Ruxilinitib

[artydutch]

Has anyone managed to get Rux covered by private insurance.? If so, who was the insurer and what stage were you? Was it difficult?….

[EPguy]

I'm in US and had no trouble. But that's not helpful info for a UK person.

What is interesting is:

"Dramatic response of refractory sarcoidosis under ruxolitinib in a patient with associated JAK2-mutated polycythemia"

erj.ersjournals.com/content...

Jak-i's are a new thing in treating autoimmune conditions. I'm on it and hoping for that benefit in my Sjogren's. Just another reason to consider trying it.

[artydutch in reply to EPguy]

thanks! I am so pleased your are benefiting from Rux. My doctors are suggesting starting as they hope it will also address my sarcoidosis. However I do not totally meet Nice criteria, but have some private medical cover. Just wondered if anyone was successful privately…

[Aldebaran25 in reply to artydutch]

Hi ! it is the first time I find someone with sarcoid in the MPN group! I have cutaneous sarcoid, now for the past three years, it started one year after the PV was diagnosed . I am on Peg and playing a wait and see game as the sarcoid may get worse (not getting better in any case). My next step would be Rux. The doc at Guy's said it hopefully will get NHS approval for PV in the near future, fingers crossed. Good luck with the private insurance as generally they do not accept coverage of chronic conditions, but I have not tried myself. Let us know how you get on.

[EPguy in reply to Aldebaran25]

You can see in my posts this year that IFN with a known (or unknown) autoimmune disease is added risk of aggravating that condition. Mine is very aggravated. These outcomes remain quite rare, but severe.

Some autoimmune treatments specifically seek to reduce IFN-a, the one we take, so deliberately adding IFN to it could be undesirable.

So Rux is well worth seeking if you can, wishing you well.

[Aldebaran25 in reply to EPguy]

thank you EPguy, your words are wise. I am keeping a very close eye on my sarcoid and I have been booked to have regular checks with dermatology. The docs here have told me that the instant it appears to be getting worse we stop the ifn. Rux is definitely in my future.

[EPguy in reply to Aldebaran25]

"Instant" is the right word, your Drs are looking after you well.

[artydutch in reply to Aldebaran25]

I am sorry to read you have sarcoid too!

I had a heart attack in 2019 and. 3 months later I was diagnosed with sarcoid after a ct scan. Lung lymph nodes, joints and they also found sarcoid in my bonemarrow biopsie, so systemic sarcoidosis in multiple sites. Tried steroids and methotrexate and now azaothiprine. Primary MF inter mediate diagnosed in 2022. Struggling with multiple symptoms.

Are you under Claire Harrison at Guys?

I saw her in April and she is trying to find a treatment for both sarcoid and MF and is checking with colleagues worldwide. So far no news on this and will email in the next few weeks…….

she said interferons were not suitable for me, but unsure why.?

To get Rux for MF on the NHS, you have to be high risk in the UK.

Good luck with your treatment!

[EPguy in reply to artydutch]

Likely Dr Harrison said IFN is no good for you because she is protecting you from making your autoimmune condition worse. You can see my recent posts on my severe autoimmune reaction while on Bes. This is a known risk.

So by the definition of autoimmune risk, you're "high risk". In the MPN context, one would think MF is automatically high risk.

Anyway Jak inhibitors (ie Rux) are being increasingly recognized for use with autoimmune disease. A 2nd example here:

"The Promise of JAK Inhibitors for Treatment of Sarcoidosis"

ncbi.nlm.nih.gov/pmc/articl...

Dr Harrison may have a reason not to consider this, but with at least two reports here it does point to more reason for you to qualify for Rux.

[Aldebaran25 in reply to artydutch]

So sorry that your sarcoid is affecting so many organs. I participate to the UK sarcoidosis group on Facebook and read about the difficulties that patients with sarcoidosis have to deal with, and it is horrendous. I am glad that Prof Harrison is looking after you , I am with her too. They certainly decided not to prescribe IFN in your case because it can make the sarcoidosis worse, as EPguy already pointed out. In my case the sarcoid is much milder and affecting the skin only. I clearly hope and pray that it will not start attacking any other organ and keep a vigilant attitude. Good luck and please keep us informed on how you get on and whether you manage to get access to the ruxolitnib.

[artydutch in reply to Aldebaran25]

I am part of the sarcoid group but rarely post. Also follow the east Anglia group who I zoom with. where are you located?.

[Aldebaran25 in reply to artydutch]

London

[DJK12 in reply to artydutch]

You are having a very difficult time but hopefully Professor Harrison will come up with a possible solution. I presume you have MF intermediate-1 because Ruxolitinib is available for intermediate-2 as well as high risk in the UK. I've been on it for over 5 years for post ET MF intermediate-2. Do hope some successful treatment is found soon.

[artydutch in reply to DJK12]

I saw prof Harrison for a second opinion, but are under the care of Cambridge university hospitals. Yes MF1. On third treatment for sarcoid as first two to toxic to liver and joints. Perhaps they will consider me on account of both conditions….

I will contact Prof Harrison also to see how she would suggest accessing Rux, as she suggested this. Where are you treated now?

[DJK12 in reply to artydutch]

I've sent you a PM.

[hunter5582]

You may want to reach out to the folks at Incyte cares for assistance. Perhaps they an provide some guidance.

incytecares.com/?utm_source...

[artydutch in reply to hunter5582]

hi, thanks for the link! In reading I note that it is for USA patients only and Puerto Rico.

I will research to see if anything similar exists in the Uk…

[hunter5582 in reply to artydutch]

That is the only link I have for Incyte. You may want to contact them fora UK referral.

[artydutch in reply to hunter5582]

I will try this, thank you!

[K-itty]

Yes, my insurance paid for the meds and I also think the manufacturer covered the copay...my insurance is Blue Cross/BlueShield. Once my oncologist wrote the pre authorization, it went very smoothly from there.

[artydutch in reply to K-itty]

are you in the USA?

[K-itty in reply to artydutch]

Yes, sorry, I realize that may have not been helpful. Contacting Incycte would be a start. My Oncologist's administrative office took care of all of the details for me, so very helpful. So far, the drug has been really helpful in eliminating my extreme inflammation and other than a very weird head thing and an upset stomach, no major side effects.

[artydutch in reply to K-itty]

thank you! I will try after we are back from a summer break. I am glad it has helped you. Take care ..