Amongst my knowledge of OCD and Cerebellar Atrophy I have been thrown into the deep end with Multiple Sclerosis. The reason for this, my daughter was diagonosed with it at the age of 15. It was a shock to the system for the both of us to learn about the disease, the diagnosis and what treatments there were and what are available.
At the time my daugher was put on Lemtrada (alemtuzumab).
I had concerns when I read that the treatment was still going ahead even though European Medicine Agency (EMA) had taken it off the market. The hospital and EMA said that no new patients would be having to drug but the patients already on it would have to finish the course.
I personally think there was political red tape and that is the reason the drug had to be continued with existing patients as it cost too much and was too complicated to get a refund, I may be wrong but no one has stepped up to correct me. If the drug had been bought upfront you could not exactly get your money back I suppose. I do not know how buying drug work, but I assume pharmaceutical companies get paid upfront as they have to make large batches, with expiry dates hence the NHS cannot return drugs once they have been manufactured in large quantities.
https://www.ema.europa.eu/en/medicines/human/referrals/lemtrada
Lemtrada suppresses the immune system for some time after a treatment course so people will be more vulnerable to infections such as colds and viruses.
LEMTRADA can cause serious side effects including:
Serious autoimmune problems:
Some people receiving LEMTRADA develop a condition where the immune cells in your body attack other cells or organs in the body (autoimmunity), which can be serious and may cause death.
Serious autoimmune problems may include:
- Immune thrombocytopenic purpura (ITP), a condition of reduced platelet counts in your blood that can cause severe bleeding that may cause life‑threatening problems.
- Call your healthcare provider (HCP) right away if you have any of the following symptoms: easy bruising; bleeding from a cut that is hard to stop; coughing up blood; heavier menstrual periods than normal; bleeding from your gums or nose that is new or takes longer than usual to stop; small, scattered spots on your skin that are red, pink, or purple
- Kidney problems called anti‑glomerular basement membrane disease, which, if not treated, can lead to severe kidney damage, kidney failure that needs dialysis, a kidney transplant, or death.
- Call your HCP right away if you have any of the following symptoms: swelling of your legs or feet; blood in the urine (red or tea‑colored urine); decrease in urine; fatigue; coughing up blood.
So its no suprise that On July 3, 2020 Sanofi Genzyme was notified that Lemtrada Home Phlebotomy Partner, Examination Management Services Inc., (EMSI) has gone out of business.
Because of this, unfortunately, all future Lemtrada Home Phlebotomy (lab draw) visits from EMSI have been cancelled.
Patient safety is Sanofi Genzyme’s #1 priority (thats a joke if I ever heard one as my daughter was still administerd the drug after the EMA said it was unsafe) and they continued to say they are working to provide an alternative phlebotomy solution as well as coordinate alternative testing options for your next monthly lab tests.
This tells me that the company had to do refunds and the NHS here in the UK were slow and had already paid the doctors.
I wrote an article on my other blog how Doctors get a commission from pharmaceutical companies for promoting drugs.
You can read the article here:
Doctors receiving money from pharmaceutical companies.
I personally think when I first learned about this, that I was angry that the NHS knew the risk, yet used my daughter as a lab rat.
If you have any questions related to this announcement, please contact your healthcare provider or your One to One Nurse at (USA) 1-855-557-2483.
If you are in the UK contact your MS Team, or speak to the Ward Manager or Professor assigned to your case.
Multiple sclerosis (MS)
Multiple Sclerosis is an auto-immune disease that attacks healthy white cells. The lesions that can affect the brain and spinal cord can cause a wide range of potential symptoms, including problems with vision, arm or leg movement, sensation or balance.
It is an incurable disease with lifelong symptoms that can sometimes cause serious disability, although it can occasionally be mild.
The average life expectancy is slightly reduced for people with MS and symptons can be alliviated with different courses of treatments.
In most cases, people get diagnosed in their 20s or 30s but it has been known the patients have shown symptoms as young as 15 years of age. In fact, it can develop at any age. It’s about 2 to 3 times more common in women than men.
MS is one of the most common causes of disability in younger adults.
https://www.nhs.uk/conditions/multiple-sclerosis/symptoms/
The most common symptoms include:
- fatigue
- vision problems
- numbness and tingling
- muscle spasms, stiffness and weakness
- mobility problems
- pain
- problems with thinking, learning and planning
- depression and anxiety
- sexual problems
- bladder problems
- bowel problems
- speech and swallowing difficulties
Cerebellar atrophy
Cerebellar atrophy is associated with MS and is more extensive in patients with secondary progressive MS and those with longer disease duration when compared with people who have relapsing–remitting (RR) MS and/or shorter disease duration. Cerebellar atrophy has been shown to correlate with clinical measures of disability.
Multiple sclerosis (MS) commonly affects the cerebellum causing acute and chronic symptoms. Cerebellar signs contribute significantly to clinical disability, and symptoms such as tremor, ataxia, and dysarthria are particularly difficult to treat.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3281565/
For Further Information Contact the Following Links.
https://www.nhs.uk/conditions/multiple-sclerosis/
https://www.nationalmssociety.org/What-is-MS
https://www.webmd.com/multiple-sclerosis/default.htm
https://www.mayoclinic.org/diseases-conditions/multiple-sclerosis/symptoms-causes/syc-20350269
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5487391/
https://jnnp.bmj.com/content/88/12/1065
https://journals.physiology.org/doi/full/10.1152/jn.00245.2018
The Editor Suffers From OCD & Cerebellar Atrophy. She is an Entrepreneur & Published Author, she writes content on a range of topics, including politics, current affairs, health and business. She is an advocate for Mental Health, Human Rights & Disability Discrimination.
Whilst her disabilities can be challenging she has adapted her life around her health and documents her journey online.
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