I was diagnosed with MS six weeks ago (I'm still in shock about this!) and started Avonex injections. The reaction to the injection starts 6 hours after the injection with bone chattering chills, intense migraine-like headache, and an achy body. I take Advil every four hours but that doesn't seem to help. The headache continues through the next day.
My doctor said he is unable to diagnose what type of MS I have - which seems odd. I do not want another night of this misery. Can I stop the injections or will there be withdrawals?
I see a new doctor in four weeks. Not sure I can stand the thought of doing this for four more weeks until I see the doctor for a possible change in meds.
Also, has anyone found that a change in diet helps? I read that eliminating animal protein helps.
Thanks for any advice you can offer!
Hi sobey and welcome to the MS community. I'm sorry you're dealing with medication difficulties and doctor changes before your brain and emotions have even had a chance to process the diagnosis. Any single event is stressful enough! You must be overwhelmed.
I'm glad you found us because many people here have loads of experience they are willing to share. We enjoy encouraging one another here and welcome new people. We can usually offer help without being too overwhelming.
So, on to your questions.
I don't take an interferon drug (I use Copaxone) but others here do and I'm sure they will be along to add personal experience. I can offer some info though.
The six hours time frame sounds average for the 'flu-like' symptoms to appear. I know staying hydrated is very important. Others can share the names and dosages of drugs they use to combat these side effects and how they time injections to minimize the misery. There are a variety of special tricks we learn by trial and error. Hopefully we can limits your trials and help you find success.
Injection reactions do tend to decrease over time so I'd stick with it if you possible can but there isn't any withdrawal involved with the disease modifier drugs. If you can't (or don't want to) consult with a physician or nurse practitioner I'd talk to someone at Avonex services @ 1-800-456-2255
Your reaction seems intense. Did your present neuro start you out on a lower dose and have you titrate up from there? Some people need to start out slower than others. There is also a possibility of allergy or intolerance with any drug. I won't quit it on your on though. Unfortunately, the early days of MS are often filled with a boatload of difficult adjustments.
Knowing what type of MS you have can be harder than determining the initial diagnosis. Many docs will observe you for at least a year before deciding which type you have. The designations aren't clear from any of the testing or from a single exam. The sub-group of MS is determined kind of after-the-fact when enough of the puzzle pieces fall into place for the picture to become recognizable. Almost everyone will be started on some type of disease modifying drug treatment initially under the presumption that if there is a chance to decrease relapses and/or delay disability.... we need to do it!
There are several different diets promoted as the best for people with MS. None of them are backed by scientific evidence (yet). People here have tried various diets and some say their particular choice has helped. I believe them. I tend to keep my personal preferences to myself because #1- I don't adhere to it all that well and #2 - I have noticed (for some reason) diet conversations are about as volatile as politics and religion.
Keep in mind that diet alone can NOT cure MS. (no drug can either!) Any food plan you choose should be used only in combination with conventional treatments to enhance the success of both. Mainstream medical practitioners usually stick with a similar recommendation for everyone - a well balanced diet that includes a variety of foods.
Now I probably did overwhelm you and I didn't even have a good answer to your original question. I hope someone else came along with a wonderful answer for you while I blah, blah, blah...ed away.
This early in the game, I'd be included to call the nurse, then consider stopping it. From what I read from others on this drug, you have to start the Advil and such BEFORE you take the drug (can't remember how often, but someone will chime in - week-ends on here are slow)
I agree with two pack, am amazed he put you on a DMD and didn't tell you what type of MS you have.
Am so sorry that you got hit with this! I know the symptoms are normal for this drug but it appears you got a full dose of it! Perhaps you will have to switch to another drug........so YES, go see the new neuro for sure..........RUN
Welcome to our corner, there are some wonderful knowledgeable people here and back to bed with you, warm covers, warm liquids, OTC meds, comfort foods, tele and all that....
"I agree with two pack, am amazed he put you on a DMD and didn't tell you what type of MS you have."
Except twopack didn't say that at all.
I'm very happy a DMD was started as soon as the diagnosis was made. I am disappointed the prescriber isn't following closely for rapid resolution of difficulties. I AM NOT a fan of giving up on a DMD unless there is a clear reason to do so. At any rate, we can't make that decision for someone else.
In my experience people report being diagnosed with possible MS, probable MS, definitive MS, clinical MS or (plain old) MS. It seems some docs use these designations and others don't. Those that do will often decide to prescribe DMDs (or not) based on the category they put you in but I'm not so sure there is a code for anything other than #340 - Multiple Sclerosis.
It is usually LATER, when disease or disability progresses, that there may be more talk about sub groups like RRMS, PPMS and SPMS. They are general descriptions rather than specific disease courses or indicators of severity. My MS specialist says I have MS - period. He never offered more than that and I never asked - and neither does my benefit provider. Doc would probably have an answer if I asked. I'm not at that place right now.
I don't know why sobey will be seeing a new doc. The little that was shared didn't make me suspect there is something lacking with the diagnosing physician. I certainly see no need to RUN unless it is to find a means to continue using the Avonex without feeling so bad for so long afterwards.
Now that I have thought about this a bit I believe people seem to like Aleve (it lasts through the night) and plenty of fluids to diminish symptoms. What dose of Advil are you taking sobey? Perhaps you need a different NSAID or a higher dose? Or maybe your Avonex dose needs to be lower to allow so adjustment time.
I say: Keep in the fight if you can. Otherwise you'll be able to pick up a new weapon next month. Whatever you decide - there SHOULD be a doc you can report to that is taking responsibility during this interim period.
First, I want to thank you so very much for your kind words of encouragement. I feel so alone with this disease and you have made me feel not so alone. I truly appreciate it.
I have been drinking 80 ounces of water a day and taking Advil. I will try Aleve. Maybe that will help.
The only symptom I had when I was diagnosed were episodes where it felt like my brain would freeze. That only last for ten seconds for so. I'm down to just a few episodes a day - I'm not sure if that's due to the medication, the fact that I have eliminated animal protein from my diet (no dairy or meat), or if my particular MS is RRMS and I am in a remitting phase.
The neurologist who diagnosed me is not an expert in MS - his specialty is brain injury. I suppose that is why I don't have much faith in him. I am scheduled to go to the UW MS Clinic next month where I feel I will have a better chance at a correct diagnosis and medication. The other thing I have read (and I am probably reading too much) is that I need to have regular liver tests...the first three months after the injections begin. The doctor never told me this...he just said 'see you in six months for an MRI'. So I'm worried about not being scheduled for that test.
Thanks for your warm welcome. You are angels to help me out!
I am on Avonex and have been since February - Are you pre-medicating? I follow this regime and it has worked for me - Maybe try it for your hext shot and see how you do.
evening before take two aleve - Morning of Take to acetaminophen and drink alot of water - and night of take two more aleve - then if there is a headache the next am take two more acetaminophen. So far the only time
i had any reaction is when I forgot to pre-medicate.
I know everyone is different but it is worth a shot.
Hi, I'm so sorry to hear how bad the avonex is making you feel and can totally relate to the feeling of shock following diagnosis. From what I've read and been told, the interferon's can make you feel pretty rough. It seems a bit of an unfair trade-off...swapping MS for feeling bad on the drugs to stop the MS! I was taking Copaxone myself but had an adverse reaction so had to stop and am now waiting for a cecision on my treatment (Tysabri is looking likely) I believe a lot of the undesirable side effects you're experiencing can ease up over a few months so it may be worth persevering if you can stand to do that. As for diagnosing a specific type of ms, most people start with a diagnosis of RRMS. If you had PPMS you would have a steady worsening of your ms without distinct relapses and if you had Benign MS only time would tell. You asked about eliminating animal protein but I'm not convinced about that because lots of vegans (myself includedd) get ms too!
Thanks so much for the 'formula'. I will be sure to follow it to see if it works for me. I had been doing Advil rather than Aleve and no acetaminophen. The doc told me last week to try benadryl and Aleve one hour prior but I like your idea better!
I will forge ahead. Sometimes I feel like buckling with the weight of the diagnosis but that's not going to get me anywhere. So back in the saddle for me.
I appreciate your help and will let you know how it goes tomorrow night!
I’m sorry the side effects have been so troubling for you. It’s not clear to me exactly how many doses you’ve had so far, but for me the first couple were followed by effects similar to yours. That was also the case, to a lesser degree, when I restarted the medicine after a seven-week hiatus. If you’re already as far as you’re sixth injection, it’s a little disconcerting that the effects are still so intense, but I would still encourage you to hold on for another four weeks. There would be no “withdrawals” as you put it, but restarting later would likely put you at square one all over again.
My regiment has been two acetaminophen an hour or two before injection (when I remove it from the refrigerator), then inject in the evening, then two more pills before I go to bed. After eight years, I don’t usually need more acetaminophen the next morning. I certainly endorse pre-medicating with another dose or two of acetaminophen (or your drug of choice) spread over the day ahead of the injection, as others have alluded. And yes, hydration with water as you’ve done can be helpful, I suggest avoiding caffeine on injection day if you’re not already.
Other notes … Yes, you will need regular liver tests (blood tests), although not monthly. I have them annually, maybe early I had them after three and six months but I don’t remember. … And you say you’re down to just a few brain-freeze episodes a day, I don’t think that would not be a result of Avonex. The medicine does not really work that you notice things, or the lack of things, in the near term.
If you get back here please let us know if this doc had you titrate the dose when you started Avonex or if he had you jump from the high dive your first time out. It could be helpful to the next person who travels down this road. Thanks!
Hope last night went well, was followed by a decent night and comfortable day. So glad you decided to stay the course a while longer.
I was initially put on a different interferon - Rebif - and while I never experienced flu like symptoms, I did have to discontinue this med after several weeks due to increased liver enzymes, triple the high end of the normal ref range. I probably didn't get the flu like symptoms as I never got any higher than the half dose. It was very concerning to my neuro, and to me, that my liver enzymes shot up so high, so quickly, on the half dose. My first blood test was done four weeks after initiating treatment, second was done two weeks later, abnormal results both times so suspended treatment for four or five weeks, started up again and after only one injection levels were again too high, so my neuro concluded the earlier results weren't a fluke and had me stop and switch to Copaxone. It's a concern that this doc set you up on treatment that requires this kind of monitoring, especially in the early stages, with no testing or timely follow up planned. Hopefully the MS specialist will be more involved and vigilant.
Hiya. I've been on all of the DMDs and I found that when I took Tylenol with my injections ...I actually felt worse. When I take ibuprofen with the meds, I didn't suffer with the typical side effects as much.
I know it's different for everyone but that has been my experience. It's also my experience that I had the most flu-like symptoms while I was on Avonex BUT it can be managed.
I hope you've been able to find that comfortable medium with your DMD....in as much as there is such a thing for us....
The doctor agreed to return me to the 3/4 dose so the injection went well with no side effects. I did drop the Advil and went to the acetaminphen and aleve combo (thank you Tracy!). The doctor wants me to stay on 3/4 for a month and then back to full dose so I have one month of peace.
Still no suggestion that I have a liver function test prior to six months - that concerns me.
Has anyone heard of Gilenya? I am going to attend a presentation next month Once a day pill. Great testing results. It's been on the market for two years.
Thanks again for your support and suggestions!!!
I agree the lack of liver function testing is a concern. A baseline test should be done prior to starting treatment. As for testing frequency once treatment has begun, I think there are different experiences here, but given mine I would recommend the first one be done about four weeks in. If there is a problem, the earlier it is detected, the better. This will help to prevent serious liver damage, and expedite getting on another treatment if necessary. The majority of those on Avonex don't experience this problem, but for the minority who do, it can be serious if undetected.
I would not wait out the six months till any follow up is done; I would request that a test be done in about a month. This might be a situation where you as the patient need to be more directive than you might otherwise need to be with a more diligent doc.
I also wonder if this doc did a depression screening. This should be done prior to starting treatment given this drug can cause depression, and those with a history of depression are at greater risk of it recurring or worsening.
There is another thing that can be done to help with this reaction. A small dose of oral predinisone (10 mg would do it.) Take it with your shot. You may need to do this the following morning as well. Hydrate well. This is how my doctor helped me manage a similar reaction. Over time, I didn't need to continue w/ the steroids anymore.
Call your current neuros office, and tell them what you want and why. It shouldn't be a problem.
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