Treatment , medical questions and symptoms

[Sparkysarah]

Hi everyone

Thankyou all for your kind messages of support. I have felt overwhelmed by the kindness I have received from friends, family and all of you.

I am waiting for a hospital appointment to discuss treament and know this is a decision I will have to make for myself. I have had a quick look at previous posts about DMD's and am going round in circles so wondered what your thoughts and experiences are.

My iniital feelings were that the fewer jabs the better..but then decided that Avonex did not appeal as it was a big injection. So then looked at Rebif but worried about Rebif if it causes depression

I  had depression 10 years ago when my son was diagnosed with autism, my brother-in-law was killed in a motor bike accident iin South Africa and I had a benign breast lump removed all within a few months of each other. I was on anti-depressants for about 18 months and vowed I would not go on them again.

My Gp has just put me on 20MG Amitriptylin which is an anti-depressant but this is for nerve pain and to help sleep (as I am not depressed now) but I do not want to stay on this for a long time and I am not sure it is helping.

My current relapse symptoms are worst at night time when i wake up with electrical tingling and pins and needles down left leg and arm. I also feel some neuralgia in my face and pins and needles in my head. My consultant also suggested Gabapentin 100mgs twice daily increasing if necessary up to 300 mgs but I am not sure what this is for and I am not on this yet. My nerve pain is not under control at present and I am sleeping badly. I have just finished the steroids (hurragh) which I took in the morning and wondered if they would interfere with my sleep but guess I will find out now I have finished if sleep improves.  

So this brings me to Betaferon which is every other day injecting but possible side effects. What are anyone's personal experiences to skin reactions and flu symptoms.

FInally Copaxone looks as if it has the fewest side effects, it is premixed but is every day which I had hoped to avoid. I guess you just get used to it and several of you seem to use it. I have sensitive skin. Side effects mention lipoatrophy....what is this?

My consultant said I have severe relapsing/remitting MS as I have had three significant relapses in 6 months. I am currently so exhausted..is it best just to rest up and give in which is what my body is telling me but how long will this go on for..I am in my third week now.

Think there are some questions for Quix here but very interested to hear from anyone who wants to share their experiences..e.g. if you started on one treatment and then changed if it did not agree with you.

Cheerio for now

love Sarah x

[Quixotic1]

Betaseron carries the same side effects as any of the Interferons - and since it is the highest dose (per week) some say the sides effects are more likely.

The Avonex injection is not that big and certainly not that painful.  The little needle slides through like butter with a little sting with the push.  I really didn't mind it.

I am off of it first because of the cost and second because of the realization that it was making my depression (chronic anyway) worse.  When I stopped the med I saw the change in mood.

It all comes down to choosing which "possible" side effects and which dosing schedule you want.  I would say don't be afraid of the intramuscular injection.  I have surprised at how quickly people became quite accustomed to it.

Personally I fear welting and itching more than I do depression so Copaxone wasn't even on my short list.

Quix

[jensequitur]

I can answer the question about lipoatrophy.  At first I thought this would work out well - how could getting rid of fat be bad?  But now everywhere I inject on a regular basis has a dimple.  This looks especially strange at my stomach - I have two dimples, one on each side, right below my belly button.  I also have a dimple on each hip.  This is a lumpy sort of dimple - the cellulite really shows in these areas.

So I guess lipoatrophy is exactly what it sounds like - it kills fat cells.

[Ginosmommy]

I may be wrong here, but I believe all the interferon's can cause depression - the only DMD that does not is the copaxone. And as far as taking it everyday, you will notice you do it out of survival and it becomes second nature.

I chose to be on Betaseron, my presription plan does not carry that but has Extavia which is the same thing. I chose it for the reasoning that it does not need to be refrigerated and you mix it yourself, they come in 15 pre-packaged trays - each tray provides everything you need for the shot. When you have a three year old in the house the more protection of the sealed packages is something I liked. Plus I would forget to take it out of the fridge to get a pre-filled syringe to room temp - I would be giving myself shots at midnight!

I also read in my many searches that higher doses closer together are preffered methods for early onset of MS which my Neuro tended to agree with. When asked which DMD she would chose she said Avonex but the intermuscular injection really turned me off even if it is once a week.

I have been on my shots for almost two weeks and they started me on the titration, where I take a quarter does for two weeks - then 1/2 dose for two weeks and so on until I am on the full does. I already take 800mg twice daily for arthritis but others have said to take something to waive off the flu like symptoms. The only issues I have had so far are the welts from where the injection was and so far on here everyone said they are just a reaction from my body adjusting to the meds.

I researched all the meds, my neuro even gave me books on all of them so I could read about each one. I did research on the web and asked on here when I finally found the site! It really is about which one you prefer and whether you want to deal with chance of depression, flu like symptoms, blood tests or whatever else the DMD's might throw at you - just remember not everyone is going to experience those symptoms! Good luck  MeLissa

[essdipity]

Hi, Sarah. I know this part of the journey can be confusing and difficult, so you need to take it one step at a time and just hang in there. Everyone's experiences with the meds are different.

Gabapentin is for neuropathic pain. The dose your doctor suggested is quite low, considering that the max per day is something like 3600. It's important to build up slowly to an effective dose, and not to give up too soon on this or other meds. We have many members who take Gabapentin with great success, and others who have not done well. Lyrica is an alternative to Gabapentin that many are pleased with.

Amitriptyline is an older anti-depressant that's often used by MS patients, to assist with sleep and to help with pain management, as you mention. The dosage for this is a lot lower than if it were being prescribed for depression. Don't be scared off by the original purpose of the med--that's kind of irrelevant now. It seems that Amitriptyline together with Gabapentin or Lyrica adds up to more pain relief than would be expected.

As to the DMDs, you already know that this is such an individual fit. There is no one right answer, and they're all about equal in effectiveness. Since you're asking for experiences, I'll say that for myself, I considered the facts carefully, and came up with 4 good reasons to choose Copaxone. All well and good, but it turned out that I'm highly allergic to it! So, on to plan B. I chose Avonex next, and have done well on it, in terms of both disease progression and side effects management. Nothing is 100%, but I really can't complain.

Keep in mind that if what you choose doesn't work for some reason, you can always change it. Nothing is written in stone. I do understand your reluctance to take some of these meds, but you will find that you need them. You absolutely must sleep, and you must get some pain relief in order to function. So to me, these factors win out over med aversion.  :-)

I hope you've taken a look at our Health Pages. They contain lots of good info about pain, medications, and a great deal more.  Listen to your body and rest. Not doing that will make things much worse, as so many of us have found out the hard way.

So glad you've found a home here. We're always available for questions and support.

ess