[rosaryParticipant]

Thanks very much , does Nirav make a charge for this service and how do your verify these drugs are not counterfeit?

[mulberryParticipant]

Nirav’s charges are clear, €60 per consignment including prescription,postage and packaging. Packages are sent by DHL fully trackable, and arrive within 3 to 4 days of being sent. He keeps me fully informed during the transaction.
The lenalidomide is sent in the manufacturers packaging. I have had one sample tested using gas spectrometry, I have the test details available if anyone wants them. The analysts confirmed that the sample contains lenalidomide and was a biosimilar version of Revlimid. I have been able to detect lenalidomide in the subsequent medication as I’ve had the same minor side effects as I had when using Revlimid. (Constipation, leg cramps, lethargy at the end of cycles, anaemia) I’m sure Nirav would be happy to answer any questions you have, I’ve found him helpful and straightforward.

[morgsParticipant]

This is a really helpful thread as i don’t have private health insurance so will be looking to import from India after having SCT scheduled in Dec /Jan. I’ll ask my consultant if he’s happy to write a prescription and if so would be great to get a list of the pharmacists that will post direct.Otherwise, the middle man sounds like a really good option.

[mulberryParticipant]

I’ve now been taking lenalidomide sourced in India for 13 months. The seller has proved reliable and still no sign of relapse.

I was hoping that the NHS might prescribe lenalidomide maintenance in consequence of their review of the myeloma XI trial data when the technical appraisal happens in Oct 2020. However it seems maintenance is only going to be made available to the ultra high risk patients, with more than one high risk chromosomal abnormality.

The consequence of this is that those myeloma patients will continue to have average first remission times of 30 months rather than 60 months they could have with lenalidomide maintenance. Prof Graham Jackson was categorical that myeloma patients who have SCT should be taking lenalidomide maintenance afterwards. Overall survival rates improve, by how much isn’t yet known because so many patients are still alive!
Discuss this with your myeloma consultant, ask whether they would want lenalidomide maintenance if they had myeloma. You may find like me that they will treat you as if you were prescribed the maintenance on NHS. This is my experience.

[ellenModerator]

This is a very interesting and emotive thread, however at Myeloma UK we cannot recommend patients import treatments from other countries as we have no way of determining how they are made or regulated. Lenalidomide (Revlimid®) maintenance is being appraised for use in the NHS in the UK. We know this is frustrating, but be assured we at Myeloma UK are doing everything we can to advocate for this treatment including our recent treatment survey on lenalidomide. Ellen Watters (Myeloma Information Specialist)

[kwallermyersParticipant]

Natco, in India, apparently produce Lenalodomide for developing countries under licence from Celgene and have an agreement to export it to the US in 2021 I believe.

[mulberryParticipant]

Just to add to my previous post about testing of Indian lenalidomide. Given my concerns about importing medicine, I have had a second sample from a different manufacturer tested with gas spectrometry. This was found to be a very close match to Revlimid.
Obviously it would be safer (& cheaper for the patient) if lenalidomide maintenance becomes available on NHS. And there is a chance Myeloma UK will be able to persuade NHS & NICE to agree to prescribe it post SCT. However if that doesn’t happen, there is another option to consider. Eg Natco, produced in India under licence from the makers of Revlimid, and which is poised to take advantage of the free market once Revlimid comes out of patent in some countries in 2021.

[rosaryParticipant]

Does anyone have contact details for Nirav as getting bounce back from the email address on this forum – thanks

[mulberryParticipant]

Hi Rosary
If you are still having a problem getting in contact with Nirav Sangoi, please PM me. I have contact with him through WhatsApp, I could ask him to contact you, if this helps.
Jane

[rosaryParticipant]

Jane , many thanks for follow up, we’ve made contact and he’s been very helpful . I’m still trying to establish if this is Revlimid manufactured under license from Celgene or just generic Revlimid – very helpful you’ve done some tests – does he supply from same manufacturer each time ? Thanks

[sangoinirav87Participant]

Email id of Nirav is nirav.dialhealth@gmail.com

The previous email id wasn’t typed correct

• This reply was modified 4 years, 2 months ago by  sangoinirav87.

[sueharleyParticipant]

Hi,

I absolutely agree that it is worth trying Revlimed as maintenance if you are able to source it, either privately in the UK, or from a reputable supply from India. I had the Natco produced version of lenalidomide that I originally went to India to obtain.

I was just like to say that we can all get very focused on getting the treatment (Revlimed or something else) that we believe and hope will extend our time in remission and ultimately our life expectancy. However, it is useful to remember that this may not be the answer for your Myeloma and can lead to disappointment. I had a maintenance dose for only a few months before I relapsed so, unfortunately, it did not work for me and the news of the relapse was actually worst than my initial diagnosis. I felt that I had done everything to gives myself the best chance, I was relatively young, fit and healthy (apart from the Myeloma!) and had achieved a complete response following my SCT.

I really hope it is successful for any of you that are going down this path but try and maintain a level of caution.

Good news is that I’m still here, about to start 4th line treatment and still feel fit and well.

Sue

[rosaryParticipant]

@mulberry are you able to share details of where you did the gas spectrometry tests. I’ve ordered via Nirav who has been very helpful but want to test against the Revlimid I’ve been taking ( the authorised Celgene purchased privately in U.K. )

On the test you did was this manufactured by Natco or Dr Rennys which appear the two most common. Nirav says all his U.K. clients are using Dr Renny’s

As an aside Dr Renny’s just settled there patent dispute with Celgene ( details on the internet for those interested ) which should open up supply in 2022.

Many thanks

[mulberryParticipant]

If you pm me I will send you details of the gas spectrometry tests that can compare generic drugs with the originals.
My family and I contacted tens of uk drugs labs trying to find one prepared to do the tests on an on going basis (for a small group of UK myeloma patients acting collaboratively, so we were prepared to pay commercial prices if needs be). However we had absolutely no success. The companies that gave reasons admitted that they rely on pharmaceutical companies for work, so couldn’t be seen comparing one company’s products against another.
In the end through word of mouth and personal favour I managed to find someone able to do it. The lab wouldn’t do it commercially though, didn’t charge, and would not do it as an ongoing piece of work . I can give you the results I was given, but cannot help with identifying a lab for you. You may have better luck than me, or more chemists in your social circle!
Actually once I’d started taking the generic lenalidomide I was reassured by having the same minor side effects I’d had from revlimid, and I no longer feel the need for ongoing testing. (There is a UK study by Oxford university that showed 4% of drugs in a major UK hospital pharmacy were not what they purport to be, so to my mind there is no such thing as a risk free drug).
Now NICE have issued a draft “no” to lenalidomide maintenance, but have accepted the validity of the research data that shows Len maintenance improves standard remission times after SCT from 30 months to 60 months, we patients know what risk we are taking NOT having Len maintenance. These Indian companies have produced generic drugs which will be sold in the UK and other countries once Revlimid comes out of patent.These companies already produce other drugs we are prescribed.
I felt nervous, but between a rock and a hard place when I first imported generic lenalidomide. Now it feels no more risky than any other aspect of having myeloma, and I am very very thankful that I found Nirav and for the Indian pharmaceutical industry.

[rosaryParticipant]

@mulberry, very helpful and thank you very much for all the detailed explanation and background

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