[sueharleyParticipant]

Hi,

I started this original post some time ago when I was researching Lenalidomide as a maintenance treatment following SCT.

I know many of you have now gone down this route and hopefully this has been successful.

For me, the maintenance didn’t work and I am now on 4th line treatment with Daratumumab as a monotherapy. I find myself again in a situation where I would benefit from treatment that NICE have not agreed to fund. In this case it is to add Dexamethasone (very very cheap generic steroid) to the regime as my consultant believes this will approve the effect of the Daratumumab. He is not able to prescribe this for me even if though I am happy to pay for it, although I would be allowed to have it if I was to also pay for the Daratumumab, which is approx £60000 for a few months I believe.

I am not in a position to return to India and Covid would also prevent this. It seems that I can get Decmax (dexamethasone) shipped from India but I don’t have a prescription currently and so this is what I now need.

Mulberry, you have mentioned getting a prescription for lenalidomide from an Indian doctor without having to visit India and I was thinking this was a route I could use for the Dexamethasone. Could you send me some details please.

Any other suggestions would also be welcome.

I’m not sure if I could see a heamatologist privately in the UK and get the prescription or if this would mean the NHS could not provide the Daratumumab. It does seem to be a ridiculous situation when I am requiring a generic drug that is very inexpensive.

Thanks everyone, hope all are well as possible.

Sue

[mulberryParticipant]

Hi Sue
I feel that I owe you my current remission, and the peace of mind I have knowing that I am on the most appropriate treatment for my myeloma. I hope I can help you in return.
Your predicament shows that the current NICE regulations are just far too rigid to humanely deal with an individual disease such as myeloma.
As you know it is legal to import up to 3 months supplies of medicines for your own use (or for close family member) so UK patients do not need to travel overseas (unlike US patients for example). In India prescriptions can be issued on the strength of copies of letters noting diagnosis.
I (& some other UK myeloma patients) have been buying lenalidomide through Nirav Sangoi (nirav.dialhealth@gmail.com)
He does this sort of thing & arranging health tourism for Western patients, as his business. I have always found him fair, reliable and trustworthy.
I don’t think he can obtain a daratumumab generic yet, but I’m sure Dex is another matter. In terms of myeloma drugs he can obtain generic versions of thalidomide, lenalidomide and pomalidomide.
I think you need to discuss the arrangement with your myeloma consultant. As co pay is done in the UK, it is theoretically possible to provide one of your own drugs (ie the Dex) and receive the rest of your treatment on NHS. A year ago some haematologists who were not happy to do this now are, certainly in respect of lenalidomide maintenance. If your consultant was able to monitor you whilst taking Indian lenalidomide before, hopefully this won’t be an issue for you. For others reading the thread, you may need to change haematologists to find one who can operate a co pay system. This seems easier in the larger hospitals. It is vital that your treating haematologist knows exactly what you are taking, so his or her awareness is fundamentally important.
I hope this, and the Dex, works.

[sangoinirav87Participant]

Hi Sue,

You can connect me via email or via whatsapp. I can look for both meds for shipping from india. But daratumumab is a bit tricky for shipping so need to check on that and only if it can be shipped I will confirm.

My email – nirav.dialhealth@gmail.com
WhatsApp contact- +919967057067 or +917208105109

[sueharleyParticipant]

Thanks Mulberry,

I am so glad you are in remission, it’s good to hear positive outcomes. I have emailed Nirav and hopefully this will be a possible route for me.

It was quite an adventure going to India when I went in 2018 but I’m glad there are easier ways of obtaining the drugs we need now. I am lucky to have a very supportive consultant at a large UK hospital, he is very used to me being determined to do whatever I can to increase my chances of survival. He will be happy to monitor me and continue to advise. Despite being on 4th line treatment, I am determined to keep trying until I find something that works for me longer term.

Thank you for your helpful and prompt reply.

Sue

[mulberryParticipant]

I hope the monoclonal antibody approach is the key for your myeloma. When it’s known that 2 drug combos work better than single drugs, (& 3 better than 2, and in the USA major myeloma centres are now inducting with 4 drug combos) it seems positively archaic, and counter to clinical evidence, for UK to be giving single drug therapies. And as we are all being told in relation to Covid, dexamethasone is such an inexpensive drug. I hope it works well for you Sue, and you don’t have to face these treatment dilemmas again for a long time.
Mulberry (Jane)

[kwallermyersParticipant]

Just for info, I obtained Natco Lenalodomide from Bonhoa pharmacy, with no prescription. About £120 including shipping. Arrived in 4 days.
There is a Netherlands buying group for drugs that my consultant told me about, (can’t remember the name), they couldn’t supply Lenalodomide when last I looked but could supply Daratumumab and it seemed vastly more reasonable than Celgene’s prices.
In a previous post I said Celgene’s made $12 billion from Lenalodomide, I was wrong, it is only $4 billion! How do they make ends meet? 😁

[kwallermyersParticipant]

Sorry that should be Celgene. Autocorrect!

[rosaryParticipant]

thanks you @mulberry and @sueharley for your recent posts which are very helpful given the recent NICE decision not to approve Revlimid\ Lenalidomide in the NHS.

My focus has been on how to source Revlimid/ lenalidomide from India so for those who are looking at this I can offer up the following comments.

I saw a new NHS consultant (myeloma specialist) who aware that I had been on Revlimid maint ( self pay ) advised Revlimid not available on the NHS and even if the recent decision by NICE was changed I was unlikely to qualify to get it.

He told me my options were a private pay arrangement with the hospital (£4.9k per monthly cycle of Revlimid ) and then volunteered that “some” of his patients sourced it from India but this was not something he could advise on – he volunteered the information about India before I could ask him which I thought was interesting ( perhaps a reaction to the announcement from NICE a few days before I saw him together with growing evidence about benefits of Revlimid)

I followed the suggestion of @mulberry and contacted Nirav Sangoi nirav.dialhealth@gmail.com who has sourced a supply for me of Dr Reddy’s lenalidomide. Before I take it I am planning to have a gas spectometry test done to check authenticity but as @mulbery has pointed out this is not easily done.

I’m also interested in finding out more about Lenalidomide supplied by Natco and if there any differences with Dr Reddy’s ( Both are large well established Indian pharma companies who have recently had patent settlements with Celgene)

I will update as things develop and again thanks to @mulberry @sueharley for showing the way….

[rosaryParticipant]

@mulberry would it be possible to see the Gas spectometry reults you mentioned – I did try to PM you , now got my supply from Nirav so keen to get onto these checks.

my email address is stewartalastair@btinternet.com / 07768 744865 if its possible to contcat me ASAP . many thanks

Alastair Stewart

[mulberryParticipant]

It’s heartening that NHS Scotland have agreed to prescribe lenalidomide maintenance after SCT. Not helpful for those who have already been through the process, but at least no other Scot will be left without it. It’s a great pity patients in England, Wales and NI can’t also receive it.
(Scotland has also approved KRd as second line treatment, good for Scotland and well done for Myeloma UK championing our cause)

[arthurcParticipant]

If it helps, I live and work in the Philippines and am 30 days post SCT. I did the SCT and my initial 6 cycles of VCD here as I wouldn’t have been able to get the treatment on the NHS (too long out of the UK).
The Cyclophosphamide was imported from India and I ordered via Viber, it was delivered locally.
I have been told the Revlimid will also be from India and that there are a couple of options.
Basically based on my Cyclophosphamide experience I am quite comfortable with getting the Revlimid also from India. I will ask my doctor here for more details about the supplier.
Clearly I don’t know about import rules or whether there are already local importers in the UK.

[mulberryParticipant]

Just for information, it is legal to import lenalidomide, or any other medicine, into the UK, as long as it is a 3 month supply, or less, and is for your own use, or that of a close family member. An import tax is payable, but is inconsistently requested. A UK prescription can be used, but is not necessary in India if you have a copy of a letter from your hospital which confirms your diagnosis (such as the ones sent to your GP).

[rosaryParticipant]

Just as an update to those following this thread that I have now sourced Dr Reddy’s lenalidomide through a source as as kindly recommended by @mulberry. I did not need any documentation and he supplied 3 months of 10mg Dr Reddy’s Lenalidomide by courier in about two weeks. I decided to get these tested to ensure they were not counterfeit and that the Lenalidomide solution was similar to Revlimid, which as others have said is not easy to get done but I did eventually find a lab who did an analysis on an Aiglent HPLC with a DAD detector calibrated using a standard solution of Revlimid. Two samples of the Dr Reddy’s were tested and both “passed”. If anyone would like further details please DM me. I will be using the 10mg daily oral pill as Maint following SCT in Dec 19 following diagnosis for MM in May 19 and 6 cycles of RVD.

For those reading this without the back thread, Revlimid is standard in the US for the treatment of MM and commonly prescribed to newly diagnosed patients as a first line therapy as part of three drug RVD. If you are lucky enough to have private medical insurance this is what you will likley be prescribed. As it is not funded by the Cancer Drug Fund in England for most patients it is not available on the NHS (unless on a trial) . It costs approx £60k per annum to self fund hence why sourcing from India (approx £2k per annum ) is worth investigating. Its obviously a very difficult subject for NHS doctors and indeed MyelomaUK but this should not stop more discussion especially now that Scotland have started funding Revlimid for some patients and patent disputes between Celgene and others have been settled albeit with some time still to elapse.

[yorkshireladParticipant]

Good morning All, I know that many are frustrated by the current position that (outside Scotland) Lenalidamide is not available on the NHS as maintenance after SCT. Everyone should know that you can buy Natco Lenalidamide by post from India from a variety of sellers.

Order online, sent to you by Post.
No prescription is required.
No need to travel to India.
It is perfectly legal.

I have now been on Lenalidamide for 15 months, and it has cost me £670 for the last 12 months including shipping costs. (Plus £30 odd in bank transfer fees). The biggest risk IMV is that the vendor takes the money and never sends the goods. Well worth the risk.

My consultant knows about this, and considers that it is a good move (although they are not allowed to promote my sourcing it from India). One consultant confirmed that the Natco lenalid is identical to Revlimid as far as they understand, (which is the case with all generic drugs) and the only reason not to take it would be the risk of side-effects which go with taking Revlamid/Lenalid. That is being monitored anyway as part of regular checks/bloods.

This is a drug which is simple to make, has been on the market for over 20 years now, and there is no reason why we should not all be taking it in the generic form available from India. (I cannot comment on other version from Dr Reddys – but both Natco and Dr Reddys are massive pharmas valued in the billions and I know that others on this forum has used their version too).

[mulberryParticipant]

Thank you for posting yorkshirelad. I too have been on lenalidomide maintenance for 18 months, again imported from India.

The Indian pharmaceutical industry is manufacturing generic lenalidomide, poised to take advantage of the world market once Revlimid comes out of patent over the next few years.

For a comparatively small price we are statistically doubling the remission time NHS treatment alone would give us!

The sad thing about this is that by the time lenalidomide maintenance is approved in England, Wales and NI at this rate, the NHS will be able to supply patients with the very same generic drugs that we are taking.

Have a look at your prescribed generic drugs – my aciclovir was made by ranbaxy, my quinine sulphate by Wokhaart, my mother was prescribed a drug made by Dr Reddy. These are all Indian pharmaceutical companies.

We myeloma patients pay a heavy price for drug patenting.

[Author]

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