- Posts: 1353
- Thank you received: 167
!!! DISCUSSION GROUP RULES !!!
1. You must be a registered website user in order to post and comment. Guests may read only.
2. Be kind and helpful, not rude and cynical.
3. Don't advertise or promote anything. You will be banned from the group.
4. Report problems to the moderators. THANK YOU!
Blame it on Lupus?
- eklein
- Offline
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
Please Log in or Create an account to join the conversation.
- Sandi
- Topic Author
- Offline
- Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
- Posts: 12436
- Thank you received: 2377
Please Log in or Create an account to join the conversation.
- Sandi
- Topic Author
- Offline
- Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
- Posts: 12436
- Thank you received: 2377
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.
Please Log in or Create an account to join the conversation.
- Sandi
- Topic Author
- Offline
- Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
- Posts: 12436
- Thank you received: 2377
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.
Please Log in or Create an account to join the conversation.
- DanC33
- Offline
- Posts: 276
- Thank you received: 11
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)
Please Log in or Create an account to join the conversation.
- Sandi
- Topic Author
- Offline
- Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
- Posts: 12436
- Thank you received: 2377
Please Log in or Create an account to join the conversation.
- DanC33
- Offline
- Posts: 276
- Thank you received: 11
Please Log in or Create an account to join the conversation.
- Sandi
- Topic Author
- Offline
- Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
- Posts: 12436
- Thank you received: 2377
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).
Please Log in or Create an account to join the conversation.
- Sandi
- Topic Author
- Offline
- Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
- Posts: 12436
- Thank you received: 2377
Please Log in or Create an account to join the conversation.
- DanC33
- Offline
- Posts: 276
- Thank you received: 11
Please Log in or Create an account to join the conversation.
- Sandi
- Topic Author
- Offline
- Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
- Posts: 12436
- Thank you received: 2377
:woohoo: :woohoo: :woohoo: :woohoo: :woohoo: :woohoo: :woohoo: :woohoo: :blink:
Please Log in or Create an account to join the conversation.
- Sandi
- Topic Author
- Offline
- Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
- Posts: 12436
- Thank you received: 2377
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.
Please Log in or Create an account to join the conversation.
(I'm sorry about your hands/forearms Sandi]
Please Log in or Create an account to join the conversation.
- DanC33
- Offline
- Posts: 276
- Thank you received: 11
Have fun with your family!!!
Going on vacation so wont be on till next Monday..
Please Log in or Create an account to join the conversation.
- Sandi
- Topic Author
- Offline
- Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
- Posts: 12436
- Thank you received: 2377
I have the balls but have problems using them too.
Please Log in or Create an account to join the conversation.
Please Log in or Create an account to join the conversation.
- mac
- Offline
- Posts: 104
- Thank you received: 11
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???
Please Log in or Create an account to join the conversation.
- Rob16
- Offline
- Posts: 1127
- Thank you received: 276
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
Please Log in or Create an account to join the conversation.
- mac
- Offline
- Posts: 104
- Thank you received: 11
Please Log in or Create an account to join the conversation.
- Sandi
- Topic Author
- Offline
- Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
- Posts: 12436
- Thank you received: 2377
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!
Please Log in or Create an account to join the conversation.
- Rob16
- Offline
- Posts: 1127
- Thank you received: 276
I hope your mom gets some answers soon. It sounds really miserable.
Please Log in or Create an account to join the conversation.
Hope your Mom can get an answer soon as to why the itching - she must be miserable!
Please Log in or Create an account to join the conversation.
- mac
- Offline
- Posts: 104
- Thank you received: 11
Please Log in or Create an account to join the conversation.
- Sandi
- Topic Author
- Offline
- Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
- Posts: 12436
- Thank you received: 2377
Please Log in or Create an account to join the conversation.
- mac
- Offline
- Posts: 104
- Thank you received: 11
Please Log in or Create an account to join the conversation.
- Sandi
- Topic Author
- Offline
- Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
- Posts: 12436
- Thank you received: 2377
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.
Please Log in or Create an account to join the conversation.
- mac
- Offline
- Posts: 104
- Thank you received: 11
Please Log in or Create an account to join the conversation.
- Sandi
- Topic Author
- Offline
- Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
- Posts: 12436
- Thank you received: 2377
Please Log in or Create an account to join the conversation.
Oh, there was a lady at my exercise class who said she would share some of her medical marijuana with me but I declined.
Please Log in or Create an account to join the conversation.
- Sandi
- Topic Author
- Offline
- Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
- Posts: 12436
- Thank you received: 2377
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.
Please Log in or Create an account to join the conversation.
Stay Informed
IMPORTANT!
The Platelet Disorder Support Association does not provide medical advice or endorse any medication, vitamins or herbs. The information contained herein is not intended nor implied to be a substitute for professional medical advice and is provided for educational purposes only. Always seek the advice of your physician or other qualified healthcare provider before starting any new treatment, discontinuing an existing treatment and to discuss any questions you may have regarding your unique medical condition.
Platelet Disorder Support Association
8751 Brecksville Road, Suite 150, Cleveland, Ohio 44141
Phone: 1-87-PLATELET | 877-528-3538 (toll free) | or 440-746-9003
E-mail: pdsa@pdsa.org
© Copyright 1997 - 2024, Platelet Disorder Support Association. All rights reserved.
The Platelet Disorder Support Association is a 501(c)3 organization and donations are tax deductible to the fullest extent allowed by law.