just a little advice

[Staroftheday]

hi lovely friends I started pegsy injections weekly at 135mg I feel so tired the same as just before I got diagnosed last year my legs are sore in my groin I have got little ulcers under my tongue there are 4 there at the moment is this normal I get my bloods done today then speak to my doctor on Thursday.

[Cat1001954]

hi I’m on hydroxy and I get sores on my lips wish you better

[krotsida in reply to Cat1001954]

I had the same problem as you, I solved by brushing my teeth, gums, and tongue after every meal with a very soft brush,it work for me.

Have a nice week Cat 1001954

[Cat1001954 in reply to krotsida]

thank you so much x

[Grum1]

From what I understand that is a very high starting dose…I and others from reading other comments on various sites , have started at 45mcg for 4 weeks and then increased to 90mcg. Dosage is then adjusted according to blood results

[Staroftheday in reply to Grum1]

hi this medication has been gradually increased over the months I started of at 35 mg , hopefully we’ll know more on Thursday x

[Wyebird]

hi, I had ulcers with Hydroxicarbomide 5 little uns at the same time once. I’ve been on Peg for about 18 months now and yes I get them. I think no worse no less, luckily not very often and they are not hugely troublesome.

As for Peg and fatigue, before Peg my haemoglobin went down to 93 now it hovers about 103 to 110. That’s a huge difference for me so I’m thrilled. I feel so much better.

Do you keep a copy of your blood test results? Maybe your white cells are low or even something else is out of sync.

I take magnesium and try and eat a Mediterranean diet and I swear by honey.

Do discuss with you our heamo. Good luck

[Exeter21 in reply to Wyebird]

well done yes I am with you on honey 👍 I have it daily from friends hive . I also feel fitter on interferon just trying to get low dose right currently 👌

[NCB1983]

Hi Staroftheday,

Sorry to hear you're not feeling quite right.

I am on 135mcg per week as well. I started on 45, went to 90, then 180 and then down to 135mcg. Perhaps speak to your haemo about ramping up to the dose?

I have not experienced the sore legs or ulcers that you mention, again I would speak to your haemo - they could be related or they may be something else.

Tiredness however I can relate to. But it is hard to know if my tiredness is due to meds or environmental factors if I'm honest.

As you have an appointment coming up on Thursday I would write down all your questions and have them handy during your appointment.

Good luck!

[ainslie]

that seems a very high dose, usually patients start at 45mcg and build up ver slowly

[givingITMybest]

I also get mouth sores sometimes and have found taking the vitamin lysine really helps. Usually just one or two takes away the sores. Namaste

[Styleesteve]

Hi, this is my first day on this site, i am sorry to hear about your tidiness and sore legs. I am just wondering please if yourself or anyone else can give me some advice or experience about the Pegasys injection. My Hematologist wishes me to start taking it, but at the moment I feel so healthy and fit. I am 60 am physical and run a business. I have in the past 3 months started on a really Strick healthy regime, no more alcohol, red meet, full on juicing supplements and so on. It's made a difference, I am off my blood medication, I am off my anti-depressants and my Platelets have slightly fallen my past 3 blood tests. So, I plan to have another 4 fortnightly blood tests and if they show a down would pattern then I will just keep doing what I am doing, if they go up and down, up and down like the past two years then I might consider starting Pegasys. I would really value your answers and feedback thanks.

[hunter5582 in reply to Styleesteve]

Hello and welcome to the forum. You are asking a question many of us with PV who are mostly asymtommatic ask ourselves. Is the intrinsic risk of taking the medication worth the potential benefits. You do not indicate whether you are using venesections to control the erythrocytosis but that is the standard for pre-60 PV.

There is not a right or wrong answer to your question. The standard protocol calls for starting cytoreduction for PV at age 60. This is when we know that the risk for thrombosis starts to increase. Most MPN experts follow the standard protocol, but not all. Some use a more individualized approach. My MPN Specialist told me, 65 is the new 35.

I believe you indicate that your PLT and WBCs were trending up. This would also be a concern. Glad to hear the PLT started to head the other way; however , note that PLT can vary by 100 in a single day. It is long term trends that matter.

I did not start on the interferons until I was age 66. I tried hydroxyurea for a while but i was interant and refractory to it. I did use venesections for several years but the long-term side effects from chronic iron deficiency were worse than the PV symptoms. I am also at increased risk for progression due to another non-driver mutation (NF1).

I decided to start on Pegasys about 19 months ago. My goals were better symptom control and reducing risk of progression. I switched to Besremi about a year ago. I feel better now than I did when I was using venesections. The Besremi has reduced my JAK2 allele burden from 38% to 9%. I have ben in a complete hematologic remission for 16 months, but did just have to have a venesection - the first in over two years. I am very pleased with my response to the interferons. My only regret is that i waited as long as I did to start on them.

Suggest you think through what your treatment goals are and what your risk tolerance is. What are you willing to risk to achieve your treatment goals? What is your preference for how you will manage your treatment? There are excellent resources available now to gather the information you need to make a good decision. It is also a very good idea to get a second opinion from a MPN Specialist about your care plan. Here is a list if you are interested.

mpnforum.com/list-hem./

All the best to you as you move forward.

[Styleesteve]

Hi there, thanks so much for your detailed reply. I started doing venesections at the very beginning over 10 years ago, but they didn't seem to work. So I went on Hydroxyurea. That put me hospital with a high fever, so they took me off that, then in 2012 I participated in a trial drug which took my 1200 platelets back down to 500, but because there were some major brain swelling side effects experienced by some of the participants they stopped the trial, since then I have just been on Agrylin. My count has been hovering between 600 and 700 . I feel so good in all areas at the moment and I just want to give my health kick a go for little while longer. Thanks again.

[Hmmm79]

I couldn’t tolerate interferon, I’ve never felt so ill my life, and that was only on 90 a week. Could they maybe lower your dose a bit?

[Staroftheday in reply to Hmmm79]

Hi thanks the doctor has lowered my medication to 90mg as from next wk I have felt awful the last couple of days my legs and back are still hurting, I had another blood test on Thursday that said my potassium was high so had to repeat the test on Friday afternoon so now I will have to wait till Monday for any news x

[Hmmm79 in reply to Staroftheday]

Fingers crossed for you, I wasn't too bad on a lowered dose, so maybe they can x