Dry mouth and nose

[wendycu]

Has anyone on Jakavi experienced a dry mouth and nose. I can drink water to help with a dry mouth but what do I use for my nose. It is very dry and sore.

thank you in advance.

[Aime]

hi Wendycu, I’ve been struggling with extremely dry mouth, eyes and nose (as well as other bits), and have undergone tests for Sjögren’s which have been negative so far.

All 3 areas are interconnected, so I have saliva creating pastilles, eye gel and I keep hydrated. Some days a struggle to not have one or all of these areas sore but the gel, etc does help my nose also. Worth a try for you. I have also been prescribed high fluoride toothpaste to guard against decay, which is more likely due to lack of saliva.

Hope this helps, kindest regards Aime 😻

[Inca in reply to Aime]

same with me Aime,you have been on my mind recently ,not seen any posts from you,should have P M nd Not been good hovering now on M F....bit of a shock but coping with it Best I can.Lost my fab dog to cancer which really knocked me for six.I am sure you understand as I know you love your cats.

Hope you are managing all your probs.Great to see you are still on site!

🥰😺😻Sally

[Aime in reply to Inca]

great to hear from you, Sally but sorry to hear your health isn’t so good. I’ve been back and fore to a rheumatologist in Edinburgh who has been really good. He has ruled out Sjögren’s as far as he can but asked for scans and X-rays, so I have now severe osteoarthritis on the top of both feet, which he has helped greatly with injections, plus a torn muscle on my hip. He is referring me and thinks all of these will need ops, as everything else has been done! But it’s only pain, it could be a lot worse!

Between health and helping with my wondrous grandkids, I have been so fatigued, so not very sociable! Hubby has not been great either, with a mild heart valve and muscle issue - but you know what men can be like with illness - sorry guys!

Take care, heaps of E hugs and I will try and be on forum a bit more.

Kindest regards Aimexx😻😻

[Inca in reply to Aime]

Actually Aime I hardly look at our site now,just occasionally on a day I am resting,so delighted I saw your mail yesterday😻I will try & rememember how to pm you.xxx

[Roxanne22 in reply to Inca]

Ps... sending you a big hug at this sad time as you come to terms with losing your beautiful dog, when I lost Roxy two years ago my WBC shot up to 17m from 13m with the stress of it all, it was so painful - I completely relate to your feelings. With much love coming your way.

[Inca in reply to Roxanne22]

Thank you Roxanne, People say ‘oh but it’s just a dog’ But they are the best friend & companion you can have.I am still not coming to terms with the loss of this boy,he was G S D& we trained him to help me with so many tasks.We do have a 6 y o who was nephew ,he is still at a loss without his lifetime companion. We have bitten the bullet & booked a puppy,G S D again we have had the breed all our married life ,maybe crazy as we are not at all young,but never just had one sole dog. I understand how you were ,my excellent Dr put me on anti depressants,it has helped ,I have stopped crying so much. Have you thought to get another dog? My daughter rescues greyhounds & lurcher s,,they are very loving & gentle. Very Best to you & coping M P N probs.Good to see Chelsea had a blood cancer garden.One day we will be recognised!!🤗Sally

[Aime in reply to Inca]

sorry Sally, I meant to offer condolences for your dog. It is the same as losing a human family member. I still miss my puss!🥲

[Roxanne22 in reply to Inca]

That is strange as my family always had GSD - and I grew up with them around from an early age - for many years I was unable to have a dog due to work reasons, but Roxy was my first (of my v own) a pug cross frenchie. It sounds odd, but as the grief was so severe I acquired another pup within weeks, as I live alone and am against taking meds, and it was in the mid of covid lockdown so I succumbed v soon to the joy of another, a full breed Frenchie called Pixie, here is a photo to gladden your heart - you will know when its the right time, blessings dear Inca to your grieving heart. Sarah x (good name eh??)

Pixie

[Inca in reply to Roxanne22]

It is the only way to ease the pain ,a pup full of joy & of course lots of other things!!Pixie is gorgeous,I see the breed often here ,we live in France,very popular little dog. My recent loss is right of my pic,the big black boy died also of cancer 5 yrs ago.Hoping to see the Father of our booked puppy tomorrow again competing in his trials,he is already a champion.Just hope it’s not too hot,I am knocked out in heat ,today is 90 +So me ,Hubby & Kas in the house which being ancient stays cool with A C. Yep Sarah spelt any way is the name!!! Of course it’s quite a holy name in many languages so we are special😇 Take good care Sarah,pleased to connect with you🤗 Sally

[Roxanne22 in reply to Inca]

Sorry missed this one with it being bank holiday here, hope that the trials went well, and you are managing to keep cool. It's cool here in UK after a good few days of warm sunny weather - which I do enjoy but have to moderate exposure as we do! - yes ....Sarah, a princess apparently in Hebrew, although hopefully by now we are Queening it - ha ha!! thank you Sally for your friendly connection, hope that the sesame oil is on the shopping list X

[Inca in reply to Roxanne22]

Hi Sarah ,saw lots of Pixie look alike s yesterday at the dog show!🤗

[Roxanne22 in reply to Inca]

Awh bet that was fun as they are such characterful dogs - v playful which is why Pixie is such an apt name for her - don't even ask why my new cream bedroom carpet became splattered with black ink!!!!?! thanks Inca

[EPguy in reply to Aime]

Aime:

With my new interest in Sjogren's, may I ask which tests you were given? You're not on any MPN meds, is that right?

Supposedly the lip biopsy is the definitive test, but I didn't need it for my Dx.

From what I've read, Sjogren's can take a couple years or more to get a sure Dx. Mine hit hard and fast so no waiting needed.

[Aime in reply to EPguy]

hi, apart from the dentist and optician agreeing that my mouth and eyes are extremely dry, I’ve had blood tests and an ultrasound of glands in my neck plus he has ruled out rheumatoid arthritis. Kindest regards Aime 😻

[Inca]

Me too,drink continually,use olbus oil for dry nose & put Vaseline too when it’s sore,very annoying problem,& skin peels on nose too,I am very careful in the sun ,never sit in it or sun bathe.Best of Luck.There are lots of nose inhalers for hay fever etc which is another prob for me now,eye drops are a must esp vit A advised by my opthalmologiste.🤗

[Roxanne22 in reply to Inca]

Hi Inca, I hope that you don't mind me saying that I have suggested an alternative to vaseline in my reply to Wendycu, you may find that recommendation useful too for your nose interior area, I do hope that this will be interesting and helpful to you as well, take care and sending you my best wishes, Sarah

[Inca in reply to Roxanne22]

Hi Sarah ,just seen your other mail.....Thank you!🥰Sally( I am Sarah too & my daughter is Sara!)

[nightshadow]

I find Ayr nasal sprays and gels to be helpful.

[ainslie]

not me and haven’t heard of it, is it mentioned in the leaflet, Peg dehydrates but not so far heard that with Rux

[Gladys1208]

Hello!

Not on Jakafi, but I’m finding dry eyes a problem on Pegasys - mostly at night, when my eyeballs stick to my eyelids!

My optician recommended Hycosan Extra eye drops (in the red bottle) and I must say, they’ve been a game changer for me.

Hope this helps!

[Ratton in reply to Gladys1208]

I use Hycosan plus and it is very good for dry eyes-also have Theoloz gel drops.

Bought Biotine for dry mouth but don't like taste of it (too sweet)-doesn't help me at all.

[Roxanne22]

Hi there - as I have said before I have tried all sorts of holistic approaches to combat my PV journey, and I have to say that I believe it makes a rocky road much smoother! So Wendycu, re your nose being dry, my recommendation is organic sesame oil (the organic aspect is important, so go to a reputable health store or ayurvedic supplier online) then with your little finger coat the inside of each nostril with one drop, up to two times a day say am and eve; I am sure that this will work a treat.... Inca has said to use vaseline but please refrain as this contains petroleum compounds which are harmful to the body - always consider when applying things to your body (and the inner membranes of the nose are a direct line to the body via absorption) would I eat this....? Its the same. I wish you so much love on your healing journey, Sarah

[kitttycat]

Hi , I just answered your query and my answer disappeared. I have a similar issue and I think the hydroxyurea contributed to this. I have been taking it for 2 1/2 years. I have been drinking water for years and I found it doesnt really do that much - you get the best results from sipping through out the day. Your hydration level also affects the nose . I use a nasal lubricating spray and or a lubricating nasal gel several times a day and before I go to bed. This is all good and works well. I also have an air filter for the bedroom which is great. This is just information but seems to work.