Experiencing severe reactions from Avonex

[conita]

Is there anyone out there that has severe symptoms from the Avonex pen injections? I really could use some support. The Avenox pharmacist is a wonderful person to bounce questions off of, but I need someone to keep in contact with. I am experiencing tearfulness, sadness, aches, pains, and a feeling of isolation, which lasts 3-6 days.

The pharmacist informed me that I sound like I am one in the 3% of those with severe symptoms from the Avenox. My neurologist wants me to stay on the weekly injections, even though I have felt like stopping the medication. This is the 9th week of Avonex.

I do have an hour or so a day of increased energy toward the end of my week after the injection. This is an improvement from the past 5 years or so. I was misdiagnosed with fibromyalgia 10 years ago. The M.S has been affecting me for those 10 years, without medications.

Is it true that the Avonex will halt the damage done in those 10 years? I am praying so. I have RRMS. I know this is not nearly as damaging as the PRMS, but disheartening just the same.

I hope that my message touches someones heart enough to be a steady contact for me. Thank you, Conita

[HarryZ]

Is it true that the Avenox will halt the damage done in those 10 years? I am praying so. I have RRMS. I know this is not nearly as damaging as the PRMS, but disheartening just the same.

The literature on Avonex (part of the original DMDs discovered in the early 90's) shows that it has little if any effect on the progression of MS. A recent study by a MS doc at the University of British Columbia, following thousands of patients for 10 years showed that MS disease progression was no different for those who used the medications vs those who took nothing.

The fact that Avonex is giving you such lousy side effects should tell you that your body is simply not tolerating it very well. MS patients all react differently to the various medications and you should be discussing trying a different drug rather than remaining on one that is making you feel so poorly. While some patients do OK on the drug, you appear to be one who doesn't.

Remember, it's your body and you should be the one who decides what medication you take.

Harry

[lyndacarol]

conita – I am not currently using Avonex, but I did the weekly injections for seven years. I did not experience the symptoms you describe, but I found no benefit either so my neurologist and I decided that I would try Copaxone. I used Copaxone for about six months but had intolerable side effects with that drug so I quit using ALL drugs currently approved for the treatment of MS.

It is my opinion that until researchers KNOW the actual cause of MS there can be no effective treatment for the disease. At this time I think that diet is the best approach. Dr. Terry Wahls had remarkable improvements with her regimen of diet and exercise (neuro-muscular electrical stimulation) – see http://www.TerryWahls.com

Be assured that your message will be read by many supportive friends here; I know there are many who are using Avonex and someone will probably match your situation exactly. All the best to you – we welcome your questions at any time.

[Scott1]

Hi,

I've now been taking Avonex for a very long time and I think I was probably amoungst the earliest group of users in Australia. The original form required you to mix it yourself by combining the powered product with sterilised water. It was a brute of a thing and I had a great deal of difficulty in the early years. I can absolutely identify with how you feel. I have persisted with it and now after many years have a very mild reaction. WhenI first took it I thought I might be killing myself the reaction was so bad.
Avonex is an interferon which is a protein released by a host cell in the presence of pathogens. It acts as a signalling agent to alert the immune to go on the attack. The same reaction occurs naturally as you get the flu or a virus and you consequently begin to ache. It's the surge of interferon that makes you feel bad but the interferon really arks up your immune system. I imagine you feel so bad because you have other underlying infections that are giving the immune system something to react to.
I, respectfully, disagree with the study HarryZ referred to. The other thing interferon works against is called VLA4 (very late antigen 4). This is the same target that Tysabri was after. That medication was a monoclonal antibody designed to bind to the target and switch it off. It was probably not specific enough hence some very sad outcomes occured. We really need to reduce VLA4 so I would suggest you persist with interferon. Please revisit your doctor and get checked for underlying infections like Chlamydia pneumoniae, Rickettsia, Prions, herpes viruses etc. Many can be treated and that should lessen the reaction.
I found that adding the antiviral, Valacyclovir (Valrex) dramatically lessened the impact of the injection. Other things I've done and the development of my thoughts are under the post called Avonex and Valtrex in the regimen section.
Regards

[HarryZ]

Avonex is an interferon which is a protein released by a host cell in the presence of pathogens. It acts as a signalling agent to alert the immune to go on the attack. The same reaction occurs naturally as you get the flu or a virus and you consequently begin to ache. It's the surge of interferon that makes you feel bad but the interferon really arks up your immune system. I imagine you feel so bad because you have other underlying infections that are giving the immune system something to react to.

Interesting explanation but aren't we told that a MS patient's immune system is too active and the idea is to curb it, not entice it?

I, respectfully, disagree with the study HarryZ referred to.

It's everyone's right to agree or disagree but this study involved the following of thousands of MS patients over a 10 year period and the author came to the conclusion she did after going over the data. Her results were not influcenced by drug companies or outside pressure but by examining how MS patients acutally fared either by using or not using the DMDs.

While some patients do OK on the DMDs, the efficacy of these drugs is minimal at best. When Tysabri first came out, a number of MS neuros made the comment that they could finally stop using the DMDs since they were very ineffective and caused several patients to be ill most of the time. Then Tysabari got recalled and these same docs had to recant as they had no choice but to put their patients back on the DMDs.

[Scott1]

Hi Harry,

On the first point- The polite term that was first used by the neuro who put me on Avonex was that it was a modulator of the immune system. I think he assumed it behaved in a similar fashion to cortisone based treatments which would aim to dampen the immune reaction. Interferon just doesn't work that way. This link to a Wikipedia summary sets it out fairly well.

http://en.wikipedia.org/wiki/Interferon

To quote from the article-
"IFNs have other functions: they activate immune cells, such as natural killer cells and macrophages; they increase recognition of infection or tumor cells by up-regulating antigen presentation to T lymphocytes; and they increase the ability of uninfected host cells to resist new infection by virus. Certain host symptoms, such as aching muscles and fever, are related to the production of IFNs during infection."

It is not downregulating the immune system rather interferon is a massive jolt to fire it into action.

Dampening the immune system down is just asking for trouble. If your doctor thinks that's right to do that except to halt a severe attack then I feel he is doing a disservice. A strong immune system is vital.

I'm not sure which study you were referring to about the efficacy of Interon for MS but all studies have terms of reference. If that study says that, in isolation, Interferon doesn't achieve much then I'd agree. Where I found I got some bang for my buck was when I added an antiviral. On it's own the antiviral was a failure for me as well. Studies using just the antiviral I use (Valtrex) said it didn't work either.
I start with a premise that EBV is a problem and leads to disruption of the Glycogenic cycle. Using a combination approach I've had a lot of success. Other MS people I know who tried the same approach have noticed it has helped them. It's not quick to fix but I'm really very well these days.
I still think our friend on this thread should try the Avonex but perhaps she needs some help managing the side effects. It's a lonely road to travel and people who don't inject just don't really get it. That includes the doctors.
If we just focus on Interferon then we may blame the adverse reaction it creates on MS when it's really other pathogens we can eliminate that makes the effect so bad.
I use Panadol rapid when I inject but thankfully the side effects have moderated since I began to recover.

Regards

[NHE]

It is not downregulating the immune system rather interferon is a massive jolt to fire it into action.

Ifn-beta shifts the immune system from Th1 to Th2. One example of a Th1 cytokine is Ifn-gamma which makes MS worse. A shift to Th2 makes the immune system less inflammatory.

[Scott1]

Maybe.

http://www.ncbi.nlm.nih.gov/pubmed/12946237

http://www.biocarta.com/pathfiles/h_th1th2pathway.asp

There's a few moving parts.

Regards

[HarryZ]

Scott,

Your comments on how interferons work on MS are quite interesting. I have read over the years that researchers aren't really sure just how these drugs work on MS and can only offer theories. Thus we have different explanations from different docs, sometimes very different.

It has been written a lot that the DMD efficacy on MS sits at around 30% over placebo and that refers to number of attacks, not disease progression. So if a patient has 3 attacks in any one year, supposedly if they use a DMD, that would be reduced to 2. Add the side effects patients have to endure most of the time that's not a great incentive. And now we learn that long term use of the DMDs doesn't stop the progression of the disease. Again, disheartening news.

Your use of an antiviral is something that works for you which is great but I wonder how many other MS patients using a DMD follow that procedure. You would think that if it worked so well, it would be a common practice but I don't recall reading any literature on that before.

And now that Tysabri is around, we find it selectively reduces the activity of the immune system to such an extent that the dreaded PML and other infections have become an unwanted side effect.

Harry

[Scott1]

Hi Harry,
I'm way too big a chicken to use Tysabri. The problems that arise with that treatment relate to interactions with JC Virus (John Cunningham Virus) that affects at least 70% of the population and can be found in the tonsils and GI tract (sound like familiar places!!). The proper name of Tysabri is Natalizumab. The "mab" means monoclonal antibody which is a designer antibody that is supossed to bind to just one receptor in the "V" vector of a "Y" shaped target. Generally, designer antibodies are non human originally and have been humanised and optimised to do one thing. They are imperfect in my mind. As well as Tysabri, rituximab, Elazizumab and Brentuximab vedotin all have "avoid if you have JC Virus" written on the box. I don't trust the doctors in that regard.

In regard to the lack of others doing what I do I'm not surprised. I've spoken to a number of researchers about what I do and there is a clear reluctance to trial the idea for two primary reasons 1) Money and 2) Peer pressure. I'll live with it until it happens but by all means feel free to try the ideas covered elsewhere.

Regards