After reading Polly PV post regarding her Eye issues, I have decided to write my issues!
I started out with ET five years ago some 3 months later MF was diagnosed..
I am JAK2 with ASXL1 drivers etc, I started on HU and it brought Platelets down eventually.
Three (3) years ago I started Ruxolitinib 20mg daily.. Fine for a period of time, then Platelet’s started rising again . Back on small dose of HU with my Rux which definitely makes a difference to Bone Pain.
I’m now taking 30mg Ruxolitinib daily and 10 tabs of HU weekly , I would much prefer to not take HU along with Rux but it keeps Platelets in check..
Over the past 5 years I have been diagnosed with various issues. I also have a small node on my Liver, Nothing to worry about I am told…
I had a Scan which identified two (2) Nodules on my Thyroid, sample taken and again Nothing to worry about.. If I visually see my throat enlarged etc then return to the ENT Centre..
I also have a Kidney / Renal issue which is monitored…
Over the past 4 years my Eyes have become very sensitive, DRY EYES etc, if the AC is on in the car it’s a nightmare, Wind etc, I need Goggles!
Like others here I have Eye Drops Hylo Tears 1% and Hylo 2% Zero Preservatives, I have to use these drops as often as possible so the Eye Consultant instructed.
I also have Betamethasone Drops and Carboomer Eye Gel.
I use the Gel frequently especially last thing at night.. I am well Medicated to say the least.
When I first started taking HU within the first few days I experienced my First Bleed in the Eyeball, very worrying.
The cause has never been established I simply had a Bleed. I continued to have Bleeds in either Eye so much so that I now recognise the pain that proceeds a Bleed. They are much more frequent nowadays I have just had two (2) in 10 days.
The Eye Hospital discharged me 18 months ago,” it’s one of those things “ it’s Not Blood Pressure so ???
I currently have a very bruised Eyelid almost as if I had a Black Eye .
I have just turned 71 years had my Eyes Tested 16 months ago and had new specs for reading etc.
Worried something was not right I got another test done 2 weeks ago, sight has changed slightly but biggest shock I have a full blown Cataract on Left Eye.. Not noticeable cosmetically but there in a short space of time..
Recently I notice my Nails are breaking and no matter what I feed the nails with they are now very short.. I don’t bite my nails and I have never been a Smoker with regards to other issues mentioned..
I can only come to one conclusion all these different issues I have and having read similar on here it has to be our Circumstances ??
I’m about to have a total Hip Replacement later this month, that is enough to worry about at the moment.
I will be requesting a Referral back to the Eye Hospital Bristol tomorrow ..
It appears that several of us have oddities going on, I wonder if there are more suffering similar symptoms?
I have a great Haematologist and I also have an MPN Consultant who I will see in June..
Thank you in advance for reading this tale..
I hope you all have a nice B/H and the Sun shines for everyone…
All the Best Folks
Maria 😁
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pontygirl
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Hello Pontygirl, I can definitely identify with some of your problems. I have ET and taking 500 mg Hydrea for almost 5 years now when it was diagnosed. My nails, mainly toenails are very brittle and powdery and covered with a chalky white substance. I don’t know whether there is a connection but I have just had my front tooth snap off completely and had to have a replacement put on a plate after having an extraction of what was left in my gum. I did read that Hydrea can affect the teeth as well as nails. I also feel my sight is deteriorating and am shortly having a check up at the Opticians although at the last check up was told I had cateracts which would eventually require removal. As for bruises…..they appear frequently out of the blue when I know I haven’t knocked into anything. I know some things can be put down to my elderly status 😀😀 but wonder if Hu and indeed ET itself are the cause. Best wishes, Fran
Hi Maria, just thought I would add my good wishes for your hip replacement . I had mine replaced about ten years ago and found the recovery very good. This was a while before ET was found so I don’t think connected. Just wanted to say I found the recovery was hastened greatly by sticking rigidly to the exercises I was given on a paper which I did at various intervals during the day for a few weeks. I’ve given this advice to friends having this op. since. Good luck and don’t worry I know you’ll be dancing around soon. I do hope you get your eye problems sorted quickly. Best wishes Fran.x
Nice to hear from you and very much appreciate your info on Hip Replacement.
Yes I will religiously be doing the exercises set out, had a lengthy Pre Op Assessment last week and everything is clear in my mind..
Only comment, I much prefer to be on the other side of the Hospital Bed. Throughout my 40 +years Nursing in the hospital environment I always endeavoured to treat my patients with care and respect and often envisioned being in their shoes/ bed now I am about to find out and not looking forward to it next week..
However to be able to tend my garden and walk easier will be wonderful, that’s the pay off.
Take Care Fran hope you have a nice Sunny Day, we are in West Country and the Sun is shining !
Hello Maria, thank you for your message and I'm glad your Pre op.assessment went fine. Wishing you an easy replacement operation next week and a swift recovery. We had a sunny morning, but clouding over here now on the North Yorkshire coast unfortunately. Take care,
Sorry to hear about the multiple medical travails. Many of us understand what that is like. It would be great to be a very boring patient! Alas, that is unlikely for some of us.
It sounds like you may be having issues with hemorrhage due to the ET. That is the odd thing about thrombocytosis. Thrombosis and hemorrhage can both occur. It is even more complicated since the antiplatelet treatment also increases hemorrhage risk. Add co-occurring medical conditions and it gets really complicated to sort out. Glad to hear you have a great MPN care team that can help you sort this out.
Damage to the nails is a known hydroxy adverse effect. Just goes with taking the medication sometimes. Hopefully your care team can make some suggestions on how to manage the issue.
Given what your describe with the eyes, you definitely need to be followed by ophthalmology. I also have both dry eye and cataracts. The only thing that worked for the dry eye is Cequa, which works great. The surgery for the catacts is pending my deciding to do it. The issue with hemorrhage in your eyes may well be a combination of issues involving both the eyes and the ET. It will take a collaborative effort between the MPN care team the the ophthalmology care team to sort that out.
Focussing on the hip replacement at this point is very logical. Wishing you all the best with that. I have had four surgeries in the last several years. I made sure to get my MPN Specialist to consult with the surgeons as needed in each case. There are some things the surgeon need to be aware of from a MPN perspective.
Nice to hear from you as always you are very informative…
I most definitely intend to raise my concerns with my Haematologist and ask for collaboration with Opthelmics.
My local Haematologist is consulting with the Orthopaedic Team within another Hospital Trust just out of my area, but are happy to do the Hip Replacement plus my Surgeon specialises in Hips and Knee Replacement, I researched extensively to get the right Surgeon.
Whereas the Eye Hospital is the same Trust as my Haematology Care, thus it should be easier for team participation…
I will reference you’re Eye Drops and obtain some ASAP really had enough of the bleeds, I am a retired nurse mainly Surgical Care our MPN’s was a mystery to me along with many Clinicians I have met along this journey …
The Cequa eye drops worked for dry eye for me when nothing else did. Hope you find that it helps.
It is quite common for medical professionals to now little to nothing about MPNs. They are rare disorders. My orthopedist said to me "What is Polycythemia Vera? It has been a long time since I was in medical school." He listened to my answer wand why it was relevant to the knee issues I was having. His intervention fixed my knees and prevented a needless surgery. I really like that doc!
hi, all these ailments can really get us down and I find only MPNers will give support.
My health issue is loss of hair, first due to Hydroxicarbomide then made worse with Peg.
We have the added issue of our age. We know that it’s not connected entirely but I think it does have an impact on decisions the medical profession make.
I’ve been denied minoxidil tablets on line ( hair loss treatment )because I’m a woman and it could be the menopause that’s causing my hair loss!!! I’m 67 for goodness sake!! 🤣🤣
I do hope you get your issues resolved ASAP. Sending hugs .
Thank you for your kind reply, yes sadly we sometimes really have to count to 10 when ridiculous comments are made..
I’m sorry to hear of your hair loss for us ladies our hair is important, it’s a sad day if I cannot get to the Hairdressers. I’m fortunate to still have a good head of hair but with the Chemo it’s not in the condition that it used to be.
You will have to keep Nagging about your Hair Loss, just maybe a different ear will listen and understand..
Hope you are keeping reasonably well and enjoying life, have a good day whatever you are doing…
hi, I had my hip replacement 2 years ago now. Wasn’t prepared for how much more disabled I’d be immediately after, but soon regained strength and no pain, mobility back to normal. Wishing you a smooth operation and swift recovery.
Sorry you are having so many issues. Good luck with the hip op. I also am blaming my increasing nail damage to hydroxy which I have been taking for 7years now, but it does manage the blood well. My latest issue is fairly rapid eyesight deterioration, including cataracts -will be discussing with haem at next meeting.
Thank you for the reply sorry to hear about your issues, I have only recently seen the change in my fingernails but to be expected with taking Chemotherapy and Yes it does work with Platelets..
But still upsetting to suffer these challenges and especially Eye Issues…
Hope you’re issue with Eyesight is sorted with new Specs and the Cataract removed ASAP..
Hi there! So sorry for all you’re going through. Dry eye is not a fun thing to deal with. After being on HU for a little more than a year I just refused to take it and am now on Peg. I did want to mention that having always had really healthy eyes I suddenly developed cataracts in both! I had an eye exam in late September with no issue but started having trouble reading so returned to the eye doctor in December to be told I needed surgery right away. I was shocked. I’ve had the surgery and have to admit it is wonderful not to have to wear glasses other than for reading. I hope you do find some relief with the drops Hunter has recommended.
Thank you for the reply I am sorry to hear of your situation. Good to hear that Surgery sorted the Cataracts and you are happy to wear your Specs for reading only.
I only use my Specs for reading but I will have to wait a while before my Cataract is removed, Hip first then Eye Surgery…
Please ask about the availability of blood serum drops. Pre Covid I used to donate my own blood at Liverpool donor centre for my supply but during and post Covid I now receive a regular batch of donor phials. They are couriered frozen in dry ice and you pop them in the freezer. I use one a day and I can't function until I've lubricated my eyes on waking. In my case and for many others they are the only thing that works effectively for severe dry eyes.
Really good to hear from you, ahh you were one of the first to reply to my first post about ET & MF, 5 years ago along with Lesley our lovely Sand Dancer 💃🏻 . I still miss her personal friendship…
Chris the Blood Serum is top of my list, I have just been referred back to the Eye Hospital Bristol, just awaiting an appointment..
Throughout my Nursing Career I never came across MPN’s or Blood Serum but since your kind reply I have been investigating..
Unless one suffers absolute Dry Eyes there is zero comparison..
Spent 5 hours at the Hospital last Wednesday for Pre Op Assessment for Hip Replacement next week.
On leaving the hospital I could cheerfully have put a face mask on without Eye Holes 😱 eyes were so dry it took 3 days to be reasonable !
Whilst in there I will wear Goggles only taking them off for Surgery.
Chris glad you have done so well, I know it’s been a hard road for you but Zero MF, wonderful !!
How’s things in your location by the sea ? Weston is about to erupt with holiday makers, seafront heaving etc , etc..
Town will be avoided at all costs until September, not much option for 8 weeks come next week, get the new Hip working first.
Thank You for your lovely response and recollection, , it means alot. I'm not very active here nowadays because much has been covered in depth , but more so things have moved on well beyond my time and newer contributers have stepped up to share their experiences of the latest drugs etc. I meant to say that another aspect which helped my eyes was the purchase of moisture chamber glasses from a company called Eyewear Accessories. They're a tad pricey but worth it in my opinion.
Blackpool will no doubt be mobbed by Grockles (colloquial for holiday makers ) , , so like you I won't venture into town for no really good reason.
I too miss Lesley , , I've said this before to someone but every time I hear Tiny Dancer by Sir Elton it reminds me of her , , she was a top lady.
I wish you the all the best of British Maria for your upcoming surgery and a speedy recovery .
Hi Maria, I have been having frequent eye bleeds since developing extremely dry eyes due to post transplant GVHD. My ophthalmologist is not concerned by the bleeds. Will be interested to hear your ophthalmologist's opinion for you. I also found blood serum eye drops to be a very soothing addition to my eye care routine which looked pretty similar to what you are currently having. Best wishes for your hip replacement, Simon
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