Please help!

[smilecc927]

I was diagnosed on Feb 28th with this crappy (nice word but really want to curse) disease! I started Copaxone mid April. I have been told that the meds were not going to "do away" with my symptoms and I would have a list of things to take for symptoms. I am extremely fatigued and walk with stiffness. I did a round of steroids right after getting diagnosed and felt better than I ever felt. Now I have been prescribed Provigil for the fatigue after Lexapro was not bringing me "up". I take my Provigil first thing in the morning and it gives me a headache that I suffer with most of the day (even when I eat with it). I get home from work and take a benedryl tablet cause I itch from my Copaxone injections. I am also suffering from a UTI and I take an antibiotics twice a day for that. I do my injections at night and take my Lexapro at night. I still feel helpless and don't know when I'll feel better. I call my neuro's office just about everyday and his receptionist is rude but he is great! I have stomach issues from my meds also so I feel nauseous and have diarhea most of the time. I am 30 yrs old with 3 yr old twins that need their mommy. My body aches I'm tired and just plain sick and tired of being sick and tired!!

[voodoo]

Well, one thing..

How about hydrocortisone cream or benadryl cream for the itching if it is localized? That takes one thing out of your internal cocktail. Benadryl always makes me foggy and sleepy the next day, regardless of the amount of sleep I get. When you are counter acting that with other meds - it could be not giving you the result you are looking for.

[Ihb7337]

Hey smile, try to keep that smile (somehow!!)

I'll start out by saying what you are going through sucks!! Now that I've gotten that happy thought out of the way, you are not alone, sister!! I too take Benadryl when I get itching attacks but mine seem to come out of nowhere and are not related to meds. I'm on another med, avonex, for now.......I'm having a hard time with side effects ( migraine, chills that could shake me out of the bed , aches, and generally feeling crappy for a day and a half!

Do our meds help with MS symptoms? According to my neuro, no, they only propose to "slow the disease down" but they are no cure for the disease. It's quite a dilemma we find ourselves in.

You inject every day with copaxone, right? And it's subq and not im, not that that means a whole hill of beans, just talking out loud....what do we do? Continue with these meds, that will not help with symptoms that we have and only maybe? Will slow the progression of the disease? Or do we look for alternate therapies that may be less insulting to our bodies? May or may not help? But the "may or may not help" deal is also a part of these very strong, and toxic meds?

Let's keep putting our heads together, offering each other support and take it from there. I'm a 55 y/o female, married, no kids, nine horses and five cats and hate living in Wisconsin ! I do try to get through most days with humor. Sometimes hard to find when you feel like........well I can't print that here but you know what I'm getting at....let's stay in touch

Can you in any way get someone just to help with your two bBiesm, just to give you a rest? Just a couple of hours here and there? It's ok for mom to take rest, in order to be functional and more connected with her babies. Doesn't mean you are not being a good, hands on all the time , mommy. Remember mommy, you've got this damned disease to deal with, in addition to being super mom. It's ok to ask for help with your kids!! God bless and lets put our heads together to try to get through this!!

[JerryD]

You have stated exactly the words I used about 2 years ago, when I was fed up with the whole thing and wanted to cash in. You are not alone !
I decided to use the web to educate myself . I found an 'integrative' doctor (MD) to add to my team of doctors. If you are dx'd with anything other than RRMSe , your doctor must be using Copaxone 'off-label' because all of the drugs DMD's that are out there are only FDA approved to treat relapsing forms of MS, not progressive forms.
There are a lot of ways to treat your symptoms, not only through prescription drugs.
I can only suggest that if you don't get what you need from your PCP and neurologist, you must find another guy to add to your team.
This site is full of great information. Good luck don't give up

[Temagami]

I used/use over the counter allergy relief: chlorpheniramine maleate to deal with the injection itch and it has a bonus effect of being anti-anxiety. I don´t think benadryl is a sustainable long term solution due to the sleep inducing effect.

I went dairy and gluten free and noticed substantial improvement in regards to reduced numbness within 4 days of ditching dairy.

[hunterd]

I tried everything under the sun for the itching. It did not subside until I switched from the auto injector to injecting manually. I couldn't believe the difference in the site reactions. They were gone!

if ever you feel desperate here is a number for the national suicide prevention hotline.1-800-273-8255

[woodstock]

I was dx at the beginning of July 2011 and started on Copaxone 3/31/12. At first, I had the usual blistering and somewhat painful reactions to Copaxone. Then, it went to itching after about 4-6 weeks.

Now that I'm into my third box of Copaxone, I'm finding that the reactions are getting to be less, I'm having occasional itching primarily on my arm sites (though not this week!), and overall it seems to be getting better.

At the beginning, I almost gave up. I'm glad I've persevered so far and hope that you will give it a try for a bit longer. I'd rather do the C than any of the other CRABS that have more significant or flu like side effects.

[Bob698]

Smile; It sounds like you're in the "building a tolerance" phase of your DMD. It sucks, some people have an easy time of it but many don't. I didn't have a fun time either, in my case it lasted for about 4 months but then it faded. I think I became Advil's number one customer while I was building my tolerance. BTW, I use Beta. Its not the same as your med but its close.
The DMD's are only supposed to slow progression. Believe it or not, that's huge compared to the alternative. I'm coming up on three years of injecting Beta with no signs of progression. I'll take that and smile while I put up with the injections. Beta hasn't "cured" any of my old symtoms but some of them have slackened a bit and not having to deal with new or worsening symtoms is more than worth it.

Some other posters mentioned itching. Its possible its from your medicine but in some cases it could be an MS symtom related to neuropathy. Your Dr. would have to make the call.
I found (for me) that Benedryl OTC gel tabs work great.

[smilecc927]

I was really having a "down in the dumps" day when I posted on here. Since that night I got a mean stomach bug and feel a little better. I take my daily cocktail of meds...Provigil for fatigue in the am, along with my daily vitamins and an extra vitamin D.

I tried the benedryl cream instead of adding another pill and that seems to help a little. Copaxone at night before bed along with my Lexapro. Thank you everyone. I really need to think about the people worse off than me.

[kewi1976]

Glad you are feeling a little better

Just wanted to say you are in my thought! Iam glad you got over that "bad day" we have the right to have those sometimes

Twins? I have those too and they can be a handfull, you are in my prayers.

Stay encouraged, and keep looking up

[MomtoMiracle]

Hang in there!

Smile,

I'm just now seeing your post, but wanted to echo that you're not alone and that you can always post here for support. You have a lot on your plate! I have two young kids, too, so trust me, I know!

Some things have have helped me for fatigue - Vit. D ( I saw that you're taking that), B12 vitamins, Acetyl-carnitine/lipoic acid (there are posts about this), staying hydrated. Also, MSers have more chance of thyroid problems, so it's important to get that checked (T3, T4, and TSH - not all docs check all three and they're treated differently).

There have been times when the natural stuff didn't do enough to keep me functioning ... as much as I ABSOLUTELY believe it's okay for Mom to take a nap, she's got to be able to feed the kids too. I can't take Provigil (tachycardia), but ironically, I can take Adderall. It helps immensely during those times.

God bless you, friend. Hang in there!!