Hello my fellow MPNs not been on here for a while, due to the fact had a few health issues. Where to start, first things first my bloods are all normal hurrah 😃 which is good and Haematology are really pleased with me. BUT just had to have done this week a laser procedure to but two holes in my eyes to relieve the pressure in my eyes due to acute angle closure, which if left can cause me to go on and get Glaucoma YUK !!! So no makeup for at least seven days, feel very naked🥺, the other problem is that I have also been diagnosed with inflammatory bowel disease, colitis could be the main problem due to see two consultants this month and next month one regarding the colonoscopy I have just had done and the other regarding if I need a endoscopy ( the one down the throat 🤮 ) heave at the thought of that. And all these years my GP said that I had irritable bowel syndrome so cross as tests were never done to see what the problem was. I have always eaten a good healthy diet, kept fit, drank plenty of water at least two Ltrs a day, and now it seems that my diet is going to have to change even more, cutting out certain fruit and veg which I love.
Well when my eyes were done the consultant thought is could be the Hydroxycarbamide that had sent my pressure up in my eyes, as there was no sign of it last year when my eyes were tested, so very strange.
Just wondering if anyone else has had any problems like this.
Got a beautiful weekend to look forward too, lots of sunshine which makes us all feel good 🌝🌞
So have a good weekend my friends and sorry about the moan.
Jean x
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Hi, I recently had a colonoscopy and endoscopy (they rinsed it under the tap in between!) not the most fun morning I've had.
It seems I have diverticulitis and a sliding hiatus hernia. I've always eaten lots of fruit and veg but the doctor said I needed to increase them!
I asked if it was anything to do with the ET or drugs but they said not. So far I haven't had that much trouble with the diverticulitis, the doctor said as I take pain killers for my arthritis which cause constipation that has helped stop bouts of diarrhea which you can get with that.
I wear glasses for distance and reading, but I'm 66 so expect that, so not too bad with my sight.
I'm currently on Anagrelide and my platelets have been in normal levels over the past few months, (hurray)I am always anaemic though, which was one of the reasons for the colonoscopy etc in case I was bleeding from somewhere, which, fortunately, I am not. I've also just had one of the bowel cancer screening tests through the post and that came back clear. I'm very pleased about that as both my parents had bowel cancer.
One of my dogs suffers from colitis and we give her a little probiotic yogurt every day which seems to help her - whether that works for humans I don't know!
Hope you're feeling better and the treatment for your eyes works.
I also have diverticulitis, and one pocket is blocked, so maybe they will sort that out.
I have taken for the last six months a product called Symprove recommended by another Gastroenterologist it has been tested and trialed by King’s College Hospital with some amazing results for IBS and IBD, it’s water based so if anybody is Lactose intolerant they can take without any problems, and so far it has really helped me although it’s rather expensive but if it’s doing the job so be it, and is fine with my Hydroxycarbamide.
I also just had eye surgery for narrow angle glaucoma because of pressure and if not done could lead to blindness. My eye doctor thinks it's the hydroxyurea. You are not alone. My right eye had the most pressure and it was done first and 4 weeks later I just had the left eye done last week.
You were lucky, they did mine both at the same time, so could not see for a good 24hours.
Don’t think I missed much 🤓 strange how they thought it could be the Hydroxy, been on it now for over six years, with no other problems. Going to mention to my Haemo but that’s not till December.
Have not heard of HU causing glaucoma, but given how toxic it is I suppose it is possible. I would think this would be a really atypical reaction though. I would wonder about a more direct link to the MPN, particularly Hyperviscosity of the blood. If your blood cell levels are normalized, I would not think this would ne an issue though. Sometimes we do have unrelated medical problems.
If you are JAK2+, that may have something to do with multiple symptoms you are experiencing. The JAK-STAT signaling pathway can, in addition to increasing hematopoiesis, increase your production of inflammatory cytokines. The elevated cytokine levels are thought to be responsible for many of the secondary symptoms we experience. Systemic Inflammation may be a common link for multiple symptoms you are experiencing. There is a fair bit of research out there on this topic, but it does not seem to have found its way into common practice yet. I think many docs don't know what to do about it so they just ignore it.
Regarding the endoscopy - not to worry. Have done that along with multiple colonoscopies. You will be out for it. Likely will have a bit of a sore throat, but nothing too bad. Not as much fun as a day at the beach, but not really all that bad. I have GERD, a hiatal hernia, intermittent esophagitis, occasional gastritis, and a hx of polyps. When I was on hydroxyurea it compromised my intestinal endothelium, causing chronic constipation. All that GI stuff is a pain in the butt! Literally!!
So sending support and sympathy your way. Try not to worry too much about the endoscopy - it really isn't that bad and it will help get to the bottom of what is going on.
Love the pun at the end 🤪 sounds as if you have been through it as well, but thank you for that I am Jak2 Posative and up until this year have been really well on it, so strange it’s getting to me now especially when my bloods are all in the normal range.
If you are taking hydroxyurea to control the blood numbers, that will do nothing to address the inflammatory cytokine load. HU is basically a toxic bandaid that reduces blood cell numbers by interfering with DNA activity. It does not do anything else. Per the NIH, HU is a "highly toxic drug with a low therapeutic index." It certainly seems to help some, but not all. Despite its many adverse effects, I have never seen any ocular toxicities listed.
I also have some ocular issues. I have a history of retinal tears and lattice degeneration in both retinas. Two months ago, I had a craniotomy/resection to remove a large tumor from my occipital lobe (unrelated to the PV)(is related to Neurofibromatosis type 1). A few weeks after the surgery, I came up with a Posterior Vitreous Detachment in the same eye that had the tears. It has been an interesting couple of months (in the sense of the Chinese curse "may you have interesting times.")
Sometimes we have things happen that are not related to the MPN. The MPN just makes it more complicated to figure out what is what. Had to have a heart surgery about a year ago (catheter ablation for atrial tachycardia). This was also not directly related to the polycythemia, but the PV made everything more complicated. Taking Diltiazem for the tachycardia and hydroxyurea at the same time was a quite unpleasant due to the potentiation of adverse effects. As it turn sout, I am now HU-intolerant, Can't even take low doses without toxic effects.
Anyway - hope you have a better course with the HU than I did. FYI - regarding the inflammation - I have had great success with a Turmeric Curcumin blend. It works better than any NSAID I ever used. I have not taken an NSAID in over three years since staring on the supplement.
I also have an mpn.... I have ET. Taking hydroxy has brought my platelets down to more or less normal, and I too have narrow closure angles, but my pressures were normal. It was picked up by my optician and subsequently I too had the laser treatment. As you say...ouch!! No one said anything about hydroxy, but the consultant did say that my optician was a very good optician to pick it up as I didn't have high pressure.
Hope you are soon feeling better.
Best wishes
Gill
The pressure in my eyes also went up dramatically about 18 months ago. I had lens replacement for both of them - the ophthalmologist talked about the danger of catastrophic sight loss. This was done instead of laser treatment as one eye was coasting towards cataract removal anyway so rather than laser treatment first followed by cataract surgery within the year I opted for that. The pressure came down dramatically in one eye , not so great but acceptable in the other.
Obviously I was concerned why it had happened and was inclined to blame the steroid danazol which I'd been on for 9 months whilst pressure must have been going up. It had other unpleasant and difficult side effects and had to be stopped abruptly by the haematologist. However the optician and both consultants involved said "maybe" and as I've been on most of the other drugs, including HU, over 30 years I suppose I could take my pick. My husband has had treatment for glaucoma and only treatment is for asthma so perhaps just bad luck?
Re the endoscopy the unpleasant bit of the procedure was very very short. The back of the throat is sprayed with a numbing liquid - tasted of bananas. However although it was a very busy clinic they emphasised I could have sedation if I wished - the only proviso, like sedation with a bmb, was that you have to have someone with you to take you home.
You are going through the wars - do hope things settle down.
Don't worry about the colonoscopy and endoscopy procedures. They are over before you know it and are painless in my experience. The prep for the colonoscopy is unpleasant but if you stay near a toilet (or on a toilet) for the prep it's all good.
Hopefully they will work out exactly what is going on with your gut lining and may be able to alleviate some of your symptoms.
Hydroxycarbamide affects the gut lining. I had bowel problems as soon as I started taking it.
I have found home made kefir really helpful, not the pasteurised shop stuff but freshly made live kefir from a culture I was given. The live culture can be bought on-line. I make a batch every day and it is ready to drink on the third day, a glass full at breakfast. It is nice and thick made with organic full fat milk.
I passed some on to a friend with severe IBS and she is now pain free and her colostomy operation has been cancelled as it is no longer needed.
Yep know how you feel, no explanation as to why these things happen, I also have my Yoga routine first thing in the morning since having a total knee replacement five years ago now that restricts me some what, but I can still do most of them really makes me feel good, then on my bike sets me up for the day.
Regarding my stomach problems had some better news yesterday, it’s not ulcerative Colitis or Chrones, but a severe bout of Diverticulitis seeing another consultant at the end of this month to see what’s what. They also suggested that I keep taking the Symprove as it’s going to be more of a benefit to me.
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