Pegasys side effects

[Dusty777]

I was switched from 500 Hydroxyurea/day to 90mg Pegasys every two weeks. The pain in hips and thighs is substantial - headache also, but not as bothersome as the muscle pain. Has anyone else experience this on Pegasys. Also, has anyone tried CoQ10 for muscle pain and has it work? Thanks

[gilded]

Hi Dusty. I’m on Peg interferon 90mcg fortnightly. The pain will abate / vanish soon. This is my experience.

[Dusty777 in reply to gilded]

Thank you Gilded. That gives me hope.

[ainslie]

one thing to consider is 90 is quite a high start dose, most start 45 weekly, that may help your body to get used to it or start even lower and go slow

[Dusty777 in reply to ainslie]

Ainslie, this is what specialist prescribed. I see her in two weeks and will find out if there's a way to go down to 45 every two weeks, instead of 90 - hoping the muscle pain is reduced.

[ainslie in reply to Dusty777]

45 a fortnight may be a good idea and even 45 weekly might be easier on your system than 90 a fortnight, I can never understand why some docs do high doses less frequently as opposed to lower doses more frequently,most experts believe in start low and go slow , however low and slow it has to be , usually there is no rush

[ciye in reply to Dusty777]

I have to agree 90 is a high starting point, I started weekly on 45 and gradually increased the dose 60, 90 and so on. I felt increase in slowly have my body a chance to get used to peg. I did find the bone pain reduced on peg.

[Janis12]

Hi, I am currently transitioning form hydroxy to pegasys. Started five months ago and I take 45mcg of peg every two weeks. I have suffered joint and muscle pain for many years and since being on peg the discomfort is now at a much increased level to the point that it now interferes with my regular exercise regime. I would have thought that by now it would have settled down but that does not appear to be the case. I am debating what to do, I see the specialist next month so will probably make a decision then. Perhaps you will be lucky and the pain will abate in time. Good luck.

[Dusty777 in reply to Janis12]

Thank you Janis12. I see my specialist in rwo weeks and will find out if dose can be lowered. The pain, albeit not extreme, is constant and starting to interfere with a good nights rest. Best of luck to you.

[Solyesh]

I experienced hip pain when I first started but started at a very high 180 bi-weekly before dropping it to current 90mcg bi-weekly - given the half life of Peg would rather do 45mcg weekly…the hip pain did subside after about two months (although now my flutes are tighter than they have ever been - wonder if there is an association)…

[Lasbrisas1]

Best thing to do is stop ALL SUGAR AND CARBS, my experience, now ok,... Did you know, one slice of White Bread has 4 grams of SUGAR...

I stopped Bread, Potatoes, Pasta, Rice Sugar Flour.

Only eat Wild caught Fish, plus , Veg, Salad, only Sweet Potatoes Beetroot, it has the Powerful Nitric Oxide, so good for you...

Hope some of MY TIPS helps you...

Good Luck Dusty

[Janis12 in reply to Lasbrisas1]

Wow, I would seriously waste away on that diet. I do only eat wholemeal and whole grain, home made bread etc. Tried sugar free for one year, no reduction in pain and I lost four pounds in weight (I only weighed 6st 12Ib at the time so could ill afford that). I do a lot of exercise so need the carbs. Glad it all worked for you though. Best wishes.

[Exeter21]

Dose related I would think . I was on 45 weekly & had aches but mainly awful migraine type headache. I never rarely get headaches before. Changed to 30 monthly by my MPN for body to adjust to drug. That worked & been on 45 monthly since no side effects whatsoever. I do drink loads of water & stick to anti inflammatory diets as much as possible & no dairy . All bloods in range now . Ask MPN for advice re doseage. It’s a very slow drug so taken 18 months for me but very healthy on the doseage .

Julia 👌

[Dusty777 in reply to Exeter21]

Thank you Julia. Will definitely speak to Dr. about dosage. The headaches, when migrainish, are debilitating. From everything I am reading, I do believe my Dr. did not give my body time to adjust to this drug. Glad your bloods are in order and you feel healthier - will also work on my diet!

[Exeter21 in reply to Dusty777]

Dusty it’s really important for the doseage to start low. I do not think many Drs or Haemotology consider the side effects if doseage not gradual. I contacted an MPN Professor Harrison at Guys London when my headaches started & she immediately took me off it . Gave me a break for a few weeks then onto only 30 per month . Headaches stopped & on 30 did not come back.

Moved onto 45 monthly & remained at that always . Interestingly the Dr I saw initially tried to start me on 90 but I refused as I had read that Peg should start low for body to become used to it.

I was so glad I contacted MPN for the experience . It’s a great drug that I no longer have any side effects from. I inject mornings not evenings. That way you are moving around & drinking fluids rather than sleeping .

Julia 👌

[Dusty777 in reply to Exeter21]

Yes, I agree. Today I had a migraine headache - 600 mg Advil did not touch it. I don't get headaches as a rule, unless I have the flu or bad cold (which, luckily I haven't had in years) so I have to believe it's this dosage. I was going to wait for my appointment in April, but I am emailing her now, before my next injection is due, to see if she will lower this 90. Thanks again for your help.

[Exeter21 in reply to Dusty777]

If your headaches are that bad it will be the interferon & just tell them you need to come off it or reduce it drastically until your body is used to it. However only an MPN can give you the correct information you need. Quality of life with no headaches is a necessity . 45 monthly works well but depends on your current blood readings . Do you have an MPN you can email , they are listed on this website 👌

[IKEALover]

Not sure if this will help but try 2 Excedrin Migraine next time for pain. Most of the time it works when I get hear is in from various causes. Only thing I take.