Experience of withdrawal from inhibitor treatment?

[merlisa]

Who has slowly withdrawn from inhibitor treatment after using inhibitor, such as Rux.

[socrates_8]

Hey Merlisa...

HNY, to you & yours...

Yes, I had to cease taking Rux' in order to have a "seroconversion" of the CV–19 vaccine, in order to create antibodies etc.

Ruxolitinib Withdrawal Syndrome (RWS), is real I am afraid... However, it was required in order to protect myself from infection.

The consequence of taking Rux' means that our 'Immune' systems are barely functioning, which in turn creates a heightened vulnerability to infection. However, there are also a number of drugs that prevent the creation of 'Antibodies'. Ruxolitinib, Methotrexate & other chemotherapy class drugs can prevent.

So I was forced to live w/ RWS for a few weeks, but panadiene forte & paracetmol helped during that period, in my case...

I ceased Methotrexate completely, & reduced my Ruxlolitinib, from 50mg daily to 20mg.

The discomfit was entirely manageable in my case... & short-lived...

Hope this helps...

Steve

[merlisa in reply to socrates_8]

Thanks Socrates for your information.

I once stopped Rux because of the extremely low blood picture caused by the excessive dosage. But the subsequent medication was very standardized. If the dose is reduced, in fact, I suggest that the small dose should be reduced instead of 20mg from 50mg. Such a huge change will lead to an outbreak of inflammatory factors. At this time, you will feel the symptoms of MPN, such as bone pain, itching, spleen enlargement, etc. This is what my doctor conveyed to me.

I am very cautious about every reduction. The amount is small and at least a few months away from the last change. In the first few weeks of each reduction, I will feel uncomfortable with my spleen. If I go to the B-scan, I will also find that my spleen seems to be enlarged. In fact, this is the role of inflammatory factors, which are controlled by the disease. But as time goes on, this feeling will gradually disappear, and then the spleen seems to have changed back to its original size. The premise is that this reduction does not reduce to your lowest dose. I mean the lowest dose is the dose that just makes your spleen shrink to the best extent.

In fact, I actually have the idea of reducing the dosage a little bit until I don't take Rux. But my doctor doesn't agree. I have changed the reticular fiber from+++to+++by taking Rux. I really want to go back to take interferon.

Hope my reduction experience can help you.

Merlisa

[ainslie in reply to socrates_8]

I am also on Rux and I can’t agree with your comment that with Rux “ our immune systems are barely functioning “ , if that was the case we would all be dead. I am on 20+17.5mg for PV and my immune system is probably normal for someone my age, I am perfectly healthy for my age. Rux can lower immunity but it can still function very well, especially if one compensates in other ways by healthy living, eg exercise , healthy food and lifestyle etc.

It is also well documented that coming off Rux for any reason should where possible be tapered slowly , if my memory serves correctly something like 5mg per week (check with doc). If it’s done properly there should not be withdrawal symptoms but at some point the symptoms and counts one had pre will return. Patients with MF tend to have a lower immunity than those with PV or ET with or without Rux.

My motivation for writing the above is not to disagree but to reassure those who are on Rux who may be concerned about about their immunity after reading your post, although I am sure you wrote it with the best of intentions.

Wishing you the best of health

[merlisa in reply to ainslie]

Hello Ainslie,

I found that the dosage of your Rux is quite high. Maybe I took it late, because I had been misdiagnosed before for several years. In fact, I had a MPN history of six or seven years already when I used the Rux. My direct sense of Rux is that the spleen shrinks awesome, but the blood also drops severely. Especially for platelets, with the prolongation of Rux use, platelets will become lower and lower, because Rux itself is used to block the JAK-STAT pathway, which is the only way for megakaryocyte to differentiate into platelets. From my biopsy report, there are many many and many abnormal megakaryocytes in my bone marrow cavity, but they did not differentiate in platelets. What I'm worried about is the days without platelets. It would be great if we could take Rux as flexibly as interferon.

Hope this information will help you.

Merlisa

[sbs_patient]

I have PV. I started on ruxolitinib back in August at 20 mg/day (140 mg/wk). This led to anemia; the dose was first reduced to 100 mg/wk and then to 70 mg/wk,, where it has stayed for the past couple of months. I didn't see any symptoms during the reduction, except more strength as the anemia receded. I am now doing well at the current dose.

[merlisa in reply to sbs_patient]

It's good to hear that everything is fine with you.

However, I still recommend that you reduce the dose of Rux and add interferon to intervene in MPN-PV at the same time.

[sbs_patient in reply to merlisa]

Thanks for the advice. However, I'm going to stick with the recommendations of my MPN specialist hematologist, Dr. Selina Luger of the University of Pennsylvania.

[merlisa in reply to sbs_patient]

I believe your hematology professor's proposal is correct, envy that you can have a good doctor. 70mg/wk that I think it is OK. Please also ask your professional for me when you see a doctor next time. if Rux can be gradually reduced the dosage and finally get rid of the possibility of it. Because I am worried that my platelets will no in the future, because Rux will inhibit the final differentiation of megakaryocyte.

Thanks!

[sbs_patient in reply to merlisa]

Finding a hematologist with MPN expertise is not easy. I live in a relatively remote part of the US, far from major cities, and the MPN experts are usually found in major hospitals with large cancer centers. Furthermore, I wanted to use an expert who could confer with me by telemedicine. In the US, this can only happen within the individual states, so I was limited to my state of Pennsylvania. Searching there brought me to the cancer center at the University of Pennsylvania in Philadelphia (180 miles from me!), and that's where I found Dr. Luger.

[Leighcox85]

I did a with rux I had come off it to then try fedratinib I was 25/25 rux daily I had wean 5 a week till I got to 5/5 I used steroids to help with symptoms till I started fedratinib unfortunately fedratinib failed for me so iam back on rux now my immune system dropped to nothing I picked up multiple infections all at once covid uti lungs and eventually I got sepsis which spread into my bones I was rushed into hospital I had emergency surgery to wash my bones of the infection and started ivs to contain it my levels have dropped very low and even with transfusions seem to stay low despite that iam not to bad in myself we are starting the process to see if sct is a possibility as I have complications if your struggling with symptoms be sure ask for steroids they help a lot

[merlisa in reply to Leighcox85]

Hello Leighcox,

I'm deeply sympathized to heard what happened to you, If Fed doesn't work for you, then you may have been exposed without Rux, and I can see that your original dose is not small. I means the time you cut off Rux. If the supply of Rux is cut off at once at a large dose, those reactions are quite severe. Excuse me for asking, If Rux is used well, why try Fed? Or are you forced to choose Fed because you have other bad situations?

Merlisa

[Leighcox85 in reply to merlisa]

I had been using rux for nearly 6 years it worked well but then my blood work started to drop to very low levels platelets went down to around 22 hb was often below 70 meaning I neeeded transfusions and my symptoms were really bad especially the night sweats my team said rux had become less effective and fedratinib was my next try as my platelets are so low iam ruled out of any trials as of now I have no options I need a liver scan to see if it’s strong enough attempt sct fingers crossed it is I have my scan Friday

[merlisa in reply to Leighcox85]

This situation belongs to drug intolerance. In the opposite direction of drug resistance, many people will eventually face this problem. For the Rux, there are more people on intolerance than on drug resistance. This is my feeling of the patients around me who take Rux. In fact, you can add some glucocorticoids or use a small dose of Eltrombopag, which can also prolong the use time of Rux, and I don't think Rux needs to be taken in a large dose for a long time. This will block the pathway and eventually lead to drug intolerance. In fact, if you change to other drugs, such Fedratinib you will also have this low platelets issue. Because it is still a pathway inhibitor, you are forced to have blood transfusion and transplantation. This is the worst part of this kind of medicine. That's why I want to cut down does and even quit Rux.

However, I have not contacted or dared to withdraw the drug completely, so I want to get more clinical information and suggestions from better MPN doctors in the world through this platform.

[socrates_8]

Thanks Leighcox85...

HNY, and I sincerely hope that you are beginning to cope much better w/ your current treatment regime.

Ruxolitinib treatment is designed to suppress our "Immune Systems", and through that mode of suppression, it is meant to help reduce 'Inflammation' and aid in causing a reduction of symptoms (especially for Spleen size etc). Perhaps Ainslie is unaware of how Ruxolitinib is supposed to aid a variety of people w/ an MPN(?)

However, depending upon our "Type" of MPN, each of us might have some variation in our own bodily experiences, as is evident just by the responses above...

As Leighcox has mentioned, I too often suffer from anaemia, & higher levels of extreme fatigue, due to the suppression of my immune system, and I also suffer from a host of other unwanted infections, that are indirectly caused because my "Immune System" is being suppressed etc.

This year, I started w/ yet another TIA, (minor brain stroke), which saw me taking a week to recover from a partially paralysed left side, & then a week later a contracted the nastiest Gastro' bug, (took just over a week to recover), I believe that I have ever had...

Fortunately, for me, and because I have continued to remain vigilant w/ all my safety protocols, I am yet to fall to CV–19. Although my experiences becoming vaccinated were a tad rough around the edges, I survived, and was eventually protected from CV–19.

For me, the purpose of these types of FORUMs, is to openly share all our MPN experiences, while also remembering, that each of us is just that little bit different in body chemistry, and may therefore observe slightly different outcomes even though our Dx and Treatment regimes might bear some similarity...

Best wishes all...

Stay happy, safe & well... belated HNY...

Steve