MS symptoms. Or is it from the Plaquenil, Elavil? Arg!

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Ginny
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Date Joined Feb 2003
Total Posts : 5514
   Posted 11/6/2009 5:54 PM (GMT -7)   
Hey everyone, there are a lot of new "faces" on our board!  I'm sorry I've been away for so long.  Just needed a break to clear my head and "deal".  Lots of issues with my anxiety, depression, etc.  I'm getting weekly therapy and it's helping me more than I thought it would.
 
I started on Plaqunil at the beginning of September.  In October, I started to experience a lot of what looked like MS symptoms.  They're getting worse, and today I finally made an appointment with my primary. I see him on Tuesday.  While researching my symptoms I came across the possibility that they're not MS, but possibly a reaction to the Plaquenil. There is an incidence of "abnormal nerve conduction" with it.  I'm jerking and spasming constantly. It's horrible. I have a pile of other MS symptoms that don't seem to be Plaquenil side effects.  The other medication that might be causing all my problems is Elavil (Amitriptyline).  I've taken 20mg of it for years, but my psychiatrist has slowly been increasing it to help with my depression and sleep.  I'm at 50mg now.  The side effect that sometimes appears is "dysarthria(speech dificulties), and extrapyramidal reactions (movement). 
 
All of these symptoms started after beginning the Plaquenil, and raising the Elavil dose.  Coincidence? Hmmmmmm.
 
The tonic movements, muscle spasms, problems talking, lack of coordination, major cognitive imparement and sometimes trouble swallowing are some of the other symptoms I'm getting that are also MS symptoms.
 
Has anyone had this type of reaction with Plaquenil or Elavil?  I'd be happy to hear everyone's story.  It might help put the pieces together for me and stop the guesswork!
 
Thanks!
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in to be content. Phillipians 4:11-13
35 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety, PTSD. Prednisone, Imuran, Plaqunil, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6,
 Moderator for the Lupus and Fibromyalgia forums


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7020
   Posted 11/6/2009 7:19 PM (GMT -7)   
I tried Elavil for a short time in the early 80's -- turned out I was allergic or something, I got little red polka dots all over my body!

Been on Plaquenil since '02 with no side effects...
so I guess I'm not much help...

Hope they figure you out quickly!
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde


nasalady
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Date Joined Sep 2009
Total Posts : 1176
   Posted 11/6/2009 8:09 PM (GMT -7)   
Hi Ginny,

As you know, I'm having a lot of the same symptoms and I just started Plaquenil a month ago. However I don't really think that my symptoms are due to the Plaq because I had the same set more than a year ago (when I was on very few meds). So I'm scared it's really MS. Never tried Elavil myself.

Now my PCP is reporting me to the DMV for my vertigo and vision problems, so my license to drive will be yanked. Oh well, I suppose it's for the best. :(

((hugs))
JoAnn
Autoimmune hepatitis, Hashimoto's thyroiditis, lupus, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD.

Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Mirapex, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP


autoimmunediseasesgfliving.blogspot.com


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 11/6/2009 8:30 PM (GMT -7)   
Oh Ginny *hugs* I pray it's not MS on top of everything else! I've been on Plaq since 2004 with little to no side effects and I've never been on Elavil. I'm sorry I'm not much help, just wanted to offer my support and prayers! I pray it's just the meds and they can find another med for you to take. Hang in there sis, sending you hugs, luv and prayers!
Stacie
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Lupus, Sjogrens, Raynaud's, Hashimoto's and Celiac Disease
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Vitamin D-50,000 IU, Tramadol (as needed) and magic mouthwash (for mouth sores)


PattyLatty
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Date Joined Mar 2006
Total Posts : 2570
   Posted 11/7/2009 8:54 AM (GMT -7)   
Ginny, I hope you'll see a neurologist so that you can get all of these symptoms sorted out. Hang in there.
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

prednisone, plaquenil, leflunomide, neurontin, synthroid, triamterene, actonel, niaspan, tri-est, cymbalta, tricor, acifex


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 11/7/2009 10:54 AM (GMT -7)   
Thanks everyone for your experiences with these meds.  I'm having a better day today, but it's still early.  I'll see how the rest of the day goes.  I think an MRI will be first on the list of things to have done.
 
Have a nice weekend
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in to be content. Phillipians 4:11-13
35 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety, PTSD. Prednisone, Imuran, Plaqunil, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6,
 Moderator for the Lupus and Fibromyalgia forums


mom46
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Date Joined Dec 2004
Total Posts : 8198
   Posted 11/7/2009 12:21 PM (GMT -7)   
Ginny,
 I'm sorry to hear you are having all these symptoms and no answer. I agree with seeing a neurologist and having an MRI. I don't know if you remember awhile back when I was having the same symptoms as you are experiencing. They were running all kinds of tests on my for MS as well. I had a couple of spots on the brain and positive lumbar puncture but no reason for the symptoms.
  I never got an answer but the symptoms went away a few months later. 
  I hope you get some answers soon and treatment to help you feel better. Keep us updated and take care. You will be in my prayers.
                                                                             Love ya, Babs
 
Dx: Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Neuropathy,CAD
Meds:arava,prednisone,plavix,aspirin,protonix,,zanaflex,xanax,
mirapex,advair,foxamax,Vytorin,folicacid,lunesta,Tramadol
 
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.


lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 669
   Posted 11/7/2009 2:39 PM (GMT -7)   

Ginny - I really hope you can get this figured out soon - I'm one who gets weird reactions and is sensitive to all kinds of meds and other things, too.  I did have a couple symptoms when I started Plaquenil that I wondered about....weight gain, leg pain ....but they seemed to dissipate and were balanced, at least initially, by the positive effects.   I would question the Elavil also - since a higher dose could be the culprit.   I know how hard it is to sort these things out - I hope you have a doctor who listens to you - and you will soon have some answers. 

Care and blessings,

Lucy


diagnoses:  mono 1972; postviral CFS 1997; fibro 1998; UCTD & osteoporosis 2007; celiac 2009
meds: Plaquenil 400 mg, occasional low dose xanax for sleep aid, artificial tears w/ ointment at night, Advil/aspirin prn and lots of vitamins
 
 


crazykitty
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Date Joined Jul 2009
Total Posts : 4796
   Posted 11/7/2009 2:52 PM (GMT -7)   
Hi Ginny, I was wondering how you were doing? Sorry you are going through some
more rough times. Hope the doctors can find out what is going on and that you can find
some relief soon. Take Care.

Hugs

Robin
MCTD, Fibromyalgia, Raynauds, Osteoarthritis, Osteoporosis, Degenerative 
 Disc Disease, Hypertension, Migraines and Pseudothrombocytopenia MEDS: Methotrexate, Savella,Flexeril,Diltiazem, Boniva, Vitamins 


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3459
   Posted 11/9/2009 10:22 PM (GMT -7)   
Hey Ginny,
 
How are you?  What is happening with your symptoms?  Have you made an appointment to see that neuro?  Have you considered seeing a neuro that specializes in MS?   A lot of neuros are not all that familiar with MS.  You may want to call your local MS society. 
 
Anway, I was just thinking of you.  Love and prayers.
Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 11/10/2009 7:55 AM (GMT -7)   
Hi gals, I'm still having the symptoms but they're not as bad as they were last week. I have an appointment with my primary doctor this afternoon. I'll let you know what transpires!
 
Blessings!
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in to be content. Phillipians 4:11-13
35 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety, PTSD. Prednisone, Imuran, Plaqunil, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6,
 Moderator for the Lupus and Fibromyalgia forums


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 11/10/2009 9:23 PM (GMT -7)   
I saw my doctor today and he thought my symptoms were interesting and odd (that's me!).  He is wondering about the Elavil and has asked me to taper off it as quickly as I can.  We'll see if my symptoms disappear or not.  We're taking it one step at a time.
 
He is setting me up for an MRI. I usually get one every year to monitor everything from the stroke I had in '02.  But it's been 2 years since my last one. 
 
That's the update for now.  I"m dealing with some pretty heavy fatigue right now too.  That might be from the Elavil also. 
 
I'm goin' to bed!
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in to be content. Phillipians 4:11-13
35 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety, PTSD. Prednisone, Imuran, Plaqunil, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6,
 Moderator for the Lupus and Fibromyalgia forums


mom46
Veteran Member


Date Joined Dec 2004
Total Posts : 8198
   Posted 11/12/2009 7:42 PM (GMT -7)   
Ginny,
I hope this gets a lot better for you soon. Hopefully coming off the Elavil will stop the symptoms. You are in my thoughts and prayers.

Love, Babs

cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 11/12/2009 10:36 PM (GMT -7)   
Ginny I've had problems with Elavil and Zoloft which I'm allergic too. Those drugs are really hard for the liver and kidneys to process and my liver can't dealwith them. Instead, I take a small amount of Klonopin at night, which keeps me together and also takes care of spasm, restless legs, and nerve problems. It is also effective for antiseizure in some cases. It also strengthens my pain meds. I have a whole list of antiseizure and antidepressants I can't take. They are some ofthe worst meds to metabolize and cause alot of damage tothe liver. The plaq seems milder to me. I take only 100 I am supposed to take 200 I up it when I have problems.

Thyroid problems can cause lots of nerve damage, mental issues, anxiety and depression and hyperness, and trouble swallowing. Docs dont do the greatest in dxing it. Thank Goodnessmy rheumie tested my antithyroid antibodies, not just the thyroid function, and saw that I need treatment right away. With treatment, lots of the problems went away, thought they come back as my thyroid is dying. And also my fibro got alot better by seeing a bioidentical hormone OB gyn. She also did great testing of my thyroid and is much better than my endocrinologist, unfortunately. Sad but true. And I've been to six lately.

Anyhow, maybe get some thorough hormone testing done by a bioidentical homone ob gyn. They can also test vitamins. I don't usually go for this "health" stuff, but she tests for more stuff and does a much better job interpretting the tests than my endos. She pretty much handles my total endocrine mess, and I have real serious problems.

All the rest of my endos are men an just don't understand what its like to be a woman and how sensitive we are to small changes.
I hope you feel better soon and can get off the elavil. I know its hard and I'm rooting for you.
Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids


nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 11/13/2009 1:06 AM (GMT -7)   
Hi Ginny,

Quick update from my end....I don't know if this will be helpful to you or not, but as you know, I've been having a lot of the same symptoms that you have. I just saw my rheumy yesterday and we discussed my recent bout with "MS-type" symptoms. He told me that all of my symptoms are still explainable in terms of lupus. He (and my neurologist) seem(s) to think that I may have CNS lupus and this could cause all of my neurological issues. He looked at my recent MRI and said (quite accurately) that there were no screamingly obvious brain lesions. I had already looked at them and compared them with MRIs of MS patients at spinwarp.ucsd.edu/neuroweb/; I agree with his assessment.

It was reassuring for me to know that lupus is capable of causing these symptoms and that I don't necessarily have to have MS on top of everything else!!

Take care.....
JoAnn

aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 11/13/2009 11:00 AM (GMT -7)   
Hey Ginny! Hope you are feeling a bit better today! Sorry you are going through all this. Something happened the other day to me that was hilarious and it reminded me of somthing that happened to you but now I can 't remember what it was. LOL! Gotta love memory problems. If I remember I will share it cause I know you would get a good chuckle out of it!!!

Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 11/13/2009 1:54 PM (GMT -7)   
Hi JoAnne, yeah, my doctor mentioned CNS Lupus as well. I suppose that would be better to have than MS! LOL. I'm so glad to hear that this is your case. And to know absolutely that it isn't MS. You must be very relieved!

Amy, that's so funny! Was it one of my FB status updates? I've had a really weird couple of weeks with lots of stuff going on! When you remember, I want to know!

nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 11/15/2009 1:20 PM (GMT -7)   
Ginny said...
Hi JoAnne, yeah, my doctor mentioned CNS Lupus as well. I suppose that would be better to have than MS! LOL. I'm so glad to hear that this is your case. And to know absolutely that it isn't MS. You must be very relieved!


Hi Ginny,

Well, MS has still not been ruled out for me. :(

BUT....it seems less likely! :)

So yes, I'm happy about that....but I'm still waiting for a firm diagnosis. It seems like a lot of us are in diagnostic limbo these days!

Keep us posted on your own issues....take care!
JoAnn
Autoimmune hepatitis, Hashimoto's thyroiditis, lupus, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD.

Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Mirapex, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP


autoimmunediseasesgfliving.blogspot.com


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3459
   Posted 11/15/2009 3:40 PM (GMT -7)   
JoAnne,
 
I am very glad to hear that you may be zeroing in on a reason for these symptoms.  Hopefully MS can be ruled out and you can get some treatment that gets you back on track.  I am still bothered by you not having a drivers license!!!  I hope that can be reversed!
Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 11/15/2009 5:09 PM (GMT -7)   
I'm not doing so well this weekend. I've tapered from 50mg of Elavil down to 20mg and the jerking, spazzing, trembling, talking problems, cognitive issues, headaches, are all still here. Now I have all my Fibro symptoms flaring up because I'm on less Elavil . I'm not a happy camper.

I also think I have some hearing loss issues. It seems like the noise level of a group conversation is what I'm not picking up on. The high tones are okay, but middle and low tones I can't seem to get as well as I could before. I've been asking people to repeat themselves a lot. My hubby has mentioned it too. I am "known" in my family for having excellent hearing. Now I'm not so sure!! So that needs to be addressed as well.

If all this stuff turns out to be from my Lupus I'll be relieved and annoyed at the same time.

I'll keep you posted on how I'm doing,
G

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7020
   Posted 11/15/2009 5:15 PM (GMT -7)   
I don't know if this is any consolation, but I've found that my hearing seems to "eb and flow" since my lupus dx. Some days I hear TOO MUCH, everything sounds like a shout, while other days I don't seem to hear much at all. Then there are days that seem normal.

My theory is that it's some sort of inflammation going on way inside my ears or my head, as no drs seem to find anything wrong. When I get enough good sleep & good food is when things seem most normal.

I hope your drs find a way to help you symptoms soon,
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde


nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 11/15/2009 6:53 PM (GMT -7)   
Hi Ginny,

I've also noticed that there are days I don't hear well at all.....just yesterday I told my students that if they needed to say something to me, to speak loudly, because I was having hearing problems. It seems to come and go, along with the vertigo, etc.

I'm embarrassed to ask this, but have you (or anybody) had any incontinence issues? I'm also having problems with that, intermittently. Sorry, I know it's TMI, but you guys are the only ones I can talk to other than my doctors!

Ack....I really HATE this illness, whatever it is!!

JoAnn
Autoimmune hepatitis, Hashimoto's thyroiditis, lupus, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD.

Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Mirapex, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP


autoimmunediseasesgfliving.blogspot.com


Ginny
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Date Joined Feb 2003
Total Posts : 5514
   Posted 11/16/2009 7:51 AM (GMT -7)   
Hi Lynn, yes, it does eb and flow between hearing too much and not enough! Interesting....

JoAnn, I haven't had incontinence issues, but I know it is something that Lupus will cause. Isn't it great that we can bounce these questions off each other and not be embarrassed to do so!

PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 11/16/2009 8:28 AM (GMT -7)   
Ginny,

Sorry I haven't answered this thread to tell you that I'm thinking of you and all of your new issues. It can certainly be scary, esp for someone like you who has had a stroke. I hope you can schedule your MRI soon, and also that you start to feel better.

If you remember about three years ago my hubby had some health issues that turned out to be a myoclonic jerk. His whole body (including his voice) would suddenly jerk - his arms and legs would fly out and he'd yell or grunt at the same time. He was prescribed amytriptiline and the jerks improved markedly. Strange that it can both help and cause similar problems.
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

prednisone, plaquenil, leflunomide, neurontin, synthroid, triamterene, actonel, niaspan, lyrica, tri-est, cymbalta, acifex


nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 11/16/2009 9:55 AM (GMT -7)   
Ginny said...
JoAnn, I haven't had incontinence issues, but I know it is something that Lupus will cause. Isn't it great that we can bounce these questions off each other and not be embarrassed to do so!


Thanks for your reply, Ginny. I didn't know that this could be a symptom of lupus....I've had it in mind as more of an MS thing, but it sounds as though lupus can mimic MS very closely!
Autoimmune hepatitis, Hashimoto's thyroiditis, lupus, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD.

Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Mirapex, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP


autoimmunediseasesgfliving.blogspot.com

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