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Since my husbands transplant (January 2018) he left hospital with acute GvHD and then developed chronic GvHD. He has been on fortnightly ECP since August 2018 when he developed grade IV (very severe) oral GVHD. At the first lockdown this was reduced to monthly. Whether it was due to this we are not sure but his upper body scleroderma worsened significantly. Currently this is static. We feel that ECP is only just holding back the GvHD. It went back to fortnightly in the late Autumn 2018.(if I remember correctly!)
He has continued to develop one condition after another, as one abates another rears its head. His drug cocktail has grown longer.
We are soon to have a discussion with the team as to whether he should be taken off steroids, ciclosporin and ECP and switched to Ruxolitinib.
I would be really grateful to hear of anyones experience with this drug. Was it successful, side effects, infections, how were other drugs reduced if they were? How long have they been on it etc.
Many thanks indeed for any help with this.


  • Hi Gail,

    I did a quick google and came up with a report which you may have seen. This describes some of the background to the use of Ruxolitinib due to difficulties accessing ECP as a result of Covid restrictions and gives some detail on the effectiveness found in some trial areas.


    The reports and surveys that the report is based on don't have large cohorts and there seems to be a mixed response, but generally fairly good, dependant on the type of GvHD and the organs affected.

    If ECP isn't working it does sound like it might be a viable option to try and see if there is a response. Ultimately the decision to try your husband on Ruxolitinib will be one that your husbands clinical team need to take, based on his individual circumstances, which may be dependent on a number of factors associated with his treatment to date and any peripheral issues.

    It would be interesting to see whether it becomes a viable alternative long term to ECP for treating GvHD as I know that ECP is an expensive process, and very time consuming for the patients. I recall that when I had ECP, I was told that the consumable kits (tubes and centrifuge bowls etc) that went in the machines were about £1000 per kit!

    I hope this helps and if others have direct experience of the Ruxolitinib treatment it would be interesting to hear from them.



  • Hi Steve
    Many thanks for this. Will read tomorrow. He has so many issues that we are not sure which are GvHD or not.
    Yes ECP is costing that sort of money which he is very sensitive about using it up!!
    We have felt it helped the dreadful oral GvHD but when that abated scleroderma arrived!
    All very difficult. Would love to hear of anyones experience of Ruxolitinib.

  • Hi, I had acute cutaneous GVHD that progressed to chronic. Treatment with topical dermovate in industrial quantities didn't help much, so after a few months I moved to ECP. That just about held things steady but didn't improve the skin much, and I was getting a lot of steroid thinning of the skin. My consultant started ruxolitinib at 10mg twice a day last March (2021) and the effect was dramatic. Within about three weeks all the GVHD had gone. We started to wean off the ruxo in September, very slowly because apparently rapid withdrawal can cause a major flare up of GVHD. I'm now down to 5mg daily and will be off completely in another 3 weeks. My consultant says that I've had the best response he's seen, but that nearly everyone he's given it to has benefitted.
    I hope that helps!

  • PS. I wasn't taking any other immunosuppressants, just the standard antibiotics/ antivirals. I haven't had any side effects from the ruxolitinib at all. As for infections, I'm just battling away a simple cold, but touch wood (two years post transplant in a month's time) no other infections.

  • Hello Gail

    My name is Michelle I am one of the online community champions working along side other volunteers such as Steve. I am also a SCT recipient.

    I have read back through your conversations and can see some very helpful and factual support provided by others. I haven't received Ruxolitinib so can't offer any experiences, I was wondering how your husband was doing, currently and if the Ruxolitinib hasbe considered and/or started?

    best wishes,


  • Hello GailW, I have been on Ruxolitinib for the past year along side with ECP treatment. Can't comment on whether it has helped my GVHD because it could be ECP as well.
    Side effects on the drug, it can lower some of your blood group levels. nothing major like.
    i am post transplant 2 and bit years now.

    Great news Diana one of the lucky ones

  • Hi Gail,

    I live in Germany. I'd never heard of ECP until I found Anthony Nolan. They use Ruxolitinib and immune suppressants here as standard but they are running research to find better alternatives, at the moment it's "best alternative option" here, not the silver bullet. I myself started off grade 4 bowel GvHD with certican (immune suppressant) and jakavi (ruxolitnib). I had them both very gradually reduced , after a year post SCT and have been off the certican for maybe a month. Yesterday my clinic visit confirmed that the GvHD symptoms are increasing. From this morning I'm back on cortisone... I still take the ruxolitinib.

    You're welcome to ask any kind of question but I have no comparisons.

  • Hi everyone, I am so sorry not to have replied but had not seen your latest comments. He has been on Ruxolitinib for 9 weeks. No issues until now when his haemaglobin has dropped to 94 and haematocrit today 29. This is borderline to be able to continue his ECP!. RBC only 3.15 previously fine.
    This may be due to Ruxolitinib but he has been anaemic before starting this drug of no known origin other than ECP causes this!
    He is gradually declining in mobility due to scleroderma and has developed dropped head syndrome which no one has seen before with this also his jaw spasms. I feel this is due to his drug regime which he does not seem able to come off.
    Still on Ciclosporin 100mgs bd but reduced steroids to 1mg od. He has massive muscle loss due to steroids over 4 years plus.
    It is all very concerning we seem to be in a vicious circle.
    There seems to be no way out here. It is one thing after another with no let up, as soon as one thing stabilises another issue crops up within 48 hours! (no exaggeration!)
    Many thanks

  • Hi GailW,
    I'm Rachel- Lead Nurse here at Anthony Nolan.

    I'm sorry to hear your husband is having such a difficult time with GvHD. Had you seen any improvement with his symptoms over the period he's been taking the Ruxolitinib? I'm assuming not as you mention his mobility worsening? As you've referenced in your post he's on a number of treatments/drugs and so pinpointing what it is exactly that has dropped his counts may be difficult.

    If you'd like some further support or the opportunity to talk further please do call our patient helpline 0303 303 0303 (mon- fri 9-5). We also have a brilliant Telephone Emotional Support Service which you may benefit from using, if you're interested in this you can call us or contact us by email on patientinfo@anthonynolan.org.

    Best wishes

  • Gail I definately got some "softening" in my arms mostly from Ruxo. If I hadn't switched to Rezurock, I'd still be on it. No side effects at all for me... I think the Ruxolitinib really helped me

  • I am taking ruxolitnib 2x 5mg daily, recently reduced from 2x 10mg daily. My transplant was june 2021 and I've had bowel gvhd grade 4 and it's now subsided, which I'm very very happy about, even proud that I saw it through... but now it's gone to skin, all skin, eyes, mouth, ankles, arms. Reading these/your posts gives me strength, I'm going to see this one through too.

    I've just started ECP too and get a very tired first couple of days after it (fall asleep while writing) but after those initial 24.. 48 hours, I think it might be helping my energy levels, my general well being, not sure though.

    My ruxolitnib is called jakavi.

  • Hi GailW

    I'm on ecp, early days, but reducing to fortnightly ecp after 5 weeks, and jakavi (ruxolitinib) 2x10mg a day and 5mg prednisolon (cortison). Bowel gvhd seems better, skin getting worse. Skin treatment, alternate days cortisone cream. Mouth gvhd getting worse. They want me to take cortisone losengers but I'm going to get more info before I start doing that cos I have osteoporosis too. Hope that's helpful. Your probably not checking posts, I see you wrote in Dec 21. I hope you're hubby is coming through ok.

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