Plaquinel and Long Term Disability

• By ShamrockShea
• Posted September 29, 2008 at 2:40 pm

Hi Penny,
I just read your post and there are some things we have in common. I have migraines so I take Topamax and it is great! I have had lupus for 13 years, fibro for 5 years that I know of, rheumatoid arthritis for 4 years.

How long have you been sick?

I took Cymbalta and it made me very suicidal. I take Zoloft now and it helps with the depression. I take Plaquenil for my lupus, Lyrica for my fibro, Naprosen for my inflammation for my arthritis. And Celebrex which is awesome! I also take alot more medication.

I hope this helps!

Shea

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• By psjaquith
• Posted October 2, 2008 at 2:13 am

Hi Shea...just got to reading posts..haven't been on in a while. I was on the Zoloft but it didn't do me any good. I asked about the necessity of taking the Quinine as this last trip to the specialist he said that he felt on the Sjogrens is systemic and the lupus is not, which is contrary to the last visit. I am glad that it isn't systemic..but would be feeling better if he hadn't told me two different things.

Right now I'm on Lamictal and Clonazapam for epilepsy (post-crainiotomy) and have Diastat which is rectal gel...really convenient huh? I also take Despiramine for GI spasms (have ulcerated diverticuli that often bleeds), blood pressure, fluid pill and synthroid. I've been careful about making sureI take the flax seed oil three times a day. The last time I skipped, I was in trouble.

I only have Soma and some Hydrocodone that I dole out when I have to. Right now, I have screwed up my rotator cups when I had to catch my daughter. One of the buckles on her lift sling came undone and she was falling from mid-air. She has a rare bone disease which causes fragile bones. Had she hit the ground,we would have been in trouble. So, I grabbed her (she weighs over 100lbs) and took her to the ground with me so I could control her fall and cushion it.

I don't know about the fibro..but, joints are worse than ever...does it attack joints or just nerve endings or both? I know that if I walk any distance, my hips lock up, and like now can't raise my arms. The RA profile was negative so it is going to be osteo. We haven't done x-rays yet other than on knees. The bone and joint can't do anything with those as the problem is inflammation inside the joints. We'll see about the shoulder.

The doctor tried me on amnitryptaline (didn't spell that right) to see if we could control my migraines. It caused tachycardia..raised heart rate to average of 150 bpm. All the meds aren't working well together. I stopped the one..but blood pressure, quinine and seizure drugs are dropping my heart rate down the other way to average 60 bpm. Needless to say, I'm ready to go back to bed again.

My hours aren't condusive to getting up early either although I do it. Right now I am rather frustrated, disgusted, and at a loss on what I'm supposed to do. The Sjogrens has really started problems in the joints of my hands...they have hard raised deposits in my fingers. My remaining thyroid has been growing rapidly so it's time to jerk that sucker out.

I guess we'll hobble around and change meds as we can. I am afraid to take the Celebrex or Viox. My mother was on those, as well as Premarin and had strokes. The doctors took her off of both. I took myself off of the Premarin, I was already into Menopause and look how many woman have gotten along without it.

I'm behind on my GYN visit. Had two appointments there and missed two eye appointments because I wasn't stable neurologically to drive. If there is any chance I could be even the littlest risk of seizure, I don't get behind the wheel... I have to be really diligent there. Knowing triggers, knowing how I feel gives me time to get safe. I only travel the frequent traveled, less traffic and direct routes. Basically, my van knows the way to the barn on its own.

Hope that this finds you doing well. I don't get on this site as often as I should.

I think I have my contacts listed.
psjaquith@aol.com
www.myspace.com/bigsisd2hga

I try to check those often from other folks. Have Face, ReUnion, Yahoo, G-mail and Grande. Being in a group with large members (Organic Acidemia Association) I like to get mail broken down to pieces! I'm behind on blogs but need to update both Space and Face.

Same with on here! Things have been hectic around here so not much time to be on. Give me a shout and we can get together.

Migraines have been around for a long time. Had a CT in the early 80's. Parotid tumor found in 1990, brain tumor in 2001/2. That hasn't helped on headaches. Had an idiot at that point for a neurologist. With only one neurology clinic in town (rediculous for a town this size (Waco, TX and I'm in large suburb of that) so I wasn't able to switch to a different doctor.

He put me on Effexor which really had me sick. (Cymbalta was the last thing I was on...couldn't think of it at the start of this reply!) Told me I didn't have a problem with my brain tumor because I had gamma knife radiation to kill it. Yep, right. I took it in, threw him the box and told him that stress didn't wake you up in the middle of the night with severe migraine, stress didn't interfere with vision or gait. So, he did MRI and gee...fluid build-up on the brain.

A week later I was in emergency surgery to get the tumor out. It blew up so fast they were certain it was malignant...but it was actually a combination...a mixed tissue tumor with strong radiation blast markers.

Thyroid and Parotid, same thing..mixed tissue and this is all indicative of the Sjogrens. So, I don't know..I've struggled with fatigue for the past 20 years, since in my late 20's/early 30's. I'm 52 now.

I'm a young/old mother with handicapped child, now 17, and a 14 year old bundle of energy. My 14 year old does pretty good for the most of time but in that stage of rebellion and finding his own independence.

I'm more used to teenaged girls! I had three step-daughters. My daughter is my little angel. She's always going to be my Little Mouse. She has her appropriate teen moments where she snorts through her nose if she is impatient or aggravated. She doesn't speak but uses gestures and tones. She can sit up but non-ambulatory. She's a full-care patient.

I have pictures posted of them both on MySpace and I believe on Face and/or ReUnion as well. They are my heart.

Do you have trouble getting people to understand that there is real and severe pain or do they think because we are walking and moving around or look ok there's nothing wrong? Even my husband sometimes doesn't understand why I can't get some things done or when I spend more time in bed than I normally would.

Speaking of bed...I better be heading that way. I have to get up to wake up Nathan and push him to get ready for school and get him there. Then I can come back, drain the hot water heater (the elements went out on it and has to be fixed), do some laundry and sleep until time to pick up Nathan. Then come home and sleep some more. I wish...gotta go and deposit my mortgage payment and pick up some groceries first at WalMart. My husband just got out of the hospital for pneumonia...we had the bug and he didn't eat or drink like he was supposed to do. So, end result........... He runs himself down with his work-three jobs. He's a criminal investigator and working a very big case about to go to trial, a paramedic, and paramedicine instructor. He was teaching the night he came home sick. When he left his students and came home at 10:30pm, I knew he was really, really sick.

I'm going to head off to bed and look forward to hearing from you soon.

All my best to you,

Penny
BigSisD2HGA

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• By psjaquith
• Posted October 2, 2008 at 2:18 am

Forgot to tell you...when on the Cymbalta, I didn't feel better one way or the other and wasn't on it very long at all. I was thinking it was one of the things lowering my heart-rate.

I did go through a period though of deep depression where I cried over everything and anything. It turns out that this is actually a type of seizure activity. Upped the Lamictal a little and that resolved. When I get over-emotional, I know what's going on now.

I'm watched for depression because of the situation with my daughter...but, that is a life of stress rather than depression.

The Effexor really messed with my mind..had wild hallucinatory dreams and made me feel terrible all over..but especially messed with my mind and of course did nothing at all with the migraines.

I will keep the topiramate in mind. Sherry was on it but was allergic to it. We had increased Lamictal to 1 1/2 tab from 1. Insurance wasn't going to pay for all of it for some reason. Never could figure that one out, so I didn't try it.

Have you noticed if any food triggers migraines or other outside factors with yours?

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