PS - I've been on Avonex a little over 7½ years and this is the first time this has happened to me.
My experiences so far have been similar to your 'usual' experience - when I have been feeling like I was catching a cold, the Avonex seemed to beat it back, and I have not had a full blown cold or dose of flu since I have been on Avonex ( 1 yr next month). This is a double edged sword - you know the problems I have had with Avonex, however in the year preceding my commencing Avonex, I almost continually had flu - saw my GP every month! Big indication my immune system was busy elsewhere.
I will watch out for what you describe though - it sounds very scary - you must have wondered if you were having a relapse. So glad you are better & hope the sinuses clear up (weird how many ms'rs have sinus issues).
Just been flpping through my package insert on Avont and found something of interest in connection with your problem (above):
"Transient episodes of hypotonia and/or severe muscle weakness that prevent voluntary movements may occur at any time during treatment. Thes episodes are of limited duration, temporarily related to the injections and may recur after subsequent injections"
This might shed some light?
I seem to recall that Avonex contains glucose – now I wonder if it can trigger excess insulin secretion, which migrates to the muscles (causing hypotonia). I know that insulin can permeate the blood brain barrier (can damage the blood vessels, ferries glucose to the muscles – excess insulin is known to stiffen and thicken the smooth muscles).Transient episodes of hypotonia and/or severe muscle weakness that prevent voluntary movements may occur at any time during treatment. Thes episodes are of limited duration, temporarily related to the injections and may recur after subsequent injections
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Now, on the other hand, your post didn't answer my question, but I hope that others will be drawn to the thread that you started on this subject.
I am assuming that yes, it's a good idea to keep on with the Avonex on schedule when one catches a cold or flu, since the immune system is being activated, and we want those pesky Th1s to be converted to Th2s and 3s and suppress inflammation and attacks on myelin and neurons and all that good stuff. So, yippee, I'm off to do my 31st injection of Avonex. Too bad I have to wake up in the middle of the night to take more ibuprofen...sleep disruption is a drag, but, then, so are flu-like symptoms, which I avoid almost completely if I stay up on my ibuprofen (every ~4.5 hours I take 600mg).
Tally ho, off I go to set up for my shot....
This is from the prescribing information for the lyophilized form of Avonex which I was taking:lyndacarol wrote:I am especially interested in AllyB's information from the Avonex package insert:I seem to recall that Avonex contains glucose – now I wonder if it can trigger excess insulin secretion, which migrates to the muscles (causing hypotonia). I know that insulin can permeate the blood brain barrier (can damage the blood vessels, ferries glucose to the muscles – excess insulin is known to stiffen and thicken the smooth muscles).Transient episodes of hypotonia and/or severe muscle weakness that prevent voluntary movements may occur at any time during treatment. Thes episodes are of limited duration, temporarily related to the injections and may recur after subsequent injections
No glucose.30 mcg Lyophilized Powder Vial A vial of AVONEX ® is formulated as a sterile, white to off-white lyophilized powder for intramuscular injection after reconstitution with supplied diluent (Sterile Water for Injection, USP). Each vial of reconstituted AVONEX ® contains 30 mcg of Interferon beta-1a; 15 mg Albumin (Human), USP; 5.8 mg Sodium Chloride, USP; 5.7 mg Dibasic Sodium Phosphate, USP; and 1.2 mg Monobasic Sodium Phosphate, USP, in 1.0 mL at a pH of approximately 7.3.
Have you ever tried taking your shot earlier in the day? I found that if I inject around noon that the side effects are much more tolerable and I would sleep better. My body never seemed to thermoregulate well while sleeping on Avonex and I would often wake up in the middle of the night with chills and shakes.Longing4Cheese wrote:Too bad I have to wake up in the middle of the night to take more ibuprofen...sleep disruption is a drag, but, then, so are flu-like symptoms, which I avoid almost completely if I stay up on my ibuprofen (every ~4.5 hours I take 600mg).
To be fair, I should have also included the ingredients for the prefilled syringes since many people now use those.lyndacarol wrote:Thanks, NHE, for correcting my memory about the ingredients in Avonex. If not Avonex, doesn't one of the CRAB drugs contain a sugar? Or has my memory gotten so bad?
It does contain 25 micrograms of Polysorbate 20. But the structure of this molecule doesn't even look close to any sugar or starch. Even if it was metabolized to the 5 member ring which sort of resembles a sugar, the low levels at 25 micrograms would not likely be significant.* It's presence is likely just to stabilize the Inf-B in solution.30 mcg Prefilled Syringe:
A prefilled syringe of AVONEX ® is formulated as a sterile liquid for intramuscular injection. Each 0.5 mL (30 mcg dose) of AVONEX ® in a prefilled glass syringe contains 30 mcg of Interferon beta-1a, 0.79 mg Sodium Acetate Trihydrate, USP; 0.25 mg Glacial Acetic Acid,ഊUSP; 15.8 mg Arginine Hydrochloride, USP; and 0.025 mg Polysorbate 20 in Water for Injection, USP at a pH of approximately 4.8.
* If we make an assumption about how a polysorbate 20 molecule might be metabolized such that the ether bonds surrounding the 5 member ring are hydrolized to hydroxyl groups, then the amount of "sugar-like" molecule would be reduced to 3.34 micrograms since the resultant molecular weight (164.18 g/mol) would be just 13.37% of the parent molecule's molecular weight (1227.54 g/mol).
"Transient episodes of hypotonia and/or severe muscle weakness that prevent voluntary movements may occur at any time during treatment"
I've been taking avonex for almost 3 months now and today I've had moments where I would feel lightheaded and my left leg would feel extreemly weak! it would pass but happened multiple times. I took my injection on Monday night 9pm and these feelings started today Wednesday around 11am onwards. I also had a moment where my arm felt weak and uncorordinated, at the moment the right of my face feels mildly numb-ish (also just happened today) and leg is more constantly weak just less severe then the episodes earlier in the day.
Does this sound to you guys like the Avonex's "Transient episodes of hypotonia and/or severe muscle weakness" or potential relapse? I tried to ring my MS nurse but got no answer
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I have a bad cold: aches and pains, sore throat, some sinus goop. My 5 mo. old babies had it first: the girl kicked it right away, and the boy got a very bad case of congestion, which is still trying to clear after several days. Catching viruses from children is something that I'm concerned about...and it's probably in another thread.
So, back to wwhether or not to take Avonex while one is sick. I started feeling sick (sore throat, muscle aches, skin sensitivity, headache, some sinus stuff) on Thursday at noon; it's now Friday at 1pm, I feel rotten. I usually take the Avonex on Saturday evenings or nights.
MY QUESTION IS:
WHICH IS THE WISE THING TO DO FOR BEST NEUROPROTECTION:
1) TAKE AVONEX 1 DAY EARLY (TO PUT BRAKES ON IMMUNE RESPONSE -- TO PROTECT CNS)?
2) TAKE AVONEX ON SCHEDULE?
3) WAIT UNTIL I'M NOT FEELING SICK TO TAKE AVONEX?
I called Avonex, and the patient services rep recommended staying on schedule, but added that I should talk w/ my healthcare provider.
I called my neurologist, got his "medical aide," and she asked me one question: Do (I) usually feel the cold or flu-like symptoms after taking Avonex? I answered YES. She said, 'then wait until you don't feel lousy before you take Avonex.'
I asked if this answer was based on my comfort or because it would be the best thing medically. She gave me a vague answer. I said, 'Because if it would be more helpful to take it now while I'm sick, even if it made me feel lousy, I'll take it, I'll do what I gotta do.' Her response was, "Exactly."
Clearly, she doesn't know. Whomever she asked (both people I talked to put me on hold to find info/ask someone) may or may know whether there's any therapeutic difference between taking Avonex while sick versus waiting till one's immune system has finished fighting off the "cold" virus.
Maybe nobody knows. But doesn't it seem like an important question??
Mine where affected on more than one occasion and I am no longer on Avonex. My Neuro swiched me to Copaxone in July but I have not started yet.
I have a cold and was searching to see if I should take my Avonex shot tonight. I have been on Avonex for two and half years. What I found from reading these entries sparked another question.
I always presumed that everyone experiences the flu symptoms as well as the debilitating muscle weakness and stiffness. I experience this with every shot. I do not drink a lot of fluids after the shot and before bedtime because I do not want to wake up in the middle of the shot reactions. I have much difficulty a few hours after taking the shot, if I need to get up to go to the restroom.
Once I had strep throat and was advised by my doctor not to take the shot that week – stating that it could cause a flareup and would make it harder to recover from the strep throat.
After reading all of your experiences, I am still unsure what to do. I have chest congestion and am afraid of making it worse.
I will be asking my doctor regarding the hypo
My doctor has also asked me to think about switching off of the Avonex and onto some other drug – as yet undecided - because although I have not experienced flareups, my condition (walking and right arm and hand difficulties) has progressed. I feel like asking me which drug I want to switch to, is like asking me if I would rather be shot or stabbed, given the side effects. But that is whole other subject
It is my personal opinion that flu, strep throat, other mucus-causing conditions elevate glucose in the bloodstream and, thereby, elevate the insulin in response. I believe this excess insulin initiates the MS symptoms.
I am generally anti-drug And my system is sensitive to all drugs, always has been. I do all organic, no gluten, 14 vitamins a day, avoid processed foods, have followed recommedations from The MS Recovery Diet book. etc, and my reaction to Avonex is pretty awful - But these doctors have me afraid of going without MS drugs. And the drugs they suggest I switch to, sound even worse.
May I ask, since you have been off all MS medications, have your MS symptoms significantly progressed? If no, what kinds of things are you doing?
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