I've been on higher doses of cortisone the last month or so to get over a chronic GvHD in my liver, after initial improvement things have regressed, my consultant is seriously considering replacing the corticoid by Jakavi (Ruxolitinib).
I'd never heard of Ruxo being used like this, anyone have any feedback or experience?
Apart from that I'm on holiday in Zurich with my eldest son - I'm like a kid walking around with my mouth open in astonishment, Good life eh?
Hope the summer is being kind to you all.
Crapaud
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crapaud
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Hi Craaud . I have been on Ruxolitinib 20 mg 2 x a day for six weeks now & feel so much better. No side affects yet wich am pleased with . I had ET. For -3 years now got MF. Hope this helps
I should point out that I had a MF/MDS and underwent a SCT almost a year ago; so in my case the Jakavi is being envisaged as a treatment to fight the GvHD and not as a treatment for the MPN itself - it's that aspect of things my question is about.
Hi Gary, firstly I hope you are enjoying the delights of Zurich, hope you got plenty Francs to spend. . . My consultant has broached putting me back on Rux as a part treatment for my GVHD also but not done as yet. Seems to be an extension of its primary use which is of course to alleviate or slow the symptom progression of intermediate MF. And in some cases depending where you live as a first line treatment.
Like you I am currently taking steroids for ze liver counts with limited success so f you do start Rux I will be interested to see how it goes. . Gary the Guinea Pig ?? . . I've been hosp today and back tomorrow so will ask my consultant about the Rux GVHD as he recently attended Haematology conference in US where the top consultants discuss such developments.
Just to add I'm keen to ditch the steroids as they cause my diabetes and fluid retention both of which I'm heartily sick of, esp having to take 60 units insulin daily. So if Rux is a goer and budgets allow I would have a go at it.
If you read through the post, you'll see that in my case the use of Jakavi (Ruxolitinib) is being envisaged as an alternative to corticoids since I am suffering from a chronic GvHD subsequent to my SCT and the corticoids don't seem to be doing their job efficiently. I had read about the use of Ruxo and the majic trial for MPN cases like yours (for example I have never had spleen issues) but had never heard about its use for GvH relief.
Have a nice and positive day.
Crapaud
p.s. :I keep up my efforts to improve my diet - thanks for the tips.
I'm no expert but from others I have spoken to ,it seems ruxulitnib ..does seem to help reduce the effects of swollen spleen . Also the awful sweating and night flushes ,,
But the fresh food healthy eating habits and giving up alcohole and tins of food and drink ..fizzy drinks .fast food outlets ..all can really make a difference ....your energy levels improve .and I feel sharper mentally ...
Nothing to do with Jakavi - I'll probably know more about how things are going to go on Friday on that one - but I must say ' bless you Twinkly' once again for the bio-Freeze, it helped me blunt the effects of finger cramps and joint pains yesterday, aches and pains brought on by my current levels of corticoids.
Hi guys not been on for a while, Not been so good it seems its taken a bit of time to get me sorted on the Ruxolitinib, bone pain is better but seem to be haveing rather a lot of transfusion had four
Since I started on the Ruxolitinib,I have also been on Eprexx injection once a week as I also have CKD.as well as MF.
Saw Heamatologist Thursday hemaglobin 7.4 sent me for tranfusion that's 10 units sins start of Ruxolitinib. Heamatologist says don't think injection is working so doubled it stating this week she told me it's to help kidneys make red blood cells because they are not doing it as they should be.
feeling tied all the time not functioning well at all & out of breath.
I don't know if you are a member of the mpn-net group but this is an extract of a post on there today. I don't know if it's any help to you...
A 51-year-old male with refractory anemia with excess blast type-2 underwent a myeloablative allogeneic HSCT from a 9/10 HLA-matched unrelated donor after conditioning with busulfan and cyclophosphamide. GvHD prophylaxis consisted of cyclosporine, methotrexate, and thymoglobulin. CD34(+) cells/kg infused were 8.69 × 10(6) kg. On day 29, the patient developed overall grade IV aGvHD with biopsy proven stage IV gastrointestinal (GI) GvHD refractory to HD corticosteroids. Patient conditions rapidly deteriorated and became critical despite the addition of mycophenolate mofetil and budesonide. On day 33, Ruxolitinib was started, and on day 39 the patient clinical conditions gradually improved. Complete resolution of aGvHD was also confirmed by histology on day 54.
CONCLUSIONS:
At 5 months from HSCT, the patient is well and in continuous hematological complete remission without flare of GvHD. Ruxolitinib was discontinued on day 156. Ruxolitinib is feasible and effective in SR-aGvHD though large prospective clinical trials are warranted.
I may be part of the MPN net group, I'm not sure. Could you give me a link to the article - the consultant finished by bitting the bullet last week and has switched me to Jakavi, unfortunately the corticoides are maintained for the moment so I a 'double' treatment.
I find the site very confusing and have been unable to find the original article. If you try this link you may find some more information or join the MPN-NET support group where is where I read the article. mpdinfo.org/
1Department of Oncology, SSCVD Trapianto di Cellule Staminali, A.O.U. Città della Salute e della Scienza di Torino, Torino, Italy. shostakowitsch@libero.it.
2Department of Molecular Biotechnology and Health Sciences, University of Torino, Torino, Italy. shostakowitsch@libero.it.
3Department of Oncology, SSCVD Trapianto di Cellule Staminali, A.O.U. Città della Salute e della Scienza di Torino, Torino, Italy.
4Department of Molecular Biotechnology and Health Sciences, University of Torino, Torino, Italy.
5Department of Oncology, University of Torino, Torino, Italy.
6Department of Pathology, AOU Città della Salute e della Scienza di Torino, University of Torino, Torino, Italy.
BACKGROUND:
Allogeneic hematopoietic stem cell transplantation (HSCT) is potentially curative in a variety of hematological malignancies. Graft-vs.-host disease (GvHD) remains a life-threatening complication. Standard treatment is high-dose (HD) corticosteroids. Steroid-refractory (SR) GvHD is associated with poor prognosis. At present, second-line treatment is ill-defined and includes a number of agents. Novel insights into the pathophysiology of acute GvHD (aGvHD) highlight the relevant role of the host inflammatory response governed by several kinase families, including Janus kinases (JAK)1/2. Ruxolitinib, a JAK1/2 inhibitor approved for intermediate-2/high-risk myelofibrosis, was recently employed in SR-GvHD with encouraging overall response rates. Clinical experience however remains limited.
CASE PRESENTATION:
A 51-year-old male with refractory anemia with excess blast type-2 underwent a myeloablative allogeneic HSCT from a 9/10 HLA-matched unrelated donor after conditioning with busulfan and cyclophosphamide. GvHD prophylaxis consisted of cyclosporine, methotrexate, and thymoglobulin. CD34(+) cells/kg infused were 8.69 × 10(6) kg. On day 29, the patient developed overall grade IV aGvHD with biopsy proven stage IV gastrointestinal (GI) GvHD refractory to HD corticosteroids. Patient conditions rapidly deteriorated and became critical despite the addition of mycophenolate mofetil and budesonide. On day 33, Ruxolitinib was started, and on day 39 the patient clinical conditions gradually improved. Complete resolution of aGvHD was also confirmed by histology on day 54.
CONCLUSIONS:
At 5 months from HSCT, the patient is well and in continuous hematological complete remission without flare of GvHD. Ruxolitinib was discontinued on day 156. Ruxolitinib is feasible and effective in SR-aGvHD though large prospective clinical trials are warranted.
Thanks for your reply, for some unknown reason I have only just come upon it.
For the moment the post-SCT team are trying to persevere with corticoids - the results are middle of the roadish and I'm suffering enormously from the corticoid effects.
The ongoing challenge is to try and keep the liver GvHD under control and reduce the corticoid levels to something easier for me to deal with.
If it doesn't improve in the upcoming 10 days or so, then a switch to Jakavi is on the cards.
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