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Other Platelet Disorders

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Here we go again 7 years 4 months ago #43882

  • DanC33
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Good site Sandi. I will put that in my favorites because they are always putting me on something new.

Melinda, that site does have really good list of things. I also saved that one, may not join but at least it's good to look around.

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Here we go again 7 years 4 months ago #43896

  • Melinda
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Good site Sandi - I found the Lyrica responses interesting, that is the drug my neurologist told me he would not recommend.

Glad you found that section interesting Dan.

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Here we go again 7 years 3 months ago #44091

  • DanC33
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Sorry I haven't been on in a while. Here's an update.

Just got through with an allergist who checked to see if I have any allergies to any of the inflammatory things that we talked about.(i.e. tomatoes, wheat ect..) They all came back negative. But he did say that because people with Lupus are very prone to wheat and gluten issues he said to try and avoid those anyway. He said they cause serious inflammation in the gut not from an allergic response but because our bodies break these down differently than regular people. He also mentioned a book called The Wheat Belly Diet, he said it has the best explanation of why all this is happening. He also said it's written by a doctor.

Melinda, my Pharmacist just recommended Lyrica to me because I am still getting denied on the Gralise. He said that I have a greater chance of being approved for this because it's for neuropathy not shingles. But after reading the reviews I will stick to the Neurontin even if it's the regular kind.

I am still at 10mg on the Medrol, and I'm starting to have a major flare. My knees are the size of cantaloupes and I have rashes, hair loss, fevers/chills and mouth sores. I'm going in today for a CBC and chem panel to see if at least my platelets are holding. My rheumatologist wants me at 8mg but I'm in tremendous pain not sure if I can get there.

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Here we go again 7 years 3 months ago #44093

  • 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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Stay away from Lyrica! That drug was wicked. It worked really well for me, I loved it at first. It was the first time I didn't feel like I had the flu in years. Muscles felt great! After a few weeks, the side effects got scary. I was driving home from work which I've done 10,000 times... a ten minute drive. I didn't recognize where I was. I was sleeping in for work and was confused all the time. I decided to quit the drug and the day I stopped was the worst day of my life. I thought I was going to die and couldn't get out of bed. I'm one that pushes myself to the limit, but couldn't move that day. Horrible.

You might not get to your target dose with the Medrol. I can't go any lower for the same reasons.

I agree about the foods. I wouldn't expect to have many allergies to foods (although I have had some food allergies since I was 16). I also think that people like us do not absorb vitamins from foods very well. I always have low vitamin levels and take a lot of supplements for that. I have been trying to eat a lot better the past few weeks, avoiding gluten and nightshades. I thought it was going well until the past few days. Got hit again with massive flu-like symptoms and am not sleeping. I wake up in the middle of the night achy and feeling sick. That's been going on for over a year and I'm getting tired of it. Nothing works so I can sleep through the night. I miss sleep.

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Here we go again 7 years 3 months ago #44099

  • Melinda
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Dan, my most wonderful, now retired :( , neurologist told me Lyrica is one he'd never recommend for me - I didn't ask why, just trusted him, so I don't know if he said that because of my ITP or he just didn't like the drug or what. I did go home and read up on it and told myself there is NO WAY I would have taken Lyrica!

All right - glad the test for delicious tomatoes etc came back negative! Sorry about what the allergist said about wheat/gluten - but there are so many products out there that are gluten free you should do ok.

Not good news about your flare - hopefully it won't last long, as I said I don't know much about lupus [you know I am tired of giving all these disorders/diseases/conditions dignity by using a L or a C, nope they don't deserve it so lupus it is, cancer it is, parkinson's it is etc].

Good luck with the platelet count. Mine was done last week and I'll take the 95k it turned out to be.

Sandi, I'm sorry you are having such problems - is that due to your lupus?

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Here we go again 7 years 3 months ago #44103

  • 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'd imagine so, Melinda, but the doctors don't know. You tell them symptoms and all you get is a shrug. They don't tend to do testing on Lupus patients (unless the symptoms seem life-threatening); they just assume all symptoms are related so you never really find out what is going on.

I had a similar problem years ago when I had RLS. It wasn't just my legs though, my whole body felt achy and crawly and I was only getting about 3 or 4 hours of sleep a night. That was when I was still working too, and it lasted for two years. The Neurologist said it was related to the neuropathy and the Rheumatologist kept trying to get me to take anti-depressants. I was frustrated and no one could or would help.

Anyway, I had a random ferritin test done and the result was low. I decided to look up the symptoms of low ferritin and whadaddya know, RLS was a symptom. I started taking iron and within two weeks, it was completely gone. Had to solve that myself.

This is a little different, but just as miserable. When the ferritin was low, I couldn't get to sleep. Now I can get to sleep (usually around midnight), but wake up around 3 or 4 in the morning and can't get back to sleep. I end up just staying up. The achiness is unreal and I also feel creepy crawly. And one other weird thing, my bladder feels a lot of pressure even after I go. I'm taking iron and that isn't helping this time. I'm always so tired I feel like a zombie. Frustrating!

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Here we go again 7 years 3 months ago #44104

  • Melinda
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Sandi I just can't imagine what you are going through - that is horrible. Not to mention that our bodies need sleep to heal (I don't sleep much or well either but get more than you do). You would think they could get to the bottom of this, or at least try. Bless your heart!

Your ferritin is ok? Magnesium?

Your bladder - have you seen a urologist? I know, I know - we have enough ists in our lives but maybe he/she might have an answer for the pressure you feel. [guess who just got another ist, yep me and it's a urologist]

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Here we go again 7 years 3 months ago #44106

  • DanC33
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Sandi, I am going to stay far away from Lyrica. I've read some horror stories about that drug!!! I'm surprised that the FDA approved such a horrid drug.

And Melinda is right, sleep is where our brains defrag themselves and our bodies try to make repairs. I don't sleep much either, so if you find something that works let me know! Tequila maybe?

I just started seeing a Urologist about bladder issues, he said Lupus can cause a neurogenic bladder(?)

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Here we go again 7 years 3 months ago #44107

  • 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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Yes, I know, I should see a Urologist. I also have to see a Gastroenterologist for a scope. Don't feel like doing any of it.

I'd drink some liquor if I could! I once told a doctor I was going to hit myself over the head with a brick so I could get some sleep. She didn't respond.

Melinda:

I see the Rheumatologist in a few weeks and will have everything tested. I have been taking good supplements every day so I'd be surprised if levels were low. I thought that about Vitamin D once too though and it was very low. Never know!

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Here we go again 7 years 3 months ago #44118

  • Melinda
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Sandi you take naproxen? Do they test your kidney values - have a friend who was taking it daily and her kidney values went way up, her doctor won't let her take it any more.

Of course you don't feel like adding any new ists to the list of doctors seen - but get thee to a urologist (and I'm known as a hard-head - you fit in there with me :) )

Dan I'll take a Shiner Bock - Tequila I don't like.

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Here we go again 7 years 3 months ago #44128

  • 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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Melinda:

I get a full comprehensive panel done every three months. They always check kidneys and liver, especially since Lupus can cause kidney damage and the meds cause liver damage. I've always been in normal ranges.

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Here we go again 7 years 3 months ago #44130

  • Melinda
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Glad to hear that Sandi!!

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Here we go again 7 years 3 months ago #44138

  • DanC33
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Sandi, I'm not allowed to drink either, I think they are afraid my liver might keel over from all the meds I take. I have started trying Melatonin at night and so far it really hasn't done much because I'm typing this at 4:00am. Went to bed at around 10:30 up at 2:15.

I also just got back from my Urologist and he ordered a cystoscopy for me he thinks Lupus is affecting my bladder because that stupid UTI won't go away. Sandi, when did we sign up for this merry go round? And I think I'm running out of veins for them to poke! They now have me going in an average of every 3-4 weeks for blood work.

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Here we go again 7 years 3 months ago #44141

  • 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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Ha, I never signed up for it! I have much better things to do!

I was just talking about a sleeping pill called Somnipure the other day. It has malatonin in it. Erica pointed out though that melatonin is contraindicated with autoimmune disorders, especially Lupus. It was #5 on the list of things to avoid. You might want to research that.

Is it truly a urinary tract infection or is it inflammation? The symptoms can be the same.
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Here we go again 7 years 3 months ago #44144

  • Melinda
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Sometimes I think I got in the wrong line when parts & systems were being passed out. Then I think why did my parents do this to me, I was their favorite ;) I also tell my younger and older sister they should be so thankful for me because I get it all and they don't - think the worse thing either of my sisters has is high cholesterol and a statin is taking care of that for her.

Had a cystoscopy not long ago - wasn't bad at all, and was interesting to watch on the screen. God love you Dan, blood work that many times a week would take its toll.

Never did like what I'd read about melatonin so never tried it. Interesting it is on the "avoid" list for those with lupus, and autoimmune disorders.

You 2 take care!!

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Here we go again 7 years 3 months ago #44158

  • DanC33
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They're not sure if it's inflammation or a real UTI, I guess that's why the cystoscopy. I'm also going in for a CT of the kidneys and pelvis because my protein levels are rising.

I haven't looked into the melatonin with lupus, I will research that asap. Thanks for the tip.

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Here we go again 7 years 3 months ago #44205

  • DanC33
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Good news! My Neurologist finally got the Gralise approved. I'm on day 2 and so far no side affects but I haven't noticed if it's working or not. It has to be titrated starting at 300 then over 15 days it ends up at 1800mg. That's the equivalent of 3600mg of regular Neurontin. And I've stopped the melatonin.

Also my urologist said that me last urine check was clean so now he's sure there's something wrong with my bladder or kidney's.
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Here we go again 7 years 3 months ago #44212

  • 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 with Gralise and let me know know it goes. I had to stop Savella, too many side effects. I started and stopped it twice, just to be sure. I hope it works for you.

I didn't think you had an infection. Hopefully, they can fix whatever is going on.

I have something new going on that I do not even want to deal with. Can't seem to eat lately.

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Here we go again 7 years 3 months ago #44217

  • Melinda
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Dan when do you have the abdominal/pelvic CAT? It would be with dye right?

Good luck with the Gralise from me too - great your neurologist hung in there and got it approved for you. 300 is a low dose so that's probably why you don't know if it is working or not - once you get to the higher dose you'll be able to tell and my fingers are crossed it does!

Know you will keep us posted!

Sandi I too have something I do not want to deal with - but the consequences of me not dealing with it would be dire so I am. Would you please deal with your "going on" too?!
(Think you and I need to make a deal not to be so darn hard-headed :) )

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Here we go again 7 years 3 months ago #44246

  • 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 know, Melinda. I'm pretty sure I have a peptic ulcer from years of steroids and NSAID's. I expected it at some point. Yes, not dealing with it could result in death. I have it in my head to call my primary today, so we'll see if I actually do.

You'd better deal with yours too!

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Here we go again 7 years 3 months ago #44248

  • Melinda
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SANDI CALL YOUR PRIMARY TODAY

I yelled at you ;)

I am taking care of mine, waiting for some tests - so you need to do the same, ok?!

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Here we go again 7 years 3 months ago #44272

  • 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 heard you! ;) Maybe I'll call today.

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Here we go again 7 years 3 months ago #44273

  • DanC33
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Sandi, I know your sick of doctor visits, but Melinda is right. You should go ASAP.

Melinda I'm going in Nov 2 for the scan of the kidneys/pelvic area. And yes they are doing it with dye. I hope they don't find anything else, I'm not sure how much more I can deal with.

And now it's day 4 of the Gralise, it's now up to 600mg(plus I'm still taking the standard Neurontin while I titrate up) So far still no side affects but I'm starting to get less of the pins and needles in my legs. Nothing on my hands though, she says that it may not help much with them because of the Raynaud's.

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Here we go again 7 years 3 months ago #44281

  • 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 they don't find anything else either, Dan. You've had more than your fair share to deal with and in such a short time. That's a long wait for the scan.

I'm glad Gralise is working for you so far. I'm interested to see how it goes.

I know, I need to call but I'm also so sick of dealing with all of this crap. I don't want to add two more 'ologists' to my list and I do not want an endoscopy. I know, I sound like a child. The best treatment for a peptic ulcer is to stop the offending drugs and I can't do that, so I don't know what other options there are.

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Here we go again 7 years 3 months ago #44292

  • DanC33
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I know exactly how you feel, but if it wasn't for the endoscopy I had they wouldn't have found the lesions in my stomach. They added Protonix 2x daily because of all the acid erosion from the meds.(predominantly the Medrol)

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Here we go again 7 years 3 months ago #44294

  • 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'm already on a proton pump inhibitor and have had GERD for 17 years. I'm sure it's a mess in there. I just don't want to know.

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Here we go again 7 years 3 months ago #44295

  • 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 don't remember if you take Vicodin or Norco, but have you seen this? New law regarding refills. This is sure going to be a pain in the ass.

www.koco.com/news/new-rules-make-hydrocodone-painkiller-prescriptions-harder-to-refill/29002078

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Here we go again 7 years 3 months ago #44302

  • Melinda
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In my state they have been reporting to the state for a while now when one gets a prescription for a narcotic drug [the Percocet I got after right thumb surgery 9/2013 was reported]. And now they are making it a crime [it seems like] to all those who have chronic pain to be taking med to relieve that pain. The Tramadol I was given [only took 1] last month when the FCR tendon in my lower arm ruptured is reported too.

Sandi I take prescription Prilosec time release.

Fingers are crossed Dan you CAT come back looking perfect! So glad the Gralise is working, that is super!

Ohhhhhh Saaaaandiiiii - did you call yet?????????????????????????

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Here we go again 7 years 3 months ago #44319

  • DanC33
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Sandi, I take Norco on some days I can't move without it. I'm not sure how I'm going to handle this. All of my doctors are out of town, by at least 70 miles. So this new idiotic law is going to be a major pain in the ass.

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Here we go again 7 years 3 months ago #44323

  • 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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Melinda....Noooooooo, I didn't. Maybe today. :blush:

Dan - I take 4 Norco a day. Although they allow the doctor to write up to three refills, that means either an extra trip to the pharmacy to hand it to them or waiting for the script to be filled. Not too much of a big deal, just a time waster. Also, you have to be sure that you get your appointments in before the three month scripts expire which does not always happen in busy offices. I get rescheduled all the time due to scheduling conflicts and end up waiting an extra month. I'm horrible with trying to keep up with all the refills as it is and it's not like you can just do without this drug if something slips through the cracks. Drug abusers will still find a way to get the drug. All this does is make it harder for those who really need it.

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