What Happens When you go off Jakafi

[Buggerbear]

I fell Friday night on my knee and beinh on blood thinner, the hematoma under my knee was huge. I called the EMT’s who transported me to ER by ambulance who checked me in Hospital Saturday,

Very painful and swollen and hospital is attempting to find Rehab Center for me, HOWEVER, no Rehab Center won’t take you if you are on a cancer drug. I have had PV since 2014 and been on jakafi for 2 1/2 years.

I called my oncologist to find out what would happen if I went off Jakafi 2 weeks or more. I know he would never lower my dosage because my numbers were finally stabilized. He said it was my decision to make. He recommended getting back on the nlood thinner so I wouldn’t get blood clots or pneumonia. The hospital dr said the hematoma would not go down until I got off Blood thinner for 5-7 days.

I am between the rock or hard spot….any tecommendations or experienceto share? Thank you so very much!’

[hunter5582]

OUCH!!! Been there and done that too. I fell on a sheet of ice onto my hip and has a severe hematoma. It was very badly bruises, turning various shades of green and purple. After a time, the hematoma boke up and "fell" down my entire leg. It looked like someone had bashed the entire leg repeatedly.

There is not a black and white answer to your question. Your doctor is right about it being your choice. the decision is based on what your short-term treatment goals are and what risks you are willing to take. You have been told that the hematoma will not resolve unless you come off the blood thinner. With your numbers well controlled, is discontinuing the blood thinner for 5 - 7 days to allow the injury to heal a risk you believe in your best interests?

For what it is worth, I have made the decision in the past to temporarily discontinue the aspirin in similar situations. I have also choses to cut the aspirin dose in half at times. However, my MPN profile and situation is not the same as yours. You will have to make the decision you believe to be in your best interests.

Hope you feel better soon.

[Buggerbear in reply to hunter5582]

Wow, bet your leg and hip were very painful! I know you are extremely careful in walking on ice now. You usually don’t forget your mistakes, carelessness and falls.

I don’t mind stoping the blood thinner and aspirin for 5 to 7 days. I have done that for a back epidural, colon polyp surgery and dental procedure. no problem for me.

What I have never ever done is stop the Jakafi ever.

Stopping roxolitinib can cause rebound splehomegaly & cytopenias, acute respiratory distress syndrome, inflammatory response syndrome, development into acute myeloid leukemia transformation, causes suddern cytolcine storm & sytemic inflammatory response and acute telapse of disease symptoms. This sounds very scary to me but I don’t know..

It is ashame a Rehab Center won’t take you if yoi are on a cancer med!!

Many thanks as always to you Hunter!!

[hunter5582 in reply to Buggerbear]

I think I would not stop the jakafi in this situation. It is NOT a blood thinner. It is a JAK-inhibitor. While it is a "cancer" medication, it is NOT chemotherapy. jakafi.com/polycythemia-ver....

It really does look like you need to engage in PT to recover from the injury, I cannot understand why being on Jakafi would be a concern in receiving physical therapy. That sounds like ignorance of the reality of MPNs and their treatment. Perhaps your hematologist can help with this. I would suggest it is time for education and advocacy. People with MPNs should not be denied access to medical care based on their condition and treatment.

Hope you find a solution soon.

[ainslie in reply to Buggerbear]

sorry to hear you had a fall, stopping Rux suddenly can be very risky especially on higher doses, usually it should be tapered down , you’re Haem should be advising on that and really discussing with the hospital, I also don’t understand why you should stop it but I am not a doc, that should be discussed between your Haem and the docs treating you. You mentioned stopping Rux can cause transformation to leukaemia, I have never heard of that and wonder where you got that info from, it can cause rebound of symptoms and change in counts but never heard about causing leukaemia, I would doubt that very much.

I say this not to disagree with you but so as not to worry others reading this post.

I wish you luck and I hope your team can talk to each other and look after you properly.

[william-Indo in reply to hunter5582]

It make sense to stop the aspirin for a while.The benefit is much more than risk

[Buggerbear]

Thank you Hunter!! I totally agree and told the Rehab facility I would bring my own medicine and they would not be responsible for ontain it, as I now get it free from Incyte ….. Thete would be a lot more risk if I went off the drug than staying on it.

I am so disappointed in my oncologist for putting that tesponsibility on me to choose…. no advantage in rehab if the PV returns with a vengenance!

You can’t fight the system and Medicare has really gone down the hill in the U.S.

[hunter5582 in reply to Buggerbear]

There are HUGE differences in rehab facilities in the USA. I took my Mother to one and had to take her back out inside of 6 hours. That place was an appalling armpit of a facility. I doubt my Mother would have survived being placed there.

Suggest shopping around for rehab facilities. I found enormous differences when placing people into these care centers. Even in the best centers, you need to be in a position ao advocate for yourself. Even better, have a care buddy who can advocate for you when you do not feel up to it.

All the best.

[Buggerbear in reply to hunter5582]

Thank you Hunter and you are absolutely correct!! This old world had changed a lot and is still changing at a great rate of speed!

Thank you and all the others on Healthunlocked…. you all are my support system and i appreciate all the caring and knowledge shared on this website!!

[DJK12]

I think you need to speak to your haematologist again before stopping ruxolitinib/jakafi abruptly. As you've obviously read there are dangers of 'sudden withdrawal syndrome' which is is well known and people are generally tapered of it. I had my dose dropped ( not stopped) too quickly and ended up in hospital for three days and the duty consultant, by luck an MPN expert, was suspicious this was the cause. My own consultant was equally experienced so it was surprising he had advised it.

[Buggerbear in reply to DJK12]

No I am not going to stop Jakafi. I will just hire someone to check on me and do laundry, dishes and a little cooking. I can buy a walker, toilet chair, and shower chair and get physical therapy to come to my house. i depend on my meds to keep my blood levels checked and way too big of risk to quit Jakafi.

[DJK12 in reply to Buggerbear]

That all sounds a good plan. You've had a horrible accident and no doubt an awful shock and I hope it starts to improve soon. The added complication of an MPN is such a nuisance.

[Buggerbear in reply to DJK12]

Thank you DJK12 for your kind words!

[Rem31]

Two years ago I knocked my elbow on a door frame and it resulted in a haematoma the size of a chicken egg with bruising from top of arm almost to my wrist. Although it looked dramatic there was nothing broken so not much to be done.

I spoke to my Dr and haematology nurse and neither were overly concerned. Both said it would take a while to heal and blamed the aspirin. Neither advised stopping any medication but I decided to stop the aspirin for maybe 3 or 4 days.

It took 12 months for the haematoma to go completely and before I could lean on the elbow comfortably. I’d certainly have been a lot more troubled if it had been my knee joint and I hope you start to mend well soon.

[Buggerbear in reply to Rem31]

Gosh, you must have really hit your elbow hard . I am sure that put you out of commission for a while and 12 months to completely heal!! Elbows are extremely important and we take these joints for granted.

Thank you for your kind words Rem31!!

[beetle]

I fell and severely bruised my knee/leg. I did not stop Jakafi and I am not taking aspirin because of low platelet count. The bruise took literally months to resolve and as Hunter mentioned it spread down my leg. I am left with a numb area from the original impact and brown staining of the bruised skin. This is because of iron overload from transfusions. I am fair skinned and have many brown marks from various bruises over time. I can’t go out in the sun so maybe this is my only way of getting a tan?!!😂

[Buggerbear in reply to beetle]

Thank you Bettle for sharing this information with me. I will know what to expect!

[DiveGoddess]

Buggerbear,

Is the rehab because you can’t care for yourself? Specifically are you dizzy and can’t stand. If you have someone who can help with specific needs, and some things like wheelchair, walker, crutches, shower chair, you maybe able to go home. Neighbors might be willing to bring in groceries, or a church if you can’t afford a food service. In US, care.com is a site you can find someone to help in home care. The hospital case manager should help with knowing what your insurance will provide for certain needs. Also your insurance may have an advocate you can call and speak with. Phone number listed on insurance card. Best of Luck.

[Buggerbear in reply to DiveGoddess]

Rehab won’t take me because I am on cancer meds ….i told them i have the meds with me and they would not have to supply them or be charged for them. Another Rehab said they wouldn’t take me because I didn’t have a break or a sprain so no skill needed. Think i will be going home today or in the the morning.

thank you Dive Goddess for good wishes!’

[Leighcox85]

coming off rux is not a good idea I was changed over recently and I had to be tapered off using steroids it’s dangerous to just stop and my mpn specialist always told me to never suddenly just stop I have mf have got a specialist you could ask for advice it looks very painful I hope you are ok

[Buggerbear in reply to Leighcox85]

Yes I agree.. the PV can come back with a vengenace! I am shocked at my oncologist’s response but a lot of drs think if you are over 65, you are close to death anyway. . Wish I had MPN specialist and it might be worth driving to Agusta, Ga to see!

Thank you Leighcox85 for your kind words.

[william-Indo in reply to Buggerbear]

Good decision.

Wish you all the best

[azaelea]

Hi, a few months ago I fell badly onto my knee like you. I rang haematology for advice as I was worried about developing a clot. Told there was nobody available to speak on phone they would ring back. They didn’t so I tried again, no reply twice so gave up. Huge haematoma all colours of rainbow and next day whole leg covered in bruises black down to toes. Eventually saw Practice Nurse at GP’s who was more concerned about infection and put me on antibiotics. Things gradually resolved and I just got on with it myself and leg cleared in about 10 days, haematoma about 6 weeks gradually went down and colour returned to normal. Looks fine again now. I would add that I was also concerned as I had had a total knee replacement several years ago. Mine sounds a bit like Hunter’s. Do hope yours gets better quickly without any trouble worrying about your medication.I’m on Hydroxycarbamide for ET JAK2+ and Clopidogerel. We have no Haemo Nurse we can specifically contact . Communication isn’t the best although it’s a large hospital in N.E. England. Best wishes, Fran

[Buggerbear in reply to azaelea]

Sounds like it is a slow process to healing but so glad you are better now Fran! The hospital did take 2 blood cultures so hopefully those will be ok. Did give me oxygen and said I was negative for Covid but positive for flu. Gonna have a breathing treatment and finally had. bowel movement thank goodness!

Sorry the communication there in NE England is poor, but will definitely be changing my oncologist to one that is truly concerned about my health!!

Thank you Fran for sharing your story and wishing you all the best!

[tracey13]

My word this looks terrible you must be in so much pain. I feel for you.

So my husband is on jakafi been on it three years now.

He had a severe vertigo attack on holiday in Mexico . My sister contacted his consultant and he said to stop the jakafi it won't harm and restart it when we returned from holiday.

In all my husband was off jakafi for 10 days he's had his bloods done twice in the last two months and his levels never changed.

I hope you get sorted and make a speedy recovery.

Tracey

[tracey13 in reply to tracey13]

My husband stopped his jakafi as he couldn't stop being sick for three days so he couldnt keep his medication down.

Tracey