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Here we go again 7 years 5 months ago #43153

  • 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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So what do we call ourselves? Disabled doesn't work! Retired does sound like living at the golf course. My wife says "at home pharmacy test monkey"..hmmm?


That's a good one! If I come up with anything better, I'll let you know. How's your walking these days?

I had labs back in the early 80's that are linked to Lupus, but doctors didn't connect the results with Lupus back then, so I had no warning. I did have one doctor in the early 90's who told me that I may one day end up with a connective tissue disease, like Lupus. I had no symptoms so blew it off. Nothing until 1998 (ITP) and 2006 (Lupus). Not sure what I would have done differently other than not being a sun goddess for years. I'm sure that contributed big time, but oh well, can't change it now.

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Here we go again 7 years 5 months ago #43157

  • DanC33
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I never had labs back then, in fact I only went to a doctor if something was broken. And even then I had to be forced.

My walking is so so, depending on the day. Of course you know how that goes. They did up the amount of Sinemet I take for the PD and dystonia along with the higher dose of Neurontin. I still have to use a 4wheel walker or my power chair on really bad days. If I overdue it one day then I usually can be sure the next isn't going to be good. I'm still trying to find that middle ground.(if there is one) It also helps when I don't get out in the sun too long or take real long car rides.

And back then there wasn't sunscreen we had baby oil for that deep tan!

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Here we go again 7 years 5 months ago #43160

  • 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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Oh yeah, the baby oil days! I used to slather that on. I'm still horrible in the sun because I have a pool. I do use sunscreen, but spend too much time out there on nice days.

I hope you find your middle ground, Dan. I know it's next to impossible though.

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Here we go again 7 years 5 months ago #43161

  • Melinda
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Dan your wife sounds like a gem! Need to get caught up on posts but for now will say - I have relatives throughout Nevada that's how I knew about Gabbs, not many people will you know :) Been through Fallon a number of times. I like that State.

Genealogy is habit forming, I started years ago & now also transcribe records for a genealogical society - I finally gave in and joined ancestry.com

Dan have you seen an orthotist? With your leg problems I would think insurance would cover that.

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Here we go again 7 years 5 months ago #43173

  • DanC33
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There you are Melinda! How's the thumb?

My wife has a lot on her plate and I'm grateful to have her. In fact we will be married 23 years this 19th.

I have done some genealogy work for a school project for my kids when they were in the 6th grade. It was a lot of fun.

No I haven't seen an orthotist. They think my leg problems are a combination of neuropathy, swollen joints/arthritis and dystonia.(and possible myositis) And they also think some of it is hypoxia, my o2 levels drop like a rock when I am walking (I am on 4ltrs of O2 most of the time)

Sandi, I don't have a pool but I do love to fish and hunt. Well just about anything outdoors! I am not an indoor person. But the sun makes me flare faster than anything so I found an SPF 100 sunscreen that helps a lot and I wear a hat ect.. It seems though my middle ground is an evolving thing so hopefully I will find it.

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Here we go again 7 years 5 months ago #43209

  • Melinda
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Thanks for asking Dan - it's doing fine, Wednesday I get this soft/hard bandaging off and a normal cast put on so that will make things easier.

Congratulations on your upcoming 23rd anniversary - that is great! Won't tell you how long I've been married, but it's been a looooong time my wonderful husband has been putting up with me :)

And orthotist knows, or should know, how to handle neuropathy - I asked mine [since I do have PN and also a worn out ankle tendon I get 2 pairs of custom softish orthotics and a pair of shoes a year] if he could help me if my PN ever makes it so I have foot drop or can't lift leg for stairs etc and he said yes.

Archery - have you tried that? Can even be done sitting down.

Nevada - at familysearch.org there are some records that are by county and you can browse through the actual records looking for that familiar name. A number of years ago I was looking for naturalization papers which if they could be found would have been at the county - so I wrote and bless this lady's heart she couldn't find them but sent me the 1879 Property Tax listing for the family - the land value, the improvements value, the personal property value and the tax paid for the year 1879 ($8.50). Not many county clerks would do that!

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Here we go again 7 years 5 months ago #43233

  • 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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Dan, Melinda and I would like you to read this thread when you have time:

pdsa.org/forum-sp-534/6-general-itp-discussion.html

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Here we go again 7 years 5 months ago #43265

  • DanC33
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Went to that link and it looks like something that I would like checked out. The link says it is locked out by moderator so couldn't post anything there but it makes a lot of sense.
I am going tomorrow to see a new Neurologist because my old one no longer accepts any of the "Medi's".(Medicaid/Medicare ect..) He says that they take way too long to get paid. So hopefully that goes well. I did get the bill from them $679.00 for a 10 minute office visit. That equals $4079.00 an hr. That is insane!!!!

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Here we go again 7 years 5 months ago #43267

  • Melinda
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Dan did it take you to the thread called: Melinda - Anti-MAG antibodies
Hmmmm, wasn't locked when I just went there.

This is the link I have for it:
pdsa.org/forum-sp-534/6-general-itp-discussion/28259-melinda-anti-mag-antibodies.html

I hope you like your new neurologist - sometimes change is for the best.

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Here we go again 7 years 5 months ago #43277

  • 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 didn't lock it....

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Here we go again 7 years 5 months ago #43279

  • DanC33
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It finally let me in, don't know what happened. So I did post there.

I do go to my new Neurologist today, here's hoping it works out. She's a new Neurologist and VERY young. From what I've heard from others on Healthgrades she's got 5 stars so far. If she works out I will ask about that test.

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Here we go again 7 years 5 months ago #43288

  • 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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Good luck Dan. I hope she has something better to try...you never know. I once went from a small town Neurologist to one in Pittsburgh. She had a lot more to say.

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Here we go again 7 years 5 months ago #43294

  • DanC33
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Just got in from my new Neurologist, and she's very nice. She also put me on three times the amount of Neurontin (1800mg) doubled the amount of Sinemet and started a new drug called Azilect. She said that I was on nowhere near enough of anything to do any real good. She is very young but she seems to know her stuff.

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Here we go again 7 years 5 months ago #43309

  • 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 hope the meds work for you without side effects. I'm glad you liked her! :)

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Here we go again 7 years 5 months ago #43310

  • Melinda
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Dan are you gradually getting up to the 1800mg of Neurontin? My fantastic neurologist [now retired :( ] told me most of his patients take that much or more. I'm glad you like her and I hope this helps lots!!

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Here we go again 7 years 5 months ago #43312

  • DanC33
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I forgot to mention it's the new CR version of Neurontin and it will probably increase over time. When she was doing my evaluation yesterday she said she could tell my feet "wasn't happy" with me, she said that they look like they flop when I walk indicating nerve damage.(drop foot). And she said my hands were unresponsive, she had me close my eyes and poked me with a safety pin, she also did my feet and legs. I didn't feel anything.

And when I said she was young I meant young. I have socks older than her. But I think my wife was a little worried because she is so young and looks like she could be a model in a magazine.

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Here we go again 7 years 5 months ago #43321

  • Melinda
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Didn't know Neurontin had something like that. Sorry about the foot drop - seriously, ask her about sending you to an orthotisit. Unfortunately that's a side effect of PN - so far I just have some leg muscle waste. Usually I can feel the pressure of the pin but not the "stick/ouch".

I think it's good she's young - she is excited & interested in what she is doing, she's up on things, and you can train her :)

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Here we go again 7 years 5 months ago #43324

  • 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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Do you guys itch but can't feel the scratch? That is one of the oddest things! I can also scratch my upper chest and feel tingling in my arms when I do that. Nerves are all out of whack! I don't have drop foot but lose my balance all the time and muscles are a mess.

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Here we go again 7 years 5 months ago #43325

  • DanC33
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Melinda, the CR version of Neurontin is very new so my insurance is fighting it. And I didn't feel a thing in just my lower legs and feet.

Sandi, that's one of the things that drives me nuts. Have an itch and you scratch and nothing happens. And I also have balance issues.

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Here we go again 7 years 5 months ago #43328

  • Melinda
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So it wouldn't be a generic and probably the generic Gabapentin wouldn't have a CR so my insurance wouldn't cover it and I'd have to pay a fortune. Good luck, hope your doctor can get insurance to cover it.

I can get relief itching because I feel the pressure if on lower legs or feet.

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Here we go again 7 years 5 months ago #43332

  • DanC33
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The meds are called Gralise Star 300/600. It is a type of gabapentin but it's mixed with some other stuff. It was originally designed for neuropathy due to shingles issues. But it's also for pain, seizures, neuropathy, muscle weakness and anxiety. All of which I have and take a pill for. So if my insurance will cover it I can stop taking (and them paying for) 5 other meds for a total of 8 less pills daily. :cheer: She's trying desperately to lower the amount of pills I take. She says that nobody should ever have to take that many pills! Surprisingly it isn't that expensive for such a new drug, not to say that it's cheap(around $500.00 a month) but considering one of my current meds is over $2000.00 a month this seems like a bargain! Sadly though this won't replace that one.

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Here we go again 7 years 4 months ago #43379

  • Melinda
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From what I could find that med isn't generic so I wouldn't be able to get it. Dan that would be fantastic if she could get you down on the # of meds you are takin!

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Here we go again 7 years 4 months ago #43382

  • 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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Wow - one size fits all! Sounds like Savella in a way, but that drug was too good to be true. I hope it works for you.

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Here we go again 7 years 4 months ago #43383

  • 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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Oh, what can a pill do for muscle weakness?

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Here we go again 7 years 4 months ago #43388

  • DanC33
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For whatever reason they are not sure why exactly it works. But here is a couple links reference.medscape.com/drug/neurontin-gralise-gabapentin-343011#0
shingles.emedtv.com/gralise/gralise-uses-p2.html

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Here we go again 7 years 4 months ago #43395

  • 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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But what does it do for weak muscles?

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Here we go again 7 years 4 months ago #43418

  • DanC33
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From what I've read they are not exactly sure how Gralise Star works as far as muscle pain and weakness. I have a friend who is a Pharmacist, I will ask about this and report back as soon as he gets back with me. But so far my insurance still won't approve this. They say the only approved use is for Shingles. And Shingles causes muscle pain and weakness so there may be a connection.

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Here we go again 7 years 4 months ago #43428

  • 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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Okay, let me know what you find out. Muscle pain and weakness are huge problems for me too,as well as most of the other things you listed!

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Here we go again 7 years 4 months ago #43438

  • DanC33
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I just received a call from Dopmed the company that makes Gralise. They said that it is FDA approved only for shingles pain and weakness,she said that the only way to get this approved by any insurance company is if you have shingles.
But she did say that it works by blocking the nerve receptors in the brain, spine and nerve endings. So ultimately you don't feel the pain, so you use the affected limbs more so it builds the muscles. So it could theoretically stop the pain and weakness from anything, Lupus or otherwise. She said that she's not a scientist so she was just giving the info she had. She did say they are in testing for other uses but she couldn't give specifics as to what or when.

My Pharmacist friend is still researching this new drug. All he has so far is the same info the company gave me.

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Here we go again 7 years 4 months ago #43440

  • 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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Oh ok. I get it. I could have used that last year when I had shingles and lost the use of my hand.

It's a shame how those drugs are so specifically used because many more people could benefit. However, anytime I have tried those kinds of drugs, fought with the insurance company for approval and finally won, the side effects were too bad to keep taking it anyway. Short term maybe, long term was too much.

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