerate Hydroxycarbomide and I have recently had a basal cell carcinoma removed - had to have a skin graft π« so they won't put me back on that as I was told it can increase skin cancer risk (btw they believe the BCC could be a result of being on Azathioprine for sarcoid that increased my risk). The galling thing is that for years I have applied SFP to my face daily, its even in my moisturiser and we only get strong sun a couple of days a year π).
Anagrelide was my drug of choice as I had no side effects but platelets started to become erratic and after a bone marrow biopsy they discovered I had Grade 2 fibrosis (which may have caused it) they won't put me back on that π
Are there any other drugs?
Sorry for the long message