Sorry it has been a while with an update on Ruxolitinib

[wendycu]

The last time I wrote to you all was about 2/3 years ago when I started Ruxolitinib. The first 6 to 8 months I was a different person, I felt great. I started to swim, (200 lengths in 1.5 hours) then I started to get water infections, one after the other, chest infections, ear infections and shingles in my ear, no where else. I was not in a good way.

I went to my GP, they said go to your consultant, consultant said go to your GP.

I was asking is it the swimming, is it the menopause, is it because my iron tables were take off me, (which my professor said it should not have been taken off you) or is it the Ruxolitinib? I stopped swimming just incase.

I’ve had blood tests, scans still don’t know why.

The professor looked at me one day and said “This is not the Wendy we know, you can tell your not well, you are not smiling,” he done extra blood tests and found I had E, coli infection, (that made me think it could have been the swimming pool.)

In between, I nearly lost my husband to a bad skin infection, Christmas Eve 2022, he is well now, then in September 2023 I lost my Dad to a big stroke on the right side of his brain. (I miss his so much) In April 2023 he was over the moon when I went to show him my mortgage was paid off, I finished it 5 years early.

It has been a hard time for me, I am doing ok now, fingers crossed 🤞 I have not had any infections since I went back on the iron tablets, my red and white cells have leveled out, I have a chewy vitamin every day.

I spoke to my doctor and consultant who are now watching me more closely,

I was told at the beginning of taking Ruxolitinib that you will feel great, then dip a little then level out. Well I think that was me, up, down now leveling out. The things you have to go through to feel well again.

The only thing I am struggling with is the pain in both legs, it starts at my ankles then travels up both my legs. I do have arthritis is both hips, knees, ankles, ribs and fingers. I can deal with that but it’s the pain in my thigh bones what hurt the most. I was told that it’s part of your ET and MF. The bigger the bone the more it will hurt. (Great)

I am well, taking one step at a time, I know my dad will be watching over me saying, you are a strong person keep going. I will fight what ever comes my way. I am on the bone marrow transplant list. I have 3 100% matches waiting for when the time comes.

I hope you are all well, stay strong, we can all do this xx

[hunter5582]

Glad to see you checking in. Sorry to hear about the struggles. It sounds like you are experiencing a combination of MF symptoms and possible ruxolitinib adverse effects. Unfortunately, ruxolitinib is associated with some different types of infections. An MPN Specialist would do the best job of sorting out what is what.

One suggestion would be to consult with an Integrative or Functional medicine doctor. these doctors view the body as an integrated system and will think about treating in different ways. My Integrative medicine doc started me on a combination of reishi and astragalus when the Besremi caused mild lymphopenia and borderline neutropenia. I am also on an anti-inflammatory regime to combat osteoarthritis and other inflammatory conditions. I am taking curcumin, L-Glutathione and SPM Active. Note that I would strongly recommend to anyone considering complementary health interventions that they seek expert medical input from a provider with the expertise to manage these interventions.

Wishing you all the best as you move forward.

[Loubprv Volunteer in reply to hunter5582]

Morning Hunter

Do you know anything about mast cell activation? It seems well covered in the US - here not so much. I too think functional practitioners are worth consulting.

I was diagnosed with MCAS 12 years ago - it took me 7 years and a strict diet to be able to live a near normal life, not realising that the 1000ngs a day of hydroxicarbamide was actually helping to stabilise my mast cells. I had to change from hydroxi to interferon about 7 weeks ago and boy, are my mast cells having a party!

We re having the house tested for mould spores on Saturday. Certainly Beth O’Hara ( mast cell 360) has some superb info.

Anyway thanks for reading this.

Best wishes

Louise

[Mishie14]

You have been handed an overwhelming number of challenges that are hard for anyone to handle. You have persevered. Through it all have gained strength to proceed and succeed. I so admire your courage. I hope the current relief is long lasting and your health will remain stable. Thank you for sharing updates, best wishes for blue skies. Stay safe.

[Cja1956]

I’m always interested in reading your posts I was diagnosed with post ET MF 2019. First I want to say so sorry to hear about your dad. I lost my dad in 2011 and I still miss him. You’ve had a rough couple of years. I’m glad you’re turning the corner now.

I started on Jakafi 10mg/twice a day in June 2023. In July, I ended up at the hospital with high white blood cell count of 22, enlarged spleen, and my platelets dropping. Things turned around until December, when I was diagnosed with basal cell carcinoma in my inner eyelid. Between February and April I had three surgeries on my eye, and I was hospitalized and dx with ischemic colitis. I became very weak and short of breath for a while. My doctors increased my Jakafi to 15 mg twice an day and since then, I feel like a new person. I’m still trying to understand how this disease works with all the medications that go along with it. It feels like I’m always waiting for the other shoe to drop. But for now, my quality of life is really improved and I’m enjoying having my new energy and doing things I missed out on the last few years.

Sorry for the long post. Take care,

Cindy

[wendycu in reply to Cja1956]

Sorry to hear you have been through some rough times too, I think we have to go through the rough to get to the smooth, I forgot to put I had Covid and gained 3 stone on this medication, but life has to go on, no point in me getting up tight about a few pounds/stone. As long as I feel good, I will be fine.

Wishing you all the best and hopefully on the smooth side of this medication.

Wendy.

[lizzziep]

Glad you’re feeling better, I still miss my parents even though it’s over 25 years since they passed. I have also put a lot of weight on with Rux. Hope all goes well in the future.

[Inca in reply to lizzziep]

I have lost weight recently 4 yrs on Rux ,reduced my dose of Rux & having injections to boost cells & platelets,had blood transfusions before consultant decided on the injections,think they give me a little more energy,can’t do as much as I want to tho! Miss my parents too ,it’s normal if you had a happy home life when young. Just one daughter ,no grandchildren so we are a just 3 in the family totally!!Foals & puppies is our addition to the world😂Best to you.

[lizzziep in reply to Inca]

We’ve got 2 grandchildren, one lives over 250 miles away, the other might as well for how often we see him. We have dogs, and granddogs.

[Inca in reply to lizzziep]

So like us you look after yourselves.At the mo my hubby who is carer for me has injured his back badly,Our local Marie will provide help for us ,house ,garden,cooking ,whatever is needed as long as needed.So we are lucky to be in rural France.Good MedicinTraitant,good nurse that have looked after me for 14 yrs since starting with PV.now MF unfortunately.Keep Strong as poss its the only way Sally🥰

[Scaredy_cat]

What dose of ruxolitinib are you on? Does the haematologist want to increase it? How are your blood levels?

[wendycu in reply to Scaredy_cat]

15mg twice a day, they did want to up the dose, I said no because of the weight gain, hopefully my patience’s has paid off (or my stupidness) and things are picking up. I know my body and if there is something wrong, I didn’t want them do up the meds until I was sure I understood what was or what it is that is coursing the problem.

[Yanico in reply to wendycu]

Is the amount of weight gain associated with the dose of Jakavi? I thought it just suppressed leptin so you don’t feel full no matter what the dose?

[wendycu in reply to Scaredy_cat]

sorry blood levels have dropped from in the 700’s to 200/300’s

[Scaredy_cat]

I put on about 7lbs. Mostly it is because your appetite gets better especially if you were having pain from your spleen

[Annula]

Wow Wendy! you have certainly been through the wringer! A less stronger person would have taken to their bed by now.Hunter is by far the most knowledgable in the group & his advice is always spot on.. Stay strong & keep going, Best wishes x