Tagged: Revlimid from India
This topic contains 76 replies, has 15 voices, and was last updated by 
Hi Mulberry, I am not one to post on forums normally. But i want to do my little bit to help others find out about the possibility of sourcing from India. Nearly all of us who are in remission could benefit from taking Lenalidamide, and nearly everyone could afford the £700 odd cost of it from India. There is a risk of side effects from taking Lenlidamide/Revlamid, of course. But that would not stop us taking it if it was available on the NHS.
It is so easy to go down this route, if anyone is interested. i just want it to be more widely known, so everyone has the chance to do the same as you and I have, if they choose.
hi all, hope doing well in your treatments. has anyone sourced from India to replace Revlimid in induction therapy VTD>VRD?
we are in first cycle with dad, started last week, and reading up on Lenalidomide we are wondering whether it might be worthwhile replacing Thaladomide now, rather than waiting for maintenance when we can get it on NHS. just not sure, and the £10,000 per month to go co-payment right now is quite high.
I read that Natco can start distributing its generic next year now. So is all the litigation just around the US/developed market, and it is already distributing its generic version everywhere else?
Tx
Hi
I will post later, literally on my way out. Welcome to the forum, even though you would prefer not to need to be here.
Jane
The patent for Revlimid lenalidomide is now held by Bristol Myers Squibb. The patent has different expiry dates in different parts of the world, in the USA I believe that it is March 2022, later in UK countries. Some Indian pharmaceutical companies are already producing generic lenalidomide, eg Cipla, Dr Readys, Natco. These companies have agreements with Bristol Myers to supply a limited market in USA from March 2022.
In the meantime they sell their biosimilar generic drugs to the Indian subcontinent and elsewhere. Unlike to USA it is legal for UK patients to import prescription drugs for ones own use or for a close family member.
However if you do not have a UK prescription, you need to buy through an intermediary who can obtain a prescription from an Indian hospital (which in the case of a diagnosis of myeloma is easily done)
I chose to have lenalidomide during induction rather than thalidomide because research has demonstrated that lenalidomide is 8% more effective, and it is more easily tolerated (a kinder drug). At the time I co paid for this, using NHS for Velcade and dex, and cancer treatment services, but paying for Revlimid. I think this is only possible in the bigger, regional or research hospitals. For the past 2 years I’ve been buying Indian lenalidomide as maintenance. In hindsight I could have used Indian lenalidomide all the way through for induction too. It felt a risky procedure when I took the first steps, but I was reassured by mass spectrometry of the generic drug, & by familiar minor side effects, that it was indeed lenalidomide that I was taking.
Some UK consultants have been supportive of patients decision to import the drug, others have not been happy to treat patients who want to go down this route. It is worth a discussion with your father’s consultant.
I would have had no access to lenalidomide maintenance after stem cell transplantation, which more recently diagnosed patients do, so the benefits were clear cut for me. But I’ve always been pleased with my decision not to have induction thalidomide as I did get a Complete Response after SCT, and I haven’t been left with peripheral neuropathy etc.
If you want details of my contact on India, please PM me.
Hi I would echo all that Mulberry has said. I underwent SCT just over 2 years ago, and I have been buying Natco Lenalidamide from India for the period since then. I am coming up to 2 years on the drug, and my consultants know all about it and are very supportive. It only costs about £750 per year, so it is affordable for most people – although it is now available on the NHS. (Roll on the day when the NHS can source it from India too and save itself a fortune).
All the best
Endorse all of the above from Mulberry
I switched from privately funded Revlimid ( about £5k per 4 week cycle ) 6 months post SCF to Dr Reddy (sourced in India by @ Nirav Sangai).
I did this with consultant support and had the drugs tested in a U.K. lab for authenticity and efficacy. Consultant was interested in results and if there was any change to my bloods with the switch … Did 7 cycles of Dr Reddy with similar ( minimal side effects )
Stop post ….My consultant has just told me I can go back on Revlimid after change in NHS policy that now permits use of Revlimid as maint drug post SCT.
FWIW I have absolutely no doubt that the drug supplied from India made by Natco is legit. Natco is itself a huge pharma and a few years ago it was engaged in a patent battle with the owners of Revlamid (at that time it was Cellgene) in the US, and it was this court case that was settled out of court and which led to the concessions which Mulberry has mentioned.
Rosary, how are you getting access to Revlimid maintenance? My consultant (& Myeloma UK) have said that NICE have specified that only patients able to start within 100 days of SCT can have NHS lenalidomide maintenance treatment, on the (pretext) that it hasn’t been trialled for use in patients with inactive or stable disease.
I’m happy to continue to buy (Cipla) also through Nirav Sangoi, (I feel that the Indian drug is extending my life just as much as my consultant is and I now feel some loyalty to Nirav), but I’m interested if some consultants are finding ways to treat the group of patients who had SCTs after the maintenance trial closed and the NICE change of policy a few months ago.
Sachbarnes the prices quoted by Rosary and Yorkshirelad are in line with my experience too.
tx so much for the replies all.
mulberry Jane, did you have VRd lite for induction, I noticed you said lower dose? I am assuming we would be on a higher dose which is why we are being told around £10,000 for co-pay to use Revlimid instead of Thalidomide.
dad is standard risk and will have ACST after the 6 months. they have currently put him on 50mg Thalidomide a day, 2.25mg Bortezomib a week, and 2x20mg dex a week.
Will defo discuss with our consultant. We were thinking about waiting for the first cycle to complete, and then ask for options to upgrade if the initial results weren’t great. not sure if a trend is noticeable after 1 cycle?
I am guessing our consultant will be more apprehensive for us sourcing the Lenalidomide ourselves for induction, as it forms part of their current care protocol. With maintenance maybe they would be more approving when its vs nothing they could offer as an alternative (until this year).
Thanks again and great to hear you are all doing well since this thread started several years ago.
I was taking 25mg lenalidomide during induction VRd in 2018, I was charged just under £5000 a month for 6 cycles. Revlimid costs the same, whatever strength, so that I would be paying the same price now, even though my blood counts can only cope with 5mg dosage on an ongoing basis.
For me the most important thing was getting lenalidomide as maintenance because research shows it extends progression free survival and overall survival. I am so relieved that this is no longer an issue for patients like your dad, who will be entitled to it if he wants it.
Ty. I think they must have increased the pricing then as I tried looking online and it seems to be around £10,000 a cycle inc VAT now.
Hopefully we have successful VTD+ASCT then go onto maintenance, but will just weigh up after our first results whether we should try and change to VRD, even if that means paying that heavy whack for it.
@mulberry, not sure how I got back on Revlimid ( on NHS ) as I was +100 days post SCT but maybe my history of taking Revlimid as part of induction and then switching to Dr Reddy plus being a guinea pig for the consultant to monitor ( he has a number of patients sourcing from India ) plus a sumpathetic/ interested consultant all helped
@sachbarnes when I did co-pay I only paid for the Revlimid and everything else funded by NHS so not sure how you get to £10k as Revlimid around £5ka cycle …. I think you need a helpful consultant to get this sorted and as @mulberry said attitudes between consultants vary – my fist consultant would not support Indian Lenalidomide but my second consultant did ….
Good luck with everything, 20mg of Dex I found hard to deal with ( mood swings ) so one for Dad to be aware of
I am a big fan of http://www.healthtree.org which has a wealth of good info on the Healthree University
Hi, yes not sure why we were told £10,000 a cycle. Have called them and waiting for them to get back to me. Will ask about the Indian route as well. I think as we are a week into the first of VTD cycle we will probably have to complete it. I guess if a great response we can judge what to do, but likely we want to get onto VRD.
Thanks for the tip re Dex. I think it is having an effect on mood swings straight off the bat. Was there anything that could be done about that or did you just power through?
Another question, did you all have to have a period of melphalan before ASCT? Or are there any alternatives to that drug? I know from the trials more of the serious side-effects of Revlimid were when treatment included Melphalan at some stage as well.
And finally, did you all have consolidation or straight from ASCT to Revlimid maintenance?
Tx
Dex – my tip is to exercise as you “come off” it ( I used a personal trainer throughout my treatment) – the weekly high/low cycle is predictable, I lowered dose to 10mg after 4 cycles to help the marriage ! Remarkably few other side effects so I thought myself lucky overall
Yes I had the melphalan which I coped with fine – it’s a harsh drug and made my hair fall out…..don’t know any alternatives but worth keeping an eye on all the blogs – SCT still regarded as gold plate treatment although increasingly being questioned by some docs in the US – I did everything I could to look at alternatives to SCT but in the end decided it was for the best ….loads on forum about this questions
On the consolidation question, I went straight onto maint. I only achieved partial remission and I did an extra 2 cycles ( 6 in total )before the SCT.
If you are planning ahead to the SCT get your dad into good shape – I worked really hard to improve my fitness/ diet and I think it helped me generally with the chemo and then with all the tests you have for the SCT and then to bounce back from the SCT quickly
Myeloma is very individual so be careful about there being any validity to these answers – how old is your Dad and has he been staged ? High risk / low risk ?
I went onto a no sugar (except fruit) diet, completely cutting out added sugar on the basis that Dex affects blood sugar levels and sugar absorption.
I am the only person I’ve heard of so far who had no side effects from Dex, no mood swings, no sleepless nights etc. In my opinion going without sugar is better than Dex side effects.
In the UK consolidation is not usual practice, (not in NICE protocol) I discussed having it, but had had a Complete Response to ASCT so my consultant thought it unnecessary.
Melphalan is given as a single high dose infusion immediately (a day or two) prior to ASCT. If Complete Response has not been reached during induction therapy, another chemotherapy drug, cyclophosphamide, is given as an infusion about 2-5 weeks previously, after the end of the last cycle of induction.
I also recommend Healthtree. There are two international databases that myeloma patients can put their details into, Healthtree and All4cure. It’s worth looking at these, both can match patients with others with similar myelomas and provide researchers with a sizeable database which hopefully will promote treatments. Neither database involves the patient doing much, if permission is given the UK hospital just automatically passes test results to the database in the same way that they do to the GP.
Myeloma UK are hoping to get a UK database, but we haven’t got one yet.
The topic ‘Lenalidomide from India’ is closed to new replies.
