Jakafi and mood changes

[Titatagg]

Hi

I have recently changed from Peg Interferon to Jakafi and I am struggling with side effects . I have taken Peg for around 10 years and it suited me well. However I have developed Rheumatoid Arthritis hence the change to Jakafi . I can cope with the physical side effects of bloating , skin rash and head ache but I am struggling with low mood and dare I say depression . I have never experienced this before . Has anyone else had this side effect.

Thank you in advance for your replies.

[ainslie]

I have never heard of Rux causing low mood, usually the opposite because generally people feel better physically on Rux and hence better mood. We are all different of course, I suppose the only definite way to check might be to discuss with your Haem if you could gradually come off it for a period to see and then re introduce it. Some people do have some GI issues although so far 7 years on high dose I don’t.

[hunter5582]

I have not heard that mood changes/depression is a common side effect of Jakafi. It might be a very rare side effect. Best to consult with your MPN care team about any changes you experience after starting on Jakafi or any other med.

[George1976]

Tried it for 2 months. Had already tried anagrelide, peg and Hu. At first Rux made me feel euphoric, unnaturally happy. After a few weeks it got to the point where if I missed a dose or was a few hours late I’d get withdrawal symptoms that left me feeling depressed. My platelets were still going up after 2 months despite increasing dosages so I went back to Hu.

[ainslie in reply to George1976]

It’s important of course not to miss a Rux dose, it must be taken twice a day , re platelets, it’s common for them to rise on Rux initially but then fall. Mine went from 600 to 760 but started to fall slowly after about 6-8 weeks, they are now 200.

[Yanico]

Hi, rux is good for me. Tried Pegysis for 18 months which was ok but felt nauseous all the time. Only issue with Rux for me is constant hunger and weight gain. We are all different so you need to see an MPN specialist to advise.

[Titatagg in reply to Yanico]

I have been on Rux now for 3 months . Peg for almost 10 years and before that HU which made me really unwell with digestive issues. Which the Rux is also doing. I feel like I am running out of options. I will persevere for another 6 months. Unfortunately it doesn't seem to be controlling my numbers either , even though I am on double the starting dose. Skin rash , bloated and windy. Low mood and venesections every few weeks. Not going great so far ! I am lucky to be in regular coms with the team at guys and they are very supportive. As is this group. It is helping go hear what other people are experiencing. It is a drug that is fairly new so not a massive amount of data .

[gjh8733]

I also noticed bad mood swings but I feel was driven by Besremi changes in dosage and eventual cessation. I had been on high dose Besremi for 18 months. The mood swings lasted about 2-3 months with dose change and after cessation. I have been on Rux now for the last year and no mood swings

[EPguy]

The depression started well after quitting the IFN, is that right? It's not normally listed as a side for Rux while it is known for IFN.

This obscure risk for Rux comes up here regarding a severe brain problem:

mskcc.org/cancer-care/patie...

"Tell your doctor right away if you have signs like confusion, memory problems, depression"

On the extremely unlikely case this is a risk, you should contact your Dr right away.

This source also lists certain categories of rash as an urgent concern.

Your other combination of adverse effects are known, but that is a lot of them early on.

Rux has been approved for PV since 2014 so it has a good sized history. Generally the side effects match what they saw in the trials, but some more details are found with its long clinical use.

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But your post is interesting timing, I just posted on promising signs for an RA drug in MPNs. You could discuss MTX with your Rheum, whether it might be suited for your RA, esp if it might help your other condition. You can then also discuss with your MPN Dr, the reports suggest MTX might work alone or improve response to our other meds.

healthunlocked.com/mpnvoice...

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I also had an autoimmune reaction to IFN, a severe one with no treatments. RA has many so you should find one that helps, maybe MTX.

[Titatagg in reply to EPguy]

I have just read your post re MTX , very informative thank you !