Treatment not working: Hello everyone, I was on... - MPN Voice

MPN Voice

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Treatment not working

Wadz
Wadz

Hello everyone,

I was on Hydroxyurea for a couple of months after my platelets reached 900 and it helped at first but after a while my platelets count kept raising again to 750 and during that period I suffered from horrible vertigo and nasuea and nothing helped. My doctor decided to switch to an injection of pegylated interferon I took it for 2 months and all the symptoms were gone. I was very optimistic about it because most people here always say it's very good especialy because am 24 years old. Sadly, after 2 months of interferon my platelets reached 1100 a number I have never reached since I was diagnosed. My doctor seemed clueless when I asked her why isn't the treatment working so did this happen to anyone? because it is very weird and I don't know why my body is suddenly ressisting the treatments.

also, I switched to anagrelide 0.5 two tablets per day two days ago. I don't know about this drug but let's hope for the best

Hope you all have a good day :)

Thank you

20 Replies
oldestnewest

Sorry to hear that you are still struggling.

Did you ever get a BMB? Are your other bloods okay, RBC and WBC?

Do you smoke? I read somewhere that smoking can cause inflammation which interferes with Pegasys pathways. And re inflammation, do you have a ‘healthy’ diet? Many of us here have made significant lifestyle changes and enjoyed real benefits.

It might be worth google searching ‘anti inflammatory diet’ and giving it a go just to see if it makes a difference.

The other thing we all do, especially those of us on Pegasys, is drink loads more water.

Best Paul

Wadz
Wadz in reply to Paul123456

Thank you Paul for your reply

I did not get a biopsy since I was diagnosed .. My doctor didn't tell me to do it so I assumed it wasn't needed. My blood tests are all normal except for a mild anemia.

I do not smoke and I have been on a diet for the last couple of weeks. It's really weird that the interferon is not working I will try to search more about it since my doctor is not very informative.

Thanks again :)

I've been on all those drugs. You are unlucky to find Hydrea doesn't suit you as I was on it for approx. 40 years with no side effects. Then recently it stopped working so well and Anagrelide was the next option. Didn't agree with me at all so next on the list was Peginterferon. This didn't help with the symptoms either and a BMB confirmed MF. Once I hit 65 this year I was changed to Pegasys and it has revolutionised my life. So the moral of the story is to not despair and keep trying the different options. A BMB might help to find the best treatment for you. Also, don't be shy of seeking a 2nd opinion. It was only after I did so that I'm now free of symptoms. Good luck - I know what it is like to confront this in your 20s.

Amanda

Wadz
Wadz in reply to asacker

Thank you Amanda for your kind words

I am a little confused is there a difference between peginterferon that you tried before and Pegasys or are they the same thing?

I kept doubting that there is something wrong with the medication batch since it was very very hard to find it in my country. I don't know really. I have heared a lot about Pegasys. Is there anything about it that makes it different from other pegylated interferon medications?

asacker
asacker in reply to Wadz

In my last post I made a mistake. I'm now on Jakavi not Pegasys. Jakavi is the trade name for Ruxilitinib. Pegasys does need to be kept refrigerated. But I do agree it takes a while for it to settle down and produce a change in your blood counts.

Sorry about the confusion, Amanda

Wadz
Wadz in reply to asacker

I went to a different doctor 2 weeks ago and he suggested anagerlide and said if this also doesn't work the next option will be jakavi. I hope I don't have to take it to be honest because it is also not easy to find where I live and would be very expensive.

Thank you. I am glad to know that jakavi is working well for you

Pegasys is a slow acting drug, two months is definitely not long enough., if you search on here you will find that for many people it takes months to start to work. If your doctor is clueless do insist on being referred to an MPN specialist, Maz may be able to tell you who is your nearest. Good luck.

Wadz
Wadz in reply to francesb

I tried to search about it a lot but all the recommendations led to my current doctor. I do not think there is MPN specialists in my country. At the first 2 visists after interferon she did tell me that it's going to work it just takes time after the third visit she told me that this is not working and it should have had an effect by now. I will search more about the drug to gather more info.

Thanks dear

Hello. It sounds like you need to get a second opinion from an MPN specialist. But given your comment about your drug concerns maybe this is not so easy. Where do you live?

You are so young, you have your life ahead of you and you really need the very best and most up to date advice about managing your MPN. Having a BMB seems an important step, not just to determine the exact nature of your condition but also to provide a bench mark for the years ahead. I’m assuming you’ve been tested for all the various genetic mutations?

Wadz
Wadz in reply to Ebot

I live in Egypt. According to my search there is no MPN specialists there and my current doctor is the expert in her field. Before I knew about her I went to a different doctor who was very clueless and didnt even know how to diagnose me and asked for many unrelated tests. It was very hard and once I went to my current doctor she asked for Jak and Calr mutation tests. I was posotive for calr. I assumed she is going to ssk for bone marrow biopsy then but she didnt mention it and I did not want to ask to be honest because I do not think it will be very pleasant.

Ebot
Ebot in reply to Wadz

Hi Wadz. I’m sure many people here will identify with your experience of ‘clueless’ doctors(!). However, there are also plenty of postings about awkward, but necessary, conversations with health professionals - questioning advice, discussing treatment options, requesting tests etc. It really is worth raising your concerns about a BMB. It’s pretty standard practice. You can do it in a way that doesn’t suggest you are undermining their professional opinion.

As for MPN specialists in your region. Check out mpnforum.com. It has a list of specialists recommended worldwide. I couldn’t see any in Egypt but there are a number in Israel. I believe there is quite a lot of research going on because of the prevelance of MPNs there. Good luck!

Ebot
Ebot in reply to Wadz

I realise maybe I misinterpreted your comment about the BMB. If you’re worried about the procedure itself, don’t be. It’s really straightforward. Sounds much more dramatic than it is! I’ve had two.

Wadz
Wadz in reply to Ebot

Thank you for your help I will check the forum out. I know I try to calm myself about the idea of the biopsy as it is expected that the doctor ask for it at any time.

Thanks again dear. Wishing you the best

Good luck with Anagrelide. I’ve recently been put on that along with 17 hydroxicarbomide a week

Wadz
Wadz in reply to Wyebird

Thank you dear. Good luck to you too, I hope it helps you reach good results.

Pegasys is slow acting and you may need more time on it. At your age, it should be first line therapy. Also a BMB is a must for proper diagnosis. Dosages can be adjusted as well. I was on 135mcg a week before it worked and am now on 45 a week and all counts are normal.

Wish you the best.

Wadz
Wadz in reply to ihavegotet

I think the reason it was not my first line therapy is that it is very hard to find it where I live. I had to call everyone I know untill someone managed to get the drug from the company as they stopped distruting it to the pharmacies. HU and anagerlide on the other hand are easily avialable.

Thank you dear. I am glad to know that your blood tests are okay.

I was successfully on Anagrelide for 29 years.

When that was no longer an effective treatment for me I started .45 mcg weekly Pegasys.

It lowered my Platelets immediately and after 6 months I stopped treatment (Platelets at 226). I was able to remain off it for almost 2 years. It crept up very slowly and hovered around 500 for several months.

Last CBC they were 575 so I will probably go back on .45 mcg every two weeks, but I have to give it some it some thought first.

We are all different...

Happy and healthy holidays to all my fellow MPNers :)

Bobbi

F62, ET since 1985, Jak 2V167F Positive, Spleenectomy 1985, Ag from 1989 to 2016,

Pegasys 6 months, no meds for ET for 22 months so far :)

Wadz
Wadz in reply to Bobbirobin

Thanks dear. Hope that your count will remain stable and healthy.

Happy Holidays :)

Hi Wadz, I have ET and am taking Hydroxurea and have NOT had a BMB. As far as I know if it it is clear from your blood tests that you have ET (eg. My blood tests show JAK2 mutation) you may not need to have a BMB. I will not have one unless it is necessary and that would only be I believe if my symptoms changed dramatically and it looked liked the ET had developed into something worse.

Good to read up on things so you can ask your doctor sensible questions. Many doctors are happy to discuss things with you as long as you ask in a respectful way. Best wishes, Elzbietta

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