What happens when you stop your DMT because your MS is stable? #MSBlog #MSResearch
“You have been on a DMT for many years and your MS is stable – attack free, no disease progression and an inactive MRI that is inactive – what would happen if you stopped your DMT? Am I stable because of the DMT or has my MS burnt out? Well there is only one way to find out and that is to stop your DMT and see what happens. This study demonstrates that in a small proportion of MSers who stop their DMTs attacks, both clinical and on MRI, return. Are you surprised? I am not. These treatments are not a cure and this is what you would expect when stopping maintenance therapies.”
“With induction therapies things are different; you have your therapy and hopefully your disease remains inactive indefinitely. If you disease should relapse after an induction therapy, it is an indication that you need to be retreated. As you can see there is a major difference between the treatment philosophies of maintenance and induction therapies and MSologists are going to have to get their heads around this change in treatment paradigm. For me induction therapies have great appeal, particularly if you are a woman who is of childbearing age and want children. You have your treatment, put your disease into remission and you can then start your family confident that the disease is unlikely to rear its ugly head. In addition, the drug is out of your system so the risk to your baby from drug exposure is minimal or not there.”
“I recall an elderly lady that I had looked after who had been on IFNbeta-1b for over 8 years and had been attack free ever since starting the drug. Unfortunately, she had enetered the secondary progressive phase of the disease and had recently started using a walking stick. She was tired of injecting so we decided to stop her interferon therapy. Six months later she had a major spinal cord attack, which she failed to recover from and was left in a wheelchair. I never forget her saying to me if only I had stayed on my interferon I would not have had this attack and I would still be mobile. Possibly. The problem we have is that we have no evidence to support a specific treatment withdrawal protocol so it is all based on anecdote and hearsay. The truth is simply don’t know what to do about drug withdrawal. This is why most MSologists are reluctant to stop DMTs in MSers who are stable.”
Olival et al. Medication withdrawal may be an option for a select group of patients in relapsing-remitting multiple sclerosis. Arq Neuropsiquiatr. 2013;71(8):516-20.
Objective: To describe the clinical and radiological evolution of a stable group of MSers with relapsing-remitting multiple sclerosis that had their disease-modifying therapy (DMT) withdrawn.
Methods & results: 40 MSers, which had made continuous use of one immunomodulator and had remained free of disease for at least 5 years, had their DMT withdrawn and were observed from 13 to 86 months. Out of the followed MSers, 4 (10%) patients presented with new attacks. In addition to these MSers, 2 (5%) MSers had new lesions revealed by magnetic resonance imaging that did not correspond to clinical attacks.
Conclusions: Despite these results, the difficult decision to withdraw medication requires careful analysis. Withdrawal, however, should not be viewed as simply the suspension of treatment because these MSers should be evaluated periodically, and the immunomodulators should be readily reintroduced if new attacks occur. Nonetheless, medication withdrawal is an option for a select group of MSers.
Prof G, what do you mean by "MS burn out"? Is this a clinical term?Also, the case of the elderly bird you discuss has further flummoxed me. You state tat she has succumbed to SPMS, a disease course that is marked by an absence of relapses and marred by progressive neurological decline, yet you claim she had a major spinal cord attack and was rendered lame. Surely this means that she was still RRMS, not SPMS?The more I read about withdrawing from DMTs the more I am suspicious that they are not addressing the core mechanisms that spur progression, and never will. As you state: we simply don't know what is happening and why it's happening.
There is still an overlap between progressive disease and the relapsing phase. I clinical trials of SPMS about 20-30% of study subjects will have relapses. Similarly, in PPMS trials about 10-15% have relapses. There is a clear gray zone between the two phases of the disease.MS burnout; this is a term Ian MacDonald used to use to describe people who would appear to stop relapsing and progressing and stabilise with fixed disability. I follow a few MSers like this; they come back to clinic every 6-12 months without progression of their disease. In RRMS I refer to this period as a remission and in progressive MS (SPMS & PPMS) as burn-
This is actually very interesting. Can you please do a post on MS burn out and its pathology?
Am I the only one who is surprised that only 15% had any kind of new activity. I am on Tysabri and thought that all users suffered a "rebound" effect if treatment was stopped.
These MSers did not have highly active MS and were on 1st-line injectables."Continuous use for at least 5 years of one of the following medications: 30 µg of intramuscular IFN-ß 1a once a week, 300 µg of subcutaneous IFN-ß 1b every other day, 22 or 44 µg of subcutaneous IFN-ß 1a 3 times a week or 20 mg of subcutaneous glatiramer acetate daily>"Rebound post natalizumab is a larger problem than this; ~70% clinically or on MRI.
Thank you for the clarification even if it isn't what I wanted to hear!.
Hello Gavin I am one of those MS people with the "Burn Out" label, I was a PRISIMS trial patient I was on (IFN) 1b from 94 until 2012. After quitting in 2012 I have been dealing with side effects from the (IFN) as well low level symptoms of my MS. I am a active person and I really never thought I would see that again. To look at me you would not know I have MS mind you it wasn't until my decision to quit that I started feeling fairly healthy. Soul