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Other Platelet Disorders

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Here we go again 7 years 4 months ago #43442

  • DanC33
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You are right. This type of drug has many potential uses, but because the FDA and the way it works it could be years before it's approved for other things. Mt doctor is still trying to see if she can get an "off label" exception for me to try this.

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Here we go again 7 years 4 months ago #43443

  • Melinda
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Would there be a trial you could look into Dan?

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Here we go again 7 years 4 months ago #43461

  • DanC33
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My Neurologist is also looking into that as well. So it's now a wait around and see what happens.

So far my pharmacist is getting nothing but the run around from every source he has. So he says he doubts that it will get approved.

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Here we go again 7 years 4 months ago #43499

  • Melinda
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I found a site one could join and it matched you with trials but now I can't find where I saved it.

It's like not giving a dehydrated person a sip of water - and heaven knows that there are lots of drugs out there used off label.

"...she did say that it works by blocking the nerve receptors in the brain, spine and nerve endings."
Boy that sounds right up a PNs alley!

From the site you posted:
shingles.emedtv.com/gralise/gralise-uses-p2.html
Shingles Home > Gralise Uses > Off-Label Indications for Gralise
•Other types of chronic pain or nerve pain, including diabetic neuropathy

What I see is "diabetic neuropathy" - if it can/could be used off label for diabetic neuropathy what about idiopathic PN? I get so ticked when everything is under "diabetic neuropathy" - diabetics are not the only ones who get neuropathy and they are not the largest group with neuropathy and I'll get off my soap box.

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Here we go again 7 years 4 months ago #43500

  • 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 agree about the diabetic neuropathy. They make it sound like it wouldn't work for anyone who didn't have diabetes.

Most of those types of drugs block nerve receptors and they're similar in function. I've tried Cymbalta, Lyrica and Savella but side effects were too bad.

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Here we go again 7 years 4 months ago #43509

  • DanC33
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Diabetic neuropathy is the current "in" thing. It seems to change every few years. But neuropathy, no matter the cause, is still neuropathy. It's all nerve pain and damage. The treatments are all based on blocking the nerve receptors. According to my pharmacist friend, they have to label drugs a specific way because the FDA requires the drug companies to do this. If it was up to the drug companies they would open things up to whoever needed the drug. More sales.

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Here we go again 7 years 4 months ago #43532

  • Melinda
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I think diabetic neuropathy was always "in" because they can put a reason to the neuropathy, and everyone knows diabetes - unlike me who once again has an idiopathic disorder, no reason no glory.

My Dad was in the pharmaceutical business, he did not like the FDA at all.

Dan there is a lady on a PN group I go to who has been on Gralise for bout a month she said - and she said: "I'm on 1200 mg. my dr told me it's an extended release neurontin it does help but I do have breakthrough pain it works for my rls I an extended release oxy at night for pain"

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Here we go again 7 years 4 months ago #43545

  • DanC33
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Well I just got the rejection letter for the Gralise. They said that "it exceeds program limits". In other words, because my neuropathy is Lupus based not shingles or diabetic they shot it down. My doctor is furious. She said to appeal it and she would back me up.

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Here we go again 7 years 4 months ago #43550

  • Melinda
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My opinion, they don’t want to pay for the drug. They are not taking into consideration that if it works you are off other meds they are paying for – but then if maybe it would still be more expensive for them w/just the Gralise. Who knows – but my bet is they are thinking of themselves.

I'd appeal - put them through the hoops, make them work for that denial!

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Here we go again 7 years 4 months ago #43564

  • DanC33
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Melinda, I think you are correct. The Gralise would still be roughly twice as much as all the other drugs that it would replace. All the other meds are generic older meds, some are less than $15.00 a month. But I will fight on!

Also I am going in for food allergy/inflammation testing. They are testing me for tomatoes/nightshades, eggs, dairy, peanuts, nuts, wheat and gluten. They said that they are looking not just for allergy response but also inflammatory response as well. The doctor said that these are the most known products for Lupus and issues. Right now the only thing that I know I have issues with is shellfish. Panda Express darn near killed me with cross contamination.

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Here we go again 7 years 4 months ago #43566

  • 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:

I have had to appeal denials for meds and won in the end. It just takes time. The co-pay was higher and that stunk, but I ended up not being able to use the drugs anyway due to side effects. Keep trying.

Avoiding those foods can help. I haven't been tested but just from eliminating them I noticed a difference. Or I should say that I notice when I eat them, inflammation gets worse.

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Here we go again 7 years 4 months ago #43591

  • DanC33
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I have talked to the manufacturer and they said they have programs to help with the cost if I can get it approved.

My nutritionist said to start avoiding those foods anyway as well. She said that these are the worst offenders for problems for most types autoimmune diseases.

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Here we go again 7 years 4 months ago #43704

  • Melinda
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Know it has only been 4 days but have you seen any improvement since avoiding those foods? I need to see what nightshades are.

Nice to know the manufacturer let you know there are programs to help with the cost - have you decided to appeal?

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Here we go again 7 years 4 months ago #43705

  • DanC33
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No real improvement as of yet, but my energy levels seem to be getting better. I'm not sure if it's the new PD med (Azilect) or the changing of diet or both. I am trying to get the appeal done but I keep getting the run around. They did say that they would approve me tripling the amount of regular Neurontin just not the Gralise. They keep saying that it's for shingles.

Also my Rheumatologist has started to try and wean me off, or at least reduce the amount of Medrol again. He wants me to reduce the amount by 2mg every 2-3 weeks. But this time I'm being monitored very closely by my PCP, she's very upset with my Rheumatologist right now because she knows everytime I try this my platelets drop and the Lupus flares. Last time I weaned down to 8mg Medrol my platelets went from over 200 to 91 and falling in just a couple weeks. My Hematologist says that 12mg is a safe level and my blood work is really good at that level so he's also watching closely. He's advising me to find a new Rheumatologist. My Rheumatologist says 12mg is too high, he says long term the side affects will be far worse than anything Lupus will do. My last CBC at 12mg showed my platelets back at 212 but my MPV was VERY low. Also my Neutrophils was very high my Lymphocytes was very low and my MCH was very high. So I'm a bit confused as to what to do.

Nightshades are all peppers, tomatoes, potatoes and eggplant. I'm sure there are others but these are the most used.

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Here we go again 7 years 4 months ago #43706

  • 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:

I have been in the same quandry with the steroids. I've taken them straight for the last 9 years. I also am not sure what does the most damage....steroids or Lupus. I started having long term problems from the steroids two years ago, and I'm not sure if it's been worth it. I've had 3 stress fractures in my feet which never quite heal. I have to walk slowly and carefully. My skin is thin. It has caused problems with my joints and has caused arthritis. Steroids can also raise the cardiovascular risk so I worry about that. Without them though, I am literally so stiff I can barely function and the pain is unreal. My muscles are so weak it's difficult to do normal daily things. I have a permanent moon face that began 2 years ago and lately weight has been a struggle. It's hard to lose it when you can't exercise at all. I am now counting calories and have a Fit Bit, I did lose 6 pounds so far...24 to go! I was on 15 mg's for a long time and my Rheumatologist convinced me to try to drop to 10 mg's. I did finally get there and she is okay with the present dose. I bump it up on really bad days.

Honestly, I'd listen to your Rheumatologist on this one. I know your GP means well, but they are not as versed with Lupus as a Rheumatologist. I'd be fine if my counts just stayed over 30k or 40k and am not happy that my counts are in the normal range; I'd prefer they were lower due to increased risk of heart attacks and strokes in Lupus patients. A platelet drop would be the least of my problems. When you have so many doctors trying to manage your care, you have to work with the specialist for each particular problem (unless they are really bad in which case you need a new specialist). Your Hemo should know that counts don't have to be in the normal range. It's funny how they all want their particular area to be managed but sometimes don't really consider the patient. All you can do is try it and see, and maybe you can even slow the taper down even more. There's no rush and slower would give your body more time to adjust.

Just my 2 cents...take it or leave it. :P
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Here we go again 7 years 4 months ago #43708

  • Melinda
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They say Gralise is for shingles - well Neurontin/Gabapentin isn't for PN but they cover it
www.nlm.nih.gov/medlineplus/druginfo/meds/a694007.html

Now me - I'd reduce the Medrol amount by 1mg every 2-3 weeks, but that's me I like slow. As I told you when I finally got off prednisone my hematologist said to just stop it, but I decreased by 1mg and then finally by .5 until off it.

I know someone who started pred when I did back in 1989 for a totally different autoimmune disorder and has not been able to get off it - the autoimmune disorder is gone but the side effect from it is not. She is a mess physically - the worst being osteoporosis and such thin skin the wounds she gets from just bumping against a cloth covered chair are horrible. The side effects of her long term use of pred are very bad.

Is the only reason your hematologist is telling you to find a new rheumatologist because he doesn't agree with the rheumatologist, that doesn't sound right. Do your doctors talk to each other? Is it right for him to tell you to find a new doctor?

Bet your head is spinning and you don't know what to think.

Thanks on the nightshades - of course I love peppers and tomatoes and eggplant - and a baked potato with everything on it or twice baked, yum! Will have to think about giving all that up :)

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Here we go again 7 years 4 months ago #43711

  • Sandi
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Night shades are hard to give up! They are all so good. I only eat them in moderation these days though and that is good enough.

Dan, I just remembered a story from a few months ago. A woman here was having some problems with her back and a few other things and couldn't get a diagnosis. She loved her GP....he always went to great lengths for her. Her prescribed Prednisone for her back and amazingly, it felt better. From that, he deduced that she must have Lupus or some other connective tissue disease and wanted her to use Methotrexate. I thought that was a very extreme measure since she had no diagnosis. I suggested she not start it until she saw a specialist. She ended seeing two; an immunologist and a rheumatologist. Both told her not to use Methotrexate since she did not have the typical symptoms or labs of a Lupus patient. I thought the problem might be a disk but her GP said Prednisone would not help that. I know for a fact that it does, because I have the same problem. Inflammation can be horrible from herniated disks.

I never did find out what the problem was because she stopped posting. She may very well end up with a Lupus diagnosis, but the point is, managing it with MTX at this stage would have been dangerous. It's chemo for goodness sakes! One of the first side effects listed is death.

I know your GP is not that radical, not even close. I do not trust my GP at all with any Lupus problems. You have to sort of take what they all say and make your own choices.
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Here we go again 7 years 4 months ago #43720

  • DanC33
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Well the problem my Hematologist has is that the last time I went down below 8mg my platelets dropped to 6 with everything that goes with platelets that low. For some reason my body just responds too well to steroids. My Rheumatologist says he'd be OK with 8mg just not overjoyed. So I'm going with what he says. He did say that I'd never be off steroids completely. Which is why he put me on Alendronate to at least slow some of the long term issues. The other problem is all my doctors use their own systems, so they end up faxing each other notes from visits. So if a visit from one doc doesn't get faxed it can create issues. As far as my PCP, she just wants what's best for me, she worries a lot.

MTX from a GP?? Really!! While steroids do reduce inflammation so the pain stops, But MTX!! My Rheumatologist tried that on me for a few weeks, but even he said that it is such a horrible drug he took me off of it. He said it's one of the most toxic of all the Lupus drugs and the benefits are minimal compared to the benefits. He'd rather use Cellcept or Rituxan.(or some other biologic)

And I slipped last night and had a friends homemade Chili Verde. It's way too good to pass up.

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Here we go again 7 years 4 months ago #43723

  • 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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Yeah, I could not believe that a GP would prescribe MTX. It blew my mind. The woman had even picked it up from the pharmacy. Thank goodness she didn't take it. I have problems from MTX that are permanent and it did absolutely nothing. I was on it for about a year and a half....9 months of pills and the rest were injections.

Steroids would reduce inflammation for herniated disks, but MTX wouldn't. He may have been giving her a toxic drug for nothing. Way over his head!

I've been on and off of both CellCept and Imuran. Neither of them seem to do anything but cause me to get infections and I stay sick for months even with multiple antibiotics. My Rheumatologist wants me back on CellCept when I see her next month. She keeps pushing it. My hands are getting worse and worse so if I knew it would help that, I'd try it, but I don't think it's going to make any difference.

I have spaghetti sauce and potatoes once in a while. The inflammation that it causes only lasts a few days. It's not like gluten where you have to start over and wait weeks for a change.

You sound like me the first few years I was on long-term Prednisone. I insisted that I needed it and would worry about the problems it caused later. Well, it's later. I still insist that I need it, but it's only going to get worse.
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Here we go again 7 years 4 months ago #43730

  • CindyAnn
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Hello - I am the one with the GP that prescribed MTX :sick: I did end up taking it for only 8 weeks - It was horrible!!! I got very sick and had to stop - that was OK by me.

I have been looking for the right specialist to help with the diagnosis/treatment and just posted on my old post about what has been going on - "lupus maybe"

www.pdsa.org/forum-sp-534/20-lupus/27871-lupus-maybe.html

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Here we go again 7 years 4 months ago #43731

  • Melinda
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Can't recall if it was MTX or Imuran the person I know was on for RA [which turned out she didn't really have] and she ended up with sepsis. Wasn't good.

Dan - what about a slower taper, think that might help keep our count up? I had fun cutting those 1mg tablets in half ;)

CindyAnn I need to go find your new post.

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Here we go again 7 years 4 months ago #43734

  • Sandi
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Cindy! I am so glad you posted! I'll go read your thread.

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Here we go again 7 years 4 months ago #43738

  • DanC33
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Woke up today with some wild pain in the knees and wrists, so the nightshades must be doing something. Or it could be I was out in the sun too long as I also have some rashes. Or it could be the tapering, I'm at 10 right now. Could be the moon phase. Or all the above. Who knows? The chili verde was worth it!
Melinda this time I am going slow with the taper. I am also going in next week for another cbc to check my levels. My PCP says that she wants a cbc a week after I drop 1mg. And if my platelets drop she'll talk to the Rheumatologist.

I took Cellcept for months and it seemed to be working OK for me. But I was taking it because my Rheumatologist thought I had CNS Lupus. I was DX with Parkinson's instead so he stopped it. But the doctors at UCSF still want me on MTX. But I agree with my local Rheumatologist, it's too toxic.

Hi Cindy, I will look at you posts. Welcome.

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Here we go again 7 years 4 months ago #43748

  • Melinda
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Dan you have made me very hungry for Mexican!

Anyone checked out this site?
www.patientslikeme.com/

I've looked around it but don't feel I want to "join"

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Here we go again 7 years 4 months ago #43809

  • 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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Neat site, Melinda. I shared it with a parent in another thread.

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Here we go again 7 years 4 months ago #43811

  • DanC33
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Melinda looks like a good site. Just looked around it and it covers a multitude of diseases.

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Here we go again 7 years 4 months ago #43819

  • Melinda
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Glad you 2 like that site - I'm leery of posting things like that, but know you would be honest with me. Like I said though, I'm not ready to join.

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Here we go again 7 years 4 months ago #43849

  • DanC33
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Not sure if I want to join either. Right now I'm this forum and the Parkinson's Foundation forum so I get plenty of info and help.

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Here we go again 7 years 4 months ago #43857

  • Melinda
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I think if you go further into the site it will tell of trials for a disease/disorder.

Lets see if this is the page
www.patientslikeme.com/clinical_trials?s

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Here we go again 7 years 4 months ago #43869

  • 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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Another good site is www.askapatient.com

That one will give you medication side effects written and described by real people. I use it all the time.

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