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Other Platelet Disorders

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New Diagnosis 8 years 4 months ago #35946

  • 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 can't even remember now why I switched to the injections. I think it was to help alleviate the stomach issues. That didn't help. You have to take folic acid with MTX; it helps with side effects. I can't say MTX was the worst drug I've ever been on. Lyrica was much, much worse for me although it did help the most. The side effects were horrendous though and not worth it. Right now, I'm finding Imuran to be worse than MTX was.

Breaking Bad is, IMO, better than The Sopranos. The subject matter is a bit weird, but the characters are fantastic. It's drama, it's funny and it's seat-gripping.

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New Diagnosis 8 years 4 months ago #35951

  • jeffrey71
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Breaking Bad is, IMO, better than The Sopranos. The subject matter is a bit weird, but the characters are fantastic. It's drama, it's funny and it's seat-gripping.

The above phrase is illegal in 29 states, and considered just wrong in 21! :)

Jeffrey

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New Diagnosis 8 years 4 months ago #35953

  • 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 do you know.

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New Diagnosis 8 years 4 months ago #36108

  • Melinda
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Dan I'm sorry too about the dual diagnosis - but now at least you know. I sure do hope the MTX will help you! My stepmother took it for a while, self-injected, and I don't recall her having side effects.

Hope you will be able to play that guitar for longer stretches as time goes on.

I bought myself a Nexus 7 tablet so that I could play games on it - I smile because I'm an oldie but I do have fun with games. Angry Birds, have a few different ones, makes me laugh as does Temple Run - Candy Crush is fun and so is the word game Boggle. At least my mind is working while I'm trying to win ;) I also have books on it but do prefer my Kindle for reading.

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New Diagnosis 8 years 4 months ago #36110

  • jeffrey71
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Oh what do you know.



Pfffffffffft! so there!

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New Diagnosis 8 years 4 months ago #36403

  • 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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Hey Dan - thinking about you. How are you?
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New Diagnosis 8 years 4 months ago #36670

  • DanC33
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Sorry I haven't posted in a while. I just got out of UCSF again. :( Still have Lupus but they finally figured out my neurological problem, I have early onset Parkinson's disease. :angry: So now I am taking Neurontin and Sinemet to add to all the other drugs I am on. So I have to go almost 500 miles round trip to find a good Neurologist and a good Rheumatologist. I guess that's the price for living in a small town in the middle of nowhere.

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New Diagnosis 8 years 4 months ago #36682

  • Melinda
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Good to see you Dan - so sorry about the Parkinson's, but now you at least know and can deal with it as best as possible. Someone I graduated from high school with just found out her neurological problems were Lou Gehrig's Disease.

What dose of Neurontin did they start you on?

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New Diagnosis 8 years 4 months ago #36686

  • jeffrey71
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Dan!

It is good to hear from you but I am sorry that the news is not better. I have you in my thoughts and prayers. If you want to vent it is cool. Hang in there!

Jeffrey
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New Diagnosis 8 years 4 months ago #36690

  • DanC33
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I take 300mg of Neurontin and Sinemet is 25/100 3x daily. Both of these are going to be increased over a period of weeks to about 1000mg of the Neurontin and the Sinemet will be 6-8x times a day.
But they did take me off the Cellcept because the docs at UCSF said it is a worthless drug for Lupus and they lowered my dose of Medrol to 12mg.

I also want to thank everyone for their thoughts and well wishes. I am glad to have a place to vent a little and get educated about what is going on .

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New Diagnosis 8 years 4 months ago #36693

  • 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 sorry to hear that, Dan. You've been through the wringer for sure. I hope the meds help you. I've never heard that CellCept is useless for Lupus...it has helped some people that I know of. It may not be the drug for you though, so I hope something makes a difference.

Keep in touch, okay?

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New Diagnosis 8 years 4 months ago #36696

  • DanC33
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I think it has to do with MTX being their first line drug. And they also said the cost for Cellcept is considerably higher.(UCSF is a state run hospital so they are VERY cost conscience) My local Rheumatologist says that Cellcept is better because it has less side effects over the long term also is less toxic and as such can be used for a longer period of time. I do know that I took the Cellcept for months and had no side effects outside of some explosive gastro intestinal issues. They are also sending me back to my local doctors because of it being so far to UCSF. But they said they are going to monitor my progress (UCSF and my local docs all use the same charting computers so they can see what's going on and jump in when it's needed)

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New Diagnosis 8 years 4 months ago #36703

  • 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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Any side effects from MTX at this point?

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New Diagnosis 8 years 4 months ago #36763

  • DanC33
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Not yet, but they suspended it for a couple of weeks because of going in for an EMG/NCS. They said that they can cause false readings.

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New Diagnosis 8 years 3 months ago #37233

  • 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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Hey there, Dan. How are you? Anything new?

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New Diagnosis 8 years 2 months ago #37647

  • DanC33
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Outside of falling(legs just went) and giving myself a concussion with closed head trauma and a nice ambulance ride to the ER not much.
Can't wait until I can't restart the MTX and be put back on Medrol because I am having BAD Lupus issues. Hair is coming out in clumps, sores in the mouth, rashes everywhere and some serious pain in the joints. But I don't go in until the 19th for the EMG/NCS so I guess I'll have to deal with it until then. :angry:

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New Diagnosis 8 years 2 months ago #37655

  • jeffrey71
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Dan,

Nice to hear back from you, but I am sorry that you are having stability issues. I cannot even begin to imagine. You are brave my friend. Keep up the fight! Is there anything that they can give you in this slot time to at least alleviate the symptoms a bit?

Jeffrey
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New Diagnosis 8 years 2 months ago #37664

  • DanC33
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Not really, they said that they all interfere with an EMG. So it's just something I get to deal with until then. They are doing the EMG to confirm whether it's the Parkinson's or Lupus causing the Neuropathy and muscle loss (or possibly Dermatomyositis) They did say I can take all the ibuprofen I can handle until then but it's almost useless.
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New Diagnosis 8 years 2 months ago #37665

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Dan,

Sorry again to hear your plight. Again, you are one tough guy! If you can, and feel secure enough, try a few basic yoga stands for balance. If you need a couple I can help you with that a bit. Also, if you can, maybe a few dumbbell exercises for the arms and shoulders. I can help you with that a touch too.

Reach out if you wish, I will be around.

Jeffrey

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New Diagnosis 8 years 2 months ago #37666

  • sem40
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Careful with the ibuprofin. My sister was prescribed a high dose for a case of pleuritis, she follows things like dosing instructions religiously, and she ended up with a stomach ulcer. So frustrating.

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New Diagnosis 8 years 2 months ago #37667

  • sem40
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Actually... She was also later diagnosed with sjogrens so I think that increased her susceptibility to ulcers from NSAIDs but I guess I'm still weary of dr's recommendation to just load up on ibuprofen. Still frustrating.

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New Diagnosis 8 years 2 months ago #37669

  • Melinda
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Dan I'm sorry about the fall and ambulance ride and not being able to do anything for your symptoms right now, bless your heart.

I had the NCS test, probably the EMG too but has been so long ago I don't remember, after my idiopathic peripheral neuropathy diagnosis. I have muscle loss in lower left leg.

Curious - will it make a difference if your neuropathy is due to one disorder over the other?

Take care, thinking of you!

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New Diagnosis 8 years 2 months ago #37670

  • DanC33
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They said that it really can influence the way it's treated. If it's autoimmune related then they have to treat it with higher doses of Medrol and other autoimmune drugs because it's nerve/muscle damage either at the spine or in the legs . If it's Parkinson's related then it's in the brain and that is a different type of drug.

As far as the NSAIDS go, I only take them when absolutely necessary and then I take a low dose like 600mg or less.
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New Diagnosis 8 years 2 months ago #37678

  • 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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Hang in there, Dan. We are all pulling for you! I wish you the best.

As for meds, I'm probably a ticking time bomb, but I've taken Prednisone for seven years straight, Naproxen (1,000) mg's a day, and Advil daily, all known to cause ulcers. So far so good. Sometimes it can take a long time. I'd never get through the days without them. I have no idea how you're doing this with no meds. Torture. Have you tried Naproxen? Seems to work better for me than Ibuprofen.

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New Diagnosis 8 years 2 months ago #37684

  • DanC33
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I will look into Naproxen. I know it does last longer than ibuprofen. They also said that I can take 50 mg of Tramadol but it doesn't seem to work very well. I did just have an upper GI done and they said that everything looked good, so at least I don't have to worry about getting an ulcer yet.

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New Diagnosis 8 years 2 months ago #37688

  • 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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Tramadol never did a thing for me either. I have to have something that is an anti-inflammatory. As long as I have that, other meds like Vicodin will work in conjunction with the NSAID's.

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New Diagnosis 8 years 2 months ago #37706

  • Melinda
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Thanks Dan - I just assumed PN was treated the same, except if found that a medication was the cause.

Naproxen is a NSAID - Aleve.

Keep us posted!

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New Diagnosis 8 years 2 months ago #38020

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Sorry it's been a while since I've been on. Just had an EMG/NCS done. They said my nerves were OK :cheer: but the muscles were very weak and I have foot drop. I have never heard of that. Could Lupus cause this? or ??? They also think I have Dermatomyositis which can cause the muscle problems.

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New Diagnosis 8 years 2 months ago #38021

  • jeffrey71
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Dan,

For everything that you have been through I would say that is pretty good news. The muscle can be rebuilt, nerves not so much! I don't enough to answer the rest but I am sure that Sandi will be able to help you. I wish the best in your treatment path. Keep me posted as to your process. Nice to hear from you!

Jeff
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New Diagnosis 8 years 2 months ago #38024

  • 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:

Muscle or nerve problems can cause foot drop, which can be caused by Lupus if severe enough. It seems more likely though that if you do have Dermatomyositis, that is the cause.

It's good that your EMG came out good. Now they just have to figure out how to treat your muscles. Did they suggest a brace for your foot? Are you able to treat with any meds yet?
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