HHV6 versus MS symptoms (stopping Tecfidera???)

Everyday living
1

I am writing for advice for a friend. Thank you in advance for any input.

After taking Tecfidera for 2 months (her first MS drug), she has symptoms (including double vision, dizziness, and lack of coordination) for about 4 days that are slowly getting worse. The doctor ordered a test for several viruses, and human herpes virus 6 (HHV6) showed significant elevation by IgG. She is now not sure if her symptoms are MS related or HHV6 related. If this virus has reactivated, should she stop taking Tecfidera? Or would stopping Tecfidera put her at risk for worse MS symptoms? Her doctor wants to put her on antiviral medicine and Tecfidera.

Here is some background. She has been taking Tecfidera for about 2 months, and has had significant side effects at the 240mg/dose 2x per day. As a result, she is now taking 120mg/dose, and still not feeling well with this medicine. She is 90 pounds which may be relevant and also tends to have low blood pressure. Prior to beginning Tecfidera, she was primarily diagnosed based MRI brain lesions and two symptoms. These two symptoms occurred prior to taking Tecfidera. 1) She had periods of dizziness for about 10-15 seconds for about 4-5x per day for about 3 weeks. These symptoms resolved when she stopped drinking coffee/tea and consumed more water. 2) She had patches of numbness on her skin after taking very high doses of Vitamin B on two separate occasions. This numbness occurred on 2 separate occasions immediately after the Vitamin B (injection and orally), and resolved over a period of 4-8 weeks after stopping Vitamin B supplementation. In both these instances, the doctor believes it was MS symptoms, although my friend is not sure.

Four days ago after being on Tecfidera for 2 months, she experienced very significant symptoms including dizziness, difficulty walking, lack of coordination, that has been progressively getting worse over 4 days. These symptoms are much worse than anything she experienced previously. Her doctor had tests done for several viruses, and HHV6 came up positive by IgG. I’m not sure precisely what test she had done, but it seemed to indicate an active viral infection.

She is now concerned about whether Tecfidera could be suppressing her immune system and allowing this virus to do damage. Her doctor wants her to add antiviral medication to her regimen. He also wants her to do plasmapheresis with hormones/sterioids.

Does this seem reasonable? Is plasmapheresis a good option in this situation? Should she get additional opinions? What should she be asking her doctor?

My unprofessional opinion on this is that given the immune suppressive properties of Tecfidera, perhaps she should consider stopping Tecfidera. If she has an active viral infection that her body cannot control, this seems worse than the benefit of Tecfidera. And if her current symptoms are not related to MS, it seems that this drug may not be right for her as it did not suppress the worst symptoms she has ever had.

One last question – can she ask her doctor to stop taking Tecfidera for a period of weeks or months? What type of harm is associated with stopping Tecfidera in this situation?

2

i’m so sorry to hear how poorly your friend has been on tecfidera.

i had horrible spells of vomiting when i first started the higher dose.

however i was motivated ad infinitum by paolo smythe and played around with my diet until the vomiting stopped.

i also have low blood pressure like your friend.

has she asked her ms nurse?

apparently it is ok to stop tecfidera if needed.

there is a helpline 08000 727277 run by tecfidera nurses which would be worth trying. open mon to fri 8am to 8pm.

i’m 2 years in with tecfidera and it is worth it. no relapses and it’s very easy and convenient compared to the daily injections i had before.

i wish your friend well and hope that she continues with tec.

honestly, the side effects clear up in 3 months.

carole x

3

Hi weather

I wonder if it comes down to how low her immune system has reached. The idea of Tecfidera is that it reduces lymphocytes temporarily but they should recover after a few months. The problem is that lymphocytes are the blood cells which fight viruses so if she has an underlying HHV6, maybe it’s taking Tecfidera that has made the the HHV6 rear it’s rather ugly head. The question is whether the immune system can fight back.

I would suggest your friend talk to the Tecfidera helpline nurses and her own doctors, including both neurologist and the doctor who’s concerned with her HHV6 to decide whether she should stop the Tecfidera.

What they’ll need to be thinking about, (in my amateur opinion) is what was her pre Tecfidera white blood cell count, in particular the lymphocyte count and her current levels? If they’ve dived too low, and that’s allowed the HHV6 to roam about her system unopposed, then it maybe that Tecfidera isn’t quite right for her.

But before you start championing that view, you (and she obviously) need to keep in mind that in the majority of cases, while the lymphocytes dip in the first few months (and that is expected), they do tend to recover, and also that if it’s decided that your friend should stop the Tecfidera, it may be some time before her system can handle the challenge of another DMD. So it’s a case of weighing up the value of stopping against the cost of giving it a bit more time.

Sue