Adverse Reaction to Amantidine
 

I started taking Amantidine for fatigue and narcoleptic-type sleepiness five days ago. After spending the past days with increasing symptoms (dizziness, spasms, pain, trembling & difficulty swallowing without choking), this morning I called the MS clinic; as I am now unable to move my neck without severe pain or swallow without difficulty and pain.
The neck and upper back muscles have been in full spasm all day and it hurts to even swallow saliva.
In short, the body is a spastic, vibrating mess.

My neuro said to discontinue it and to wait for a couple of days to see if things improve as the drug clears the system. I’m hoping that it is the drug that has been causing these symptoms and not a flare.

I thought that once this stupid disease went from RRMS to SPMS that the flares would stop and that things might just get progressively worse. This round has me concerned though because it has reminded me how quickly things can deteriorate.

Haven’t been able to read or post because of blurred vision and the trembling but those have been less severe in the last couple of hours.
Thank goodness for Word, spell check, copy and paste :)

Miss you all. Will catch up eventually.

With love, Erika

Aw, Erika, I am so sorry. Things just don't seem to be going well,
at all, for you. Darn it.:( Is someone with you? I hate for you to
be alone. Is Doggie there? Should you go to the hospital?

Praying for you. Please Dear Lord, give her the strength to be well.

Thanks Sally,

Yes, I'm home alone...with doggie :).
He was at the trainers but got into a fight with another dog (his best friend) on Saturday, so he has been home since then for nursing of a puncture on the top of his head.
He'll go back out there on Wednesday once it heals up a little more. I just can't walk him or exercise him with the body like this, but for now, we make a good pair :winky:

My friend is checking in on us and is only a few minutes away if we need help and can take me to the hospital if need be. I'm sure that all will be OK as long as I can continue to drink water and stay hydrated, so I'm doing that.

At least emotionally I'm doing well (still cantankerous)...this is more of a body thing, and it just needs some time to get things sorted out.
Tomorrow is a new day, as they say.

Thanks again for the concern, the prayers and for being a friend :hug::hug:

With love, Erika

Seems that when it rains it pours.....:rolleyes:. You've had your fair share of set-backs and it's time for some less challenging days for you. I hope the break from the meds helps. It's so frustrating when the things that are supposed to help us make us worse. :mad:

So true Kitty,

But try we must...or we will never know if an opportunity to do, feel and function better has been missed.

Thankfully the trembling has continued to decrease through the night and vision clarity is also returning. So in all likelihood the recent symptoms were due to a drug reaction.

Swallowing difficulty, swollen and stiff neck are still present but since the above symptoms are improving, I really think that these and the others will settle down as well in time.

The body finally feels like it can sleep, so that's the plan for the next day or two. Haven't had much sleep in the last 4 or 5 and am looking forward to getting some.

Much love,
Erika

Erika,

You have to be on an upswing now with all you've been through! :hug: Thank goodness you and the doctor recognized that it might be a drug interaction. I hope you'll get some rest and a good meal and feel even better tomorrow. :hug:

Please make sure the doctor has eliminated the possibility of meningitis. The stiff neck and difficulty swallowing are concerning.

Yes, DD had a bug that turned into "M", so it is a possibility. Are
you feverish, nauseous?:hug:

Oh Ericka...prayers for you and a special blessing for you as you continue to try to heal...

Our pals bring up a serious concern...you might want to call about making sure it isn't meningitis. Cover all bases...

Keep us up to date between sleeping:hug::hug:

Erica, adding my voice to the chorus of well wishes.

Your situation sounds truly awful. I am hoping it is brief.

ANN

Thanks so much for all of your well wishes and concern.

I too thought about meningitis, but there is no fever, unusually severe headache or nausea, so I think that it is just spasticity and inflammation. Will mention it to the neuro when I talk with him later today though.

Things have been improving slowly so I'm just resting, being kind to the body and letting time and the body do their thing.

As they say, patience is a virtue...so reminding myself on the importance of being that sort of virtuous when the 'story lines' and crankiness arise :D.

Much love, Erika

Good job of taking care of yourself, Ericka...hope the sxs fade away and you feel better soon:hug:

Yes, I very happy to say that things are surely feeling better gradually, but I'm taking no chances... so will be laying low for the next few days.
This last go round has put a bit of a scare into me.

Hope that everyone is doing well and am looking forward to catching up, but the vision is not quite right and am avoiding as much strain as possible.

With love, Erika

With the amantadine out of my system and with things feeling better, I tried the Lyrica for pain. Also a no go for this body I'm afraid. After 3 doses of the stuff my fingers and toes were like little sausages and muscle pain had increased rather than decreased. Also had increased dizziness and blurred vision so I've scratched that med off the list of possibilities as well.

I'll have another consult with the MS neuro on the 20th of this month so until then, I'm going to stick with meditation, stretching, Baclofen for spasticity and Ibuprofen for the pain and inflammation...and time off from work. Although my guts don't like the Ibuprofen it is far easier to deal with those side effect symptoms than with those created by the Lyrica.

It is frustrating to be back where I started; as I am still dealing with pain, spasticity and narcoleptic-type fatigue (almost face planted into my bowl of soup yesterday), but it is sure better than what I was experiencing while on these drugs.

"Feeling better" is relative...the devil that you know is better than the one that you don't :D.

With love, Erika

Erika, amazingly I had pretty much the same symptoms when taking Amantadine. But by the time I took it, I had reacted to lots of drugs. And so was not surprised, and quit after a few days. Later, I thought that my reaction was because I have Porphyria (after I found out what Porph was and was ultimately diagnosed with it). I was very spastic, shaky, had eye trouble.
I also reacted severely to one Lyrica pill, given when recovering from Shingles, which are indeed as painful as childbirth--amazing! I was still on a walker, as my Shingles had been from hip to toe on the left. I felt I could not breathe well on Shingles; it felt like the partial bulbar paralysis I'd had many years before, when I was not dx'd with anything. It did stop the pain dead in its tracks but was threatening to stop ME.

Right now I'm depressed about my sensitivities because I even more alone, as I can't go to church (where most social life is) due to the toxins added to the office and the carpet.
They could have used steam clean on the carpet but wouldn't waste the pennies extra, so I can say they wouldn't waste even pennies on me, and I will not go back, as this has happened 3 times in the years I've been going there. Sensitivities are life changing.

Aw Mariel,

You are so right about the sensitivity thing. Thankfully, mine seems limited to medications mostly. Chemicals in carpets and buildings, air pollution and things like that don't bother me any more than anyone else, thankfully.

How sad that the church went with a toxic substance to clean the carpets, when there was an alternative.

Maybe you could start a small prayer or Bible study group at your house, where you have control of the environment?

My step mom does something like that with 5 other ladies. They go to each others' houses on a weekly basis, socialize a bit, do Bible study and pray together.

With love, Erika

Erika, I'm going to another church, where there is no rug and no spray. I may be able to attend a group there to make some acquaintances. So over the worst part of that. It's not the first time. It's been my life, fleeing triggers. I am grateful there is some place I can go to church which IS OK. But I remember a life lived as a fugitive.

My MS neuro was supposed to send in a script for Provigil, as well as something else for pain to my pharmacy last Thursday but didn't and also didn't on Friday.
I know that he's super busy and that I'm just one of his many patients, but I was really hoping that he'd come through.

The narcoleptic fatigue thing is still going on, as is the neuropathic pain...and I'd like to get back to work. Month end is coming for the clinic/office, which needs my attention, so I've started in on it this weekend because it takes me so much longer to do when I am having symptoms like this. Talk about moving slow. Its been like pulling teeth this time around.

What do you folks with neuropathy take for pain?

With love, Erika

Well I managed to get my month end stuff done, but what usually takes me a day or so, took 3 days because I had to recheck everything, do some of it over, and the errands kept getting put off because the body was either not up to going out or driving. Eventually a friend helped me to do them by driving me around and doing some of it herself.

If things don't improve, I'll be hiring an assistant because although my friend has offered to help anytime, it appears that this may become a permanent issue, and I just can't ask her to do business stuff on a regular basis.
She is a friend and already has done so much...but there comes a point when one has to admit that a more permanent solution must be found.

I'm at that point now because this past month there have been too many times that I needed help or just didn't get things done because of Sxs interfering with plans, yet I still cling to the hope that this is not the beginning of my becoming permanently disabled.
I'm just not mentally ready for that :(.

I made an appointment to see my PCP today, as I haven't heard from or been able to get hold of my MS neuro, and I simply have to do something about the sleep attacks and the pain. Both have gotten worse this past week and I've also lost another 5 pounds over the last couple of weeks.

I'm eating enough and calorie consumption has not changed; and most food is taken in blended form because the digestion is still affected by the autonomic neuropathy. I'm thinking that the pain and decrease in physical exercise because of it, is the reason for the weight loss. I've lost some of the muscle bulk in my legs and the torso now looks like a skeleton with skin on it.

I haven't weighed 110 lbs since I was galloping race horses at the track when I was in my 20s...and that was over 30 years ago. The body was fit back then, now it is just skinny and getting progressively weaker.

Willy the dog got confused the other night and came at me snarling while I was gimping down the hall in the dark on my way back from the bathroom. He thought that I was an intruder because he hasn't gotten used to me sometimes dragging a leg yet.
Poor guy, he was totally embarrassed and needed some reassuring snuggle time in my bed along with some treats to get over it.

Come on PCP...pull something impressive and effective out of your little black bag today. Both Willy and I really need your help now, more than ever.

With love, Erika

sending good thoughts your way……...

I'm back from the PCP.

He hasn't seen me for a couple of months and after hearing me out, he leaned forward in his chair and said "I'm concerned. Along with what you've described, you've lost a lot of weight, and don't look well".
That immediately made me concerned too.

He wants me to try a low dose (30mg) of Cymbalta over the next couple of weeks to see if it will reduce the neuropathic pain without adverse side effects. He said that it may take some trial and error with some different meds to get some of the symptoms under control, and that because I've had several adverse reactions to medications over the years, especially recently, he's wanting to proceed very carefully and keep an eye on my liver function as well as any side effects.

He checked the body over, frowning at the redness of my hands and near purple color of my finger joints, then affirmed that my left thumb is subluxating. He asked if I remember dislocating it. I don't, but I may have done so and not noticed because of the numbness in that area...probably in my sleep if I did; as I have awoken with joint sprains in the past (ankle and wrists).

I asked him to check a swelling on my back near the spine that has appeared, and continued to grow over the past couple of months. It is now the size of half a walnut. He had removed a similar sized sebaceous cyst that was irritating the nerves in that area this past spring, and I just thought that it was a return of that.

He disagreed and said that this one is not confined to the skin, is situated over the spine and moves with it; and so does not appear to be either a sebaceous cyst or a lipoma :(.
I can't get a good look at it because it is in the middle of my back, so can only feel it with the fingers of the hand that can reach it.
He has ordered a CT and biopsy, with possible surgery to follow for next week.

First things first though.
I'd appreciate you sharing your experiences with Cymbalta, as he wants me to start on it today.

He said that it could increase the sleepiness, dizziness and weakness, but didn't want to prescribe anything to treat those along with it, before knowing if I will react poorly to it.
He said that he knows that I'm not depressed, although it is also used for that, but is hoping that it will help with the neuropathic and possibly the hand joint pain as well. He thinks that the body is exhausted from the pain and that may be why I'm having the narcoleptic episodes.

Thanks peeps.

With love, Erika

Gee Erika, your PCP sounds wonderful. I'm so glad that you had a
productive session. Now, lets see if he can come up with something
that will truly help you.:hug:

Never tried Cymbalta , but did try Welbutrin, which is an AD much
like Cymbalta. I didn't like it. It did not help my depression,
but we are different and I wasn't having any pain, at the time.
Like the Doc said, it's trial and error. Let us know how it works
for you.

Praying for the best for you..:hug:

Erika, I've been taking Cymbalta (30 mg) for two months. It took me a couple of weeks to get up the courage to start taking it--reading the fine print scared the jeepers out of me. My doctor also prescribed it primarily for pain (MS and arthritis).

The first three or four days my stomach felt weaselly, and I was wicked sleepy. NOT so sleepy that I would have fallen asleep at the wheel, but I didn't drive the first few days, just in case. I was also troubled the first week or so by, ahem, a desperate need for lots of fiber.

I had myself all freaked out--so many of the possible side effects also go hand in hand with MS. So am I still wanting a nap every day because of the Cymbalta, or because I'm 63 and have MS? Is that little flutter an arrhythmia, or just anxiety? And so on.

I'm assuming I would have had any other side effects by now, but I don't know. There is a definite improvement in pain level, so at this point I'd say it's worth it.

Erika,

I have not been on Cymbalta. I did ask for it but was given nortriptyline instead. It works great as an add on for TN for me at 40 mg HS. The only SE was vivid dreams- in a good way- I looked forward to them! By the 3rd or 4th night they stopped.

As to the walnut size lump on your spine- I am glad there is a quick plan to biopsy that. I am thinking of you and praying that all will be well.

Best to you,
ANN :hug: