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 🤔
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 😫 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 😄).
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 🙁
Are there any other drugs?
Sorry for the long message
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I have also had a bad time since Pegasys became erratic. Like a seesaw between side effects and withdrawal symptoms - brain fog, apathy, anxiety etc. HU, anagrelide and interferon are the main three treatments, there is an older one, busulphan, that haematologists prefer not to use these days.
There is a trial for a new drug (Bomedemstat) at some hospitals in the UK - could you investigate whether a hospital near you is participating and whether you would be eligible to join it?
Thank you, I will ask my haematologist about the new drug. I am meant have an appointment with them on 13th to see how I'm getting on with Besremi but as I haven't even started it yet it may be podlstponed. Really appreciate your response 😊
It won't be available for prescription for years yet. NICE will need to evaluate the trial results before authorising it.
The trial puts half the participants on the trial drug and the other half on "Best Available Therapy", which means what you would have been prescribed anyway. So if you join this trial you have a 50% chance of getting the trial drug, and a 100% chance of being closely monitored and looked after. Loads of visits to the trial hospital is the downside, depending on how far it is.
It's interesting. We all have different perceptions of risk, and different tolerance of different kinds of risk. I am with you in that my preference would be for no drugs at all, but unfortunately that is not risk free either! We each "pay our money and takes our choice" as the saying goes.
This is a question that needs to be reviewed with a MPN Specialist and a Rheumatologist. You need professional advice on the risks of potential interactions that need to be balanced with the benefits of these medications.
azathioprine (generic) + Pegasys (peginterferon alfa 2a) Monitor/Modify Txmonitor CBC: combo may incr. risk of myelosuppression (additive effects)
azathioprine + ropeginterferon alfa-2b Avoid/Use Alternativeuse alternative or monitor CBC: combo may incr. risk of serious infection, myelosuppression (additive effects)
ropeginterferon alfa-2b + methylprednisolone Avoid/Use Alternative consider alternative: combo may incr. risk of serious infection (additive effects)
In addition, there is this interaction
azathioprine + methylprednisolone Caution Advised caution advised: combo may incr. risk of serious infection (additive effects)
I would not take these warnings to mean that you cannot combine these medications. They do indicate the need for close monitoring. Hopefully, your hematologist and rheumatologist are already closely collaborating on your case. If not, this interface needs to happen ASAP as you change your medication regimen. It is often necessary for us to serve as our own case manager and to be our own best advocate. We need to ensure that the needed collaboration occurs to ensure an optimal outcome.
Thank you so much for taking the time to reply. The hospitals do not communicate that well so it does concern me. I was prescribed hydroxychloroquine by rheumatology and just happened to mention it to my haematologist about a month later at my appointment and she told me I must stop it immediately as it was not recommended to take with the Anagrelide I was taking for ET at the time. It was a case of 'Just thought I'd mention it' thank goodness I did! I think the combo could have affected my heart - can't remember the actual details. Hopefully I'll get to speak to my haematology consultant next week 🤞
Unfortunately, lack of communication between providers is all too common. A shared electronic health record system helps but does not resolve the problem. That is why it is so important for us to serve as our own case managers. In order to ensure optimal care and reduce risks, we must often be the conduit for sharing information. I have a great care team, but they operate in different systems. The only way information gets relayed is if I do it. I make extensive use of patient portals, take written agendas, medication lists, and copies of labs and reports to all appointments. I also crosscheck any new medication with my current medications myself. I have a professional-level epocrates account, the same one some doctors and pharmacists use. It also checks for interactions with supplements. A few other good interaction check resources are drugs.com/drug_interactions... and for supplements reference.medscape.com/drug... .
It’s a shame you are not fine on Peg Interferon as I have had great results but I did have to get doseage corrected as I felt like you originally. Moving me to monthly injection I get no side effects however yes now the shortage I will probably move to Besremi.
The doseage of the drugs is the problem if I received too much my body rejected it. We are all different . But I sought advice from MPN to get doseage corrected. Haemotology do not have enough knowledge on our drugs or MPN diseases.
Julia . Ps I take HRT patches for the sweats & works well.
I am fine on Peg Interferon really. Its just the shortage that's made me think about other drugs. I was told today by the hospital that the Besremi or Interferon still hasn't been delivered but they are hopeful it is today, so 🤞 I'll get it by tomorrow. I haven't had any since 13th 😬 but I'm sure that's fine. I do wonder in the future I should find an MPN specialist. I do love my haematology consultant though.
Re HRT I became menopausal at 41 and I'm 60 this year so not sure about starting it - is it too late???
HRT patches do help I am sure they won’t refuse you trying. Yes my supply is same hit & miss on dates but being rationed so we can get it or Besremi. Good luck 👍
Hi, so I’m on Ruxolitinib which has worked well for me. Anagrelide will progress the fibrosis faster as this has now been proven to be the case. I was on Anagrelide. Hope this helps x
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