Comments: March 30, 2009

 

 

I used to experience the MS Hug as well but since I have been on Prokarin for the past 12 years (12 years in February 09) I have not had another episode of it.

You may also have some good input & suggestions for me.  I am a 40 yr old male — married with two young boys.  I had some questions and wanted to share my symptoms and tests results (all of which are basically showing negative and so far—no diagnosis) to get some feedback on how you would proceed.  All suggestions are helpful in determining what to do when a diagnosis is not being given.

BT

 

Response:

 

Yes, you may send me your test results if you like.  Please remember that I am a lay person with MS.  I am not a medical person.  But, I will give it my best effort to assist you. 

 

Was your MRI of your brain or you spine as well?  Many MRI’s as done of only the brain where there may not be lesions.  An MRI done of both the brain and the spine is much more definitive of MS.

 

 

 

Maestro MBP8298 – new drug on the horizon

Is MBP8298 being used for primary progressive patients?  How does one find out if they are in a DR2 or DR4 subgroup?  Please let me know asap. 

Thanks

DD

 

 

Response:

A Double-Blind, Placebo Controlled Multi-Center Study To Evaluate The Efficacy And Safety of MBP8298 In Subjects With Secondary Progressive Multiple Sclerosis

Have been diagnosed with Primary Progressive MS or Relapsing Remitting MS

 

 

Comment:

I wish I had something wonderful to tell you.  I also experience this hug frequently, though it does come and go.  I cannot imagine if it never left!  I use massage to help ease the spasm when it is occurring, along with some type of muscle relaxer (zanaflex) or perhaps a flexeril.  Most anything that will knock me out for a few hours until the pain passes.  I did read yesterday that the MS hug is well known in Chinese medicine and that someone has successfully used acupuncture to lessen the frequency and severity of hugs.  So, I know this may not be your solution and is perhaps info you have heard before but I couldn’t see passing you by without at least mentioning it.

 

Response:

 

Thank you for your comment.  I will look in alternative medicine for the MS Hug.  If acupuncture works for someone then I think they should use if, by all means.  Use whatever works. 

 

 

Hi Bonnie –

I am a 34 year old man that has had MS since 2005 I have taken Avonex, Betaseron, and am now on Novantrone.  I have been DX with aggressive case of MS.  My coordination, strength endurance, and intellect have deteriorated measurably.  I was accepted into the HALT-MS program in October for the Stem Cell Transplant.  However CIGNA has repeatedly held up my appeals saying its experimental.  I am looking for help and was hoping you my be just that.  I have a wife and a 3 ½ year old daughter that I would love to be around see grow up.  The writing is on the wall for me and this is my only hope to live a generally normal life.

Thank you and look forward to a response as time is not on my side. 

 

Response:

 

Can anyone tell me what CIGNA is.  I am a Canadian and we don’t have CIGNA up here.

 

I truly hope that A Stem Cell Transplant is your answer.  I have heard of remarkably successful transplants in Canada.

 

 

 

Comment:

Dear Bonnie,

I want to thank you for your MS site; its the first time, I have read such a complete list of problems and possible solutions.

Please be patient, as you read my case history; I have been healthy my whole life; I taught special education, I had 2 natural childbirths, and a hysterectomy; then my world fell apart in 2004.

I had spinal cord surgery at age 54; I had a wonderful thoracic spinal surgeon who saved me from being a quadriplegic; I had a thoracic disc that had calcifed and perforated my spinal cord; this is rare, and most surgeons do not want to risk even trying to save your life; but my surgeon had done this before; he removed the calcified disc, and replaced the bad disc with a titanium cage; he is the only surgeon who performs this unique surgery;

Then, after a urinary tract infection, which is common after any spinal surgery, I saw a urologist, and I had a cancer tumour on my right kidney, so two years after my spinal cord surgery, I had the tumour, right kidney, and adrenal gland removed; no complications from surgery.

Its been 5 years since my spinal surgery and 3 years since my cancer surgery; my cancer has been in remission I go for a check-up every 6 months.

After the cancer surgery, I did not feel the same; I could not walk in the heat, as I could do after my first surgery; I was walking each afternoon, even when its 99 degrees in the sun; but after the cancer surgery, I felt severe heat sensitivity and had a spinal tap; it was negative; I did have several MRIs, and there were 2 lesions on the upper cervical spinal cord; my spinal surgeon thought I had MS; but my MS doctor said, it may be benign MS, since my spinal surgery had traumatized my spinal cord; my spinal cord surgery took 12 hours;

Now, 5 years after the spinal surgery, since October 1, 2008, I have felt the MS hug, everyday, 24 hours a day; its like an engine that started on its own, and it never gets turned off; so, I called my spinal surgeon, since there is no one in the US who really deals with primary progressive MS; and since my 2 lesions are at the top of my spinal cord, it has been documented, the location of the spinal cord lesions, will cause damage below that location—hence, cause breathing respiratory problems.

For me, the MS Hug effect, came out from nowhere; I had no real warning; I tried taking 10mg of Baclofen and one xanax , three times a day; it did not help; I cried alot, since crying helps my autonomic nervous system work better; I also drink hot tea, and I stand in the shower since the steam seems to help me breathe easier; now, I have been taking 10mg of Baclofen and one xanax, four times a day; I feel better, but I do not sleep very much; the Baclofen does not make me drowsy; it seems to keep me awake; so I sleep 3 hours a night;

I have researched England, Canada, Sweden, and Israel to find anything else to try, to help me breathe easier; the possible new drugs, have been tried in research studies but were not successful;

After I read your personal story, and the reference to how your rib cage felt, when you did feel the MS Hug effect; I knew, I am the rare person, who has this terrible symptom, non-stop; I live in the US, so I have a living will; I will not be put on a respirator, or trach tube or feeding tube; I will probably get pneumonia and die from this; I walk slow, but I have use of both arms and legs; I have no lesions in my brain, so I have no cognitive problems at all; so, now, after surviving 2 major surgeries, I have a severe non-stop MS Hug symptom, and its been almost 3 months, feeling like I have a boa constrictor around my chest.

I did contact the Rocky Mountain MS center in Colorado, which does treat patients with PPMS, but they told me, not to waste my time and money to fly out to their center; they would just suggest Baclofen.

If you hear of anyone, who has other suggestions, or treatments, for severe MS Hug symptom like me; please let me know.  I would go to see anyone; if they could help me.  Your website is great.

Sincerely,

 

 

S. B.

 

 

Response:

 

Another medication that is used for spasms is and has some success is:  Gabapentin 300 mg capsules.  Gabapentin makes some people very sleepy so it is suggested that one takes two at mid-day and two at bedtime.

 

Good job! I’d like to know if you’d be interested in having me as a guest writer for your blog.  I am a features writer.   I’d like to write a free 300 to 400 word blog entry for you.  I have a few years experience and would really enjoy writing one or two guest blog entries for your blog.  If you’d like to take me up on my offer, please send me a topic and a quick outline of what you’d like the article to say.  Please give me as much detail as possible so I can make the blog entry meet your specifications as much as possible.  In exchange for this free blog entry, I would like to request a linkback to my blog in the body of the blog entry somewhere using.  

MB

 

 

Response:

Thank you for you for your email.  I do not let anybody else write on my blog.  I like to have total control.  Nor do I advertise other websites or blog on my blog.  Neither do I link to other blogs. 

Bonnie

 

Press Release

 

Oral Laquinimod for Multiple Sclerosis Granted Fast Track Status by FDA

 

Jerusalem, Israel and Lund, Sweden, February 12, 2009 –

 

 

 

Teva Pharmaceutical Industries Ltd.  (NASDAQ: TEVA) and Active Biotech (NASDAQ OMX NORDIC: ACTI) today announced that oral laquinimod, an investigational treatment for relapsing-remitting multiple sclerosis (RRMS), has received a Fast Track designation from the U.S.  Food and Drug Administration (FDA).  Teva completed enrollment for the first of its two Phase III clinical trials for laquinimod (ALLEGRO) in November 2008 and is currently enrolling RRMS patients globally for the second Phase III study (BRAVO).

 

 

 

Drugs designated for Fast Track are intended for the treatment of a serious or life-threatening condition and have demonstrated the potential to address unmet medical needs.  Fast Track designation can potentially facilitate development and expedite the review process.  This may allow the drug to enter the market as soon as late 2011.

 

 

 

“As global leaders in the treatment of multiple sclerosis, Teva is committed to bringing additional safe, effective and convenient therapies to MS patients,” said Moshe Manor, Vice President, Global Innovative Resources Group at Teva.  “We are pleased that the FDA has awarded laquinimod with a Fast Track designation, and are hopeful it will be part of our growing portfolio of innovative therapies.”

 

 

 

“We’re encouraged by the reports we’ve seen from the Phase II clinical trial of laquinimod, and if this agent continues to prove safe and effective, it would be a welcome new treatment option available to people with multiple sclerosis,” said Dr.  John Richert, Executive Vice President, Research and Clinical Programs, National MS Society.

 

 

 

Laquinimod is a novel, once-daily, orally administered immunomodulatory compound being studied as a disease-modifying treatment for RRMS.  For more information on the ongoing laquinimod Phase III clinical program, please visit www.TevaClinicalTrials.com or call 1-800-840-5601 in the US and 1-800-283-0034 in Canada. 

 

 

 

 

 

About Laquinimod

 

 

 

Laquinimod is a novel once-daily, orally administered immunomodulatory compound that is being developed as a disease-modifying treatment for RRMS.  Active Biotech developed laquinimod and licensed it to Teva Pharmaceutical Industries, Ltd. in June 2004.  Results from a Phase IIb study in 306 patients were published in June 2008 in The Lancet and reported that an oral 0.6 mg dose of laquinimod, administered daily, significantly reduced MRI disease activity by a median of 60 percent (51 percent mean reduction) versus placebo in RRMS patients.  In addition, the study showed a favourable trend toward reducing annual relapse rates and in the number of relapse-free patients compared with placebo.  Treatment was well tolerated, with some transient and dose-dependent increases in liver enzymes reported, without clinically-evident liver damage.

 

 

 

In addition to the efficacy that laquinimod has shown in Phase II RRMS clinical trials, laquinimod has demonstrated potent therapeutic efficacy in preclinical models of other autoimmune diseases such as Crohn’s disease, rheumatoid arthritis, insulin-dependent diabetes mellitus, Guillain Barr� Syndrome, and Lupus.  The broad profile of efficacy in animal models of inflammatory diseases suggests that laquinimod affects a pivotal pathway of inflammation and autoimmunity.  Teva has also initiated a clinical study to evaluate laquinimod for Crohn’s disease and expects to initiate the clinical development of laquinimod for Lupus Nephritis in the near future.

 

 

 

 

 

About the Phase III Program

 

 

 

Allegro (assessment of oral laquinimod in preventing progression of MS), a pivotal, global, 24/30-month, randomized, double-blind, Phase III study designed to evaluate the efficacy, safety and tolerability of laquinimod versus placebo in the treatment of RRMS, completed recruitment of more than 1,000 patient at 152 sites throughout North America, Europe, and Asia in November 2008. 

 

 

 

Bravo (benefit-risk assessment of Avonex® and laquinimod), a pivotal, global, 24 month, randomized, double-blind, parallel-group, placebo-controlled Phase III study designed to compare the safety and efficacy of laquinimod with placebo and to provide risk-benefit data for laquinimod versus a currently available injectable treatment, is currently enrolling patients at centers throughout the United States, as well as Canada, Europe and Israel.  The enrollment goal is approximately 1,200 patients with RRMS.  To learn more about Teva’s ongoing clinical trials, please visit www.TevaClinicalTrials.com or call 1-800-840-5601 in the US and 1-800-283-0034 in Canada.    

 

 

 

 

 

About Multiple Sclerosis

 

 

 

Multiple Sclerosis (MS) is the leading cause of neurological disability in young adults.  It is estimated that more than two million people may be affected worldwide.  MS is a progressive, demyelinating disease of the central nervous system affecting the brain, spinal cord and optic nerves.  Demyelination is the destructive breakdown of the fatty tissue that protects nerve endings.

 

 

 

 

 

About Teva

 

 

 

Teva Pharmaceutical Industries Ltd.  (NASDAQ: TEVA), headquartered in Israel, is among the top 20 pharmaceutical companies in the world and is the world’s leading generic pharmaceutical company.  The Company develops, manufactures and markets generic and innovative human pharmaceuticals and active pharmaceutical ingredients.  Over 80 percent of Teva’s sales are in North America and Europe.

 

 

 

 

 

About Active Biotech

 

 

 

Active Biotech AB (NASDAQ OMX NORDIC: ACTI), headquartered in Sweden, is a biotechnology company with R&D focus on autoimmune/inflammatory diseases and cancer.  Projects in pivotal phase are laquinimod, an orally administered small molecule with unique immunomodulatory properties for the treatment of multiple sclerosis, as well as ANYARA for use in cancer targeted therapy, primarily renal cancer.  Further key projects in clinical development comprise the three orally administered compounds TASQ for prostate cancer, 57-57 for SLE and RhuDex™ for RA.  Please visit www.activebiotech.com for more information.

 

 

 

 

 

Active Biotech’s Safe Harbor Statement in Accordance with the Swedish Securities Market Act:

 

This press release contains certain forward-looking statements.  Such forward-looking statements involve known and unknown risks, uncertainties and other important factors that could cause the actual results, performance or achievements of the company, or industry results, to differ materially from any future results, performance or achievement implied by the forward-looking statements.  The company does not undertake any obligation to update or publicly release any revisions to forward-looking statements to reflect events, circumstances or changes in expectations after the date of this press release. 

 

 

————-
Its great to hear about Aricept for cognitive ability.  I want to ask,  is there any side effect of it as I have used many of the same variety

 

Anonymous

 

Answer

 

Brand Name
Aricept

Common Name
donepezil

How does this medication work? What will it do for me?

This medication is used for the treatment of people with mild to moderate Alzheimer’s disease.  Donepezil does not cure Alzheimer’s disease. It works in the brain to improve thinking, memory, attention, and the ability to do simple tasks.

Your doctor may choose to use a medication for conditions other than the ones listed in these drug information articles. If you’re unsure why you are taking this medication, contact your doctor.

How should I use this medication?

The recommended initial dose of donepezil is 5 mg once daily. If the response is not adequate after four to six weeks, your doctor may increase the dose to 10 mg daily, which is the daily recommended maximum dose. For senior women with a low body weight, it is recommended that the dose of donepezil not exceed 5 mg daily. The tablet can be taken with or without food.

Many things can affect the dose of medication that a person needs, such as body weight, other medical conditions, and other medications. If your doctor has recommended a dose different from the ones listed here, do not change the way that you are taking the medication without consulting your doctor.

It is very important that this medication be taken on a regular schedule as prescribed by the doctor. If you miss a dose of this medication, take it as soon as you remember it. If it is almost time for your next dose, skip the missed dose and carry on with your regular schedule. Do not double doses.

What form(s) does this medication come in?

ARICEPT

5 mg
Each white, film-coated tablet, embossed with the name “ARICEPT” and the strength, contains: donepezil HCl 5 mg equivalent to donepezil free base 4.56 mg. Nonmedicinal ingredients: cornstarch, hydroxypropylcellulose, lactose monohydrate, magnesium stearate and microcrystalline cellulose; film-coating: hypromellose, polyethylene glycol, talc and titanium dioxide.

10 mg
Each yellow, film-coated tablet, embossed with the name “ARICEPT” and the strength, contains: donepezil HCl 10 mg equivalent to donepezil free base 9.12 mg. Nonmedicinal ingredients: cornstarch, hydroxypropylcellulose, lactose monohydrate, magnesium stearate and microcrystalline cellulose; film-coating: hypromellose, iron oxide, polyethylene glycol, talc and titanium dioxide.

ARICEPT RDT

5 mg
Each white, uncoated, rapidly disintegrating tablet, embossed with the name “ARICEPT” and the strength, contains: donepezil HCl 5 mg equivalent to donepezil free base 4.56 mg. Nonmedicinal ingredients: κ-carrageenan, mannitol, polyvinyl alcohol and silica colloidal anhydrous. B

10 mg
Each yellow, uncoated, rapidly disintegrating tablet, embossed with the name “ARICEPT” and the strength, contains: donepezil HCl 10 mg equivalent to donepezil free base 9.12 mg. Nonmedicinal ingredients: κ-carrageenan, iron oxide, mannitol, polyvinyl alcohol and silica colloidal anhydrous.

Some medications may have other generic brands available. Always ask your doctor or pharmacist about the safety of switching between brands of the same medication.

Who should NOT take this medication?

Anyone allergic to donepezil or to any of the ingredients of the medication or to piperidine-type medications should not use this medication.

What side effects are possible with this medication?

The side effects listed below are not experienced by everyone who takes this medication. If you are concerned about side effects, discuss the risks and benefits of this medication with your health professional. They may be able to help you to deal with some of the effects.

Check with your doctor as soon as possible if any of the following side effects occur:

More common:

       diarrhea

       loss of appetite

       muscle cramps

       nausea

       trouble sleeping

       unusual tiredness or weakness

       vomiting

Less common:

       abnormal dreams

       constipation

       depression

       dizziness

       drowsiness

       fainting

       frequent urination

       headache

       joint pain, stiffness, or swelling

       pain

       unusual bleeding or bruising

       weight loss

Rare:

       black, tarry stools

       bloating

       bloody or cloudy urine

       blurred vision

       burning, prickling, or tingling sensations

       cataracts

       chills

       clumsiness or unsteadiness

       confusion

       cough

       decreased urination

       difficult or painful urination

       difficulty breathing

       dryness of mouth

       eye irritation

       fever

       flushing of skin

       frequent urge to urinate

       high or low blood pressure

       hives

       hot flashes

       increased heart rate and breathing

       increase in sexual desire or performance

 

       increased sweating

       increased urge to urinate during the night

       irregular heartbeat

       itching

       loss of bladder control

       loss of bowel control

       mood or mental changes, including abnormal crying, aggression, agitation, delusions, irritability, nervousness, or restlessness

       nasal congestion

       pain in chest, upper stomach, or throat

       problems with speech

       runny nose

       severe thirst

       shortness of breath

       sneezing

       sore throat

       sunken eyes

       tightness in chest

       tremor

       wheezing

       wrinkled skin

Some people may experience side effects other than those listed. Check with your doctor if you notice any symptom that worries you while you are taking this medication.

Are there any other precautions or warnings for this medication?

Asthma and lung conditions: Donepezil should be used with caution by people with asthma or lung conditions as it could cause symptoms of these conditions to worsen.

Chronic illness: In general, people with chronic medical conditions should be cautious when taking donepezil because of the increased risk of side effects. The benefits of taking the medication must be carefully weighed against the risks.

Epilepsy: There is a possibility that donepezil may increase the risk of seizures in susceptible people. People with a history of seizure disorder should speak to their doctor about the risks and benefits of taking donepezil.

Heart disease: Donepezil should be used with caution by people with heart disease such as active coronary artery disease and congestive heart failure. Donepezil has the potential to slow the heart rate.

Liver and kidney disease: Since little information exists on the use of donepezil by people with liver and kidney disease, it is recommended that close monitoring for side effects take place under these circumstances.

Stomach problems: Donepezil has the potential to cause an increase in the amount of acid that the stomach produces. It should therefore be used with appropriate caution by people who are at increased risk of developing stomach ulcers.

Pregnancy: The safety of donepezil for use during pregnancy has not been established. Therefore, it should not be used by women who are or may become pregnant unless, in the opinion of their doctor, the potential benefits outweigh the risks.

Breast-feeding: The safety of donepezil for use while breast-feeding has not been established. Therefore, it should not be used by nursing women unless, in the opinion of their doctor, the potential benefits outweigh the risks.

Children: Donepezil is not recommended for use by children.

What other drugs could interact with this medication?

The following medications may affect how donepezil works or increase the risk of side effects:

       barbiturates (e.g., phenobarbital)

       carbamazepine

       dexamethasone

       ketoconazole

       phenytoin

       quinidine

       rifampin

The following medications may be affected by donepezil:

       anticholinergic medications (e.g., atropine, hyoscyamine)

If you are taking any of these medications, speak with your doctor or pharmacist. Depending on your specific circumstances, your doctor may want you to:

       stop taking one of the medications,

       change one of the medications to another,

       change how you are taking one or both of the medications, or

       leave everything as is.

An interaction between two medications does not always mean that you must stop taking one of them. In many cases, interactions are intended or are managed by close monitoring. Speak to your doctor about how any drug interactions are being managed or should be managed.

Medications other than those listed above may interact with this medication. Tell your doctor or prescriber about all prescription, over-the-counter (non-prescription), and herbal medications that you are taking. Also tell them about any supplements you take. Since caffeine, alcohol, the nicotine from cigarettes, or street drugs can affect the action of many medications, you should let your prescriber know if you use them.

 

 

 

The contents of this site are for informational purposes only and are meant to be discussed with your physician or other qualified health care professional before being acted on. Never disregard any advice given to you by your doctor or other qualified health care professional. Always seek the advice of a physician or other licensed health care professional regarding any questions you have about your medical condition(s) and treatment(s). This site is not a substitute for medical advice.
© 1996 – 2009 MediResource Inc. – Targeted Health Solution

What other treatments are available for OAB?

 

Answered by our expert Jennifer Skelly, Nurse Continence Advisor

In addition to lifestyle changes and Kegel exercises, there are medications available for OAB.  These medications reduce the irritability of the bladder and help it to hold more urine for longer periods of time.  OAB medications come in two forms: long-acting medications that are taken once a day and short-acting medications that are taken twice a day.  Discuss with your family doctor which medication is best suited for you. 

 

Answered by our expert Dr.  Pommerville, Urologist

 

We’ve already discussed the use of lifestyle changes and Kegel exercises for managing OAB.  Another treatment option is medication.  The family of medications used to treat OAB is called antimuscarinics (also known as anticholinergics).

 

These medications block the effects of a chemical called acetylcholine, which normally causes the bladder muscle to contract.  This dampens the signal for the bladder to contract, leading to decreased urination frequency and urgency.

 

How long does it usually take for OAB treatments to work?

Answered by our expert Jennifer Skelly, Nurse Continence Advisor

This depends on the treatment.  If OAB is related to consuming too much caffeine, the impact of reducing caffeine intake should be seen fairly quickly, usually within a week or two.

 

Kegel exercises take at least 8 weeks to work.  Once you have reached the maximum benefit, doing Kegel exercises weekly will maintain the improvement for years to come.

 

Most medications take a minimum of 4 weeks to be effective, so it’s important to give them a chance before stopping them or switching to another product.

 

Answered by our expert Dr.  Pommerville, Urologist

This varies between treatments and also from person to person.  The most important thing to remember is: don’t give up.  Although it’s easy to get discouraged if your treatment doesn’t start working right away, stick with it.  For example, it can take anywhere from 4 weeks to up to 3 months to see the maximum benefits from medications.  If the treatment is not working well for you at this point, it may be time to switch to a different treatment.  Speak to your doctor if you have any questions about when your treatment should start to work. 

 

 

 

 

 

What can I do about dry mouth caused by my OAB medication?

 

Answered by our expert Jennifer Skelly, Nurse Continence Advisor

 

There are many ways to deal with dry mouth.  Increasing your fluid intake may help.  You may also try sucking on hard candy or chewing gum – preferably the sugar-free variety.  Dry mouth sprays are also available as another option.  As well, dry mouth is not as much of a problem with longer-acting medications.  Talk to your doctor for more information.

 

 

 

What can I do about constipation caused by my OAB medication?

 

Answered by our expert Jennifer Skelly, Nurse Continence Advisor

 

To deal with constipation, increase your fluid and fibre intake.  It’s also important to make sure you’re getting adequate exercise.  In some cases, you may need to consider using a stool softener on a regular basis.  Speak to your healthcare provider to find out whether this applies to you.

 

Answered by our expert Dr.  Pommerville, Urologist

 

Adding fibre to your diet, using mild stool softeners, and getting regular exercise can all help with constipation.  Switching to a different OAB medication may also help. 

 

Increasing your fluid intake may help with constipation but drinking too many fluids can aggravate OAB.  This doesn’t mean you should limit your fluid intake – just don’t overdo it by drinking too much fluid.

 

 

To learn more about how OAB can affect your life, visit www.overactivebladder.ca

 

 

 

 

 

Compliments of:
© 1996 – 2009 MediResource Inc.  - Targeted Health Solutions

 

 

 

Question from a visitor

Do you know anything about PGL (Persistent Generalized Lymphadenopathy)  or swollen glands with no other symptoms?  I have heard that MS can cause this.  I have had a swollen neck gland for over a month, not sure what doctor to work with. 

 

Thanks SH

 

 

Hi SH,

 

I will look it up and get back to you, Bonnie