After having a hospital appointment on Wednesday, I’m was pleased to find out that my platelets are now down to 339 after only 4 months of 45mg weekly of Peg. So chuffed. They are only seeing me 2 monthly now instead of every month. Whilst I was there she tested my diabetic bloods as my GP’s haven’t given me any check ups since March 20. I had a phone call from hospital to say that my Hba1c has shot up. It was pretty good before Peg. Has anyone else had this problem? The doctor said that it’s not affected by Peg but that’s not what it says on the Macmillan website. It would be interesting to find out if anyone else has had this problem, and your thoughts on it. Waste of time going to my diabetic nurse at GP’s as last time she virtually told me I was obese and to lose weight. I was 8.7lbs!
Thanks in advance for any replies
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Jynx93
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Hi Jynx93, , just to say that's great news that your platelets have come down in such a short time and your visit to clinic extended 👏 , , it's a pity about your Hba level but I'm afraid I can't help with that as no experience of Peg , hopefully others will shed some light . Of course it could be unconnected but would be interesting to see if it went down if you stopped the Peg which I know you can't do. I wouldn't think your weight has any bearing except to the good being 8 and a half stone !
What is suggested to reduce the Hba or it is see how it goes. I would have it retested in case it's a blip, sometimes happens.
Thanks for your reply. I appreciate your input. I was just told by the consultant to make an appointment with my diabetic nurse at the GP’s. I think that I will get in touch with my Macmillan nurse first to ask her as my diabetic nurse probably hasn’t even heard of an MPN or Peg. Not to put nurses down as most are brilliant but my GP nurse doesn’t seem to know much about anything. Maybe I just have one that is in the wrong job.Hopefully like you said, maybe the test wasn’t accurate and I need it to be repeated.
I will give an update when I find out in case there are any diabetics out there having the same problem.
When on high dose steroids I developed Diabetes and had the help of a wonderful specialist diabetes nurse at the hospital so if it turns out that you need that support I would ask if you can be referred at your hospital because those nurses are in the right job. Hopefully you won't require their service.
You are correct about the possible link . Pegasys carries a caution if you have diabetes and can cause diabetes mellitus as an adverse effect.online.epocrates.com/drugs/...
That is not to say that this what is going on. The elevation in Hba1c could be unrelated. It is most certainly something to follow up on. Hopefully you can get the hematologist and the provider monitoring your diabetes to consult. If you do not have a MPN Specialist involved, definitely time for that as well.
Glad to hear the platelets came down. Hope you get the rest of it sorted out ASAP
Thanks for the reply. I haven’t done anything different to what I was doing before so it could be the Peg. I will ask my haematology nurse as she knows what she’s doing. I want to know what I’m talking about before I go to see practice nurse so that she can’t argue with me like she usually does.
Hi. This is really interesting. I was diagnosed with diabetes prior to diagnosis with Myelofibrosis. I brought the diabetes under control quickly with a limited carb diet to the point where the nurse said that I was no longer diabetic. I eased up on the minimal carb diet and maintained my hba1c level. Several months later I started Pegasys and after regular dosage increases up to current dosage of 90mcg/week my hba1c has now shot up again and I am really struggling to bring it back under control. I have asked both my practice diabetes nurse and haematologist and they both reject any connection between diabetes/myelofibrosis/Pegasys but I am not convinced
I asked my consultant and she said it shouldn’t cause a rise in Hba1c but on the Macmillan website and other places it says that it can make it go up. I’m convinced it’s the peg as mine has been diet controlled for 11 years and staying fairly stable until the last few months.
That’s interesting as I’ve been struggling to control my HbA1c over the last couple of years and thereby avoid developing Type 2. I’ve been on Pegasys for 6 years and wasn’t aware of the link with diabetes - another question to add for my next appointment..!My HbA1c tends to run between 5.8 and 6.1 - how high is yours?
Mine is 8.6 at the moment, before starting Peg a few months ago it was usually about 7. I’m diet controlled and have been for the last 11 years so there doesn’t seem to be any other reason why it’s gone up.
Hi Jynx93, I have the pleasure of being diabetic as well. When I spoke to the consultant last time about treatment going forward Peg was discussed, but not the preferred choice as “it can affect your control”.
Thanks for your reply. I’m sure it’s the peg doing it. The consultant said it’s not likely too but everywhere else says it does. I’ll just have to keep an eye on it and see how it goes I suppose. I don’t want to stop peg as it’s working really well for me.
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