Hello hello MPN friends l have not been on the site for awhile as l began new meds interferon ten weeks ago and at the time needed to sit quitley with what this means for me. Three weeks in l struggled with intense migraine and spent most of my time on pain killers with my duvet over my head. The migraines have settled and been replaced with regular headache that l now manage with paracetamol (phew )
As as somone who has sports injuries and many wounds from operations over the years. I notice these old injuries and wounds seem to now flare up more easily and have become more painful. Could this sensativity be a knock on effect from new meds?I'm wondering if any MPN friendse can relate to my experiences
Hello again. Glad you decided to post about your experiences with Pegasys.
Everyone's experiences with the meds used to treat MPNs can be quite different. PEG helped me achieve a rapid hematologic remission with minimal adverse effects. I experienced mild leukopenia and some rash/itching. The itching is easily controlled with a daily dose of Claritin. I recently found out that in 18 months my JAK2 allele burden has been reduced from 38% to 9%. On the whole, I am very pleased with my experience with the interferons (Pegasys then Besremi).
The way I look at it is that in treating MPNs we are making some fundamental changes in how our body works. There can be consequences, positive and negative. We always have to weigh the benefits of any treatment against the risks and adverse effects. It is a balancing act to get things just right in each case.
Migraines/headaches are a known Pegasys adverse effect. Hard to say about the old injuries flaring, but arthralgia and myalgia are also known Pegasys adverse effects. Some do find that their body adjusts to the medication and the adverse effects fade with time.
I'm on Besremi. On the pains, I have nerve damage (Brachial Neuritis) from flu vax that started last month. If your pains are of a nerve type there are meds that can help. My neurologist has me on a low side effect med that helps at night.
He says the IFN has nothing to do with the injury.
Separately there is evidence that Acetyl L Carnatine can help with nerve troubles. I am sensing a benefit since I started it, pain has gone from 7-8 down to about 3.
But if your pains are not nerve related, this is not likely relevant here.
-I am still pro vax and will continue to get them, but will get a different type next time.
My Dr Rx Gabapentin for me. I looked up Pregabalin; it's a similar agent. Both seem effective, one report has Preg being superior, another points to Gab as 1st line. I guess my Dr made a deliberate decision. He said it is low risk, with min toxicity to the liver and kidney. I assume Preg is the same.
It's good to know there are medications for this condition.
hi that’s the problem with our MPN. We never know what our aches and pains are related to. I was active and like you I’ve had ops to combat the wear and tear on my body.
I’m 67 and I’ve start to accept that it’s ok to slow down and that my sciatica in both hips is not Peg related. That’s life.
Hi Wyebird best for 2023 lm seeing my consultant next week unsure what's available to me besides Pegus Interferon. I empathise with you l was also very active before thrombotic event in head 4 years ago. I'm going to think twice about further medical interventions and as you say and graciously many injuries are indeed linked to the wear and tear of age.Best for 2030
hello Adiewon, so sorry that you have been having these awful migraines, and flare up of other pain, so very debilitating for you, it would be wise to speak to your haematologist about this to get his/her opinion on whether it could be the interferon, or something else. I hope you get it sorted soon. Best wishes, Maz
Hi Maz dear yes my hematologist is keeping a sharp eye on my symptoms lm well pleased the awful migraines have disappeared blessed be.All the best for 2024.
I had the blinding headaches so bad I contacted MPN expert for advice . I was on 45 weekly. She took me off it completely as obviously too strong dose for my body. Will start on 45 monthly next month & see how it goes . Our body soon tells us it’s not good. Now off it feel brilliant . I do have old sports injury that is very painful but seeing a specialist to get to cause . 👍
I read your post whilst I am dealing with a bad pain in my right leg. I am also on Pegasys and like you wondering where this pain comes from. Will speak with doc and investigate. Hope your migraines are gone for good and that you feel better soon.
so sorry that you are having so much difficulty. I have been on Pegasys for 5 months. I started at 25 every 2 weeks and gradually moved to 30 and then to 35. Perhaps you could discuss lowering your dosage with your doctor as an option. I wish you the very best.
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