HealthCare Journey for Multiple Sclerosis
  • Home
  • About Us
  • Virtual MS Center
    • Q & A for Virtual MS Center
    • Read About Our Virtual MS Center Staff
  • News & Resources
  • Seminar Registration
  • Health & Wellness
  • Blogs
    • Physician Blog >
      • Healthcare Provider Blog
    • Physical Therapy Blog
    • Patient Blog
    • Caregiver Blog
    • Research Blogs >
      • "Ask Dr. Debbie" Research Blog
      • Multiple Perspectives In Multiple Sclerosis Research Blog
  • About MS
    • What is MS?
    • Diagnosis
    • Treatment
    • MS Tips
  • Symptoms
    • Balance and Walking Issues
    • Breathing/Respiratory
    • Bowel Dysfunction
    • Cognitive Dysfunction
    • Crying/Laughing Uncontrollably (PBA)
    • Depression and Anxiety
    • Dizziness/Vertigo
    • Dysphagia
    • Fatigue
    • Foot Drop
    • Hearing or Smell or Taste Changes
    • Heat Sensitivity
    • Leg Weakness
    • Loss of Hand Dexterity and Coordination
    • Memory and Mutliple Sclerosis
    • Migraines
    • Numbness/Tingling/Altered Sensation
    • Nystagmus and Oscillopsia
    • Pain
    • Sexual Dysfunction
    • Sleep Issues
    • Spasticity/Spasms/Cramps
    • Speech/Swallowing
    • Urination/Bowel Problems
    • Vision
  • MS Clinics
  • MS Topics
    • Pregnancy and Infertility
    • Caregivers and Family Members
    • Employment and MS
    • Medical Costs and Insurance
    • Pediatric Multiple Sclerosis
  • Register With Us
  • Terms of Use/Privacy/HIPAA
  • MS HealthCare Journey

Welcome to the Virtual MS Center!

Ask any question you want about Multiple Sclerosis and one of our experts will answer it as soon as possible.
CLICK HERE TO ASK YOUR QUESTION!

I started a new therapy for my MS and haven't seen much of a change.  What should I do?

1/7/2015

 
Here is My Question:
I started Tysabri in Sept 14' and really haven't seen much change.  My MS was better when I was on Rebif. Since starting Tysabri I had a severe UTI which thru my MS for a loop. Is the Tysabri not working? I feel leary about the infusions because for the past 4 months I have had problems with Tysabri. My doctor says it's not the Tysabri. Should I seek another neurologist? I'm very confused!

Answer:
Dear Confused:

Your story is one that is familiar to any MS Specialist and a cause of frustration among many people with MS. To help you understand what is happening, let’s break down the phases people go through when they initiate any a disease modifying treatment:

Treatment initiation and titration phase (first 3-6 months)
This will vary from one treatment to another. For instance, with interferons like Rebif, the dose is usually started low and increased over the first month to allow your body time to accommodate to the flu-like side effects which tend to be maximal at onset and lessen with time. The process of accommodation to these natural interferon related symptoms can take 1-3 months. Most patients will discontinue treatment between 3 and 6 months after starting an interferon if they are not able to find a way to lessen these side effects.

For other treatments like Tysabri or Alemtuzamab there is no dose titration phase but your body must still accommodate to the side effects of treatment initiation which lessen over time. Patients on Tysabri, and especially those on Alemtuzamab, may experience significant infusion reactions which represent a hypersensitivity response to the drug. Other common early side effects with Tysabri include headaches and fatigue during or following infusions, both of which tend to improve over time. In fact studies suggest that MS associated fatigue actually decreases over time in Tysabri treated patients. In my experience Tysabri treated patients also experience a slightly increased rate of urinary tract infections after treatment initiation that may or may not lessen over time. If the infections do not lessen after 6 months of treatment or respond to urinary acidification, methenamine hippurate or other preventative measures, then you may need to stop Tysabri, if only to determine if this was the cause of the frequent UTIs. I would try not to stop Tysabri prior to 6 months of treatment, since this will increase your risk of hypersensitivity reactions if Tysabri is ever restarted in the future. For Alemtuzamab, there is a much greater early increased risk of infections (Reactivation of herpetic infections like shingles or bacterial infections) associated with the dramatic decrease in white blood counts. This also lessens after the immune system is reconstituted in the first 6 to 9 months.

The disconcerting part of treatment initiation is that many people with MS experience these problems before a treatment has a chance to fully exert its beneficial effects. For instance, the benefits of Tysabri typically begin to kick in after the first 3 months of treatment. Copaxone also has a delayed initiation of action whereas interferons tend to have a more rapid onset of action. It is also during this interval that your body is recovering from the ongoing inflammatory activity present in your nervous system prior to initiation of treatment. The recovery process itself can create unpleasant symptoms such as pins and needles sensations, burning and electrical shocks, which doctors and patients may misinterpret as an inadequate response to treatment. You may also experience an MS relapse during the first few months on treatment, particularly if the treatment was started during an interval of heightened inflammatory activity. These symptoms and relapses must be interpreted within the context of recently initiating a treatment and expected maximal onset of action of that therapy. In most cases relapses in the first 3 months are treated with steroids and the disease modifying therapy is continued to allow more time for the benefits of treatment to accrue.

Treatment stabilization phase (begins 3-6 months after starting treatment)
This phase usually begins 3-6 months after treatment is started. By this time you should have accommodated to any side effects (or stopped the treatment) and usually obtained a new baseline clinical and MRI evaluation on your given treatment. It is during this phase of treatment that your begin to ask whether the drug is working adequately. This is usually too short an interval after treatment start to determine if the treatment is slowing disease progression. For most patients, the benefits of the drug are judged during this interval by the frequency and severity of relapses and interval assessment of MRI activity. For interferon treated patients, a repeat MRI of the head with and without gadolinium 6 months after starting treatment can assist you and your doctor in determining if you should continue treatment, regardless of how well the interferon is tolerated. Many studies have now determined that continued inflammatory activity 6 months on MR imaging after starting interferons suggest a less than adequate treatment response and a reason for switching therapy.

Side effects may still occur during this phase of treatment but should not be significantly affecting quality of life. If side effects are still a problem, you should consider alternative treatments depending on your risk factors and prior treatment trials

Long Term Treatment phase (greater than 12 months after starting treatment)

It is during this phase of treatment that you and your physician will begin to determine if the treatment is capable of altering the long term course of your disease by halting disease progression.

For most patients the process of disease progression is very slow with significant fluctuations in performance from visit to visit. A standard neurological examination is not capable of detecting this progression over time and, in fact, it is unusual to see worsening from visit to visit if the interval between visits is short (every 3-4 months). To assist you and your physician it is best to obtain quantitative measures of your performance at regular visits that can be compared and even grafted. These measures may include a 25 foot walking time, a timed up and go test, a 6 minute walk, a 9 hole peg test, sloan low contrast scores a symbol digit modality test or other timed tests of working memory and information processing speed and certain self report measures. It is important that a person get training in both administering and taking the test to eliminate the learning phase. For most of these tests, a 15 to 20% worsening in the test score indicates a significant change especially if persistent with a continued downward trend.

In the near future, you will be able to assess the long term effects of treatment by using a quantitative evaluation of brain volumes on repeat MR imaging. At present this is only done in clinical trials

Depending on where you are in the course of the disease your physician will continue to use relapses and MRI activity to determine the benefits of treatment during this phase but it is important to remember that relapses and MRI activity naturally decreases over time especially in individuals over the age of 50 making these assessments less sensitive to the detection of ongoing disease activity despite treatment.

It is during the long term treatment phase that we begin to assess patients for the long term side effects of treatment. For Tysabri this means assessing for the development of progressive multifocal leukoencephalopathy (PML) which is most common after 24 months of treatment. For alemtuzamab this is the period when individuals begin to develop autoimmune conditions like Grave’s disease, idiopathic thrombocytopenic purport (ITP) and glomerulonephritis. Most injectibles (interferons and copaxone) have very few long term side effects that are of concern although interferons have been rarely associated with accelerated cardiovascular disease and autoimmune thyroid and liver disease

So to answer your question directly, I would suggest monthly urinalysis and urine culture and continuing on Tysabri for at least 6 months. You should be taking vitamin C with every meal to acidify your urine (500 to 1000 mg to get the pH less than 6) and if you catheterize yourself, may sure you use sterile technique and dispose of the catheters after each use. If urinary tract infections continue at a rate greater than twice a year you should see a urologist specializing in female urination issues.

Revere (Rip) Kinkel, MD
Director of the UCSD Multiple Sclerosis Center

Comments are closed.

    RSS Feed

    PLEASE NOTE: This information/opinions on this site should be used as an information source only.  This information does not create any patient-HCP relationship, and should not be used as a substitute for professional diagnosis and treatment.  Please consult your health care provider before making any healthcare decisions or for guidance about a specific medical condition.
    Read About Our Virtual MS Center Authors

    Archives

    December 2022
    October 2022
    September 2022
    August 2022
    June 2022
    May 2022
    April 2022
    March 2022
    February 2022
    December 2021
    November 2021
    October 2021
    September 2021
    August 2021
    July 2021
    June 2021
    May 2021
    April 2021
    March 2021
    February 2021
    January 2021
    December 2020
    November 2020
    October 2020
    September 2020
    August 2020
    July 2020
    June 2020
    May 2020
    April 2020
    March 2020
    February 2020
    January 2020
    December 2019
    November 2019
    October 2019
    September 2019
    August 2019
    July 2019
    June 2019
    May 2019
    April 2019
    March 2019
    February 2019
    January 2019
    December 2018
    November 2018
    October 2018
    September 2018
    August 2018
    July 2018
    June 2018
    May 2018
    April 2018
    March 2018
    February 2018
    January 2018
    December 2017
    November 2017
    October 2017
    September 2017
    August 2017
    July 2017
    June 2017
    May 2017
    April 2017
    March 2017
    February 2017
    January 2017
    December 2016
    November 2016
    October 2016
    September 2016
    August 2016
    July 2016
    June 2016
    May 2016
    April 2016
    March 2016
    February 2016
    January 2016
    December 2015
    November 2015
    October 2015
    September 2015
    August 2015
    July 2015
    June 2015
    May 2015
    April 2015
    March 2015
    February 2015
    January 2015
    December 2014
    November 2014
    October 2014
    September 2014
    August 2014
    July 2014
    June 2014
    May 2014
    April 2014
    March 2014
    February 2014
    January 2014
    December 2013
    November 2013
    October 2013
    September 2013
    July 2013
    June 2013

    Categories

    All
    Accessible Housing And Environmental Modifications
    Anxiety
    Balance
    Bowel Problems
    Caregivers
    Cognitive Function
    Compliance
    David Rintell Ed. D.
    Deborah Backus Blogs
    Depression
    Diagnosis
    Diet
    Dizziness
    Dosing
    Dr. Greenberg's Q&A
    Dr. Kinkel's Q&A
    Dr. Miravalle's Q&A
    Dr. Nielsen's Q&A
    Dr. Osborne's Q&A
    Exercise
    Experimental Treatments
    Eye Surgery
    Fatigue
    Fatique
    Flu Shot
    Foot Drop
    Herbs
    Immunosuppression
    JCV
    Lasik Surgery
    Lesions
    Lori Kostich's Q&A
    Lyme Disease
    Medications
    Migraines
    Mobility
    MRI
    MS Hug
    Other Diseases
    Pain
    PML
    PPMS
    Pregnancy
    Relapse
    Safety
    Sarah Wargo's Q&A
    Sexual Dysfunction
    Side Effects
    Smoking
    Spasticity
    Stem Cell Transplantation
    Steroids
    Stress
    Supplements
    Surgery
    Symptoms
    Treatment
    Urination
    Viruses
    Vision
    Vitamin D
    Vitamins
    Weakness


© 2022 HealthCare Journey, LLC. All Rights Reserved.
HealthCare Journey™ is a trademark of HealthCare Journey, LLC
Picture
  • Home
  • About Us
  • Virtual MS Center
    • Q & A for Virtual MS Center
    • Read About Our Virtual MS Center Staff
  • News & Resources
  • Seminar Registration
  • Health & Wellness
  • Blogs
    • Physician Blog >
      • Healthcare Provider Blog
    • Physical Therapy Blog
    • Patient Blog
    • Caregiver Blog
    • Research Blogs >
      • "Ask Dr. Debbie" Research Blog
      • Multiple Perspectives In Multiple Sclerosis Research Blog
  • About MS
    • What is MS?
    • Diagnosis
    • Treatment
    • MS Tips
  • Symptoms
    • Balance and Walking Issues
    • Breathing/Respiratory
    • Bowel Dysfunction
    • Cognitive Dysfunction
    • Crying/Laughing Uncontrollably (PBA)
    • Depression and Anxiety
    • Dizziness/Vertigo
    • Dysphagia
    • Fatigue
    • Foot Drop
    • Hearing or Smell or Taste Changes
    • Heat Sensitivity
    • Leg Weakness
    • Loss of Hand Dexterity and Coordination
    • Memory and Mutliple Sclerosis
    • Migraines
    • Numbness/Tingling/Altered Sensation
    • Nystagmus and Oscillopsia
    • Pain
    • Sexual Dysfunction
    • Sleep Issues
    • Spasticity/Spasms/Cramps
    • Speech/Swallowing
    • Urination/Bowel Problems
    • Vision
  • MS Clinics
  • MS Topics
    • Pregnancy and Infertility
    • Caregivers and Family Members
    • Employment and MS
    • Medical Costs and Insurance
    • Pediatric Multiple Sclerosis
  • Register With Us
  • Terms of Use/Privacy/HIPAA
  • MS HealthCare Journey