Beyond Avonex and Valtrex

Tell us what you are using to treat your MS-- and how you are doing.
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Interrupted
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Re: Beyond Avonex and Valtrex

Post by Interrupted » Sun Jan 18, 2015 5:29 pm

Ok i'm with you, thanks for the clarification (I never quite understand the scientific version, always need the layman one). I'm not sure what to make of said indiscriminate activation, considering it's generally accepted that our immune systems wildly mis-fire?

I'm trying to, it's not the first time i've taken it. I tried it a decade ago and couldn't tolerate it them so gave up pretty quickly. I probably will do at least one more, but two things will cause me to stop; if the headaches remain that brutal and/or if it keeps activating MS symptoms that are as debilitating as at present (+ that don't subside).

Thanks for the videos, yes we spoke about pilates before because I love it too, however I have the problem that I can't do it. It does trigger the MS back/legs. Every time I'm mobile enough to start again, it's a few days or a week and they go again. To be honest i'm scared of it now, of putting any pressure on those muscles at all if i'm honest. But i'll try again, I can't afford to have someone 1-1 checking me unfortunately, but i'm pretty good with the basics. Will let you know how I get on.
- You're absolutely right about the problem area. Out of interest, did you have mobility trouble previous to beginning your protocol?

The walking is a tad random but loosely predictable. This one was definitely Avonex, yes. But it happens generally that i'll get 1-2 weeks of being able to go out 10 mins a day walking the dog, then i'll start to depower, feel a bit fluey and the legs will start to go. I still have absolutely zero idea if these times are me picking up bugs that are provoking my immune system to do it, or if it just gets riled randomly every few weeks.
The trouble is that the frequency is definitely picking up pace and I don't recover quite as well as I used to. It's starting to build up.
Hence why I know I have to do something now to try and break this cycle, or i'll be in trouble.
28/07/10, 04/10/10, 16/11/10 - CCSVi Dopplers x3 ** 12/10/10 - Poland procedure. Symptoms worsened. No improvement.
13/02/12 - Wheldon ABX protocol for 1.5yrs. Fairly stable but no improvement. Unable to source alternate ABX needed.

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Re: Beyond Avonex and Valtrex

Post by Scott1 » Mon Jan 19, 2015 4:22 am

Oh dear,

What a problem. A cycle it is indeed. I remember some time back we discussed your tonsils. I still wonder about the degree of infection there. If they are still causing issues then that would be something that could make the Avonex reaction so severe.

If the Avonex is causing such a big problem then lets think it through. In a healthy body a strong immune system just does its job. In yours it sounds like when it is stimulated by interferon the reaction is anything but predictable. So you have two choices; bomb it into submission ( a la prednisolone) or try to strengthen it as it's probably exhausted. My view is normally to strengthen it (like I described in the review of the Sinatra book). If there is an infection then bring in some reinforcements. Obviously you have tried many medications and supplements. Valtrex, antibiotics, herbs, restricted diets, I guess you have to know what to hit first.

Are you sure you are avoiding things you may be allergic to? Dairy and Gluten are controllable but how is your environment? Do you have problems with mould, pollen,dust, dust mite, contact allergies, animal dander (does your dog sleep on your bed or furniture), feathers (what's in your pillows), solvents, chemicals, is your house old or do you have asthma, eczema or any other reaction? Any of these things can be inflammatory.

On exercise, I don't want you to use any weight at all. The video on breathing is very valuable. It shows how muscles react. Just lying down but practicing breathing into the back of your ribs can help.
Try this - lie on the floor and put your feet and calves on the seat of a chair. Put the palms of your hands on to your ribcage. Now inhale into the back of your ribs so the chest feels like it expands sideways rather than up. Count to 5 breathing in and 5 breathing out. Do it again and count to 6 then work on up till you inhale for 15 and exhale for 15. That's an exercise. You don't have to lift anything. Try that one and let me know how you go. You're starting from a difficult place so don't imagine you have to prepare for the next Olympics. While you're lying there take your arms out to make a cross and slide them in an arc from your hips to higher than your shoulders. That's an exercise. no lifting involved. The neural stretches in the videos are exercises. There is no lifting.
When I started years ago I was very stiff. Small movements hurt a great deal because my muscles and tendons just didn't want to go there. It took time but eventually I was much more able than so called normal people. I am getting back to where I was before my last attack because I had the good fortune to be really cared for by my pilates instructor and she helped me every day for three solid weeks. I know you don't have that to call on but anything you can do that's structured can help. Try googling Neural stretch plus arms,legs,neck,hands or whatever part you can think of. You will pick up plenty of useful clips on youtube.

When you walk do you feel like you are fighting yourself or are you out of control? When I relearned walking I felt I was fighting myself but sometimes when I had dead arms I felt they were out of control. I'm getting over that because I focused on stretching and that was hard with a lot of groaning involved.
I certainly don't want you exhausting yourself. You are retraining yourself at the most basic level.
I've had a lot of success with megadosing Q10 and targeting ATP production. You are obviously at a different place at the moment.
Can you remind me what you have each day?
Regards

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Re: Beyond Avonex and Valtrex

Post by Interrupted » Tue Feb 03, 2015 4:03 am

Hi, update again...

Week 2 of Avonex was better, side effects the usual but legs didn't disappear. Walked a bit more.
Week 3 I screwed up the auto-inject, didn't get all of it, but had strong reaction as usual so know I got most. I thought, well maybe it'll go a bit easier on me, but no, woke up the next morning with two swollen black eyes, seriously looked like i'd been punched in them both. Continued to have a really bad week of constant low grade Avonex headache, gnarly hands and legs coming and going. I've lost power again, feel very heavy headed, run down, anxious and have extremely light-sensitive and painful eyes. Constantly in Noir terminator specs and they still hurt. Plus my hands and feet have resumed freezing, painfully so. Hmm.

It's injection day tomorrow and I really don't know if i'll do it. I can cope with the immediate side effects, even though they are still a bit overly dramatic, but the lack of sleep, anxiety, eye problems and constant headache are really dragging me down. Awaiting a call back from the MS nurse so will see what she says but i'm thinking another option might be to do one every two weeks so I can get a week free, but then if it renders the treatment useless - kinda pointless.
I'm not too sure what is going on or what to do for the best, but will report back.

(PS currently on 250mg Valtrex/day alongside)
28/07/10, 04/10/10, 16/11/10 - CCSVi Dopplers x3 ** 12/10/10 - Poland procedure. Symptoms worsened. No improvement.
13/02/12 - Wheldon ABX protocol for 1.5yrs. Fairly stable but no improvement. Unable to source alternate ABX needed.

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Re: Beyond Avonex and Valtrex

Post by Scott1 » Tue Feb 03, 2015 1:40 pm

Hi again,

It's hard to gauge someone else's pain but all you have said sounds familiar except for the black eyes. That is tangible and unusual. Do you start pain control after it is apparent or before you take the injection? I used Panadol rapid and started two hours before I injected, again when I did inject and tried to inject just before I went to sleep so I could sleep through the first bit. For me, it was horrendous until I introduced Valtrex but your experience might be different to mine. It's hard to understand unless you've lived it. I often wished every doctor who prescribes had to try it first.
Good luck.
Regards

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Re: Beyond Avonex and Valtrex

Post by Interrupted » Wed Feb 04, 2015 5:35 am

I take painkillers and anti-inflammatories all the time now. A little paracetamol or brufen isn't going to touch much of the injection reaction, but tbh I don't care so much about that. That's one day. What ensues for the rest of the week is my big problem because I can't function/see/think/sleep/walk/respond well and i'm now so insanely uncomfortable all the time that I have no rest.

I mean between the constant headache and vision issues i'm concerned about whether there's inflammation being caused in my brain or behind my eyes. The nurse still hasn't gotten back to me but that's what I want to check with her really. I 'should' be injecting today, still haven't decided what to do. I want to persevere but I have no idea if i'm doing myself damage here.

Interesting that the Valtrex helped, did you have vision/light sensitivity problems with it too Scott?
28/07/10, 04/10/10, 16/11/10 - CCSVi Dopplers x3 ** 12/10/10 - Poland procedure. Symptoms worsened. No improvement.
13/02/12 - Wheldon ABX protocol for 1.5yrs. Fairly stable but no improvement. Unable to source alternate ABX needed.

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Re: Beyond Avonex and Valtrex

Post by Anonymoose » Wed Feb 04, 2015 9:04 am

Hi interrupted,

I hate to keep hammering on the same point so this will be my last annoying post regarding candida. Whilst candida was a problem for me, it was so easy to knock myself of kilter with supplements and valtrex. I wasn't even slightly aware of the problem. I should have been because that's just not how rrms is supposed to behave!! I had no obvious candida symptoms. Now that I've aggressively addressed the overgrowth, I don't react to diddly squat. The die off was really rough at the beginning (muscle soreness, fatigue, cravings, nerve pain, hangover feeling, headaches) but gradually lessened to nothing.

My anti-candida protocol:
Anti-candida diet (no grains, no caffeine, no fruits, only very low carb veggies, added strawberries and blueberries last two weeks)
200mg diflucan/day for 2 months
Caprylic acid
Xylitol
Probiotics (started at low count, ended at 180 billion/day)
Lactoferrin
Garlic
Coconut oil (in food and for oil pulling)
Undecylinic acid
Homocystex plus
Methyl b12
S acetyl glutathione
Dha/epa
Vitamin c
Mag glycinate

I started the anti-candida supplements one at a time and didn't add more until herxing stopped. Then I'd up the dose or add another. It's just been two months but I think the candida has been brought into submission. There were "ms" symptoms, namely a strange numbness in left hand and morning grogginess, that have gone away over the past month.

Sooo, I think given your antibiotic history and reaction to valtrex, you really might want to try harder to get rid of candida. It isn't all in your gut so probiotics aren't going to control it systemically. It's hard to get under control and based on other people's experiences, I'm guessing I'm fooling myself when I think I've got it under control in two months. I will bite my tongue on the topic from now on...

Be well :)

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Re: Beyond Avonex and Valtrex

Post by Scott1 » Wed Feb 04, 2015 12:56 pm

Hi Again,

The strength of the response says you have an underlying issue. This is going to be like the peeling an onion approach.
Anonymoose has a very valid argument. There are quite a few different anti-candida plans. To get rid of it, no matter how, will be a "weed and feed" plan. It lives on sugars and expels toxins into the blood stream rather than taking from the blood stream.
I did an extreme diet a few years before my initial MS diagnosis and perhaps that made a difference to me. My diet took six months and included nilstat. It worked although I was so deprived of sugar I had to eat little muffins made from potato flour or I would faint from lack of energy. You made need to deal with this before you can progress.
Valacyclovir is known to cause sensitivity in some people, particularly to sunlight. Fortunately I didn't have this problem. Add Carrot juice and see if it helps.

Regards

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Re: Beyond Avonex and Valtrex

Post by Interrupted » Thu Feb 05, 2015 5:09 pm

I bit the bullet and did week 4 Avonex last night, by 6am seriously wished I hadn't. Rolling around crying in agony with all encompassing head/eye pain again has forced me to say enough is enough. I'm by no means a headache wuss and quite used to bad migraines, but it really is on another level for some reason with me - assumedly a weak spot over existing brain/optic inflammation.
- Yes it seems the Avonex is just compounding the Valtrex light reaction. Which means I have at least another week now until this stuff is out of my system. I think i'm going to switch to straight Acyclovir for a bit to see if it eases it at all. I remember the ABX protocol did similar. I already do drink carrot juice, anti-viral and all that :)

I understand your feelings on candida, i've done the (purely food/probx) diet several times before with little resulting difference, but not using that much fluconazole regularly because, as usual, doctors won't prescribe. Not to say that there aren't ways of getting it.
Since Avonex is now out the window, I certainly should make more of an effort to tow the anti-candida line rather better!
28/07/10, 04/10/10, 16/11/10 - CCSVi Dopplers x3 ** 12/10/10 - Poland procedure. Symptoms worsened. No improvement.
13/02/12 - Wheldon ABX protocol for 1.5yrs. Fairly stable but no improvement. Unable to source alternate ABX needed.

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Re: Beyond Avonex and Valtrex

Post by Scott1 » Thu Feb 05, 2015 7:32 pm

Unless you've been there you just don't know what its like.

I feel for you and hope it settles. Going slowly might be quicker.
I'd try a fairly strict anti-candida diet (make sure you have some sort of guide book to help you) and avoid obvious common allergens (dairy, gluten, pulses). Check your house is free of common allergens (dander, dust, mould etc). Try to boost the production of ATP (Q10,L-Carnitine ) Maybe add a known neuroprotective supplement like N-acetyl-cysteine, stick with the valacyclovir. Add Curcumin, drink green tea etc.
How are your tonsils by the way?

Regards

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Re: Beyond Avonex and Valtrex

Post by Interrupted » Fri Feb 06, 2015 5:14 am

Thanks Scott - Ohh yes, sorry I forgot to to update on that. Well, I saw the ENT guy a few times, he scoped, did a scan etc, all fine couldn't see anything, he surmised that my problem was reflux at night but that I just didn't know it. Assumedly meaning GERD. So he put me on Omeprazole and copious swigging of Gaviscon and, a few weeks later, throat problems largely solved and I was discharged. Yet the post nasal drip issue has continued. Since starting Avonex sore throat and gland issues have returned somewhat - but I really have no idea where the focal point is. My tonsils aren't ucky but do feel a swollen and I have 'gravel' lymph nodes up in my neck. But tbh it is more of a sore throat, gland thing than feeling tonsil'y in nature. So who knows, if it keeps on i'll have to ask to see him again but for the larger part it's a lot better :)

I absolutely agree, it's the easiest thing in the world to assume we've experienced something the same as someone else, but in meeting others with autoimmune diseases, it is most definitely not so. I think the thing that I find interesting, is how we all have our own particular 'weak spots' that are the first to get riled up when inflammation starts. For some it's the liver, others brain, others gastro etc.

For sure, don't worry, I have many and various candida diet/supp books but I know the desired manifesto pretty thoroughly. I won't go at it lock and stock, I generally wean off bad foods first, then up the anti-C probX and then supplements. I'll do it gradually, and will have to go round every chemist in a twenty mile radius to try and get fluconazole in on the action this time. I definitely can't get enough to do 200mg/day for any period of time because I can't get hold of it (seriously, chemists will only sell you one and you get the Spanish Inquisition even then! haha) The capsules are 150mg and I can maybe only try and get a couple a week.
But yep you're absolutely right, I haven't kept up previous good works in that sphere so i'll tie it in with the elimination diet and attempt at going raw again.
Interesting you mention allergens because I try to remember to take an antihistamine every day in case of any issues there, but hay fever aside, we have just renovated the house top to bottom and it's fairly new anyway so think it's unlikely. Mind you, my dog is a husky fluffball so i'm probably allergic to him, but he's not going anywhere! :)
NAC, green tea, curcumin are a check, all already a part of the everyday roster.

Ordered the aciclovir (can't afford the Vatrex permanently and apparently exactly the same) this morning but noted the light sensitivity warning is the same on that. Ho-hum, I guess I just have to cope with it and stick low at 250mg/day. Now that this is the only issue I have with the Valtrex - I feel like i've battled through and overcome the other problems I was having with it so i'm not quitting when I know nasties are (theoretically at least) being evicted! It goes back, to the weak spot issue I suppose, I have light sensitivity problems anyway so guess it's just making it worse. Best get comfy in my Terminator specs!

Think i'm due an Avonex delivery soon, wish my neuro or the nurses would get back to me with advice/knowledge as to whether to cancel it or just try again in 6 months before it turns up. I'm very disappointed that it's caused me so many issues because my plan for years has been the Valtrex/Avonex combo but I guess I can only go with what my body will let me.
28/07/10, 04/10/10, 16/11/10 - CCSVi Dopplers x3 ** 12/10/10 - Poland procedure. Symptoms worsened. No improvement.
13/02/12 - Wheldon ABX protocol for 1.5yrs. Fairly stable but no improvement. Unable to source alternate ABX needed.

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Re: Beyond Avonex and Valtrex

Post by Scott1 » Fri Feb 06, 2015 2:11 pm

Pity we are on opposite sides of the world. I think we could have a good yak about symptoms across a kitchen table.
Don't forget the interferon is waking up your immune system and that may play a part in why the glands are up. I had the same thing going for quite a while till the Valtrex won the EBV war. You're right, a generic works just as well.
The post nasal drip is interesting. Is it all the time or only when you stimulate it? I run if I eat heated food. Do you mouth breathe? Are you a snorer? Do you have bad breath? If yes to those questions then you're pulling unfiltered air across your tonsils and that can cause infection.

There is a once a fortnight injection called Plegridy. I have no experience with it but its just interferon with a big molecule slapped on it so lasts longer. That maybe better or worse for you. I just don't know. It seems to have very similar study results to normal interferon. It might be an alternative but I haven't looked into it.
Regards

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Re: Beyond Avonex and Valtrex

Post by Interrupted » Sat Feb 07, 2015 9:54 am

Too right, still be there nattering two weeks later!

Haven't heard back from neuro or nurse (love feeling so well supported), so phoning Avonex first thing Monday and if nobody can give me any advice re: these insane headaches then it's definitely done with. Undeniably feel disappointed and/or a bit of a failure that it disagrees with me so badly.

Re: the nasal drip thing. It's more at night but on and off through the day. Being outside and exercise make it worse. No I don't think I mouth breathe too much, but I do seem to overnight as my nose bungs up. I don't snore, I thought I would do, but apparently not.
I suspect there's some inflames sinus continual issue going on, but they're certainly never painful.

Yeah we've been hearing more about Plegridy, be interesting to see how it's affecting people. I shall have a read into experiences with it tonight. Though, I guess, my instinct is suspicious being that it sounds like a double Avonex! haha

Are you still on Tecfidera?
28/07/10, 04/10/10, 16/11/10 - CCSVi Dopplers x3 ** 12/10/10 - Poland procedure. Symptoms worsened. No improvement.
13/02/12 - Wheldon ABX protocol for 1.5yrs. Fairly stable but no improvement. Unable to source alternate ABX needed.

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Re: Beyond Avonex and Valtrex

Post by Scott1 » Sat Feb 07, 2015 12:15 pm

You really sure your nose isn't blocked? Sounds like it to me. When I had similar problems, it was explained to me that we really breathe through one nostril at a time. The other shuts down for 15 minutes for a rest so the tissue doesn't get inflamed. In my case I had a deviated septum so only one nostril flowed properly. The other was almost permanently shut. The result was I overused the good one, it's tissues inflamed and it slammed shut. Hence, I mouth breathed and ended up with every "itis" to do with my head you could think of as the unfiltered air kept infecting my tonsils. Everything you say sounds very like what I had. The operations are horrid and maybe unnecessary in your case but I still wonder about those tonsils.
I came off the Tecfidera some time ago. Didn't like the way it made me feel. I also came off my beta blocker and I really didn't like it. Heart beat was just so slow.
All I take know is 750mg Q10, 2000mg Aceytl-L-Carnitine and N-Aceytl-Cysteine as the biggies plus 500mg Valacyclovir and a teaspoon of L-Arginine each day. A little curcumin, zinc and magnesium just for completeness I thought was worthwhile.

Don't forget I am in a different place to you. I did all the other stuff for 10 years first.

Generally I'm pretty good. The most fascinating thing is I had a monster attack with demyelination and completely avoided fatigue. I get patches of referred neuropathic pain down my arms which is quite debilitating until I stretch it out. Each event is easier to fix and I know I am getting better. It wasn't my expectation that the recovery would be a straight line event so I can get my head around the bad patches. I know have a physio and an osteo both saying my problem is physical and reminiscent of thoracic outlet syndrome. If I was clear of this issue I would be really well again. Time can't be hurried and I did do a bit of damage in Sept/Oct but I'll get out of think with a bit of bloody-minded attitude and a lot of Pilates.
Hope things pick up for you.
Regards

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Re: Beyond Avonex and Valtrex

Post by Interrupted » Wed Feb 11, 2015 4:56 am

I spoke to Biogen help re: Avonex and the lady said migraines are listed but there's no suggestion of what to do with regards them. However it is suggested if people have trouble with the flu symptoms, to titrate up. I thought, of course, good point! So I suggested it to one of the many MS nurses, but I don't think she understood. So I persisted trying to explain that i'd have to do a manual injection etc. She still thinks that they don't really do it and said...

... that the neuro' has suggested I go on Aubagio. I have a few days to think about it.

Meanwhile I appear to be sliding downhill (or relapsing, it's a word i'm loathe to use as it's not a big 'out of the blue' kinda thing, I just get worse) with my limbs, vision, vertigo, cognition, and have lost a bit of vision in my right eye. I have no idea if this particular point was down to the Avonex headaches. Either way it all feels a bit of a mess, i'm kinda confused as to what to do but am tempted to hit up some steroids just to see if I can get any relief from the worsening, or at least stop it.
I confess that I envy, somewhat, people who can discern cause and effect clearly, because it's almost impossible for me to do. Symptoms are a continual cyclical jumble.
Today would have been injection day, so the Avonex should be out of my system - thus I guess, unless i've got a winter bug or virus, what's left is how I actually am now.
28/07/10, 04/10/10, 16/11/10 - CCSVi Dopplers x3 ** 12/10/10 - Poland procedure. Symptoms worsened. No improvement.
13/02/12 - Wheldon ABX protocol for 1.5yrs. Fairly stable but no improvement. Unable to source alternate ABX needed.

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Re: Beyond Avonex and Valtrex

Post by Scott1 » Wed Feb 11, 2015 1:11 pm

Read this note first. That is a very heavy duty medication. http://www.accessdata.fda.gov/drugsatfd ... 000lbl.pdf

I'd show it to the doctor who suggested you take it and go through it in detail.

Yes, definitely hit the steroids. You're having an attack so stop it before you do some damage.
I've told you before to go to hospital. I think you need IV prednisolone and a damn good rest. Take a holiday then have a look.
The Avonex doesn't sound right for you at this time.
Can you remind me exactly what you're taking now?

Do not be bullied to make a decision. The question is a few days or what will happen? You are the patient but you deserve not to be pushed into any ultimatums.

Regards

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