Monday, January 19, 2015

Considering your Lemtrada Protocol

What will the Week of Lemtrada Infusion be Like?

I hope to answer a few questions with this post but I know there will be more. Here are a few 'givens' with the week of infusion:

1) The Days are LONG
     Prepare to be at your infusion center at least 6 hours on the first day. Plan for your own creature comforts and meals.

2) Steroids will be first
    So if you need a hard candy for the metallic taste bring some. If you have any odd reaction to IV steroids just plan what you will do- bring a blanket, etc

3) You will be given oral medications- Don't refuse them
    I will go through them more in detail below but you will need Tylenol, Motrin, Benadryl, Zantac and possibly others. You need this for the potential side effects during infusion so go with it.

4) Lemtrada will be started slowly
    If you have no reaction after an hour they may speed up your drip. If you do have a reaction they will stop it, intervene, and restart at a lower drip rate. They may keep increasing your drip rate every hour if you are doing well.

5) On subsequent days they may speed up your Lemtrada infusion
    Days 4 & 5 might be significantly shorter if you dont get steroids (I recommend you do, more later) and if it is deemed safe to speed up your infusion

Potential Complications and Why

Rash & Allergic Reaction

Why this Happens:
During Lem treatment the medicine will lyse (break apart) all your circulating WBCs (not the ones hiding out in organs or in your lymph system). When this happens they will release Histamine which can cause an allergic reaction. 

Histamine is the culprit in most Asthma cases and skin rashes. It is part of the body's immune system response. Lem will lyse WBC, they will release the histamine inside of them and you may experience rash or an allergic reaction

Take a Class 1 Antihistamine: Benadryl is for allergies and is an anti-histamine
Take a Class 2 Antihistamine: Zantac is for a histamine receptor in the stomach, used here as a back up to Benadryl
IV Steroids: This is also why we give steroids- to suppress the body's natural response to lysed WBCs
On Hand: Albuterol Inhaler your infusion center will have this ready to use in case you need it. A bad histamine reaction can lead to asthma symptoms. 

So it is important to take Benadryl prior to Lem and every day of treatment. You can start up to a week ahead if you are concerned. I started the night before and I was fine. Zantac (for stomach) is also a histamine blocker. This just means they both work against the histamine response in different ways.

You will likely be given both. Talk with your doctor about taking both a class 1 and class 2 histamine blocker. Claritin might be substituted for Benadryl because it is less drowsy than Benadryl. This was what was recommended to me but I opted for Benadryl because I believe it is stronger and I didn’t mind being drowsy.

I never needed the Inhaler- and neither did any of the approx 10 people whose stories have contributed to this blog

Headache and Body Aches

Why this Happens:
When these cells lyse you may feel achy or have a headache. Again think about the immune system fighting something like flu. The immune system sends in WBC, when they ‘die in battle’ they cause the achyness & sometimes fever you get with the flu- you get the same effect with Lem because both are caused by cell death either by Lem or in fighting a virus. 

Take a NSAID- Motrin is an example
Take Tylenol- the clinic will likely give you an oral dose when you have finished the IV Steroids

I experienced a headache on the first day but I believe this to be due to lots of travel the day before. No one else I have talked with has had a fever, headache body ache. They all took Motrin and Tylenol pre-medication.

A Bit About Steroids

I hate them. 

Ok that is not really what is important here but I just needed to get that out. 

Your doctor will give you IV Steroids for the first 3 days- which I am sure you have had before. The standard protocol is 1gm for the first 3 days then nothing on days 4 & 5 but each center might vary this dosing. I asked to ‘step down’ on days 4 and 5 with 500mg and 250mg respectively. I do better when I taper down. You likely know how this medication affects you and what is best for you. Some people stay with 1gm x 5 days then do an oral taper. I hate the orals so I stepped down during the week.

If you do get a rash or allergic reaction they will likely continue the 1gm for all 5 days, providing the reaction was mild enough to continue with the treatment. I was most worried about the rash and allergic reaction. I got neither. I also did not get any body aches, fever or malaise. It is uncommon. But once you know why this is happening (WBC are dying and releasing their contents) I think it makes it easier to decide which pre-meds are right for you.

One Other Medication

Valcyclovir tablet twice daily

You will also be placed on an antiviral to prevent Herpetic infections- herpes virus- responsible for a slew of infections but most commonly fever blisters and vaginal herpes. You will continue this for 4-8 weeks as a preventive. The dose is low and has few side effects. 

To Sum Up

With the proper pre-medications and precautions are you unlikely to experience any of these side effects or have a very mild response. If you are prone to 'react' to medications or have a pre-existing asthma or allergic problem with a rash discuss this with your doctor in advance. You can tailor the protocol to your specific needs.

If you are very concerned about these reactions ask your doctor about starting Benadryl, Zantac, and motrin a few days to 1 week ahead. As long as you can handle the drowsiness that comes with Benadryl and are not allergic to any of these you should be fine to start early.

Take the full course of your Valcyclovir. You dont want to get a raging fever blister just because you are immune supressed. You will have to take this for several weeks- dont skip or be lazy about this step- this is an easily avoidable side effect.

Infusion Protocol

Your clinic or infusion center will have their own protocol. This is just a sample protocol that sums everything up. Please follow your doctor's guidelines. This guide is provided as a reference and a 'talking point' to begin the discussion with your provider. Please keep in mind there will be several opinions about how to proceed with infusion and your doctor should lead this care.

Saturday, January 10, 2015

Lemtrada, the Pregnancy Friendly Choice

None of the currently available therapies are approved during pregnancy. Some are abortifacient (can cause a spontaneous abortion) like Avonex and some are known to be teratogenic (cause birth defects) like Gilenya, among others.

The rate of the latter is very high so women on therapy are encouraged if not required to take a method of birth control, sometimes in addition to condom use. Men with MS are also encouraged to wear condoms to prevent impregnating their partner.

So how is a woman (or man) to both treat her MS and start a family?

This is a real concern in the MS world and one reason I chose to not have children. The other main reason was concerns with being able to keep up with said children. Although the 3rd trimester is thought to be 'MS' protectant- those 3 months could not offset the years of MS damage that had both happened and was yet to come.

Even if you stopped therapy you need to wait several months for the drug to clear your system, then attempt pregnancy but after 6-8 months of no therapy symptoms would return and you are best advised to return to therapy and plan for another 'attempt'.

My husband and I went through this twice- with a neurologist and obstetrician on board and 'ready' for kids to work for us. It never happened and the years passed. My MS inevitably worsened (as it will on all therapies prior to Lemtrada) and I didnt feel I could manage a future with kids when the time came around for a third try.

But now Lemtrada is changing this reality of MS- no only is it safer to contemplate pregnancy (more below) but you will have the energy to chase those kids around to boot!

This is one of the many BIG things Lemtrada is providing to the MS community. Lemtrada is in your system for less than 30 days but its effects on your disease last for years longer. So you can in fact treat your disease and become pregnant at the same time!


Well you need to get through at least one course of Lemtrada (5 days) and wait until your White Blood Cells rebound- about 4-6 months and then you can attempt pregnancy. Men only need to wait the 30 days.

If you are young enough to have many reproductive years left, I would recommend going through both basic cycles of Lemtrada. This will benefit you and your family in the long run- you will have more energy for family life and also be 'done' with MS therapy for a while to concentrate on your growing family.

If you are nearing 35-36 (and a woman, not important for males) you may want to get one course only and wait for the second course until after your pregnancy. Of course your doctor should be in the loop for these decisions.

I hope this provides young women out there with more Lemtrada hope!

As for me, nearing 41, I think my window has passed and I am accustomed to life without little ones but I am so happy for those of you who have CHOICES that us old people never really had :)