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Hi there

Does anyone have any suggestions on how to deal with the really debilitating muscle cramps and pain that come with Avonex. I really want to keep on this medication, but this is a problem for me for about two days each week. I take the ibuprofen and tylenol that the docs tell me to, but although it helps with the fever and chills, it does nothing for the cramps (or headaches). I am prepared to try complementary therapies - would massage, reflexology help? Or maybe yoga ( the cramps compel me to stretch my muscles anyway, but I am not exactly flexible!). I would love to soak in a hot hot bath as it feels as if I have been battered around a bit, but am scared of the Urtoffs (bad spelling). Any advice, complementary or medical, would be appreciated as this interfers with my work etc.

thanks

Hi AllyB,
I've found massage to be really helpful especially early after my diagnosis when my MRI report stated that I had an enhancing lesion at the site of a prominent disc bulge. I haven't had debilitating muscle cramps as you describe them but I have had general overall muscle aches. I find that I need to do stretching exercises just about everyday or my legs will get really stiff. It only takes a couple of minutes and I find it helpful.

NHE

Hey NHE

Thanks so much for the response - i currently have an enhancing lesion with bulging of the spinal cord at C4! This gives me a good reason to book a weekly massage at my local spa (I have avoided massage for fear it may do some damage - go figure) - if I have it early Monday before work, maybe it will help me through the day - will give it a go.
I will also try to motivate myself to get into a daily stretching routine - this would go well with my swimming, as I would imagine flexability could be better in water because of the weightlessness. Do you stretch in the morning or evening? Does it help you sleep better? I have only been on Avonex for a few months and hope it will improve with more time and some help from those like you who have travelled the road. Have you tried yoga?

Thanks again and take care

AllyB wrote:Thanks so much for the response - i currently have an enhancing lesion with bulging of the spinal cord at C4!

Interesting. Mine was in about the same place but at C6-C7. I think the bulging disc was a left over from a car accident where I was rear ended on the freeway. My neurologist's nurse commented that "short of surgery, there wasn't much that could be done about it." I didn't accept this answer due to its myopic narrow mindedness so I tried massage. I went about once a week for a couple of months and I think it really helped. My theory was that loosening up the tight muscles would help to alleviate the excess pressure on the disc from the vertebrae. It's been several years since I've had an MRI, so I don't have any further data for comparison on this specific problem.

Do you stretch in the morning or evening? Does it help you sleep better?

I don't have a set pattern. I stretch at least once a day whenever I feel like it. Often, it's when I'm standing around waiting for my water to heat up for my next cup of green tea.

I have only been on Avonex for a few months and hope it will improve with more time and some help from those like you who have travelled the road.

Yes, give it some more time. It took me nearly a full year, almost two, before I really felt like I was through to a point where the side effects from Avonex were negligible. Early on, I used to get an overall soreness the following day where taking a shower would remind me of being on a ski lift chair and having sleet hit me in the face. Needless to say that, combined with the extra fatigue, fevers, chills, and shaking, it wasn't much fun. Still, I wouldn't trade those experiences for the lipoatrophy problems seen with Copaxone. Moreover, I can also do without the "injection site tissue necrosis" described in the literature for Betaseron. My most serious injection site reaction has been that I occasionally get a quarter sized bruise that lasts about a week. This has happened probably less than 10 times in the past 7 years. I know that the dosage is higher with the other beta-interferons. However, I had a nurse tell me that the absorption efficiency of an IM injection was around 80% while it was around 40% for a SC injection. Given this information, the disparity between the dosage regimens isn't so great.

Have you tried yoga?

No. I try to go for walks in the evening when it's cooler out. I can usually go for about 1.5 - 2 miles before I'm starting to trip over my own feet. In addition, I also try to go bicycling and find that I can do that all right though when I get off my bike I can't walk straight. I was also recently given a glider machine like those advertised in the late night TV infomercials. I've used this a few times but find that even 10 minutes on it really wipes me out.

Anyways, I hope that your situation improves and I look forward to hearing about your results with massage work.

By the way, I was wondering how much ibuprofen you're taking for the side effects? When I first started with Avonex, I was taking 600 mg every 6 hours for about a full day. Now I find that I can usually get by with just one 400 mg dose about 3-4 hours after my injection. I also find that I do better by injecting mid day instead of in the evening. It seems that Avonex really messes with my body's thermoregulation when I'm sleeping and I don't get so many problems when I'm awake. I've also read that other people on this forum have done fairly well by taking an antihistamine instead of ibuprofen. I've tried that once or twice but have yet to test it for an extended period of time.

NHE

Hi NHE

My neurologist's nurse commented that "short of surgery, there wasn't much that could be done about it."

My neuro wanted to inject steroids directly into the area under CT Scan guidance - I freaked out and said absolutely not! No way was I letting anyone come near my neck with a big fat needle.... I will definitely try massage - I used to be a regular, but stopped when I got these new lesions in my neck as it seemed so fragile (in my mind anyway).

Still, I wouldn't trade those experiences for the lipoatrophy problems seen with Copaxone. Moreover, I can also do without the "injection site tissue necrosis" described in the literature for Betaseron.

I agree, I also have had no serious injection site reactions from Avonex - I had a bit of a "squirter" once, when I must have hit a vein, but even then, I just had a small bruise (though must admit it was a little disconcerting, and stained my bedlinen!); it is just the side effects that impact on me at the moment.
I am a little worried though as I have just read the study on Rebif together with statins and how they think the statins "cancel out" the effect of the interferon - I am on a statin and have been since before I started the Avonex - perhaps that is why my big lesion is still enhancing???...will have to chat to neuro again!

I was also recently given a glider machine like those advertised in the late night TV infomercials. I've used this a few times but find that even 10 minutes on it really wipes me out.

I also had one of those and couldn't manage it for long, then I got a stepper thinking it would help strengthen my legs - couldn't do that either, so now I stick mainly to swimming - I live in a very hot climate (even in winter - doesn't even get cold enough for frost at night!), so I find this works well for me - I need to incorporate stretching with my swimming (used to swim competitively in high school and at university!).

By the way, I was wondering how much ibuprofen you're taking for the side effects?

Just checked my pills now, and I am taking a combination pill - 200mg ibuprofen and 250mg paracetamol in each pill and I take 2 pills every 8 hours - guess I could increase it, hey? The medical community scare the hell out of you will drugs, so thanks, I will take 3 pills and see how it feels. I also inject about lunch time as I tried it at night as it says on the package insert, and I was much worse - fever of 41C etc.

Thanks for sharing so much - I will get back to you in a few weeks re: the massage & increased meds.

Take care

AllyB wrote:I will definitely try massage - I used to be a regular, but stopped when I got these new lesions in my neck as it seemed so fragile (in my mind anyway).

I've found that the efficacy of massage therapy varies greatly with the individual practitioner. I've had some help me while others have not. In any case, it would probably be a good idea to let the massage therapist know about your bulging disk and MS lesions. The more information they have, the more likely they will be able to help you.

I am a little worried though as I have just read the study on Rebif together with statins and how they think the statins "cancel out" the effect of the interferon - I am on a statin and have been since before I started the Avonex - perhaps that is why my big lesion is still enhancing???...will have to chat to neuro again!

I've only read the abstract for that paper but it seems reasonable that statins and beta-interferon are canceling each other out as the statin is inhibiting a pathway required for beta-interferon signaling. There may be other ways beside the statin to control your cholesterol. Or, another option would be to just go with the statin since some people are reporting good effects with just that all by itself. Still, I or no one else here can give you medical advice. For that you'll have to consult with your doctors. There is one last thing to mention, if I remember correctly, muscle pain is reported to be one of the possible side effects of taking a statin. I believe the statin literature refers to this as rhabdomyolysis.

NHE

If you are not taking calcium, magnesium and Vit D3, this could be why you are getting leg cramps.

gwa

Hi NHE

about your bulging disk

I am sorry, I gave you the wrong impression - I do not have a bulging disc - the bulge in the cord is caused by the inflamation in the lesion, but it is apparently slight. You are right, different therapist are perhaps better for different outcomes and it will be worth shopping around for one who has dealt with ms before, thanks. Muscle pain is certainly a side effect of statin use, but I was on the statins before the Avonex without this effect - rhabdomyolisis is a potentially fatal side effect, particularly of Crestor, and has never actually been reported with Lipitor, although it is in the package information for all statins (Lipitor has been around a lot longer than Crestor), and is associated with an already decreased renal function (I looked into this when my doc first prescribed statins and he wanted me on Crestor!). I left the study with my doc - just saw him, and will wait for him to call me - my cholesterole is now really good, and I may be ok with just diet and other lifestyle modifications. I know that no-one here is able to give me medical advice (especially over the internet!), but I find it so valuable to hear other people's perspectives and benefit from their experience - I am so glad I found this site, and am so utterly gratefull to anyone who responds with input - this is not a common disease where I live and I don't know one single person who has it other than me!

Gwa - thanks for your input, I actually do not take any supplements at all, and am currently researching different regimes - there is so much information out there and so many different opinions on what is best, it is hard to decide, so I have sat on the fence for too long. So I will try the ones you mentioned to adress this particular problem, while still researching the bigger ms regime that might be needed.

Thanks guys

Ally,

A lack of calcium will cause leg cramps, so I hope that you will get on the calcium, mag and D soon.

I think it is very difficult to get enough calcium in the diet alone.

gwa

Hi Gwa

Thank you - I will go to the chemist shop tomorrow to get the supplement - what dose of each would you recommend for pwms?

I have read that particularly for the vit D, higher than the normal RDA is needed. How do you feel on supplements - have you noticed a difference in your ms? I know this is not the thread for regimens, but some personal experience on these three would be appreciated.

Many thanks

Ally,

My internist put me on 1800mg of calcium, 900mg of magnesium and 4000 units of D3 per day.

I take 600 mg of calcium citrate, 300mg of magnesium 3x a day. I take 2000 units of D3 twice a day.

There are a lot of different sites that discuss dosages, but I tend to listen to physicians that study the internal workings of the body for years and this is what she put me on.

I have had this disease for more than 35 years, so I am not in great shape to begin with, but I don't have leg cramps. I found out when I was pregnant years ago that a lack of calcium caused the cramping I had then.

Good luck to you.

gwa

AllyB wrote: I actually do not take any supplements at all, and am currently researching different regimes - there is so much information out there and so many different opinions on what is best, it is hard to decide, so I have sat on the fence for too long.

Hi Ally,
If you haven't already, you may be interested in reading Dr. George Jelinek's book "Taking control of multiple sclerosis: natural and medical therapies to prevent its progression."

I also think that omega-3 fatty acids, particularly DHA and EPA, are beneficial for MS folks. I currently take about 5 g/day of fish oil. In addition, I also supplement with certain antioxidants which have been shown to be anti-inflammatory such as EGCG from green tea, r-lipoic acid, and curcumin from turmeric. I think I've described my regimen elsewhere on the forum. If you're interested in the details, I could PM it to you.

NHE

The supplements that NHE described are also ones that I take as they have been shown to be neuro protective.

I also take acetyl-l-carnitine since it works in conjunction with alpha lipoic acid in the brain.

gwa

Hi Ally,
I was curious which form of Avonex you're taking, i.e., the prefilled syringes or the freeze dried powder form? Some people have reported lower side effects with the dry powder form. In addition, I would tend to consider the phosphate buffer used in the dry powder form to be more physiological than the buffer used in the prefilled syringes which is an arginine/acetic acid buffer if I remember correctly. If you're using the prefilled syringes, you may want to talk to your doctor about switching over to the dry powder form and give that a try for a while to see if it's any better for you.

NHE

Hi gwa,

I also take acetyl-l-carnitine since it works in conjunction with alpha lipoic acid in the brain.

It would be great if you could post a reference for this. I was also curious if you have ever looked at the differences between r-lipoic acid (which is the natural isomer) and alpha lipoic acid (which usually is a 50/50 mix of the r and s isomers)?

Thanks, NHE