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Other Platelet Disorders

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Here we go again 7 years 3 months ago #44369

  • DanC33
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I have an appointment with my Rheumatologist on the 24th,so I will talk to him about how he wants to handle refills.

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Here we go again 7 years 3 months ago #44375

  • 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 go on the 21st. I'll let you know how it goes for me.
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Here we go again 7 years 3 months ago #44481

  • DanC33
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Just got back from my allergist, he's putting me on a strict no wheat diet. He says that I don't have an allergy to it, it's just making my Lupus symptoms go crazy. He also said to limit all the nightshades as we've discussed. And because I take an MAOI inhibitor I can't eat anything aged, not even leftovers. So back to my nutritionist I go.

I did ask him about the new laws on pain meds. He said most of the doctors that he's associated with just write 1 prescription a month for how ever long they want you on it(they date it for each month) Then when it's time to refill you have the have written copy available. He said that this is the dumbest law he's ever seen.

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Here we go again 7 years 3 months ago #44483

  • Sandi
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I do believe there is something to that diet. I am pretty much doing it now. You're lucky to have found someone who believes that gluten can be a problem without actually having Celiac's. Most think it's a crock.

I didn't understand what you said about the meds....the doctors write one script a month? I thought they could write three separate scripts at a time (so you'd have to see them once at least every three months).

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Here we go again 7 years 3 months ago #44524

  • DanC33
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They just write a script for each 3 months so you don't have to keep going in.

Also I had another fall with a concussion. I got to spend all day yesterday in the ER.

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Here we go again 7 years 3 months ago #44525

  • 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, I knew that. That's fine if they can fit you in every three months exactly. Sometimes my Rheumatologist is too booked and it's 3 1/2 or 4 months.

Sorry about the fall. I hope you're okay.

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Here we go again 7 years 3 months ago #44571

  • Melinda
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Dan how are you doing?? That's scary - hope you are all right!!

You probably haven't seen my thread in social - I fell but not because of anything physical, dear Mother Nature had some leaves fall over a good size rock & couldn't see it when walking to/by my car, foot stepped on it & down I went - have a huge bruise on my hip and a broken foot. After thumb surgery I had 2 weeks of freedom & driving, now I'm backed to having my wings clipped.

Like how your dr is doing the prescriptions.

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Here we go again 7 years 3 months ago #44582

  • Sandi
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Rheumatologist today:

She says, no, we do not need an appointment to get the written refills. Just call the office and ask, and I can go pick them up. I got three scripts that I gave to my pharmacist. Good thing an appointment is not necessary because they can't fit me in for another 5 months.

She dropped the idea of CellCept for now which is good because I've managed to put that off for the last year. She now wants me to try Arava which I know nothing about. It's funny, but I planned to ask her why she wants me on something else so badly, but after giving her my list of symptoms, I thought "duh", that would be a stupid question. Before I can start it though, I have to have another lung CT. That will probably take weeks or months to get approved by insurance. It did the last time, and I had to go through my Pulmonologist. So probably no Avara for a long time, IF I should decide to try it.

One thing that I do like about her is that she acknowledges how much the weather can affect Lupus patients. None of my other Rheumatologists did and kind of dismissed the idea. There is always one day in the Fall when I feel like I suddenly get hit with the flu and it lasts nine months. My skin starts to burn and just going outside makes me miserable. Yesterday was that day. I also told her about my diet changes and she actually eats Paleo herself, so she really encouraged the idea. I then told her that I've been trying to lose weight and have been trying to walk a mile every day on the treadmill but it is a struggle. My husband has been doing 10 to 15 miles a day and it's impossible to meet that goal as easily as he did. She said that trying to keep that pace would be like exercising while you have the flu and it's just not practical to push too hard. I am going to keep trying but I just can't get past that mile and it's hard to even do that.

Then I had blood work and got poked in each arm. No one has been able to get blood from my left arm for a very long time, but I haven't tried it for years, so I wanted to give it a whirl. Big mistake.

I hope you check in soon, Dan, and I hope you are doing better.

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Here we go again 7 years 3 months ago #44596

  • Sandi
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I am not going to use Arava. I looked at the side effects and they are too horrendous to even consider, some were permanent.

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Here we go again 7 years 3 months ago #44635

  • Melinda
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I know I replied here because it was after I looked up Arava - but it isn't here.

Sandi I'm with you, Arava isn't one I would swallow either. My, that big red box - and then saying if you plan to become pregnant within 2 years after stopping it to tell your doctor - within 2 yeara, whoa! The side effects, lots.

I just don't understand why these great minds come up with meds that are worse than the disease/disorder/illness, seems like they could do better. That's why I stay away from medications if at all possible.

Sandi have you made the appointment to see your PCP yet? I know, I'm so sick of doctors too.

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Here we go again 7 years 3 months ago #44644

  • Sandi
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Melinda, I didn't see a previous post here from you. That's odd!

I barely even looked at the drug rx sites, mostly looked at askapatient.com. I didn't like what those people were saying. Most of the side effects were symptoms that I already have, so why would I want to take a drug that could only make things worse? Most of the people too spoke about hair falling out in clumps. No thanks! I've been through enough with side effects already and unless I'm dying (and maybe not even then), I won't do those types of drugs.

I have been reading about Solumedrol treatments and might actually call her to discuss that. Up to this point, steroids have been the only thing that works wonders and I know what to expect with that. Along with the bad comes some good, unlike the other meds which never had any benefit and only made things worse. I try to stay away from most meds too....you wouldn't believe the list that I've turned down. The ones I have tried have been out of desperation and I was always sorry that I did.

No, I haven't called the PCP yet. I've been too tired to care.

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Here we go again 7 years 2 months ago #44696

  • DanC33
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Sandi, Arava sounds just as bad as Lyrica and a few others. Glad your not taking that!!
Also just got back from the Rheumatologist and it wasn't good. It looks like I might be getting kidney involvement. He upped the Medrol back to 12mg and said he wants me to go to a nephrologist. Goody another ologist!!

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Here we go again 7 years 2 months ago #44700

  • Sandi
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I think you knew that might be coming. Sorry to hear it. I know it's a PITA, but nephritis can usually be reversed. It's good that your doctor is on top of it.

I'm glad you checked in, I was getting worried.
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Here we go again 7 years 2 months ago #44711

  • Melinda
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I was getting worried too. Sorry Dan another 'ist' will be added to the list [boy with the 3 of us they are a dime a dozen aren't they] - but as Sandi said your doctor is on top of this and that is great!

Sandi I always forget about the askapatient site - I just really like MedlinePlus so always go there. People are so different, one likes one doesn't one has side effects one doesn't one is cured one isn't, so I just prefer to read about the drug and make my decision. I've turned down a long list of neuropathy meds. I remember when you said you were going to give lyrica a try, scared me!

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Here we go again 7 years 2 months ago #44717

  • Sandi
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Melinda:

I did read the side effects on Drugdigest.com and then went to askapatient. The drug sites list the side effects, but they don't give details and descriptions. I get those from the real people. I know side effects vary, but when nearly every person said their hair is 'coming out in clumps' vs 'hair loss' on the drug site, you get a better picture of what is really going on. I read the Lyrica side effects before I took it and they didn't seem so bad, but when I went through it, it was one of the worst experiences ever. My words and the words on the drug site would be drastically different! Ha, the only drug site that really scared me was when I read about Methotrexate and 'death' was the first side effect listed. These drugs are wicked.

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Here we go again 7 years 2 months ago #44764

  • DanC33
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I also use askapatient.com, much more info from users not just the FDA required stuff.

Had the cystoscopy done yesterday, it came out ok. He said there was some prostate issues but no other damage. So it looks like the UTI is done for now. He did say that like Arnold it will be back. I now go in for a CT of the pelvic area on Monday to see how much damage there is to my kidneys. I also had an est. GFR done it was 55 and my creatinine level was high as well so according to the urologist that shows possible moderate stage 3 kidney damage.
Also I now get to see my Rheumatologist monthly. He said I'm a weird case because my Sed rate through all this is normal. My hands,hips and feet are red and swollen. My kidneys are going south but I show little to no inflammation. Any ideas as to why? Maybe because my pain tolerance is extremely high?

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Here we go again 7 years 2 months ago #44767

  • Sandi
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Dan:

I have the same problem. I've had a high SED at times, but a lot of the time it is low so the Rheumatologist believes all is well. I've sometimes had the worst inflammation with a low SED rate. I think the weather and foods can make inflammation worse ; they place way too much emphasis on test results. I don't have much of an explanation but I know tests should not dictate pain levels. I have the same problems with those areas of my body....can't sleep on my sides because hips burn. It's hard to walk. Hands are always swollen and my feet are numb and painful all the time. Some days I'd just like a nice long Morphine drip!

I hope they can treat your kidneys soon....they seem to be dragging this out too long.

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Here we go again 7 years 2 months ago #44779

  • Sandi
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I went to pick up my Prednisone today and the pharmacist handed me a script for Vitamin D. I guess my level is low again (had blood work last week). The doctor's office never calls to tell me that my D is low, they just call in a script. Okay, well and good, but I keep telling my Rheumatologist that we have to stop letting it get that low....it's happened too many times to count. I want to keep it around 50 because I have problems with fractures and it's only going to get worse.

Ha, I just looked at the bottle. It must be really low because I have 12 pills, 50,000 IU's and am to take one twice a week. There are also 12 refills....enough for 18 months. The last time I was on high dose D, it took 14 months to get to a normal level.

What really amazes me is that I have been taking OTC Vitamin D3, 8,000 IU's a day. Apparently, it does nothing. I have really been eating healthy the past few months but I just don't absorb vitamins from food. I should have asked to have all of my Vitamin levels tested.

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Here we go again 7 years 2 months ago #44782

  • Sandi
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Okay, now I'm on a roll. Dan, I just looked up the symptoms of low D. I've looked it up before but forgot the symptoms. They include:

● Impaired immune system
● Pain in muscles and bones
● Chronic fatigue
● Depression
● Head sweating
● Bone fractures
● Fragile and soft bones
● Osteomalacia (in adults)
● Muscle weakness
● Heart disease
● Chronic Kidney problems
● Diabetes
● Cancer
● Numbness and tingling

I have a few of those and I have to wonder how much of it could be due to the low D, especially the bone and muscle symptoms. It irks me because there is so much suffering that goes along with Lupus, so why would doctors not stay on top of the easy things to try to avoid as much as possible. I've read accounts from people who have had low D and they have described their symptoms as severe and debilitating. When you add the typical Lupus stuff to the low D, no wonder it's so hard to function. I've been having days where everything hurts, (even my skin) and it seems that even the air irritates my body. Every single little movement hurts.

You get a good day and you don't know what you did. Was it the food I ate yesterday or the fact that the weather is 5 degrees warmer or the fact that I didn't exercise the day before? You get a bad day and wonder if it was the tomatoes I ate yesterday or the rain today or the fact that I didn't take my Magnesium? Is it side effects from a drug or a Lupus flare or Low Vitamin D or no real reason at all? You never know what kind of day it will be so you can't plan anything and if you do, you suffer through the entire event and are miserable.

Just venting. I've been trying to walk on the treadmill lately and build muscle, but how can you do that when low Vitamin D, totally preventable, is wasting the muscle I'm trying to strengthen? My legs want to give out all the time and stairs are hard. I'm really frustrated.
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Here we go again 7 years 2 months ago #44797

  • DanC33
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Sorry your having such a hard time! And it's ok to vent.

I knew that vitamin D did a lot but not all that. Maybe I should have mine checked. I do take 6000 IU's myself.

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Here we go again 7 years 2 months ago #44800

  • Sandi
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Yeah, have it checked. The OTC's have never helped me at all.

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Here we go again 7 years 2 months ago #44858

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I just heard from my Rheumatologist, he isn't sure that my kidney issues are from Lupus.(but he is waiting for the Urologist and Nephrologist to chime in) Now I'm waiting on the results from the pelvic/kidney CT scan that was done. I don't go into the Urologist for that till next week. Then on to the Nephrologist.

On other news, since going back to 12mg of Medrol my blood work came back almost normal. My ANA is still positive but the rest(Lupus tests) is now either negative or equivocal(anti dns, RA factor ect..) and my platelets are now back to 212! :cheer: The only thing that"s still bad is my GFR, high glucose levels, some protein with red & white cells in my urine and my creatinine is off the charts high. Which points to possible kidney damage. And my sed rate was higher this time (at the upper end of normal) plus the usual stuff that steroids and Planquinil show as a suppressed immune system. Hey it's not perfect but I'll take it. My Rheumatologist says that 12mg of Medrol must be my number and that scares him because of the long term effects. Which Sandi knows about better than most.

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Here we go again 7 years 2 months ago #44860

  • Sandi
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Yeah, it's one or the other. Side effects or symptoms. Both do damage so you have to pick your poison.

I don't think my ANA has ever been normal since diagnosis. They rarely even test it any more since it doesn't mean much at this point. The dsDNA is a different story and can predict kidney involvement. Mine goes up and down. I have no idea what it is now; I haven't gotten copies of labs in a while. I need to do that.

Good luck with your appointments and let me know how it goes.
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Here we go again 7 years 2 months ago #44955

  • Melinda
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When do you see the Urologist and Nephrologist Dan? Good luck - hope they can shed some light on what is going on.

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Here we go again 7 years 2 months ago #44990

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I got some news from my Neurologist that kind of shocked me. She said that my kidney issues may be PD related.(who knew) She said it's very rare but it could be a dyskinesia of the kidneys she went on to say that because I already have been DX with other bladder/bowel neurogenic issues it's a possibility. So she's ordered some different labs. She's checking my copper, zinc, D, b12, folate and b6 levels as they can all cause issues. She also ordered a serum protein electrophoresis test, she said that kidney, neuropathy and Lupus can sometimes show up in proteins. But she like my Rheumatologist are waiting on the Urology visit on the 20th.

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Here we go again 7 years 2 months ago #44992

  • Sandi
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Gee they just can't figure you out, Mr.! Hopefully they find that Vitamin levels are playing a part. I have bladder problems when my potassium, magnesium or ferritin are down. I've also seemed to have less problems since I've been back on D.

Good luck and let me know.
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Here we go again 7 years 2 months ago #45010

  • Melinda
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Sorry about the latest on your kidneys Dan. 5 more days till you see the urologist so hopefully some light will be shed then. Any results yet on the blood work?

Sandi are your bladder problems due to lupus?

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Here we go again 7 years 2 months ago #45014

  • Sandi
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Melinda, I don't know. I need to see a urologist I guess. I told my Rheumatologist and got a look and a shrug. The thing is that it comes and goes so when it's gone, I don't follow up with it. It goes on for weeks or months, then stops. I also have IBS and don't do anything about that either. I just think it's going to be a bunch of tests and then more drugs to take. What's the point? Nothing can ever be fixed, just managed.

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Here we go again 7 years 2 months ago #45016

  • Melinda
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Well my friend be glad we don't live close because I'd make the appointment and take you to the doctor even if you were kicking and screaming :) You have 1 bladder, can't grow a new one. This is something that should be looked into Sandi and I am chastising you - you know better! And "nothing can ever be fixed, just managed." - well maybe by managing that which can't be fixed keeps the unfixable from getting worse or turning into something worse.

I do not like going to doctors just as much as you don't - I do not like medications just as much as you don't like them - but something like this, yeah I'd probably go have it checked.

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Here we go again 7 years 2 months ago #45017

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Well I got some of the labs back and they are all over the place. GFR 55, creatinine is high, zinc levels are low, total serum protein is very low. I plugged all these into Google and it comes back with is 1. kidney failure 2. liver failure 3. Lupus/autoimmune issues 4. malnutrition
Still waiting on the electrophoresis test.

Sandi I did the same thing with my Rheumatologist and got the same response. But I know it's a PITA, you need to get into a Urologist.

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