Questions re: Medications?

[Wordsgood]

Hi everyone. This is a long post and I'm sorry for that. But I really do need advice so am providing as much info as I think of.

I will be seeing my treating neuro on Dec. 11 for the first time time since having my diagnosis confirmed in October, and have a couple of questions I'm hoping folks can offer advice about.

First some background. The diagnosing neuro strongly feels I've had MS for a minimum of 15 years and likely longer, based on several tests, my MRIs and the oral history I provided. I've heard from that neuro and the nurses of the treating neuro that they believe I have Relapsing and Remitting.

My most acute, current and long-standing symptoms are:

• Stiff and often excruciatingly painful upper back, neck and head pain (that often merges into migraines) - I believe it is spasticity as everything I've read here and else where seems to describe perfectly what I experience. Daily at a minimum of 5 out of 10 when I wake up, but always increases to a 7 or 8 within a few hours. Generally soars to a 10 at least a few times a week.
• Chronic fatigue and insomnia - both always at a 10 out of 10.
• Balance and vertigo problems, again the worse I feel, the worse both get.
• Occasional sudden muscle weakness in my limbs resulting in my dropping things and/or my legs giving out without warning.
• IBS, which involves a lot of constipation, abdominal pain, nausea and sometimes vomiting. Also have severe acid reflux. Each aggravates the other.
• Tremors, usually slight but sometimes worse if I've feeling all around rotten.

Also, I have never been able to tolerate anti-inflammatories well at all. The only one I could ever tolerate without too much indigestion, acid and nausea, was injectable Toradal, 30 mg. (Also known as Ketoralac.) The company that produced it was taken over recently and they stopped making the injectable form so I now have the pill for that is only 10 mg, but even at so little strength it is very hard on my stomach and causes a lot of acid.

Despite the general pre-appointment consensus that I have Relapse and Remitting, I am not so sure that I haven't already "graduated" to the next phase. The only recognized episodes I've had are two partial blindness periods of time due to optic neuritis. However, there may be other "unrecognized" episodes that my GP would never acknowledge, and my neuro doesn't yet know about. Plus, I really do think I have gone considerably downhill over the last decade or so.

So, having stated all this I will move onto my questions.

Questions - Group 1:

When it was thought I that I had Fibromyalgia, Gabapentin was prescribed. Aside from not helping, it was was super hard on my stomach and may or may not have resulted in numbness that started at my feet, then spread up to my thighs and stayed that way for 6 months, after going off it. (Thinking back, that could have been MS. Not sure if that would count as a "flare-up" even if it was MS?)

Tried Lyrica later, but after a couple days had to stop the side effects were so bad.

So, if you also have stomach/digestive issues, and have been prescribed something for muscle spasticity...what was/it? How did/do you find it settles with your stomach? And have you had any other serious side effects?

Questions - Group 2:

If she (neuro) decides it is Relapsing and Remitting and wants to put me on a DMD, what would you - if you have similar issues with your digestion and/or acid reflux - advise? As in what (if you have similar issues) have you used/are using, and how did/is your system handling it?

Any thoughts, advice or personal experience would be most appreciated.

[Camsue]

welcome Wordsgood

Hi..since the DMD's aren't 'ingested' and not absorbed using the gastric system, I don't think you'll have the same problem or additional ...
I have not had gastric issues, so maybe someone that has can give you an 'educated' answer.

Best of luck

[Wordsgood]

Thank you for such a quick reply, Camsue!

I was actually looking at the Gilenya thread earlier as it is apparently taken orally. Found that thread after posting this one.

Anyway, the thought of injections scares the stuffing out of me even though I did have to use injections occasionally for the anti-inflammatory I talked about. Do you happen to know much about Gilenya and how it reacts to folks with sensitive tummies?

[22cyclist]

They usually prescribe Baclofen for spactisity. If you have any stomach issues with it, you can take an anti-reflux medication with it. I have not heard of people having peptic problems with it though.

2. Copaxone is a good DMD to start with. It has no flu-like symptoms, no liver problems, no blood tests. It is a once per day shot, but the needle is very small and comes with an injector pen. It has some injection site reactions (red marks on legs/arms). The others have flu-like symptoms and in my opinion (I have taken them all) suck. I am now on Tysabri, and it is better, but I miss Copaxone. It just stopped working for me after several years.

[Wordsgood]

Thank you, Cyclist22!

I read about Baclofen elsewhere on the forum and am pleased to hear you haven't heard of others having issues with it.

Tiny needles for Capaxone? You mean like the kind diabetics use? If so, that's a huge relief! The ones I used to have to use for my Toradol were an inch long as they were intramuscular so the thought of needing something like everyday has been scaring the stuffing right out of me.

[22cyclist]

Thank you, Cyclist22!

I read about Baclofen elsewhere on the forum and am pleased to hear you haven't heard of others having issues with it.

Tiny needles for Capaxone? You mean like the kind diabetics use? If so, that's a huge relief! The ones I used to have to use for my Toradol were an inch long as they were intramuscular so the thought of needing something like everyday has been scaring the stuffing right out of me.

Yes, Copaxone is sub-q. A very tiny needle. The only needle that is intramuscular is Avonex. Copaxone you don't even feel the needle go in, but the medication does sting like a bee sting sometimes. Just be sure to let it warm up out of the refrigerator to room temp. You can also put ice or a warm compress on the area after the shot to ease the sting. The needle itself though you do not feel.

[Wordsgood]

Yes, Copaxone is sub-q. A very tiny needle. The only needle that is intramuscular is Avonex. Copaxone you don't even feel the needle go in, but the medication does sting like a bee sting sometimes. Just be sure to let it warm up out of the refrigerator to room temp. You can also put ice or a warm compress on the area after the shot to ease the sting. The needle itself though you do not feel.

MANY THANKS! You have just taken a huge load off my mind! Hope you don't mind hugs, because I'm sending you a BIG one right now!

[Wordsgood]

Thank you again for clarifying that. I will be avoiding Avonex if at all possible. A bee sting I can live with, but large needles not so much. Especially since I'm on the scrawny side and have trouble getting to and maintaining a healthy weight. Currently look bonier than my ancient cat!

[maev]

Did you have plaques on MRI?

[Wordsgood]

Update - Hopefully Good News!

Did you have plaques on MRI?

If you mean lesions, yes. So far they have found 20 and more enhanced scans are being done in a few weeks.

On the upside, I just found a message on my voicemail telling me that I have been pushed up on the waiting list so will see my neuro on Nov. 20th. From what the receptionist said, this is only a short appointment mostly I'm guessing, to reassure me they haven't forgotten me.

That's okay. Now that folks are actually talking to me, I feel quite a bit better about the wait times involved for determining my treatment. I won't hold my breath for my GP after 7 years of hitting a wall with him, but as long as I have someone on my care team willing to hear me out, I can live with that.

[annintexas]

Spasticity and tummy problems

For Wordsgood -- When I was having a lot of spastic problems, my neuro started me on Baclofen -- small dose and gradually increasing it. From the beginning I was nauseated, but I stuck with it for 3 months trying to get up to required dose. (good news is I lost 30 lbs <grin>

Neuro changed me to Klonipin/clonazapam. It controls spasms and restless leg syndrome. I take 2 mg. at night, and half a tablet if I begin to have spasms during the day. It takes about 20-25 min. to get relief.

I never see Klonipin listed for spasms, but it works for me and my neuro says that the amount I take is minimal. He usually prescribes more.

Neuro is head of a large MS Clinic and I have been seeing him for 16 years. I do have bladder and bowel issues and am lactose intolerent. Klonipin does not have any side effects for me. Hope you find some answers here. I've had MS more than 30 years.

[Wordsgood]

Thank you, Annitexas!

I've been on clonazepam for other issues before and it doesn't seem to bother me, except for feeling sleepy.

Baclofen..hmm, that does not sound encouraging. Still, if it were to work then I wouldn't need as many painkillers so maybe it would balance in the end, at least as far as my tummy is concerned.

You have my sympathies about the lactose intolerance. Milk has become my best friend in the last few years as it helps combat the acid. At least it feels like does. It was an acquired taste for me, but compared to Pepto Bismal it's a yummy.

30 years? You know, that sounds very scary until I remember I've probably had mine for 20 years or more and just didn't know.

Anyway, thank you all for your response.

I do hope all site members know how much it means to me that everyone has been so welcoming and helpful. It's made a very frightening time a whole lot easier to cope with.

Of course you have opened a can of worms by responding to my please because now I'm just gonna keep asking question...

Hugs and for everyone!