Medication question, not sure if anyone can answer...

[michelleric]

but thought I would ask.

I will be calling my neuro later to ask this question today, but thought I would throw it out here and see if anyone has had a similar experience and whether this is medication related or not.

I feel like my body pharmacy at times.  I don't even recall why I am on some of this stuff. (I know, not a good thing, but I tend to forgot why I was put on some of these meds.)

Anyway, I have been on Trileptal for over 2 years now, for I believe, my Trigeminal neuralgia and the other 3 neuralgias in my head/face/ear. (TN, Occiptal Neur., Glossopharengal Neur, and cant remember at the moment what the other is!)

My MS neuro sent me a "pain" neuro about 6 months ago, who has helped me TREMENDOUSLY with my pain.  At my last visit, about a 3 weeks ago, I asked him about eliminating some of my meds, since these injections are helping me pretty well. I get the injections every 3 months.

He said I could D/C Amitriptyline with no weaning off, and to start decreasing the Trileptal. I am almost done with the Trileptal, only taking 1/2 tab every other day. (started with 4 pills per day.)

Here is the problem:  for the last 2 days or so, my Left leg, AKA my "good" leg, has been stiff, getting stiffer.  Today, it is very painful and I can't bend my knee hardly at all.  My knee hurts as well, as most of my leg.  I can't walk well, and walking up/down stairs is excruciating.

So, I was thinking, yet another problem, not related to MS.  Then I realized about taking away 2 meds, and am wondering if that could be the problem.

I know no-one can really answer this, but want to know your thoughts "if" that is a possibility, or something any of you have experienced.

I will not be driving today, and apparently staying in my jammies, as the stairs are too difficult this morning to climb up again, perhaps it will ease up, just took some tylenol. Hope is does something.

My 8 year old made eggs for all this morning, and I am thankful we have buses for school.

Thanks,
Michelle

[michelleric]

Hi all,

Thanks for checking on me.  Well did call PCP and neuro.  I have appt with PCP Monday afternoon, but I did explain thoroughly why I was calling.

Neuro's NP told me it might be from D/C the Tripleptal, but more than likely it is my bronchitis/virus causing this. She said she would talk to the doc, and if I don't hear back today, than call after appt with PCP on Monday, if still pain in leg/knee.

I am still in awful awful pain.  Took a vicodin, went to the gym to try to stretch out my leg(s) in the water, than sat in the hot tub for some time. (I know the heat is bad for me, but at the moment the leg is worse than the heat :(  No improvement yet.  I am to work tomorrow, against neuros advice.  My job is ridiculous already.  I probably wont be able to go, again.  I am so unreliable now.  In my head I know I must quit my job, but my heart tells me differently for many reasons.

Thanks for checking in on me all, you are all the best.  Hugs to everyone of you...what a wonderful place.

Michelle

[twopack]

How are things today Michelle?

Mary

[essdipity]

Yes, Michelle, I totally understand how sick and tired you are of doctors and meds. Totally!! (But that's for another post.)

Right now you really do need to rule out a clot. Put that first, please, and let us know.

ess

[Lulu54]

michelle - did you call the taxi service and run to the doctor's?  Let us know an update.
-L

[twopack]

I don't know how the swelling idea got in my head -- maybe since you couldn't bend it?  Oh well, doesn't matter cause you can have a clot with NO symptoms.

As soon as I hit the 'Post Comment' icon I remembered you have mentioneded before that you take Coumadin.  I thought of posting again immediately to say that taking Coumadin is NO guarantee against clot formation.  Actually, it's a sign that there's something in your history that puts you at increased risk.  With what you just said.......

TYLENOL IS NOT NOT NOT LIKELY TO HELP.  GET THIS CHECKED OUT.  CALL BEFORE THE OFFICE LUNCH BREAK!  (oh it's too late for that)  CALL BEFORE THE KIDS ARE ON THE BUS HOME.

I apologize for using so many caps but I'm more concerned than sweet right now.

Mary

[michelleric]

Hi all,

Thanks for your responses.

Red, Yes, I am off 2 of my meds. Perhaps one at a time would have been better.

Mary, you are so sweet.  I haven't called neuro yet, still waiting to see if the tylenol helps?!  I know, of course, it isnt though...just really really tired of calling any type of doc anymore.

I don't think it is a blood clot, but of course how would I know?  I am on coumadin for a history of blood clots, and the weird thing is, my levels went CRAZY after the IVSM a few weeks back.  About 5 days ago, the coumadin clinic called me and told me to STOP the coumadin!  My I&R was 6.8!  (they try to keep me between 2-3.  I stopped coumadin for 2 days and am now on a very low dose, and am to get rechecked tomorrow. I hope this leg has nothing to do with that.

It is no swollen or red, just unbelievably stiff, most at the knee. I truly cant bend it more than 2 inches. I will give a call, that would be pretty bad if it was related to the coumadin/clot stuff.  Thanks for the heads up on that, SO appreciate that.  Hmm, I might just be calling you, although still in my flannel nightgown here with a nasty cough.  Not a pretty sight...:)

Bob,  I am on Zanaflex at night for the last 1 1/2 years.  That is a wonder drug for me.  Helps me sleep at night without any leg spasms.  I tried Baclofen in the past, but it never did anything for me.  Thanks for thinking of that though, I appreciate it.  How are you feeling with the IVSM?  I hope you are better, although for me it takes a good week to notice any change with the steroids.

Michelle

[COBOB]

It is possible that Trileptal might have been suppressing some spasticity in you leg.  Trileptal is an anti seizure medication that inhibits sodium channel function.  

Are you taking Zanaflex or Baclofen?  They are used to control spasticity resulting from spinal or supra-spinal muscle activation.  If not, you may benefit from replacing the higher cost Oxcarbazepine  with with Baclofen which is a GABA derived drug with a lower cost and is more specific to spasticity.

You should discuss this with your Neuro.  Many of the people on this forum use Baclofen.

Bob

[twopack]

Hi Michelle.  I'm glad you're going to be calling the doc today to check on this.  We can give good opinions around here but the prescribers really need to know about "odd" things.  (Oh yes, it's true, everything about us seems odd on some days.)

I'm a little surprised he didn't have you taper when going off the amitriptyline.  Maybe you were taking a small dose to boost the effectiveness of other drugs.  I'm sure you know amitriptyline (Evavil) is one of the antidepressants.  Normally it is tapered.  If you've been off it three weeks already, I doubt that's your problem.

As a side, amitriptyline is also sometimes prescribed for kids to help control bedwetting at night (causes retention).  I hope getting rid of it didn't have adverse bladder consequences :{

I guess it's possible you needed a slower taper off the Trileptal but my question is why only the one leg would be suffering withdraw problems.  It's one of the antiseizure drugs that can help relieve nerve pain so I suppose the pain COULD be from that but I'm not real convinced and it doesn't sound like you really are either.

I know controlling MS usually requires a large variety of Rx and OTC chemical based treatments.  Like you, I HATE taking them almost as much as I hated not having their help.  There are problems starting them and problems leaving them and way too often a problem doesn't appear until weeks after the change so it's hard for anyone to figure out what caused what.  

I've been investigating drug interactions a lot lately and there seems to be no end to how combinations of Thing #1 and Thing #2 can change how any number of other Things work -- and especially how it all changes with the addition or removal of any One Random Thing.  Drug.com has a helpful drug interaction checker for anyone interested (you enter your personal Rx and otc list, click, and are given the potential problems to be aware of).

I'd try to stick to changing one thing at a time in the future if at all possible, but that's just me.  Of course, if it's a combination of two or more Things that's a problem, this stradegy is going to backfire anyway (which may be why I'm still working on one personal drug theory for a year now!).

I'm going to change to caps now because I should have put this right up top.  AT THIS POINT, WITH JUST THE ONE STIFF AND SWOLLEN AND PAINFUL LEG, I'M MORE CONCERNED ABOUT THE POSSIBILITY OF A CLOT THAN I AM ABOUT MED WITHDRAW.  PLEASE ASK ABOUT THIS SPECIFICALLY EVEN IF THEY ACT LIKE YOU'RE CRAZY FOR ASKING.  I'm not working today but I can shoot up that familiar road if you need transportation to go get an untrasound done, or any other appointment they might want.  I am willing to transport jammied people with sore throats.  This is a public offer so NO excuses allowed.

Let us know what they say please.
Mary

[RedFlame]

If I understand correctly, you have already stopped some of your medications?

Sometimes what happens is that our medications are working so well that we think we don't need them anymore.  Then when we do go off them we are surprised to find that the old symptoms and maybe some new ones come back.  

maybe mention it to your doctor to see if you need to go back on them.  Hope that helps.

Red

[michelleric]

By the way, I "caught" my kids cold, and at the moment have terrible bronchitis, cant breathe well, and I believe strep throat might have set it.  yet, another appt with PCP when I can drive. Wonder if that could be hurting my leg as well?? Stupid question here.

My mother used to say, "if it weren't for doctor appts, I would have no where to go!" I am "sick" and tired of going to docs.

Michelle