Peg reaction

[otisthedog]

Has anyone had a bad reaction to Peg? 45mcg per week?

[hunter5582]

Some people certainly do not respond well to PEG. I have been on PEG for 5 months with no adverse effects at all. 45mcg is doing a good job controlling the erythrocytosis and thrombocytosis. Hope you the PEG works for you as well as it has worked for me.

[21Rosie in reply to hunter5582]

HiI’ve been on Peg 45mcg weekly now (reduced from 90mcg) for the last month - 3 months in total. Platelets down to 300 - great result.

Side effects for me have been headaches but this I can manage.

As you’ve probably read here so many others are very happy to be on Peg but of course need to be guided by their haematologist as well as their own research.

Good luck with it.

Rosie,

[Tronka in reply to hunter5582]

Hello hunter My name is jenny I been reading all your post and this is the first time I m writing

In March I went for a regular ck and they found out my platelets were high 530

After that it has been a rollercoaster doctors and more doctors

I’m 64 years old and they told me I have ET

Then I went for a bone marrow and they said I have masked PV

I never had high red blood cells not high white blood cell. My hemocreit has never been higher than 43 but I have low EPO 3

I’m taking 500 hu everyday no bad reaction to the drug

I have 0 symptoms only itching but itching I always had that since I was young

In my bone marrow they found I m jak 2 positive and my burden is 5.6 only

I have 2 mpn doctors one at Sloan and the other one at Cornell plus an hematologist from mount sinie

What do you think are my chances for me to

Progress or star getting symptoms with only 5.6 jak 2

Sorry for my English I’m Spanish speaking

Any advice for me to do

Thanks in advance

Tronka

[hunter5582 in reply to Tronka]

Hello Jenny. Glad you decided to post.

I can offer some thoughts, but please remember I am not a doctor. I am just another guy with PV who has done a bit of reading.

Like you, I am JAK2 positive. I used to have ET, but it progressed to PV. It was likely masked PV for some time before the progression was detected. MPNs can evolve and change over time. My original hematologist missed the progression when it occurred. It was 5 years after the progression that I got the right diagnosis. That is why it is so important to consult with a MPN Specialist. It sounds like you are already doing that.

It sounds like your care team picked up on your MPN status early in the process. Your bone marrow morphology must have made the diagnosis clear despite the lower HCT. This will allow you to make better decisions about your treatment.

I am glad to hear that you are tolerating the HU. Not everyone can. If the itching is PV-related, then HU would not be the drug of choice. Jakafi is more effective for this symptom. Do note that the JAK2 mutation appears much earlier in life than the main symptoms of the disease appears. If the issue is something like eczema (which I also get) then the treatment would be different.

If your JAK2 mutant allele burden is only 5.6% then that is quite low. People with ET tend to have the lowest, people with MF the highest, and people with PV in the middle. Note that this is a tendency not a hard rule. Likewise, people with lower allele burdens tend to have a lower disease burden.

Regarding your risk of disease progression, I would have no way to predict that. Roughly speaking, people with PV have about a 20% chance of progressing to MF/AML. That is a very rough number. It does not take into account things like non-driver mutations, which influence your risk of progression. I have one of those non-driver mutations (NF1). If you want to know more about your status, you can ask your care team about more detailed genetic testing like this MPM Myeloid Panel.

files.labcorp.com/labcorp-d...

My best advice is to not worry about what your odds are. Instead, do what you can do to improve your odds. This is my approach to managing PV.

1. PEGylated Interferon for cytoreduction. PEG is the only medication that is potentially disease modifying. There is good evidence that it reduces the risk of progression for people with PV.

2. Control inflammation. The JAK2 mutation causes our bodies to produce too many inflammatory cytokines. This causes many of the secondary symptoms we experience. Chronic inflammation also promotes progression and increases risks for other types of cancers. I use Curcumin, L-Glutathione, SPM Active, and diet to reduce inflammation.

3. Lifestyle choices to improve health and reduce risks. Exercise and healthy diet. Avoid exposure to toxins in your food, beverages and environment. We cannot afford to expose ourselves to the agents that cause cancers and possibly promote MPN progression. Also - I lost 50 ponds and feel much better.

4. Manage stress effectively. Stress damages both the mind and the body. It can promote MPN symptoms. We each have to find our own way. This is my list.

1. Support from family, friends, and faith community.

2. Support groups/forums for MPNs/NF (my friends and MPN/NF families)

3. Maintain your sense of humor and find ways to have fun no matter what.

4. Surround yourself with things that are positive and lift you up.

5. Mindfulness practices - I practice Qigong.

6. Say the Serenity Prayer every day and take it to heart!

I hope that helps. Ultimately you have to decide for yourself what treatment approach will help you reach your goals. You can work with your treatment team to identify your treatment goals then make decisions based on your preferences.

[Tronka in reply to hunter5582]

Thank you so much hunter for all your kind words

[Hopetohelp]

I haven’t but I drink loads of water before, during and after injection else I get a headache like a hangover. Hope any problems get sorted for you

[NCB1983 in reply to Hopetohelp]

Same here - I am now in the habit of drinking at least 2 litres per day

[ainslie]

You may get better answers if you mention which bad re-actions you had, it made me very itchier which is not so common, it also affected my mood which is a bit more common, I lasted 3 weeks which is very unusual, also some side effects go away with time

[havashan]

I have been on Peg (45 mcg) biweekly for 3 months. It has caused the psoriasis I have to worsen. Otherwise, no side effects and bothersome symptoms like tingling and numbness in extremities has gone way. I am hoping I can manage the psoriasis while on Peg as I otherwise feel better than I have for quite a while.

[Jynx93]

I’ve been on the same dose of peg as you for about 5 months now. Working really well and the only side effect I’ve had is being really tired most of the time but I can live with that if it’s all I have. Good luck

[Hidden]

I had some problems during the first few months. Bone pain especially my shins. Peg affected my mood for a day or so between injections but these passed and now l have no adverse side effects.

I take 90mcg every forthright. I developed tinnitus but not sure if this is connected to Peg HU more likely aspirin That was solved by an audiologist with hearing aids.

[Jonnymitts in reply to Hidden]

Hi I’ve had tinnitus since diagnosis about 5 years ago, was on aspirin only until starting interferon this year every two weeks. My tinnitus seems worse now. Do you mind me asking how it was solved by an audiologist? I did see an nhs one a few years ago and they said they couldn’t do anything.

[Hidden in reply to Jonnymitts]

Hi Jonny, I got tinnitus full time for a better description back in May. Here in Berlin we have a big hospital based Tinnitus clinic. They tried various treatments and some are still ongoing.

I had numerous hearing tests. All indicated a slight loss in my left ear. Which l knew But they thought it age appropriate not severe. I got prescription for a masker aid which l could use for white noise relief if tinnitus got stressful. The audiologist did his own hearing tests and suggested l try hearing aids. He identified that my hearing loss was at higher frequencies.I honestly did not expect them to work was very sceptical. But he said l could try them for 2/3 months and if they helped l could go with them. No pressure to buy. They worked immediately. l was amazed My partner even told me I don’t talk as loud anymore Lol

They are made to fit my ear canal. I can control them from my smart phone and not visable. Take a little getting used to. I have to wear them for at least 14 hours. My tinnitus also switches ears which is not uncommon with hearing aids

The audiologist said the aids help with tinnitus retraining. I take them off at night but increasingly now l have silence even at night. I would recommend to give it a try

Here in Germany the state pays half the cost. They are expensive, each ear aid is 1600 € But it includes full support insurance batteries etc for six years. Then state pays again to replace.

So far so good. Hope that helps.The audiologists here have people coming from all over so they provide English speaking information.

[Jonnymitts in reply to Hidden]

Thanks for the detailed reply, sounds like they really help. I have a white noise machine for bedtime which helps.Though a bit similar to you I have a slight loss of hearing in the left ear and I think it was at higher frequencies as well.

I will discuss this with my haematologist at my next appointment as they had tried stopping my aspirin and tried another medicine before to see if this would help. Perhaps they can refer me to Berlin a city I’ve always wanted to visit.

I also seem to struggle with loud noises now and I am sure stress and anxiety increase it.

I started yin yoga shortly after diagnosis and have found that has helped with stress levels.

[Hidden in reply to Jonnymitts]

Tinnitus is very reactive to stress. My hospital gave me some sessions with a osteopath. They do massage of the head and jaw and neck. Magnesium also helps . I found Julian Cowan Hill very good. He has a free app called Quieten you can download with lots of stress reduction ideas. He is London based psychotherapist as well. He has lived with tinnitus for many years.

The audiologist l used is terzozentrum-berlin.de/

And for the app quietenapp.com/

[Jonnymitts in reply to Hidden]

Thanks will check that out, I have an Osteo I see for some other issues so will discuss with her next time.

[DJK12 in reply to Jonnymitts]

I have had tinnitus for about 10 years and haematologist sent me to NHS audiologist who just said it didn't appear to have affected my hearing so I'd just have to put up with it. It has deteriorated but not to a degree that I need help though I suspect I do need a hearing test- present haematologist just shrugged and indicated it went with the disease. However in last six months our son, who lives in Ireland, has developed severe tinnitus after a bad accident and concussion and is unable to work at moment. It is getting incrementally better but may not completely go and I do realise its got a different cause. His ENT consultant has suggested he considers a device called ' Lenire '- needless to say it isn't cheap but they don't seem to be doing a hard sell on it (it appears to have been developed in Ireland) and he is being assessed as to whether it will help. I'm sorry I can't actually say if it works, but thought it worth mentioning.

[Jonnymitts in reply to DJK12]

Thanks for your reply, I will see if I can get a referral and get it checked out again. I was also diagnosed with small vessel disease last year so wonder if this may be the cause?

[mhos61 in reply to Jonnymitts]

Sorry for hijacking this thread, but I’m finding this tinnitus discussion very relevant to my hubby at the moment. He’s had it on and off in his left ear for years, and it is quite bad at the moment. He is currently awaiting a further audiology appointment.

I think it can be a very underestimated condition particularly in how it can affect mood for instance. He gets very low in mood and easily irritated. I totally get why though!

Thanks for all the information and links. Xx

[tessa46]

Hi Otisthedog, I have ET dx 6 years ago, on peg for about 15 months, same dose as you, very happy with it ,took my platelets into the normal range, but after 12 months, I developed a branch retinal vein occlusion in my right eye, which necessitated injections in my right eye (not recommended!)luckily they worked because it affected my vision considerably, but my consultant felt it was caused by Peg so I had to come off it which was very disappointing. I hope you have a better experience. Good luck!

[otisthedog in reply to tessa46]

Sorry to hear about your experience. I hope things worked out alright. I also had a bad reaction with burning in my digestive tract. Wishing you the best.

[MPNBlog]

Hi otisthe dog. I have been on Pegasys 2 yrs with a 3 month break in the middle due to a probable Peg reaction. Nothing definitely nailed down, but I was admitted to Emergency with per-myocarditis three times. I also get bad fatigue. I now take 45 ug Peg every 3 weeks and I am on daily colchicine for chest pain. I seem to be able to manage the chest tightness on that, but I get about 5 days/ month with a tight chest. The fatigue is also no better despite less frequent dosing. At next haem appointment I am going to ask about a lower dose 4 weeks apart, as someone else on this forum is on 22.5ug. Peg has been controlling my counts well except for red cells so I have still had an average 3 venesections/year. I would be interested to know what side-effects you are referring to. Best wishes.

[otisthedog]

My white cells went very low. Neutrophiles below normal basophiles went to zero. Also got severe intestinal burning. 45 mcg per week. Hope you can get your issues resolved. Thanks for replying to my post.

[DJK12]

I was on 45mg reduced from 90 mg. It did the trick for platelet count and other bloods were reasonably stable though I continued to need blood transfusions. Unfortunately at 6 months I had a cytokine storm with pneumonia and fluid also round my heart with hospilisation on and off for 5 weeks. I had to stop Pegasys which was a shame especially as it's clear from this forum many people have great success from it. Unfortunately we all have different reactions to the MPN drugs and really need personalised targeted drugs - hopefully not too far in the future. I'm now on Ruxolitinib.