Welcome, Guest
Username: Password: Remember me
Other Platelet Disorders

TOPIC: Here we go again

Here we go again 4 years 11 months ago #40725

  • DanC33
  • Offline
  • Posts: 276
  • Thank you received: 11
Woke up this morning feeling like I'd been hit by a bus! Real bad headache, sores in the mouth, fevers, neuropathy acting up and a nice butterfly rash on my nose and cheeks. I was only in the sun for 30 minutes yesterday...LUPUS SUCKS!!! :angry: And no I don't mean to sound like a whiner but just when I was starting to do better, I spent too long outside.

Please Log in or Create an account to join the conversation.

Here we go again 4 years 11 months ago #40728

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12443
  • Karma: 11
  • Thank you received: 2321
Don't beat yourself up about being outside. It can hit even when you don't do anything. The weather changes do that to me and I've been feeling sick for weeks. Sometimes there's nothing you can do about it.

I saw my Rheumatologist last week and told her that the muscle and joint pain were worse than ever. It's getting really depressing. She prescribed Savella; I have not heard of that one. I read the reviews and they sound good, so I'm going to try it. Side effects are mainly sweating, heart palps and high blood pressure. I already have HBP and have hot flashes, so I don't know how that will work out, but it would be good to get rid of the parensthesis (burning skin), neuropathy, muscle pain, and flu feeling. Not sure if it will help the joint pain. I'm willing to try anything at this point because my QOL is nonexistent.

Only problem now is that insurance will not approve the drug, so we have to fight it. I have no idea when I will get it and be able to start. I've been in a flare for so long I can't even remember when I wasn't.

Hope yours doesn't last too long. Can you raise any immunosuppressant doses?
The following user(s) said Thank You: DanC33

Please Log in or Create an account to join the conversation.

Here we go again 4 years 11 months ago #40734

  • DanC33
  • Offline
  • Posts: 276
  • Thank you received: 11
I'm trying to get into my Rheumatologist but it's hard to do on short notice. I don't have an appointment till the middle of May. So I guess I'll just have to deal with it and stay out of the sun.

I've never heard of Savella. Is it new?

Please Log in or Create an account to join the conversation.

Here we go again 4 years 11 months ago #40737

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12443
  • Karma: 11
  • Thank you received: 2321
I never heard of it either. I guess it's fairly new...a couple of years. I thought I knew all of those sorts of meds. I guess it does something similar to Lyrica, without those side effects. Lyrica was a nightmare. It worked, but I got so confused I couldn't recognize my route home from work one day. It's a 10 minute drive that I've done for 17 years.

Maybe they can get you in if you call and tell them you're having a flare. My doctor will do that. I've never bothered to call though because I don't know what they can really do. Give me more immunosuppressants that I don't want to take anyway. I stopped taking Imuran because I was always sick. She wants me to start back on it and I don't know if I really want to. I'm not sure it even helped.

Please Log in or Create an account to join the conversation.

Here we go again 4 years 11 months ago #40745

  • DanC33
  • Offline
  • Posts: 276
  • Thank you received: 11
The last time I talked to the doctor he said if it flared again he was going to put me back on Cellcept. I did very well on that except the gastro intestinal issues.

I did some checking on Savella, it says on it's website that it's only approved by the FDA for Fibromyalgia(which probably why your insurance is fighting you). And the side effects are too numerous to count. So be careful with that drug.

Please Log in or Create an account to join the conversation.

Here we go again 4 years 11 months ago #40747

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12443
  • Karma: 11
  • Thank you received: 2321
All of them have side effects too numerous to count. My symptoms are very similar to fibromyalgia and I never quite knew if I have that or Lupus myalgia. I guess it really doesn't matter, but I do think it's more Lupus related because there seems to be inflammation involved. Prednisone helps but so did Lyrica, so who knows. A lot of Lupus patients have fibro, so I don't know why an insurance company would deny a drug like that. I think it has more to do with the fact that it is fairly new and expensive. I've been denied meds before, both Cymbalta and Lyrica and they eventually got approved. I ended up not taking them for more than a month anyway.

I've read the patient reviews and some people have said it turned their life around. I keep waiting for something that does that instead of causing more problems.

Maybe you need CellCept again. I've tried that one, didn't help.
The following user(s) said Thank You: DanC33

Please Log in or Create an account to join the conversation.

Here we go again 4 years 11 months ago #40762

  • DanC33
  • Offline
  • Posts: 276
  • Thank you received: 11
Cellcept worked very well for me. I'm still not sure why I was taken off it. But then again I still have doubts about the abilities of my current Rheumatologist.

If you can get on the Savella I hope it works. Because I you've tried everything.

Please Log in or Create an account to join the conversation.

Here we go again 4 years 11 months ago #40767

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12443
  • Karma: 11
  • Thank you received: 2321
Ha, I thought I had tried everything until Savella. Still not approved by insurance. My Pharmacist just ran it through again. Ridiculous.

I don't know, Dan. I've had six or seven Rheumatologists in 8 years. Some of them were aggressive treaters and some were not. I cannot say that I improved any with the aggressive treaters, in fact, I ended up with more problems. MTX caused restrictive lung disease and a lung nodule which has left me with shortness of breath. It also caused irritable bowel syndrome which I never had before. It didn't do anything to help the joints in my hands which is why I used it in the first place. I was on it for a year, and I am still losing use. I drop things constantly and break a glass every time I load the dishwasher. It's hard to pick things up. Both CellCept and Imuran made me susceptible to bronchitis and pneumonia and I have lung damage from that. I think I'm done with the immunosuppressants. I've read other people's stories and some people do great. Not me! You might.

For now, I just need something that will mask symptoms. I'll take that. I'd just be happy to not have to drag myself around every day. Just doing a load of laundry can be overwhelming. It's the darn flu feeling and weakness that gets to me. Since my Mom broke her hip in January and I've had to help her, I have been so stressed out and am totally worn down. I can't do it.

Have you called your doctor?

Please Log in or Create an account to join the conversation.

Here we go again 4 years 11 months ago #40791

  • DanC33
  • Offline
  • Posts: 276
  • Thank you received: 11
I can't get in till May. Unfortunately he only sees Medicaid/Medicare patients once a month in a special clinic for low income that's run by the hospital. He has encouraged me to find another Rheumatologist if I can, not because he doesn't want to keep me as a patient but because I need to be able to get in when I need not when the clinic is open.

You might try calling the manufacturer of Savella and see if they have any programs to help. I have a friend with lymphoma and his insurance didn't approve him getting Rituxan which is what that drug was originally meant for. He called and they went to bat with his insurance and he eventually got it approved. So just a thought.

Please Log in or Create an account to join the conversation.

Here we go again 4 years 11 months ago #40792

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12443
  • Karma: 11
  • Thank you received: 2321
My doctors office is fighting it. They called me yesterday. I'm sure it will just be one more drug that I take for a few days or weeks then scrap it. I'm not in any hurry. I've been denied Cymbalta and Lyrica in the past. After all the fighting for it, they were both approved until 2099. I'd be 137 years old. Anyway, I only took them for a short time and the side effects got to be too much.

That's a shame about your Rheumatologist. You have to travel to see him because he was supposedly a good one, right? They are hard to find.

It's scary when a drug for cancer is denied, especially Rituxan! That one is used ALL the time for so many things!

Please Log in or Create an account to join the conversation.

Here we go again 4 years 11 months ago #40801

  • DanC33
  • Offline
  • Posts: 276
  • Thank you received: 11
My current Rheumatologist is very nice. He listens to what I have to say. And yes I do travel to California to see him. The biggest problem is that he seems a little unsure of what to make of me because of the dual DX of Lupus and Parkinson's. There's some overlap of symptoms that he's never had to deal with so it's trial and error. He's even thinking that I might have CNS Lupus because of all the weird problems that I have in addition to regular Lupus. Like now I have to be on oxygen all the time, went from obstructive apnea to central apnea, the muscle weakness and neuropathy. He said that all of these symptoms point to CNS. But some of them are also part of PD so all of my doctors are very perplexed with me.

All the insurance companies care about is the bottom line. Drugs like Rituxan, Cymbalta ect... are all very expensive drugs so they will fight it if they think they can get away with it. But it sounds like you don't do very well on biologics so you may be right.

If you live to 137 CALL GUINESS!!

Please Log in or Create an account to join the conversation.

Here we go again 4 years 11 months ago #40802

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12443
  • Karma: 11
  • Thank you received: 2321
I can understand why they wouldn't know what to do with you. The symptoms do overlap so much that you wonder if they even got the diagnoses right. If you do have CNS, they should probably be treating more aggressively. I've never heard of Parkinson's progressing that fast.

I've found that when you have Lupus, every single thing that goes wrong is blamed on that and they don't look for other causes. It gets passed off and blown off and nothing ever gets better. I never even know the difference between being sick or having a Lupus flare. It's always one or the other.

Please Log in or Create an account to join the conversation.

Here we go again 4 years 11 months ago #40803

  • DanC33
  • Offline
  • Posts: 276
  • Thank you received: 11
My Neurologist says that it will be 5-8 years before Parkinson's starts having major affects. He thinks that because I have some serious swelling in my joints when I flare that he says the nerves and blood vessels get pinched and can cause problems.

I agree, most doctors want to blame everything on Lupus. I have a cold they blame it Lupus. I wonder if we went in with a nail sticking out of my forehead if they would blame that on Lupus?

Please Log in or Create an account to join the conversation.

Here we go again 4 years 11 months ago #40804

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12443
  • Karma: 11
  • Thank you received: 2321

DanC33 wrote: My Neurologist says that it will be 5-8 years before Parkinson's starts having major affects.


If that's true, then Lupus seems to be what is causing most of your mobility/breathing problems and they should be working on that. CNS can usually be reversed or stopped if it's treated promptly. I can't imagine how frustrating that would be.

As for the nail, ha, probably.
The following user(s) said Thank You: DanC33

Please Log in or Create an account to join the conversation.

Here we go again 4 years 11 months ago #40810

  • RHofm50129
  • Offline
  • Posts: 266
  • Thank you received: 10
I feel so bad that you are having such continuous problems. It seems to me that whatever drug they give you causes more problems even if it cures what they give it to you for! The body is in such a fine balance that altering one thing alters a half dozen more.
The following user(s) said Thank You: DanC33

Please Log in or Create an account to join the conversation.

Here we go again 4 years 11 months ago #40863

  • DanC33
  • Offline
  • Posts: 276
  • Thank you received: 11
I talked to my Neurologist and he said that he will talk to my Rheumatologist about the possibility of CNS. So at this point who knows.

Please Log in or Create an account to join the conversation.

Here we go again 4 years 11 months ago #40865

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12443
  • Karma: 11
  • Thank you received: 2321
That's a great start! I'm glad to hear that.

Please Log in or Create an account to join the conversation.

Here we go again 4 years 10 months ago #41033

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12443
  • Karma: 11
  • Thank you received: 2321
Hey Dan, how goes it? Any news?

I finally got Savella and started it. I'm on the third day. It comes in a titration pack. So far, no improvement, but no real side effects either. Muscle/joint pain is at it's worst the past two weeks and I could really use a break. It wouldn't be so bad if I could just stay home and be miserable but my Mom is keeping me busy with her hair appointments and such. I don't even go out and get my own hair done when I feel like this, it's getting frustrating. I wake up dreading getting through the days. I'd be happy if I never had to go anywhere. You wonder how you can feel so sick and still be alive.

I never thought of Lupus as a progressive disorder, but for me, it has been. Part of it has been the treatments that have caused damage. My Rheumatologist wants me to go back on Imuran and I'm afraid. Too many pills.

Please Log in or Create an account to join the conversation.

Here we go again 4 years 10 months ago #41100

  • DanC33
  • Offline
  • Posts: 276
  • Thank you received: 11
Sorry I have not been on in a while. I have been in and out of the ER with abdominal pain. The ER in my new town is fantastic! They said that I am having a problem with neuropathy in my internal organs. My gallbladder has to be removed as it is no longer functioning(no stones just failed) and I also have a catheter because my bladder also stopped working. They are not sure if it is Lupus or Parkinson's. But at this point it doesn't matter.

I hope the Savella works, maybe it just needs some time. I know you've been through a lot! So hopefully you get something that works. And yes Lupus can be progressive, my Rheumatologist says that some people only get a little rash/fatigue ect.. Then some of us get what he called monster Lupus. It seems that those people tend to have more aggressive flares and more often affecting more body systems.

Please Log in or Create an account to join the conversation.

Here we go again 4 years 10 months ago #41117

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12443
  • Karma: 11
  • Thank you received: 2321
Sorry to hear about all of that, Dan. You sure have your hands full. I hope things improve for you soon and I'm glad you like the ER. I don't have much trust in the ER when it comes to Lupus.

Please Log in or Create an account to join the conversation.

Here we go again 4 years 10 months ago #41135

  • Melinda
  • Melinda's Avatar
Dan I'm really sorry to hear what you have been going through recently! Do you know if what is going on with your bladder will improve or will it continue to not work? Bless you!

I did know that Lupus was progressive thanks to a friend's sister. But I didn't know that neuropathy could hit internal organs.

Take care - thinking of you!

Sandi my understanding is it can take a bit before any relief is felt once starting treatment with Savella/Milnacipran. It is similar to Effexor [generic: Venlafaxine] my neurologist suggested for my PN. Hope it does give you some help!

Please Log in or Create an account to join the conversation.

Here we go again 4 years 10 months ago #41142

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12443
  • Karma: 11
  • Thank you received: 2321
Thanks, Melinda. You haven't tried Savella then? I'll let you know about side effects in case you decide to try it. So far, I'm not noticing any and I hit the max dose.

Please Log in or Create an account to join the conversation.

Here we go again 4 years 10 months ago #41143

  • Melinda
  • Melinda's Avatar
Couldn't try it because it isn't generic yet - would cost me a fortune. But you know me, I hate meds and I told my neurologist I don't care to try Effexor at this time - I don't want a med that could cause more problems then I already have.

Fingers crossed this max dose will kick in Sandi and help you!! Do keep me posted!

Please Log in or Create an account to join the conversation.

Here we go again 4 years 10 months ago #41147

  • DanC33
  • Offline
  • Posts: 276
  • Thank you received: 11
Talked to the doctor about the HIDA scan that was done and he said that my gallbladder is only functioning at less than 8%. He is going to call my Rheumatologist and see if he thinks removal is a good idea because if it's Lupus related they might consider starting stronger immunosuppressive drugs.(same goes for the bladder) He also is doing an endoscopy on Wednesday to see if there's anything else going on.
As far as this ER goes, the floor doctor started calling other Rheumatologists and Neurologists BEFORE he started anything. He didn't want to make me worse than I was. He was also very compassionate and even was checking in on my wife while I was getting am ultrasound and a barium swallow done.

Sandi I really hope this new drug works for you, really glad to hear that you are not having any side affects. And I hope you've had some rest I know you've been handling a lot with your mom.

Melinda Lupus based neuropathy can hit anywhere there is a nerve, organs included. As I've said before (and I'm sure Sandi would agree) Lupus sucks!

Please Log in or Create an account to join the conversation.

Here we go again 4 years 10 months ago #41148

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12443
  • Karma: 11
  • Thank you received: 2321
Melinda - it is expensive. My co-pay is $45. Not too bad, but when added to my other co-pays, adds up to a small fortune every month.

From what I've read, a person can have neuropathy anywhere in the body where there are nerves. My dog recently jumped on me and pushed on my breast. For two months now, I've had weird sensations such as burning and stabbing on that side. I looked it up and read that you can even have neuropathy in the breast. I'm not sure if that is what is going on, but it obviously jump started some sort of inflammation. Weird.

I'm glad the ER doctor didn't try to pretend that he knew what was going on. A friend of mine with Lupus nearly died a few times because the ER doctors were clueless. She had to tell them what to look for. I've been misdiagnosed by an ER doctor who wouldn't listen to me and it caused a permanent problem. People with Lupus can have the strangest things hit out of the blue which can be very serious if not properly treated. I hope you get the right help, Dan, and soon!
The following user(s) said Thank You: DanC33

Please Log in or Create an account to join the conversation.

Here we go again 4 years 10 months ago #41214

  • Melinda
  • Melinda's Avatar
Where ever there's a nerve I guess there would be a chance of neuropathy. It's the pits for sure!

My co-pay would be a lot more Sandi since it isn't generic or in the formulary. Keep me posted though as to how you are doing with it!

Hope you endoscopy went well Dan!

Please Log in or Create an account to join the conversation.

Here we go again 4 years 10 months ago #41216

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12443
  • Karma: 11
  • Thank you received: 2321
Melinda - it's not on my formulary either and it was initially turned down by my insurance company. They wouldn't cover it. My doctor appealed and they did agree to cover it at the highest co-pay. This is the third drug I've had to appeal over the years. They always have ended up covering the drug on appeal. I didn't take the other two for very long...they were Cymbalta and Lyrica.

As for Savella, still no side effects that I can detect. Muscle pain has not been as severe the past few days but that changes with the weather and other factors, so I'm not sure if it's the drug or just the way things would have been anyway. I did have burning skin (parensthesis) for a few days when it was colder out and Savella should have helped that. I need to give it more time I guess.

Please Log in or Create an account to join the conversation.

Here we go again 4 years 10 months ago #41259

  • DanC33
  • Offline
  • Posts: 276
  • Thank you received: 11
Sandi it sounds like it may be working at least a little. And I have the same issues getting drugs approved. Usually my MD will call and make a case for it and I get approved. I hope it continues to work for you.

I had my endoscopy done and they found some lesions in my stomach and esophagus. They say it could be steroid related because of the long term use. Never heard of that. They did take some biopsies but I won't get the results till next week. And after speaking to my Neurologist, they are pretty sure everything that's going on is Lupus related.

Please Log in or Create an account to join the conversation.

Here we go again 4 years 10 months ago #41263

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12443
  • Karma: 11
  • Thank you received: 2321
It sounds like you need to be treated a bit more aggressively. I hope things level out for you soon. I've never heard of steroid induced lesions either. How long were you on Prednisone?

Please Log in or Create an account to join the conversation.

Here we go again 4 years 10 months ago #41278

  • DanC33
  • Offline
  • Posts: 276
  • Thank you received: 11
I have been on steroids of one sort or another for about 4.5 years. Everytime they have tried to wean me off of them my platelets tank. And I am going to my Rheumatologist next week so I will talk to him about it. I also am going in for gallbladder removal on Wednesday.

Please Log in or Create an account to join the conversation.

BBB Cleveland logo GuideStar Seal NORD Member Badge 2018THSNA logo