Pv odds

Hi Peter well that sounds both interesting and promising.  I know we have a registry list for those who swabbed and would be willing to donate bone marrow which is then cross checked with those needing one.  But this sounds much more advanced.  Please keep me informed.  Today's our big holiday 4th of July.  I'm not going to watch fireworks in person.  Been there, done that. I'll watch the Macy's fireworks on tv.  Much more comfortable.  Be Well. Linda

Hi Linda,

Have a great day.  It is only once a year isn't it.  I did look up the BBC web-site and found the article referred to under the science heading.  Quite a lot of information there so if you felt so inclined you could read it all for yourself.  Basically it  is just as I quoted to you but much expanded.  Quite obviously it is going to happen.  Warm and sunny here today.  I get the impression that something more global will be undertaken on a local aspect.   Best wishes.

Peter.

Hi Peter yea, our Independence Day which happened July4, 1776.  It's a really big deal in the US.    Loads of parades and fireworks everywhere.  The biggest and best is in New York on the Hudson River.  I watched it on tv.  Didn't go to local firework show, too mant people and mosquitoes.  I hope you're right about what you're reading. That would be great.  I just read about a new drug for us in trials.  It's called 110-11 or something like that. It's in theearly stages and doesn't have a name yet.  At least there are things happening.  Take care. Linda

We used to come across US yachts when on our travels and they all whooped up on 4th July.  Can understand your reluctance not to mingle with the mossies, they can be a real menace.  I had read recently about the trials on your new drug as I came across it on a medical web-site.  The numbers ring a bell.  Hope all is well with you and the sun beaming down.

Wish you well.

Peter.

Hi Peter how many firework displays can I see.  After a while, they all look alike.  I've been going to them since my parents took me when I was little.  Im gonna try and find that article again and give you the correct numbers of the new drug.  It also posted the drug mfs name.  Be well Linda

Hi Peter I found it.  The company is called PharmaEssentia, the drug for now is P1101.  I'm reading something about Austria.  They wanna tap into the Jakafi market with this drug.  Jakafi sales were $1.43 billion from 2011-2016. That's a lot of lettuce!  Take care Linda

I will have a look at Pharma Essentia as I feel they may have a connection to UK.  Seems like it is all happening at the moment.  Some very potent information on PV medication supplied by Lijuan emanating from your country. She has posted on another thread. 

Peter

Hi Peter I just read the post from Lijuan.  It sounds like what I  posted to you. I believe P1101 is a Ropeginterferon.  It's injected less frequently than pegalated interferon or Pegasys. She mentioned Dr. Silver, who is perhaps the top dr. In the US for MPNs.  It's very technical I'll have to read it again.  Thanks for the info.  Let me know what you come up with.  Linda

Hi Linda,

Thanks for your response.  I guess you are right after reading about Pharma Essentials.  This is a Taiwan based company with US connections.  They specialise in drugs for MPN's etc in their own laboratories.  There is much to read about with this company on their web-site which includes their new ropeginterferon drug (alfa2b) and said to be superior to Pegatron, Pegasys.

The company was formed in 2003 in Taiwan and has expanded.  Over 1 billion us dollars in the company.  their web-site is very interesting and worth a little time reading.  Explains everything in readable English.  Whilst they do investigate other diseases seems as if they specialise in MPN,s.  Big US connection and yes, Austria is mentioned but really as a Europe connection.

Anyway, settle yourself down and have a good look at Pharma and its ambitions.  Once you hit the site look at the company profile etc.  Look further for the technical stuff.  good wishes.

Peter.

Hi Peter thanks for the info.  I'll have to look @ it tonight.  It's 7:45 am here and I have a hair appt @ 10 am.  I'll get back to you later about what I find.  Linda

Hi Peter I tried to look up info on Pharma Essentials. I didn't get very far.  I guess I'll have to rely on your findings.  What I did seem to gather is the Ropeginterferon isn't on the market yet.  I could be wrong.  The site I got in was too confusing for me. Take care. Linda

Hi Linda,

Hope your hair fashioning went to your liking.  I understand what you say about Pharma Essentia  (no 'ls' on the end) as it took me some fiddling about to get into the site where it mattered.  To give a brief resume, their flagship product is a new generation ropeginterferon alfa-2b developed using their own technology.  It is said that they produce a much purer pegylated interferon (>90% 1 predominant isomer vs. Pegintron"s 14 isomers and Pegasys' 8 isomers).  According to them the main problem with the current two (as itemised) is patient tolerabiliity and side effects including neuropsychiatric and severe flu-like symptoms.  Further, it is claimed that as a result of the purer profile they have improved tolerability plus long-term treatment oucomes.  Dosage is every two weeks (1 week for others).  The intention is for their product to be further tested in other indications, including MPN's & Hepatitis B & C.  They have new facilities in Taiwan and it is listed on the stock exchange there.  It doesn't say if the new drug is yet available for patient use but I suspect it is on the agenda in due course.  They have passed all legal examinations for pharmaceutical purposes.

Well, that is about it as far as I can condense the facts without over-reaching myself.  Obviously they will need to have their product officially researched by the various countries so we will just have to wait and see.  If it is as they predict then it could be a good step forward in treatment terms for all.

There is much more information on their site but it needs time read it all, if needed.  It is the week-end again, how quickly it seems to come around.

Keep well and happy.   Peter.

Hi Peter thank you for reading and breaking down the latest drug.  No wonder I wasn't getting anywhere, I was spelling it wrong.  I am thinking a lot about Pegasys. There are some people on it who are very happy and claim they can go into hematologic remission after a few years.  But I'm afraid of the side effects i.e. Depression and flu like symptoms. I seem to get a lot of side effects from everything.  Never got my hair done. My bp spiked to 168/101.  Had to take a little more bp med, 1/2 Xanax and lay down for about an hour, then it dropped. This has plagued me since being dx 5 yrs ago. My bp can just spike high out of nowhere.  I know it's connected to the et.  So, a whole day lost. Yea, the summer is flying by.  Thanks for the info.  Be well Linda

Hi Linda,

Thanks for your most prompt reply (don't you sleep?)  You simply confirm what is implied by the Pharma Essentia offering respecting the known side effects of Pegasys etc.  Well, you,ll have something to look forward to with a new hair-do appt.  I fully understand your BP complaints.  My wife suffers equally but the underlying cause is unknown.  The answer is there somewhere.  Hope you recover quickly.   Incidentally, it was I who gave you the incorrect details of Pharma in my e-mail.  Really it should have come up with their site anyway.        Peter.

Hi Peter of course I sleep lol. I sleep about 7 hrs a night.  I usually get into bed about 10 pm.  I'm sleeping by 10:45 and wake up between 6:30 am and 7 am.  Yea, this bp thing just pops up for no reason.  It's been going on for 5 yrs. I know what to do now, I don't panic anymore. I take an extra small dose of the bp med, 1/2 Xanax and lay down in quiet.  It usually passes in about 2-3 hours.  Sorry to hear your wife has this as well. It can be very frustrating. So, I need to make a new appt for my hair.  Probably by next week.  My birthday is coming 7-19 and I want my hair done before.  I'm not gong to Atlantic City.  I'm not up to it.  Just out to dinner. Linda

Hi Peter just read that Pegasys is starting to become hard to come by.  The article said that Ropeginterferon will probably be available by the spring. It's almost implying that Ropeginterferon is gonna phase out Pegasys.  Linda 

Hi Linda,

That is an important bit of information.  Your assessment seems very logical and if correct will give us something else to consider.   I will make my own enquiries as soon as I can and see if your news has reached these shores, professionally.    Further your reference to Xanax is something I have not yet encountered but I'll rummage around a bit to see whether it is something my wife should consider.  Her doctors have been through just about everything for her BP but she is a difficult person to prescribe for.   Sorry you have found it necessary to cancel your trip as you were obviously looking forward to it.   Wish you well.

Peter.

Hi Peter let me know what you find out when you're up to it.  Your wife sounds similar to me.  I'm difficult to prescribe for me also.  I found that a .05 mg of Xanax helps with the bp medicine.  My son agrees.  He said the worry or stress in your head can raise the bp.  The Xanax takes the edge off my own stress and calms me.  It's a relatively small dose. Most people are taking 1 mg. 3 X day.  I guess the trip wasn't ment to be.  I can't go like this.  I won't enjoy it.   Be Well. Linda

Hi Linda,

Trust you'll be better soon. Yes, I will ask a few questions when next I see the Haematologist.  Wouldn't surprise me any is they already had the info as they stay very much on the ball.  Latest blood tests very settled I am happy to say.  Next visit in 2 weeks.  Weather rainy today but it's pssing through. The cooler temperatures are welcome.

Peter.

Hi Peter my stomach seems to have settled down somewhat.  I'm not as gassy and the pain under my breastbone hasn't been here.  I do feel quite fatigued though.  I struggle to do the most basic things that I used to do without a thought.  Do you or have you ever suffered from fatigue? I always read a lot of people complaining of it and now I have it.  Glad your latest tests were good.  It's cooler here today too.  And a little gloomy.  This is the first summer that I can remember in my whole life that I'm not tan.  It looks strange to me.  Between dr appts and rain, I can't seem to catch a break.  If you find out anything, please pass it on.  Take care. Linda

Hi Linda,

Good to hear that you have improved.  Fatigue, yes I have been subjected to that.  There were times I just wanted to collapse on the settee and not get off.  Haematologist describes it as part illness and part age.  I expect they're right.   Well the rain did pass through and today has been quite summery so I set about getting a few tasks completed.  I feel quite well really and the fact that I can be active is encouraging.  There is still plenty of time for you to get a summer tan Linda.  Still midsummer.  I feel quite sure that jakavi is doing its best for me.  Don't be too quick to discard it as it seems to be correcting some of those Hydroxy symptoms, which gave me so much concern and pain.  The podiatrists are amazed that I have recovered from the foot ulcers after 7 years treatment.  They really looked after my welfare.  They thought I was on a lifer with those, and so did I.  Certainly I will pass any interesting news on Linda.  My next appointment with the specialists is a.m. on 25th July, unless I have occasion to need them.  The Xanax you use is not available from NHS here so I would expect they have access to something else.  Its main use seems to be with depression and an accompaniment to other drugs.  My wife does not suffer with depression fortunately but the BP is a concern.  She has a doctors appointment soon to further discuss things.

There are so many ailments that can upset the BP.  I think she has just about been through the drugs available but suffers some horrid side-effects almost without fail.  I suppose we all have an Achilles Heel.  You mention your gastric difficulties.  I know that PV can cause this symptom.  It sometimes gets mixed up with the spleen symptoms, I understand.  Hope you feel better soon.  Never pleasant being ill is it ?.  Take things easy.

Peter.

Hi Peter I'm so happy your leg issues have been resolved.  Glad you're not a lifer with that.  I, like your wife, went through many bp meds with horrific side effects. I now take Losartan.  My son told me never to take an ace inhibitor.  It can cause a cough or tickle in your throat and he's POSITIVE I would get that.  Losartan is an angioretessin blocker or Arb.  Every bp med class lowers your bp differently.  I think there are 5 classes. Xanax is alprazalom. I find it hard to believe they don't have it.  It's been around for like 30 years. If not, then Valium, generic name diazepam.  That's been around at least 40 years or more. They are not antidepressants, they are anti-anxiety meds.  I really think a small dose would help her as it has me. Going to gastro today. I know I need an endoscopy to see what this is. I'm thinking ulcer. I've had 3 in the past pre-Pv/et. This sucks.  It sure isn't pleasant.  I'll let you know what the gastro says.  I bet he never heard of Pv or et.  Linda

Hope you are improved today.  Thanks for your e-mail.  Xanax is available in UK but not through NHS.  I suspect there will be a valid reason for this.  You mention Valium and Loperamide.  I know my wife has used these in the past but I will mention them again.  Like you, she is a very determined lady.  I have a feeling she has tried Losartan as well.  Good wishes for your trip to the gastro department.  Hope it is a positive result.  I was reading through an old medical book yesterday (printed 60 yrs ago) and even then PV was given a presentable write-up.  Fascinating to discover that the same comments and situations were as I knew it twenty years ago.  It is only recently that things have moved forward with PV.  Doctors knew of PV then but like now, it  was very far from their doors and most never encountered in a patient.  What a difference a few years has made although still much to do I fear.  Today is sunny again so more tasks to complete around the residence.  Never ends.

Trust your day will be successful.  Best regards

Peter.

Hi Peter the dr. Went pretty well.  I know I harbor the bacteria h-pylori since 2015.  Many people have it and it causes no problems.  Others it can cause an ulcer.  It is believed that 80-90% of ulcers are caused by this.  I've had it twice before.  It has to be eradicated with a regiment of antibiotics. Since I've used the most popular anti-biotic regiment in the past, he's not sure it would work again, as the bacteria might be resistant to it. So, I'm going to have an eendoscopy on July 24.  They're going to test the mucosa of my stomach to see if I could take this anti-biotic again.  He wasn't very knowledgable about Pv/et.  The fun keeps on coming.  I read old medical books too.  We both have a passion for medical info.  Maybe we were Drs in another life. Lol 

Hi Peter don't know what happened with previous message. I hit reply too soon.  It's gonna be 95-100 here today.  I'm gonna try to lay out very carefully.  I've had enough Drs. I'm getting weary.  I need some time away from them. This summer is the worst I ever had. I can't stand it. Seems since I've been on Jakafi, things have been going downhill. I felt fine last summer.  Take care. Linda

Hi Linda,

On one or two occasions I have had messages on this forum suddenly drop out, one of them was in fact headed for you.  Not to worry as I believe you received the gist of things.  Trust you are much improved and getting into the normal sway of things.   Recently I have felt strikingly well for which I am grateful.  No more ulceration to contend with, renewed energy and ambition.

Will see what the Haematologist thinks next week.  Weather reasonably settled and Wimbledon done and dusted so back to normal.  I do feel that the Jakavi has refflected well on me. Future brighter - let's hope so.  At this rate not only will I be attending the family marriage in October but will be conducting the ceremony!!.  Anything for a laugh.  I will speak with the Haematologist about the new ropeginterferon advance and see if I can achieve any further information.  Stay well. 

Peter.

Hi Peter I'm so happy to hear you're doing well.  Lol you'll be conducting the ceremony.  That's cute.  I wish I had some good news for you but my stomach is a mess.  I have a pain under my left rib cage when I wake up. I burp when even drinking water and don't know what to eat.  Went to gastro Fri and I'm having an endoscopy on the 24th of July.  I wish it was tomorrow. I'm kind of scared of the results. Of course my mind wanders to stomach ccancer as it mimics an ulcer in symptoms. Some birthday!  I'll keep you informed of what it is.  Best wishes always. Linda

Hi Linda.  Thanks for your message.  It is sad to learn that you are having further gastro problems but cancer need not be the reason.  Some few years ago my wife needed to visit A&E department with similar symptoms as you now have.   She had been having surgery tests for all sorts of things but when the Consultant saw her she was diagnosed with Pancreatitis. and my wife stayed in hospital for the next three weeks.  Obviously I cannot say that this is your problem, it is a medical situation, but the diagnosis was missed until the hospital was involved.  She pulled through once the treatment was commenced and was in some considerable discomfort previously.  Try not to think cancer.  I know you have medical history but be positive if you can.

Maybe the sunshine needs another shot at you.  Good wishes.

Peter.

Thank you, yes.  Have responded directly.

Peter.