1/2 way through my 2 week break from Copaxone
 

tomorrow will be 7 days off of copaxone. The MD gave me a 2 week break to see which symptoms are side effects from the meds, and which symptoms are simply MS, or other issues.

Day 1 through 3 I didnt notice a big change.

Day 3 to 5 I noticed I have not been night sweating. I have also noticed my eyes are not as dust bowl dry as they had been. My skin is clearing a bit, and the injection lumps have all but gone away. Still have fat dents from the drug, but I am told that is a forever thing.

I must say, I had this long list of complaints about Copaxone, and expected this trial to have me clicking them off with rapid fire pace. I am noticing the things that are being relieved by the lack of copaxone are a short list. I am only half way through this, and since I have past the wash out week, I should really notice this week, what was copaxone related, and what still hangs around even without copaoxne to blame it on.

The husband is doing the "told you so" dance, and telling me he thinks the MD will pop me right back on Copaxone. I told him I am just going to enjoy the rest of my time off, and we will judge when judgement day arrives.

so far, I am getting some relief from some things, but not as many things as I had hoped for. maybe this whole MS thing is bigger than I gave it credit for.

It'll be interesting to see how you fare at the end of this time period...I really, really hate this disease...
keep us up to date...:hug:

I havent taken any C since my double vision started at the end of June. (would you want to be poking yourself with needles when seeing double?)

I did do one shot on wednesday, but it hurt really bad, and so I decided to hold off on taking any more for a bit. I've got four months worth in my fridge, so the next time I get a call for a new shipment, I'm telling them no more. I dont care if I lose out on the co-pay that Shared Solutions pays for. I'm not sure I'm going to be taking any more C once I finish off the four month backlog.

Since I stopped, I noticed that my eyes arent as dry as they were, and I stopped having bizzaro dreams for a bit. (had a few weird dreams the past few days, but I'm guessing that's the solumedrol I had last week)

I'm probably going to start back up on the C pretty soon, now that I've seen a little improvement on my diplopia. I'm going to talk to my neuro about the C at the end of the month. I think I'm going to finish off my backlog of shots, and then try for something else (LDN!!!) I've not seen a change in the number of exacerbations since I started the C in 2007. The diplopia that I'm having now is the biggest exacerbation that I've had since the ON that I had in 2006 that was really my first clue that I had MS.

I got to talk to my regular doctor on the phone friday, and I asked him if he was ever going to let me try the LDN, and he didnt say anything right away. He wants to talk to my neuro about it. My neuro told me that if I could find a doctor willing to Rx it to me, that I could go ahead and take it. Hopefully the neuro remembers that he said that and will tell my regular doctor that.

I have to make an appointment with my regular doctor (who I love, because he seems to understand MS a bit better. His dad has it) for a few weeks from now, so that I can try to convince him to let me do the LDN.

I'm just sick of stabbing myself with the C all the time. I also dont like the dry eyes I get with it.

I would have thought the benefits still outweigh the side effects if we're to believe all that is said of these jabs.
you're a braver one than me (even though I almost didn't inject last night. couldn't face it).
stay positive. :hug:

I dont know about bravery. I do know I have been having some nasty side effects, and I was concerned that it was from the copaxone. I have become extremely exhausted because I havent been sleeping at night, due to the heat spikes, and the night sweats. I wake drenched in sweat, and roasting. I have bizarre dreams, and you can only go so long with no rest before it wears you razor thin. My eyes have become so dry the eye surgeon put plugs in my tear ducts to prevent what moisture is there, from escaping. my skin is blotchy, rashy, and psorasis has reared its ugly head. I was running out of places to shoot. between the lumps, and the fat destruction, I was having to shoot between lumps. my heart races, and my anxiety was on an all time high. many of these things are listed as side effects from the copaxone.

lack of sleep, or rest will drag you down quickly. now that I have slept for a few days, with pleasant dreams, instead of weird, far out things, I have restored my cup of energy. I think that in itself has been so valueable. I havent had any night sweats in days, or night heat events. I was reaching a point that I was convinced that my body was screaming at me that I had reached my copaxone limit, and get off it. Now that I have been off it a week, and have gotten some sleep, I am getting a more level headed view of what is going on. I am keeping a good journal

I had this huge laundry list of side effect complaints, but now that I am off of the stuff, I find its only relieve a few of my big list items. Sleep is HUGE! dry eyes have made my world miserable. my wonky vision was troubling. was it dry eyes? side effects? optic nueritis? or side effects from another med? I have found good relief without the copaxone. I can actually wake up and blink at night. So, my list of like 20 or so complaints, led me to want to take a break. I am finding only 4 or 5 things being fixed by stopping the Copaxone. While they are big things, its not the huge pile up I expected.

I still have another week to go. Week one was about allowing the copaxone to wash out of my system, and get back to baseline, and this week is about seeing what other symptoms now correct themselves without the copaxone. The DH is convinced that I was going to magically find myself cured of all of the weirdness to just stop the C. I guess I was. Either way, this next week will give me a truer picture of what is going on. Then IF I go back to copaxone, I could see what symptoms return with the return of the drugs.

Sleep..blessed sleep. refreshing, uninterupted, dry sleep. that has been blessed. I needed that more than anything else. lets see what this week brings.

If it keeps you from sleeping, that's a biggie. Can you take something to help you sleep if going back on the C? I also had very dry eyes while on it and had to use drops several tiimes day. I never put the two together until now. :confused: I also had trouble sleeping while on it, but not to the degree you are.

Oh crap.

well if you put it like that, you've probably done the right thing trialing a break. with all of that, i'm not sure if i could push that needle in either.
on the other hand, if only a few things improve, maybe its the C keeping it at bay.
i wish we knew more...

Well last night standing up to cook dinner, my feet started burning. I havent had that happen in years. I am tight and spastic today. I am thinking that I may have made a mistake. maybe I just over did it, and my brain is working overtime.

maybe i will just quit my break and pick up the needles. I can take stuff for sleep, but it makes me too sleepy, and I am groggy for hours in the AM. I can keep taking drops for dry eyes, but it got old. I normally have dry eyes, but the C pushed me over the edge. I am hoping if I rest this day, my feet will stop burning. crap crap crap.

:( There just isn't any easy answers is there, Dejibo :hug:

I am using an ointment in my eyes at night. I do the baby shampoo thing in the shower, and I am using drops during the day. I also have plugs in my ducts to prevent moisture from getting away.

My feet have stopped burning, but I have made it a point to get off them today. I have pushed myself this past week, and think I need to be kinder to myself.

Thanks for all the support.

Dej,
What other DMD could you use? I hate the fact that you have so many side effects on C...
take care, and keep that journal up to date for your neuro visit...:hug:

the relief of some of your sx's are big.
sleep is so important. it really affects your life.

i'd give it the whole 2 wks and see what you think.

I failed off of Beta due to a severe increase in liver enzymes. The MD said he "may" be willing to look at Avonex for me, but doubted I would survive on it, since my liver was so unhappy on Beta.

The C is not making me happy, but the side effects I guess can be survived.

I cant take LDN because of the narcotics I am on.

Rebif is an interferon, and the liver enzyme issues would stop me from getting it.

The only one left would be Tysabri. I would require a port since I have horrific access, and wouldnt survive the poking.

I am going to try to just take the next few days a bit easier than I have been. I need to be kinder to myself. I get one more week off of this med, and then we will have to decide if the side effects outweigh the benefits, or if the side effects are tolerable enough to keep going.

I HATE THIS FREAKING DISEASE! :mad: