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Other Platelet Disorders

TOPIC: Blame it on Lupus?

Blame it on Lupus? 3 years 10 months ago #48507

  • eklein
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Sandi, how do they diagnose vascular dementia? My mil is having problems and doctors have not been helpful. It's a small town.
Erica
And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K

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Blame it on Lupus? 3 years 10 months ago #48508

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Her doctor performed some cognitive tests which she failed. They also did an MRI which showed narrowing of the blood vessels in the brain. Usually those two things are all that is needed. It is caused by lack of oxygen from atherosclerosis/mini-strokes/small clots in the brain. It all began after her hip surgery so I think she either had mild strokes during surgery or had small clots in her brain when she had the Pulmonary Embolism because they took her off of blood thinners too soon. The Dr. said that she had many small clots in her lungs at the time, so she may have also had them in her brain. Just speculation on my part, but she was fine before she broke her hip. It's been a steady decline since then. She has all of the symptoms....losing bladder control, loss of balance, memory and cognitive issues and shuffling when walking.

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Blame it on Lupus? 3 years 10 months ago #48572

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Well, the Dr.'s office finally called to schedule the Solumedrol. Next Wednesday, 8 weeks after I initially spoke to the Rheumatologist about it. Apparently, insurance just approved it.

Here's the best part. They told me that they have no idea what my cost will be; they said that insurance doesn't work that way (HUH?). I will find out after the fact if anything is even paid by insurance. I was told that I had a good supplemental plan. So far, it's been worthless.

I have never had this problem with insurance. It's always paid for everything. The ACA has ruined insurance, and I don't even have it through them.

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Blame it on Lupus? 3 years 10 months ago #48613

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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I'm really starting to panic lately about my hands and arms. I keep losing strength and it's getting worse. I can't use my fingers independently; they all move when I try to scratch my face or something. I really have to concentrate when I need to do something with my hands. When I'm in bed with my eyes closed, I don't automatically know where my hands are and visualize them somewhere that they're not. These are things that you just don't normally think about unless something weird is going on.

I bought some balls to squeeze and used it 10 times on each hand. The next day, I woke up with my forearm muscles so strained that my arms felt even weaker and hurt like hell. I don't know if this is due to the swollen joints, Prednisone muscle weakness or nerve damage. Maybe all of the above.

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Blame it on Lupus? 3 years 10 months ago #48614

  • DanC33
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Good news on the Solumedrol hope it works where other things have failed...

As far as your insurance, have you called them to get an estimate of what they'll pay? It should give you some idea of what it's going to be out of pocket.(from what I've read it's as much as $2K for each infusion)

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Blame it on Lupus? 3 years 10 months ago #48625

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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I called my insurance agent and she called the insurance company. According to her, my co-pay is eighty-nine cents. No one ever knows what's going on any more.

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Blame it on Lupus? 3 years 10 months ago #48628

  • DanC33
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eighty nine cents?...that sounds too good to be true, hopefully it's right. Your right about nobody knowing anything these days.

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Blame it on Lupus? 3 years 10 months ago #48646

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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I keep hearing that my insurance supplemental is supposed to be a good plan, but I have yet to see that. We'll see! I've only had it for 6 weeks so bills haven't been coming in yet and the ones that have have been screwed up.

I think I'm going to make an appointment with my neurologist about my hands. I'm thinking that I have radial tunnel. The Solumed should help that since it's most likely due to inflammation. I had Cubital Tunnel for the same reason. I need to address it before the damage is permanent (if it isn't already).

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Blame it on Lupus? 3 years 10 months ago #48695

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Solumedrol infusion done! 1,000 mg's. Eight weeks and one day after first discussing it with the doctor. I'll be scheduled once a month.

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Blame it on Lupus? 3 years 10 months ago #48701

  • DanC33
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Hopefully it works....keeping fingers crossed!!

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Blame it on Lupus? 3 years 10 months ago #48703

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Me today:

:woohoo: :woohoo: :woohoo: :woohoo: :woohoo: :woohoo: :woohoo: :woohoo: :blink:

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Blame it on Lupus? 3 years 9 months ago #48862

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Bad day today. I finally got the nerve to get a neurologist appointment about my hands. I saw him today. Dan, how do you get a handle on the anxiety and fear of losing the ability to do things? I've lost so much muscle in my forearms and hands and it's hard to do so many things now. When I make a fist, my fingers cross over each other. It's hard to use spray pumps, squeeze shampoo bottles, etc...I'm terrified that it will keep getting worse and I'll be useless.

I have every reason to be happy. My daughter is coming home from SD this week and we're all going to the beach in NC next week. I used to live for these times, now I'm just depressed and panicked. I won't know anything until next month after I have an EMG and blood work done. I think I'll wallow today and then tomorrow, I'll try to shelf it for a few more weeks and just be happy! He thinks it's a neuropathy but I have little pain, just a lot of muscle and nerve damage.

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Blame it on Lupus? 3 years 9 months ago #48920

  • Melinda
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Relax and enjoy - you need it!
(I'm sorry about your hands/forearms Sandi]

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Blame it on Lupus? 3 years 9 months ago #49002

  • DanC33
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Sandi, so sorry to hear about your hands. I've had to go over to using pumps for things like shampoo ect.. I exercise my hands using a small grip/stress ball, it's a small changes but it helps.

Have fun with your family!!!


Going on vacation so wont be on till next Monday..

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Blame it on Lupus? 3 years 9 months ago #49014

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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I have problems using pumps. That won't work. :huh:

I have the balls but have problems using them too.

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Blame it on Lupus? 3 years 9 months ago #49017

  • Melinda
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Sandi when I read "I have the balls..." - I started laughing [it's late, I'm so tired and it just struck me funny].

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Blame it on Lupus? 3 years 9 months ago #49026

  • mac
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Hello,

All of you have been so helpful with my sister I thought I would try your expertise again. My Mom is currently being treated by a reumotologist for what they think is most likely lupus. She has some of the markers in the blood work but not enough for them to give a definite diagnosis. She is currently dealing with a horrible skin itching problem. It has been going on since August and continues to get worse. There really isn't a rash she just itches and it is so intense that it looks as if she has been beaten with the bruising. She never leaves home without her backscratcher! She has been to just about every doctor under the sun. One has suggested neurodermatis and she has tried all the meds they suggest for that except for the anxiety meds and the cool compresses that I found was supposed to be helpful. Have any of you with lupus experienced anything else like this? She is on methotrexate and plaquenil but I don't know doses. She has tried all the steroids and no luck! It is awful! Any advice???

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Blame it on Lupus? 3 years 9 months ago #49030

  • Rob16
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Has your mom tried antihistamines?

Ellen for years has had terrible itchiness and takes one Claritin each day (and sometimes one Benadryl at night). That usually takes care of it. She forgot to take it yesterday and has claw marks from all of the scratching. She seems to have a poor tolerance for histamines, and many foods that contain high levels of histamine trigger her migraines: red wine, aged cheeses, cured meats, and many more. I wonder if this could be related:

ajcn.nutrition.org/content/85/5/1185.long
Histamine and histamine intolerance1,2,3

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Blame it on Lupus? 3 years 9 months ago #49031

  • mac
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She does take claritin but can't take benadryl. It make her really agitated. Did your wife receive a diagnosis?

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Blame it on Lupus? 3 years 9 months ago #49034

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Mac:

I'm sorry to hear that. I have not had that problem, but a friend of mine with Lupus has. It turned out to be vasculitis. Your mom's problem could be many things; if she does have Lupus, anything and everything is a symptom. Hopefully Plaquenil and MTX will help. It could take time.


Melinda - Ha, I never gave that a thought!

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Blame it on Lupus? 3 years 9 months ago #49035

  • Rob16
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Mac, Ellen does not recall a diagnosis other than unspecified allergic reaction. Dermatologist prescribed Claritin or such when it was a prescription medication. That was decades ago, and it never cleared up. She hasn't investigated it further.

I hope your mom gets some answers soon. It sounds really miserable.
The following user(s) said Thank You: mac

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Blame it on Lupus? 3 years 9 months ago #49037

  • Melinda
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mac a side effect of methotrexate injection can be itching - I didn't see itching as a side effect of methotrexate pills. I use Medline Plus when checking on side effects.

Hope your Mom can get an answer soon as to why the itching - she must be miserable!

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Blame it on Lupus? 3 years 9 months ago #49041

  • mac
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Thank you all for your help and suggestions. I'm checking all of them out!

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Blame it on Lupus? 3 years 9 months ago #49057

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Let us know, okay? How is your sister's rash?

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Blame it on Lupus? 3 years 9 months ago #49059

  • mac
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She is still having blisters and things randomly come and go. Her on foot is the worst. The doctor at Hopkins said that could happen for.up to a year! She looks and feels so much better. She stopped all steroids at the beginning of March. Her last count on May 11 was 267,000. It had been in the upper 80,000 two weeks before. The Dr is hoping it is a response from the rituxan and not the steroids. My Mom is going to Hopkins in July. The itching is driving her crazy!

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Blame it on Lupus? 3 years 9 months ago #49080

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Mac:

I had an odd few nights of itching from being in the sun this week. I was going crazy. I used aloe with lidocaine and it helped a lot. It seems simple, but maybe she could try it. It's temporary but provides some relief.

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Blame it on Lupus? 3 years 9 months ago #49086

  • mac
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I will pass it along. The doctor thinks it is something with the nerve endings....she started yet another med. I can't keep up with all the things she has tried. Hope your itching stops too.

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Blame it on Lupus? 3 years 9 months ago #49089

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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If that is the case and it is likely, it could be paresthesia/neuropathy. I have it too, but itching is not my main symptom. I mostly have pins and needles, burning skin, crawling sensations and occasional itching. I've tried a few medications such as Cymbalta and Lyrica, but the side effects were worse than the symptoms. It comes and goes and the weather has a lot to do with it. I'm sensitive to heat and cold; both can set it off. Nothing I have tried over the past 9 years has done any good. I hope your Mom finds something that helps.

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Blame it on Lupus? 3 years 9 months ago #49114

  • Melinda
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Sandi reading that thread by Taz about serotonin - wonder about it and neuropathy. Not one (1 - ein - uno - ceann - unum - jeden - en - één) thing has helped my neuropathy pain, period! I have quit, why should I keep doing things to myself when most likely it isn't going to help - filled the Effexor but decided why take it. Things just keep getting worse and worse. Oh well - who needs a life without pain, who needs sleep?

Oh, there was a lady at my exercise class who said she would share some of her medical marijuana with me but I declined.

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Blame it on Lupus? 3 years 9 months ago #49115

  • Sandi
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You lost me, Melinda. Serotonin and neuropathy? I'm missing a referenced connection in the thread.

Unfortunately, meds don't help many things. I know it is miserable and I couldn't imagine having it all the time. I don't, which is why I'm having a hard time believing that the bit that I do have has caused so much muscle damage. It's been 9 years, but I didn't expect sporadic neuropathy to destroy my hands like this. I wish there was a way to treat neuropathy instead of just masking it. The treatment for chronic inflammatory neuropathy is steroid infusions which I'm already doing but it might be too late.

I miss sleeping too. No matter how tired I am, I'm too uncomfortable to sleep until I literally drop. Ha, my husband found me asleep sitting up in bed the other night with my phone in my hands. He thought that was pretty funny. I was playing a game and apparently just crashed.

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