Break from Pegasys

[AndyT]

Interesting consultation today.

After an 8 week break from Pegasys my platelets have only increased from 298 to 366 and reassuringly my other counts have all increased slightly too, still all in normal range.

Tiredness and mood swings, which were the reason for trying the break, haven't changed much so I suspect Peg isn't the main culprit for those..!

Starting again tomorrow on 45mcg every 2 weeks, rather than 90mcg every 4 weeks, to see how that works - review in 6 weeks, with a view to trying to extend the interval again on this lower dose.

My haem feels that 90mcg every 4 weeks would work just as well but is happy to trial the lower dosage if I prefer.

No possibility of storing and using the other 45mcg from the prefilled syringe, which is a shame as it's wasteful ☹️

Has anyone else experimented with Pegasys dosage/frequency and found a good balance?

Next update to follow in 6 weeks..!

[piggie50]

Hi AndyT,

I'm not on Pegasus so I can't help with your question, but I hope you find a dose and frequency that suits you. You are always very helpful to others on the site so I'm sure someone else on Pegasus will get back to you.

Good luck

Judy

[tessa46]

Hi Andy

Your results sound promising. Good luck with your 45mcg trial, it would be great if you can manage with the lower dose. I am on 45mcg at the moment as a starter dose (have done 4 injections), I agree it does seem a terrible waste to dump half the syringe contents, poor NHS! My platelets are reducing, 900 to 700 after 2 lots of bloods, and I feel well. I do hope your tiredness and low mood improve, it's so hard sometimes to identify the triggers. Stay well.

[MPort]

Hi Andy,

I have been on Pegasys for PV for about 9 years. I have changed dose and frequency over that time. Even had a break.

I can't tolerate much above 45 due to aches and tiredness. So I vary the frequency. I am now on every 10 days at 45. I tried 2 weeks at 75 but didn't want to put up with the misery.

Having at 135mg syringe is my biggest annoyace. It used to be 180. I HATE disposing of 2/3 of dose. Every time I go I ask the prescribing person plus the pharmacy if it is available at lower dose. I so wish the NHS had the ability to get the manufacturers to provide different amounts. I know it is money driven but it is also huge waste of resources for NHS and the environment. I understand each injection is in the £hundreds but you can never get a figure.

but I am so grateful to have it. And it sounds like you have a very good haem.

Mairead

[maryv]

Hi Andy, there are 90mcg syringes available in U.K on NHS. I now live abroad so have to get a private prescription in U.K and pay for the syringes. And they do, in the same hospital pharmacy where I used to get my NHS syringes, sell 90mcg. With correct hygiene procedure you can get 2 45mcg doses from one syringe also. I have had this confirmed by several doctors "off the record". Roche has to be careful in case of problems caused by careless hygiene etc. Hope you get on well. I too am currently experimenting with doses and will be interested to hear how you get on . Currently on 45mcg every 2 weeks but am going to extend to 3 weeks.

Best, Mary

[AndyT in reply to maryv]

Thanks Mary - my syringes are 90mcg so could theoretically do 2 doses. I think I'll use a new one each time for the moment but may look at reusing if 45mcg every 2 weeks becomes my long term solution.

[Beartime]

Hi AndyT

It's great to hear from other people also on Pegasys and this balancing act of dosage and frequency and syringe sizes.

I have been on Pegasys for 5 years, prior to that on Interferon (Intron). My Pegasys dosage/ frequency has kept changing due to suppression of the white cell count & neutrophils.

Since Spring of this year I have felt tired/ sluggish, looked pale & dark under my eyes. Dizzy spells have been increasing, diarrhoea, minor infections and thyroid count just outside the normal range. All my other blood counts look normal. Three weeks ago I stopped the treatment in agreement with the Haematologist. I am now 7 weeks without treatment. Sadly my symptoms so far haven't improved either. The plan is to review in 3 months time. My last platelet count was 464 on 45mcg at 5 week intervals, which is a really good count for me. I'm hoping that the platelets stay low & that I don't need to go back on treatment. I've read that some people go into remission after taking Pegasys. My count 6yrs ago at the start of treatment was 1550, so the treatment is working for me.

Good luck & keep in touch.

By the way I was also using 90mcg & having to dispense half away.

Beartime

[Anita53]

I live in the UK and have PV. My consultant told me I could not change from Hydroxycarbomide to Pegasys without starting on the old for of Interferon first and if that wasn't ok he would apply for me to go on Pegasys. Down to the cost of Pegasys I should imagine. Has anyone else had to do this

Anita.

[AndyT in reply to Anita53]

I was lucky to be offered Pegasys straight away but that seems to vary by UK region, depending on funding. Could you seek a referral to a specialist in an area that offers better access to Pegasys? I am in Leicester and see the haematology team at LRI.

[MPort]

Could I pick up on one point mentioned above. Reuse of needles is not recommended. Nor is second dose from syringe encouraged due to having no preservative in it, say the manufacturers. However some people buy extra needles and take a second dose from the the syringe. The Diabetic Society have an online service that sells them. You can even buy a smaller needle size that fits the syringe. But Haematologists do not recommend multiple doses. Mairead

[AndyT in reply to MPort]

Thanks Mairead - I'm not going to reuse anything at the moment and certainly wouldn't reuse a needle even if I try at some point in the future to reuse the rest of the 90mcg dose. Thanks for the tip re buying needles from the Diabetic Society, as getting the right needle could be the first hurdle..!

My haem certainly doesn't recommend using the second dose so I'll follow their advice for the time being...

[graymare in reply to AndyT]

A compounding chemist can divide your dose in two (or more) and present it in different syringes with different needles. I had this service when I was in hospital and had to have my Roferon a. It was done very quickly which was important for Roferon because it has to be kept cold. Not such a problem with Pegasys I believe. Ask around.

[Lab-Rat]

Hi Andy, I am sorry to read that you are struggling with tiredness and mood swings. It can take up to a year after stopping Peg for mood/fatigue to normalise. Since taking Peg I feel emotionally blunt, vague and tired. I am experiencing weight loss although there is no change to my appetite. I am on 90 mcg every 2 weeks and hoping to extend it to every 3 weeks. I hope you feel better on your lower dose.

[Beartime in reply to Lab-Rat]

Hi Yvettenaude

It was interesting to hear you say that it could take up to a year before the symptoms of pegasys start to ease/ disappear. Is this from your own personal experience or advice from your haematologist? Only eight weeks into being without treatment, I've got along way to go!

Beatrime

[Lab-Rat in reply to Beartime]

Hi Beatrime,

Pegasys is also used to treat hepatitis. Relating to this it was described in medical journals that for some hepatitis patients it can take months for mood to normalise after stopping Pegasys. I can't recall all the details but I think the dose is much higher for hepatitis than for MPN. When we stop our treatment we still have our MPN symptoms to cope with. Are your bloods such to allow a treatment break or were you suffering from side effects? I hope you feel better soon.

[Beartime in reply to Lab-Rat]

Hi Yvettenaude

Thanks for your reply. Yes I have read that Pegasus is primarily used for the treatment of hepatitis & at a higher dosage.

My bloods are within a good range at the moment - (3 weeks post treatment) platelets 464, WBC 3.6, neutrophils 1.8.

My frequency of treatment was every 5 weeks. I’ve noticed from blood results that my immune system is suppressed 4 weeks out of the 5 & whether this is having an effect on how I’ve felt.

(I stopped treatment 4 yrs ago temporarily due to WBC 1.8 & neutrophils 0.9 - I work in the health service & they stopped my patient contact, so it was affecting my job.)

I know the platelets will be steadily climbing but it’s how high the haematologist will allow them to go before recommending treatment again. (I don’t think they’ll let me go back to 1545). I have started to notice that I’m not as irritable, also confirmed by my other half!!! I think only time will tell if the symptoms are treatment related or the condition.

Really good to hear from you.

Do you have ET? How long have you been on treatment? Do you have experience unpleasant symptoms?

Beartime (Cath)

[Lab-Rat in reply to Beartime]

Hi Cath, I sent you a DM so as to not hijack Andy's post.