Wednesday, 12 December 2018

Explaining why you get worse despite being NEDA

In my MS clinic, I have to continually work on a narrative to explain to MSers why they are getting worse despite having no evidence of disease activity. The following is a draft of a paper I am working on. Does it make sense? Is it too complicated? Does it need pictures? Thanks. 

Glial cells involved in progressive MS

We all know that the glial response may be involved in progressive MS

Do you want more evidence

Tuesday, 11 December 2018

Pregnancy in MS

Mult Scler. 2018 Dec 3:1352458518816614. doi: 10.1177/1352458518816614. [Epub ahead of print]

Pregnancy and multiple sclerosis in the DMT era: A cohort study in Western Austria.

Bsteh G, Algrang L, Hegen H, Auer M, Wurth S, Di Pauli F, Deisenhammer F, Berger T.



Multiple sclerosis (MS) predominantly affects women of child-bearing potential. Pregnancy in MS is still a controversial issue lacking standardized treatment recommendations.


To examine the reciprocal effects of pregnancy, MS, and disease-modifying treatment (DMT).


We analyzed 387 pregnancies in 239 women with relapsing remitting multiple sclerosis (RRMS) and ⩾1 pregnancy, establishment of diagnosis >1 year before conception, and ⩾2 years of follow-up after delivery. Relapse rates and Expanded Disability Status Scale (EDSS) scores were compared in the year before conception, during pregnancy, and 2 years postpartum. Binary logistic regression was used to investigate predictors of risk for relapses and disability progression during pregnancy and postpartum.

Monday, 10 December 2018

#ThinkSocial: survey results

Thank you and Thank you! 

Guest post: New study - Are people living with MS in the UK vitamin D deficient?

Help us spread the word, we have a new study open to people living with MS in the UK! This study is looking at vitamin D levels in the MS population and we know that vitamin D research is one of the top research priorities for people living with MS. This strong interest in vitamin D research has been demonstrated by the overwhelming response we have had to this study - but we still need more participants! 

Sunday, 9 December 2018

An interview with myself: secondary progressive MS

I did a post-ECTRIMS interview with a Portuguese health magazine last week. The interview has helped me reflect and formalise some of my many ideas about secondary progressive MS that have been fermenting in my cortex for some months. I have therefore put pen to paper using a new format the self-interview.

Are Neuros Conspiring to Avoid Treatments for Progressive MS

Of course not they want a treatment option, just as you do, but I feel we have been shooting ourselves in the foot and unfortunately this mistake means a bullet to your brain.
The question is can we learn from these mistakes?

Saturday, 8 December 2018

If you have to switch make sure it is effective

Treatment escalation leads to fewer relapses compared with switching to another moderately effective therapy. Chalmer TA, Kalincik T, Laursen B, Sorensen PS, Magyari M; Members of Danish Multiple Sclerosis Group.J Neurol. 2018. doi: 10.1007/s00415-018-9126-y.

BACKGROUND Patients with multiple sclerosis who experience disease breakthrough often switch disease-modifying therapy (DMT).
OBJECTIVE: To compare treatment effectiveness of switch to highly effective DMT (heDMT) with switch to moderately effective DMT (meDMT) for patients who switch due to disease breakthrough defined as at least one relapse within 12 months of their treatment switch.
METHODS:We retrieved data from The Danish Multiple Sclerosis Registry on all relapsing-remitting MS patients with expanded disability status scale (EDSS) less than 6 who experienced disease breakthrough. We used propensity score matching to compare annualized relapse rates (ARRs), time to first confirmed relapse, time to first confirmed EDSS worsening and time to first confirmed EDSS improvement.
RESULTS: Each matched group comprised 404 patients. Median follow-up time was 3.2 years [interquartile range (IQR) 1.7-5.8]. ARRs were 0.22 (0.19-0.27) with heDMT and 0.32 (IQR 0.28-0.37) with meDMT; relapse rate ratio was 0.70 (95% CI 0.56-0.86; p = 0.001). Escalation to heDMT reduced the hazard of reaching a first relapse (HR 0.65; 95% CI 0.53-0.80; p < 0.001). We found no evidence of delayed disability worsening (HR 0.83; 95% CI 0.62-1.10; p = 0.20) and weak evidence of disability improvement (HR 1.33; 95% CI 1.00-1.76; p = 0.05) with heDMT.
CONCLUSION: Switching to heDMT is associated with reduced ARR and delay of first relapse compared with switching to meDMT. Patients on DMT who experience relapses should escalate therapy to heDMT.Patients with multiple sclerosis who experience disease breakthrough often switch disease-modifying therapy (DMT).

This study says if you are switching make sure you switch to a higher efficacy alternative, Simple. Going to low efficacy drug

Friday, 7 December 2018

Side effects and MS drugs

Another report on the drug that just keeps giving....A shame it is giving us extra autoimmunities to be aware of.

Pisa M, Della Valle P, Coluccia A, Martinelli V, Comi G, D'Angelo A, Moiola L. Acquired haemophilia A as a secondary autoimmune disease after alemtuzumab treatment in multiple sclerosis: A case report. Mult Scler Relat Disord. 2018;27:403-405.

Alemtuzumab is a highly effective monoclonal antibody for the treatment of multiple sclerosis (MS). During the immune reconstitution following the use of this treatment severe secondary autoimmune diseases (SADs) can develop. We present the case of a patient affected by active MS who failed to achieve disease control with several disease-modifying drugs and was thereafter successfully treated with alemtuzumab, obtaining no evidence of disease activity and a high quality of life. Twenty months after the first infusion of alemtuzumab the patient developed acquired haemophilia A (AHA), a treatable but potentially life-threatening condition that should be considered a possible SADs associated to this drug. In order to allow an early diagnosis and to prevent possible complications of AHA, routine coagulation tests (prothrombin time and activated partial thromboplastin time) should be included in the laboratory serological monitoring of patients treated with alemtuzumab.

Hemophilia A, also called factor VIII (FVIII) deficiency or classic hemophilia, is a genetic disorder caused by missing or defective factor VIII, a clotting protein. Although it is passed down from parents to children, about 1/3 of cases are caused by a spontaneous mutation, a change in a gene.

Thursday, 6 December 2018

Alemtuzumab as a cause of stroke

How does alemtuzumab cause stroke? It is unlikely to be due to secondary autoimmune disease as it occurs too soon after administration. Could it be due to a mechanism that triggers thrombotic mechanisms, for example via platelet activation? Alemtuzumab causes an early and transient low platelet count (thrombocytopenia), which may be related to thrombosis.