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Other Platelet Disorders

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Here we go again 7 years 1 week ago #45849

  • DanC33
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Insurance finally approved the Imuran. I just started yesterday so here goes. I really do hope I can reduce the steroids at least a little.

As far as work of any kind goes NONE of my doctors will release me. They say that I don't need the stress as it makes both Lupus and my PD go crazy. And just doing normal daily things wipes me out to the point that I fall asleep in my chair around 2:00. They all agree that a class of some kind will help keep my mind going though. And I've started giving my kids and my nieces music lessons so that helps with some of the boredom.

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Here we go again 7 years 6 days ago #45853

  • 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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Boredom is not a problem that I have. I actually can't keep up with my life. My Mom has needed a lot of help lately and I'm barely managing that. It usually takes me all day to do a few things around the house. I have a few hobbies that fill the gaps....crocheting, writing, etc.

It's probably best if you don't work. My old job needed some help a few weeks ago so they called me in. I worked three days, five hours each and it was too much. I was completely wiped out. It takes so much concentration to do the things I used to do without even thinking. My cognitive abilities are not what they used to be. All I did was mostly answer phones and open new files, but I get easily confused so even that was hard. My short term memory is shot. I have to set a timer on my stove if I'm cooking something or I forget about it. You might find that it isn't as easy as you remember. And yes, stress does set off symptoms big time. Ha, I was stressed just at the thought of getting ready to be there on time (10:00), even though I set that time and nobody else really cared. You have some good ideas to stay busy.

Good luck with Imuran! Let me know how it goes.

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Here we go again 7 years 6 days ago #45860

  • DanC33
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Forgot to mention that I ended up in the ER again. This time I thought I was having a heart attack after my PT last week. Turned out that my potassium levels were near zero, all my other electrolytes were fine so the doctors just said that I may have been dehydrated. I thought I was done for.

My PCP looked at everything and said that if I was dehydrated all of my electrolytes would have been off at least a little. She thinks it might be one of the many meds I take causing it, or very possibly a kidney issue as my GFR was off again. So now I have to have that monitored, along with everything else. :lol:

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Here we go again 7 years 5 days ago #45862

  • 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've been there with the potassium. Ended up on a cardiac monitor. My potassium always runs low, as do many other vitamins and minerals. It's hard to stay on top of it. That is why I have bottles of supplements...I think we've discussed this before. I used to have scripts to get potassium checked every few weeks. Did they give you K-Dur or an IV? Usually levels below 2.0 get an IV. They usually check most of those every time you get blood work, but you have to make them add the vitamin levels...that is important too. I had an IV for magnesium once, that level also runs low. Usually it's the medications that cause it but people with autoimmune disorders don't absorb vitamins and minerals from food very well, so there's that.

Glad you're okay! This is an easy one to monitor and fix, but can be serious, so don't slack off.

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Here we go again 7 years 4 days ago #45870

  • DanC33
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They gave me an IV, they said it was so low that it barely registered. As you know, I do take tons of supplements and this is still very low. On my last three blood tests it's been on the low end of normal(along with magnesium and D) . So my PCP is giving me a prescriptions for potassium, D and magnesium.

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Here we go again 7 years 4 days ago #45871

  • 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, the supplements don't do much, but they can help. The OTC D I have though doesn't do anything to keep the level up, so I don't even bother with that one. I have high dose magnesium, and the type of magnesium makes a big difference. Apparently, there are 7 different kinds and some of them absorb better than others. I had been taking one for a long time but ended up in the ER with a magnesium IV. The one I have now seems to be helping much more. The highest dose of potassium sold in stores is still to low of a dose to do much, but I take it anyway and hope my potassium level stays at least in the low normal range. I can't get that one to a mid-range level even on the potassium scripts.

It's odd that you seem to follow my problems exactly. Since it seems to be so common, you'd think they would try to stay on top of things more to avoid having problems from low levels. It keeps happening in my case too, although my latest D script has refills for 18 months. I think I'll be good with that one for a while. I also have problems with B12 and ferritin levels dropping.

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Here we go again 7 years 2 days ago #45921

  • Melinda
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That's scary Dan! Glad you are all right! And as I was telling Sandi, my PCP told me not to take any supplements with potassium as mine runs on the high norm. Bananas & potatoes have lots of potassium don't they? Does Lupus cause, or can lead to, low potassium?

Sorry the new rheumatologist is so booked - it's a shame you weren't able to meet with her and form an opinion. I see my new hematologist next week - had blood work yesterday and some of it is already in, was a shock to see me deceased hematologist's name as the one who ordered the tests.

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Here we go again 7 years 2 days ago #45924

  • Sandi
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Melinda:

I think some people with autoimmune problems just have trouble absorbing vitamins from food. I even have trouble with many supplements and still end up low unless they are high dose script or very high dose OTC. Also, the meds for Lupus patients cause problems with absorption, so that adds to it. I've had problems like this for the past 10 years, ever since I was diagnosed. Even with high dose vitamins, my levels never get too high and barely make mid-normal range. It's frustrating because it's one more thing to keep up with and many more pills to take on top of the ones I already have.

Good luck with the new Hemo!

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Here we go again 7 years 2 days ago #45926

  • Melinda
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My parents did not give my sisters the joy of autoimmune problems but my little sister has trouble absorbing vitamins [except when she decided to go overboard with the tanning booth].

I was wondering about either lupus being a cause or meds - thanks for letting me know.

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Here we go again 7 years 1 day ago #45936

  • DanC33
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I did find an interesting article on autoimmune diseases and malabsorption issues.
www.livestrong.com/article/478370-vitamin-mineral-deficiencies-associated-with-lupus/

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Here we go again 7 years 1 day ago #45942

  • 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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Great article! Exactly! These deficiencies can cause their own symptoms or make the symptoms of your condition worse. - this sentence really gets me. I cannot tell you how many times I've felt horrible for weeks on end just assuming it's a Lupus flare, only to find out that I had some deficiency. It's not just feeling horrible, it's having those symptoms on top of all of the other ones. There have been times I felt so awful I thought I was dying. All I could do was go to bed and hope I'd wake up in the morning. It's frustrating because so much of my life life is wasted when it's totally preventable. I like to do something when the level is low normal instead of waiting for it to drop below normal, but doctors don't think that way. Waiting 3 months to do blood work again and catch those things can be detrimental.

When my ferritin was low, my last Rheumatologist wouldn't do anything because my red cells were still ok. I thought it might be the cause of the RLS that I'd had for two years (and it was, there is research), but she didn't believe that. I told her that I was going to start taking iron and she told me not to, that I had to be monitored if I was going to take iron. I told her that she'd better monitor me then because I was doing it. Within two weeks, the RLS was gone. I hadn't had more than 4 hours of sleep in two years. Simple solution, but none of my doctors ever bother trying to help with problems that only cause misery. They don't get that just one low level can take me down for weeks. I have to play 'guess what might be low' and play with the vitamins and supplements.

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Here we go again 7 years 23 hours ago #45965

  • DanC33
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After that article I'm going to be a little more persistent with my doctors. I think I'm going down the same road that you have. There I was thinking I'm having a heart attack just to find out that it's a vitamin and mineral deficiency. And I think it's crazy that doctors don't monitor Lupus/autoimmune patients far more closely than they do for these types of issues.

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Here we go again 6 years 11 months ago #46120

  • DanC33
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Time for an update. I've been on the Imuran for a couple of weeks and haven't noticed it doing much. I've not had any side effects or anything but not sure if it's doing anything.

Also just received the lab report on the potassium levels and they are still at the low end of normal, even though I take a script level supplement. Any ideas on how to bring it up?

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Here we go again 6 years 11 months ago #46125

  • Sandi
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The only thing I know of is to eat bananas and sweet potatoes, but that never helped me much either. Just keep taking the supplements. The problem with that is that as soon as the docs see normal levels, they stop prescribing the supplements and you drop again. It's a never ending cycle. I never get above low normal either.

I didn't get anything out of Imuran either. The only thing it ever did was cause immunosuppression and any time I got sick, I couldn't get rid it of for three months.
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Here we go again 6 years 11 months ago #46126

  • Rob16
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Dan, are you still on steroids? What is your blood sodium level?
Prednisone and some others are not just glucocorticoid but also mineralcorticoid, which causes salt to be retained and potassium to be excreted. If your blood sodium is high or even normal, but your potassium is low, switching from prednisone to a bio-equivalent dosage of dexamethasone can make a big difference. Dexamethasone has zero mineralcorticoid properties. The craziness that some people report with dexamethasone is usually due to its being used at higher equivalent doses.
10 mg prednisone = 1.5 mg dexamethasone
www.nadf.us/downloads/adrenalhormone.pdf
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Here we go again 6 years 11 months ago #46127

  • DanC33
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Rob, I'm on 12mg of Medrol right now. My sodium levels are spot on and so are all the other electrolytes except potassium. I was on dexamethasone for a while but was switched to Medrol.
I will show my doctor that report when I go in 3/2/15. So maybe that's something I hope. Great article by the way!

Sandi, My doctor just let me know that my creatinine levels are high at 1.4 (normal is .6-1.0) So she thinks my kidneys are the issue. My GFR was 54 and my last 24hr protein was over 300. But all my Lupus related blood work is OK. I think they are more confused than we are! And I think I've eaten enough bananas the last few weeks to keep Brazils economy floating for months.

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Here we go again 6 years 11 months ago #46128

  • 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:

Kidneys could be the issue, but I have the same problem and do not have any kidney issues that I'm aware of. I haven't seen my blood work results for about a year and a half. I really need to get copies. I don't trust that they would tell me unless the levels were bad enough to do something about. Steroids can cause that also, as you know. Whatever the cause, the treatment is the same at this point.

I wish winter would end already. I've felt like the walking dead for months and rarely go out of the house. I started crocheting scarves for Christmas presents next year. I feel like all I do is just exist and take up space. I like my dreams lately; I go places.
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Here we go again 6 years 10 months ago #46965

  • DanC33
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Sorry I've not been on in a while, my kids are doing their finals so I've been prepping them.
Good news...I think the Imuran is working. I've been able to lower the Medrol to 10mg without flaring. I do have a little joint pain, but that is managed with Motrin. Now if I can get down to 8mg I think my Rheumatologist is going to flip!

Also my new Neurologist just ordered a ton of tests. She thinks I may have either MS, Scleroderma or Dermatomyositis on top of(or even in lieu of) everything else. She also ordered an MRI with contrast. She said that my neuropathy is getting worse so she has me trying Cymbalta. Any thoughts on this drug?

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Here we go again 6 years 10 months ago #46968

  • Sandi
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Yes, I've tried Cymbalta. I felt like I was in a coma so I stopped taking it. All I could do was sit and stare. You might do better than I did, many people do.

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Here we go again 6 years 10 months ago #47210

  • Melinda
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Hi Dan! Like your good news - glad to hear the Imuran is working and the Medrol dose is down.

I just saw my neurologist today - my neuropathy pain has increased a lot in the year since I've seen him. He did not like how my legs responded to being hit with the hammer :) so has ordered an MRI. He wants me to take Effexor and has given me a prescription for 1/2 the dose he normally prescribes first - so instead of 75mg a day he wrote it for the 37.5mg capsule. Not sure if I will take it, will decide one of these days. I had told him last year I didn't want to take Cymbalta - and I won't take Lyrica. So maybe I'll try this and maybe I won't.

When is your MRI? Mine is 4/3 - could have gotten in earlier but I can't see having it at 10 or 11pm.

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Here we go again 6 years 10 months ago #47223

  • DanC33
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Melinda sorry you going through that :( I still haven't tried the Cymbalta yet. I've read too many negative reactions to it so it makes me have second thoughts. But right now the Neurontin at 2400mg is making me feel numb from the brain down. Do any of these so called neuropathy meds really do anything besides make you feel like your in a drunken stupor?

I just had the MRI done. It shows no signs of MS, it does still show the heterotopic grey matter that was found on the last one. But this time they found cerebellar tonsillar ectopia, it's where the back of the brain is getting pushed down into the spinal cord. So maybe they found what the issue is. All the other tests were Ok except the SPEP, it shows that my total protein levels are low as is the gamma PES.(still not sure what that is)

I also just had my DNA tested as part of a Parkinson's research group. As a thank you, they did show me some of my health report based on genetics. It showed a high probability for Parkinson's, SLE, Reynaud's (duh!) and whole bunch of other things I really didn't want to know.

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Here we go again 6 years 10 months ago #47279

  • Sandi
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Those meds all have a downside. I've tried a few and couldn't stick with them. When they added those to the meds I was already on, I was a zombie.

Seems as though they are looking into everything for you. At least they are being thorough. Maybe something will eventually help. I wish you the best.
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Here we go again 6 years 10 months ago #47313

  • Melinda
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You say it nicer than I do Dan - instead of drunken stupor I asked my neurologist the other day if the med he was prescribing would make me stupid, told him I'm old and don't want to spend my last years being stupid. He said it wouldn't - as of yet I haven't tried it.

Is the back of the brain being pushed down into the spinal cord Chiari? Have a friend who has that.

Yes your doctors are thorough and that is what you want! Good luck & keep us posted!

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Here we go again 6 years 10 months ago #47367

  • DanC33
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Melinda I think it is called Chiari malformation. They said it is normally a congenital defect but since it wasn't picked up on an MRI that was done 2 years ago they are concerned.

As far as the Cymbalta, I decided to try it today....so here goes

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Here we go again 6 years 10 months ago #47370

  • Sandi
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Good luck with Cymbalta. Let us know how it goes.

There used to be someone here on the PDSA with the Chiari Malformation. It can usually be fixed with surgery, right? Maybe that could account for some of your problems?

I see my Rheumatologist today. I made a long list...

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Here we go again 6 years 10 months ago #47376

  • Melinda
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Yes Dan - Chiari malformation - my friend in MN has it and was operated on, didn't do well. Know you are reading all you can find on it. Aren't there many types and degrees? I'd be curious if it was on the last MRI 2 years ago and just missed.

Sandi who was our webmaster on the site before this? She has it. Just hit me, her name is Tal right?

Let us know how the Cymbalta treats you. I still haven't taken Effexor yet.

Sandi let us know what the rheumatologist says.

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Here we go again 6 years 10 months ago #47377

  • Sandi
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Yes, it was Tal. That was a loooong time ago.

I've heard some positive stories about Chiari malformation surgeries, so I guess it all depends on the situation.

Rheumatologist took my list of complaints and we're trying to come up with a treatment plan. I asked for a Solumed IV and while she didn't say no, she didn't exactly say yes either. She gave me a steroid shot today and changed the steroid dose, but keeps trying to push the Arava. I don't want it. It can cause lung damage and I already have lung damage from MTX. I have to get a lung MRI before even starting it to see if things have gotten worse, so why would I want a drug that can cause more damage? I'll call her next week and ask nicely again for the Solumed. I can barely do simple things around the house and have had to help my mother a lot. It's too much. I spend every day feeling sick as a dog and barely get through the days.

Hope the Cymbalta is going well, Dan.

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Here we go again 6 years 10 months ago #47384

  • Melinda
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Not understanding why a doctor would keep recommending a medication when the patient has said no to it in the past, and knows the reason the patient doesn't want to take it. Does she feel it will not cause more damage to your lungs, does she feel that being on it can get you off other meds, does she feel that you will feel so much better if you take it? Why is she pushing it?

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Here we go again 6 years 10 months ago #47386

  • Sandi
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Melinda, I don't know. I'm so frustrated. I saw her five months ago and we had the same discussion. Her office was supposed to get the MRI approved and call me. They never called, so I assumed they didn't get the approval. I didn't really care because I didn't want the drug anyway and didn't have any better ideas. Every time I leave, she says to come back in 2 to 3 months, but they can't fit me in for 5 months. I wait it out every time.

This time when I left, she told me to call her next week and let her know how I'm doing. I'm going to do it. I can't wait this out any more. I can't even stand in the kitchen long enough to cut chicken for dinner; it's too exhausting. I'm not sleeping at all because my hips and body ache all night. I have to get up at 7 to drive my son to school and pick him up at 2:30. In between, I'm taking care of my Mom's needs and trying to take care of my house. It doesn't sound like much, but feeling this sick day after day for years is draining and I just keep getting worse. She agrees that Lupus has been active for years with no break, but nothing she gives me has ever worked. I really want to give the IV a shot. The thing that cracks me up is that she'd give me Rituxan or Benlysta in a heartbeat, she mentions them every time and says she'd give me those if I didn't have reactions, but holds off on the darn steroids. That's the one thing that I think will help. I want to bite her.

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Here we go again 6 years 10 months ago #47390

  • Melinda
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Yes, call next week and let her know how you are doing! She knows your lung problems and yet she seems to be insisting you take a med that will make it worse and it doesn't seem like she is giving you a reason - heck if she said it will make you feel like you did when you were 16 it might be worth a try, but to push a drug that can cause your complications further complications just doesn't make sense. Too bad you can't email her.

Do you have one of those foam pads on your bed that helps take the pressure off hips and knees etc? Bless your heart - so much on your plate and then some.

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