Here we go again

The ones I am doing are a chewable.(they are a generic from Walgreens) Maybe I should try a pill form so they don't hit the stomach so fast.

Might not be a bad idea to see what you can find in the type that doesn't do its thing until hitting the intestines. How are things going now?

Still dealing with the UTI and the infected prostate. For some reason they refuse to go away. Also my Rheumatologist tried to wean me off the Medrol again and my platelets tanked! Went from 214 last month to 91. I have to go in again next week for another CBC. Seems like everytime they try to wean me off or lower the dose this happens. You'd think they would learn.

My doctor said to put the probiotic on hold for now. She said that she would research it a little deeper because they were making me sick.

Good idea to skip the probiotic if it is making you sick! Maybe your doctor will find something that you can handle.

How do you taper the Medrol - very slowly?

My Rheumatologist is trying to get me under 8mg. He says staying at 12mg of Medrol is too high for long term. I've tried going slow like dropping to 10mg for 2-3 weeks then 8mg. Then I get a cbc and my platelets start dropping. This has been going on for almost 4 years (originally started with my Hematologist with the ITP in 2010) Seems like 12mg is what my body likes. I have even had 8 total rounds of Rituxan over that same time period. As long as I take 12mg my platelets stay at the 150-180 area, they have even gone as high as 214.
But EVERYTIME I try to wean off or lower the dose they drop fast. Like I said before went from 214 to 91 in less than a week and a half. But this time even my RBC was very low, MPV was VERY low, Neutrophils was high and Lymph was very low. So my doctors are worried. I know some of this is due to the steroids.

I'm a believer in a slow taper - probably because that is what I did and I had no side effects as others describe. Why I did it so darn slow was because we had moved to Hong Kong and my UK trained hematologist knew less about ITP than I did and she would panic and want my spleen with any drop - so I stayed on prednisone until we got back to the States.

Dan I was tapering by 1/2 a pill - and I was taking 1mg pills so ended up going down .5mg each time and staying at that new dose for a couple weeks before lowering it .5 again. I believe by the time the tapering off started I needed to go that slow for my own peace of mind, I was so afraid the count would drop.

Prednisone is nasty - it can cause so many problems, it just isn't good to be taking all the time [saying that, I do know someone who has to take it daily and has for over 20 years & it isn't good]- even at low doses.

Dan:

I've been on about the same dose as you for 9 years, some days it is higher. I can't get off of it either, but not because of platelets. I am having the long term problems now like fractures for no reason, thin skin, loss of muscle. My Rheumatologist pretty much accepted that I'll never get off of it. I've tried going very slow (1 mg. every 6 weeks), but I get so sick (Lupus) I can't function. What the heck do you do in this situation? It's a double edged sword. I even think that my spinal stenosis was caused by steroid use and pretty much expect to have it happen again in the near future with other disks.

How low do your counts drop if you cut back? It's usually okay to have counts around 50k or so. I'd be fine with that and would actually prefer it.

The platelet dropping that fast freaks out my doctors but as long as I am above a safe zone I feel that it's ok. I have gone as low as zero or too low to count the last time I completely weaned off. But as they kept upping the amount of Medrol so went my platelets, to where they are now.
But the other problems arise with the Lupus, mouth sores, fevers, hair loss, extreme fatigue ect... all come raging back as well. But the worst is the joint pain and the neuropathy, even my Neurologist wants to double the amount of Neurontin I take to see if that helps. So I go from taking less of one pill to taking even more pills....does this ever end?

No, it doesn't end. I've had two more long term scripts added in the last few months. It goes on forever.

The problem I have with using drugs like Neurontin is that they only mask symptoms. The immunosuppressants can prevent damage. As bad as they can be, they are still doing some good in the long run. I know the steroids are ruining my body but at the same time, I might be worse off if I didn't take them. Nobody knows which is worse. Steroids keep the antibodies at bay and they are the things that cause the damage. I don't think anyone gets the pain that comes with Lupus. I'm tough but without steroids, it's intolerable, even with pain meds.

Maybe if you dropped to 8 mg's, your counts would hang out at an acceptable level.

I would love to get down to that level, or even lower if I could. The ER doc that I saw for the UTI put me back up to 12mg because he freaked over the platelet drop. So now I get to try and taper again. To me as long as I stay above 30k I'd be happy with that.

Your right about the pain. Nobody except other Lupus patients seem to get how much pain is involved with this disease. I don't think even the doctors get it, all they do is look at things like your sed rate, chem panel (ect...) if they are what they think is an ok level then you have no pain. But what kills me is when I have issues with Lupus it makes all my Parkinson's symptoms go crazy as well. As far as the Neurontin, he's trying to help me with the neuropathy that has progressively become so bad that I have had some BAD burns on my hands and didn't feel it, I've had some falls because I can't feel where my feet and legs are. He's not sure which disease is causing it because both of them do. But either way the treatments are the same.

Yeah, I understand that. I lose my balance a lot because I can't feel my feet much. I'm sorry yours is progressing so fast and affecting your hands too.

I don't know if I'd raise steroids based on an ER doc's suggestion...check with your specialists. Maybe you'd benefit from a few rounds of Cytoxin. I almost went that route a few years ago. What about Benlysta?

My Rheumatologist and Neurologist has mentioned Benlysta a few times never heard of Cytoxan. He said I would have to wait until the Rituxan has worked it's way out because he said they can interfere with each other. But they're afraid of me being on too many meds I think he called it polypharmicology,(?) It's not just Lupus and Parkinson's meds, I also have hypertension, gout & hypothyroidism of which they now think are related to Lupus but I've been on meds for those since I was 17. I've had rounds of PCP pneumonia because of the suppressed immune system, so I take a meds for that plus I have 2 different inhalers because of the damage that was done.(plus I am now on 4ltrs of O2 all the time) I also have Lupus induced seizures so I take meds for that. Plus I take a bunch of supplements that my doctors prescribed(based on some of your recommendations from a prior post thanks for the tips Sandi!!)because the levels I am on are too high for OTC.

And yes it's very irritating that it's hitting my hands because it's starting to take away my hobby(or as my wife calls it my hiding place) my music. I love playing. It's my way of getting out of my own head if you know what I mean. I used to get together with a bunch of friends and play all night, now I can take about 15 minutes and my hands are done.

DanC33 wrote: Your right about the pain. Nobody except other Lupus patients seem to get how much pain is involved with this disease.

and really that goes with any pain from any disease/disorder/injury - unless you have it yiu don't know. yesterday I had surgery on my left thumb basal joint (right thumb was done last September) - no one knows how bad my pain was from those joints, but my surgeon is fantastic and i do feel she knows. my now retired neurologist understood my neuropathy, boy i miss him.

Neurontin helps some people and not others - i take a very low dose so is it or isn't it, i'm not going off it to find out. my neuropathy is in my hands but not to your extent dan. my feet/legs are bad - days i want to chew them off at the knees. have i asked if you tried acupuncture [Percocet brain right now ]

so sorry your ability to play music has been compromised - our sons are really good musicians and when growing up i'd tell them their music is a natural high. i play the violin since early grade school, taught myself the piano and love the banjo but can't really play it

i know i do not understand what you 2 go through with lupus and i won't pretend to.

Melinda, Wow, day after surgery and typing I'm impressed! I do hope your thumb heals quick. Sorry to hear about that. I'm glad you had a good surgeon.
And you are correct, there are many other things that cause pain. It's just with Lupus it's weird, one day you feel fine then wham! out of the blue your knees are swollen and stiff or the neuropathy makes things crazy or there are days where I have what my wife calls T-Rex arms because I can't move my elbows. But mostly what I was referring to was that most MD's (especially ER/gen practice docs) don't understand that pain isn't just what's on a cbc or lab report. My Rheumatologist and Neurologist both get it that's why they keep changing meds, hoping to find something that works. and yes I feel like a lab rat!

My dose of Neurontin is very low too. So I don't think it's doing anything. I do have a friend that takes 1000mg of it and it has made a huge difference for him. But he has nerve damage from being in the military so it's probably not comparable. But I have heard from some that it has done nothing. So here's hoping! And I would love to find an acupuncturist here in tiny town NV!! My neurologist agrees with you that it might just help. He also mentioned Tai Chi or ballroom dancing to help with coordination/balance issues.

I started on the violin in the 3rd grade(1977) and have been playing music ever since.(now mostly guitar but still play anything with strings) So I will just have to figure out a new hobby. Any ideas?

Well, I've taken up scrapbooking and making video DVD's from pictures. It's all sit down and I can still work with photos. My hands don't cooperate much because of the swollen joints, but I manage. I'm not sure if you'd be into scrapbooks.

I'm glad your surgery is over, Melinda. Are you taking your Percocet?

I'm past having days where I feel fine. I used to have them. But still, some days are worse than others and many times, it's related to things that I've eaten (mostly nightshades).

Haven't considered scrapbooking, my wife does a little of that. Making DVD's out of pictures is something we asked about at Walgreens and they charge a fortune for that. Any special equipment needed? My son suggested video games but of course he's a teen. I'll continue to play music as much as I can but need another outlet or I think my wife is going to go crazy! :silly:

Fortunately I still have some good days, few and far between but still there. Most days I just get by and deal. Then I have those days where if it wasn't for food/water/restroom breaks I wouldn't get out of bed. My nutritionist wants me to be food allergy tested. She said that it's not uncommon for people with anything autoimmune(she said Lupus is the worst but all apply) to have an issue with foods. She said the most common is wheat/gluten/celiac but she said anything that is known to be inflammatory can be an issue and cause flares.

Nightshades? That would be rough for me, I love most of them except eggplant!

Walgreen's does that? I've been thinking about starting a business doing that, but didn't think there was a demand. Wonder what they charge? I have a couple different programs...Windows Live Movie Maker and Vegas Movie Studio. I also make DVD's with video clips. I made this one for my daughter's birthday:

www.youtube.com/watch?v=z4SJLfJWVcM

Made this for my sister-in-law: (She was Edward Scissorhands in the pictures)

www.youtube.com/watch?v=YWkjOo7SL2o&feature=youtu.be

I found out how much I react to nightshades when I drank V-8 for a week. I felt horrible. Before that, I never realized the connection. Now I really notice it when I eat tomatoes or sauce, I can live without peppers and egg plant, but love potatoes. You should keep track of it, you might be surprised like I was. I cut out gluten for three months and noticed a huge improvement. Long story why I quit, but I want to get back to it.

Good videos. And yes there is a market for this type of thing. I don't remember off hand what they wanted price wise, but it was enough to make me do a double take.

I almost live on V8, I love the stuff. I have 2-3 glasses almost everyday. I don't eat a lot of potatoes but I love peppers the hotter the better. I haven't tried giving up wheat/gluten but I don't eat a lot of breads but it's put into a lot of products. So I am going to my PCP on Monday I will talk to her about it and see what she says.

OMGosh, Dan! You could be causing so much inflammation for yourself! Stop the nightshades for a week and see how you feel. There are SO many articles that back it up.

dan, i'm using the 1 finger typing method for now - that's slow. do you write music too? ok both of us play violin - and I have relatives in nevada. your tiny town smaller than gabs?

lupus is so different because of the flares, what it hits. it's scary!

will you gradually increase Neurontin? it is worth a try, and I really hope it works for you!! my neurologist, the retired one, had patients who were taking 1800 daily.

sandi i'm taking Percocet for the pain, not the full dose though and didn't w/ right thumb - it isn't helping the neuropathy pain as much this time - the stabbing/lightening strikes & toenail ripping off feelings are calm, but not the buzzing/numbing and hot sand and toes in a vise etc - last thumb surgery it was all gone when on the pain med.

I just had son's high school plays put on cds - can't think of name of the place, used them because the video stayed in town. great cds you made!

nightshades huh?


ps - dan what about genealogy? i'm big into that

Sandi, giving up nightshades will be hard as I love them. But it's worth a shot. Right now I'm up for anything.

Melinda, One finger typing and still here. Good to even hear from you! Gabbs NV. is mostly a ghost/ former mining town. It's current population is about 200 people, that is microscopic not tiny! ha ha! But it is about an hour and a half from where I live in Fallon.

I have done some music writing in the past, but it's been years. And that was mostly for a country/rock/whatever paid us band my uncle and I belonged to. And you must be talking to my wife, she gas the same idea on genealogy.

Percocet not working well

I'm going to my PCP on Monday, I will talk to her about Neurontin. Right now I take only 300mg but my Neurologist wants me to be at least at 600 or even higher but he's afraid of getting me on too many pills.

Dan, I know how hard it is to give up nightshades. I LOVE tomatoes in the summer and my husband makes a mean potato salad. I just try to limit it to once a week because the effects are pretty quick but also go away in a day or so. Since the V-8 fiasco, I just try to limit the foods. There are some anti-inflammatory foods also, like Tumeric and coconut. I get this organic coconut juice and it does help to relax muscles. Foods can make a huge difference. My husband didn't believe me for a long time and fought me, but recently gave up sugar and has noticed a big difference in how he feels. He's in now!

I'm sure there are many hobbies that you can do, we just have to find the one that interests you. My Mom recently retired and has no idea what to do with herself. She sits and watches TV all day. I never even have mine on. I always find some project, just created a website for my husband's company which took three weeks. What about building planes or trains?

Nightshades:

www.greenmedinfo.com/blog/link-between-nightshades-chronic-pain-and-inflammation

www.diagnosisdiet.com/nightshades/

I came across this article yesterday, which finally explains what is going on with my hands. It discusses things that happen to muscles and joints with Lupus.

www.thelupussite.com/fact7.html

Great articles Sandi. I knew that wheat was an issue but knew nothing about nightshades. I think I might just try that challenge to see if that helps. I am printing the articles on nightshades for my PCP visit on Monday.

As far as TV, I have a few shows that I like but I don't watch a lot of TV. I think it can make us worse because of the sedentary life it brings.

The first thing my Rheumatologist said to me when I first discussed disability with her was that all of her patients become depressed when they stop working. I told her I didn't believe that would be a problem and it hasn't been. I've been off of work for nearly two years. Of course I get sad about the things I can't do anymore and I worry about how much things are going to progress, but working was just making that worse. It was such a huge struggle to even get ready for work and the relief that the pressure is gone is tremendous. I am happy not having to dread every day like I had been and I try to make the most of my time now. When I was working, I was not able to have any social life at all because I was too exhausted from the week. I don't have much of one now, but I can have friends and relatives over once in a while without dreading that too. Everything was just something to 'get through' and I didn't enjoy anything.

I think I'm still pretty sedentary, but at least I feel productive. I'm glad that I didn't fall into the mind garbage TV thing. I saw so much of that on the Lupus Forum and those people seemed trapped in that lifestyle. They didn't like it, but couldn't find another way to occupy their time.

Let me know what the PCP says about the nightshades. Honestly, if I hadn't done the V-8 thing for that week, I would never have made the connection and would have denied that they affect me. Try going a week or two without it and then start drinking it again. That's how you will know. I still have bad days due to weather, stress, etc., but nightshades made it so much worse.

Well the PCP visit went well. She is sending me to an allergist and a nutritionist to get all this worked out. And she agreed that I should stay away from these things(wheat, nightshades and she also said fake sweeteners/corn syrup) until we can figure out what is aggravating things. So I started yesterday with nearly zero nightshades. I did use some hot sauce on a taco for lunch but I think those little packets are more water and vinegar than anything else.

All my doctors have said something similar when I was forced to "retire". My PCP said that apathy and depression are very common when serious diseases strike. She's even had another patient attempt suicide. They even had me going to a counselor for a little while. (she said I'm handling this far better than my wife is) While I try to keep busy doing things as much as I can handle, I really do miss working. I've asked ALL of my doctors about even trying to do something part time, (they usually just change the subject) but I know that the minute any kind of stress ect.. would put me right back where I was. And like you after working I was so exhausted that even when I tried to have a social life it didn't end well. So at least I now have the ability to have a little bit of a social life. And my friends understand my limitations so instead of going on a 12 mile hike they take me fishing or a few weeks ago we did a karaoke night! I think I sing pretty good after a couple of margaritas! :laugh: I too have seen in other forums about TV watching, it's not good. And I do exercise daily, nothing hard but I try to keep moving as best as I can.

Ha, I used to karaoke all the time. I can't do that any more though because of the damage that MTX did to my lungs. I also can't sing without a few beers and I can't drink due to meds, so one more reason why that's out. I miss it; my sister and I were pretty good together.

I'm not partial to that word 'retire'. Makes it sound like I'm out golfing and living it up. I wasn't old enough to retire and it certainly wasn't a choice. I've had some people who have said how lucky I am. Don't feel very lucky. I'd rather be working and healthy.

Good luck with the nightshades - let me know how it goes! I don't have any doctors who have an interest in what I eat. It's good that yours agree it's something to look into!

I'm not partial to "retired" either but I really don't like the term "disabled". Being forced into a decision between constant pain/fatigue/brain mush and quality of life really wasn't in my long term plans, I'm only 45. So I'm not sure how to respond.

I'm not supposed to have alcohol either, my Neurologist says it makes my Parkinson's symptoms worse and my other doctors say that because of all the drugs I am on it can due real damage to my liver. But they said that "once in a while" it's ok not advisable but ok. As far a singing it helps as a courage booster. I know that eventually I will lose my voice due to the Parkinson's(see Linda Ronstadt) and some of the Lupus meds as you well know.

My PCP is a DO not an MD. I don't know if that makes a difference or not. But she has always said that good food and clean diet(nothing from a box or can or a drive through window) would solve about 1/2 of the health problems today.

I saw Linda Ronstadt interviewed a few months ago. Truly sad. Her attitude is unbelievable, pretty much "oh well, I had my day in the sun". I'm not sure I could be that brave losing the thing that I treasured so much. I consider her one of the best female singers ever.

I don't use the word 'disabled' either. People wouldn't understand because I look normal except for the way I walk (limps, stiff). There should be a term that we could use. I'm not that much older than you, I know, it stinks. I keep reminding myself that it could be worse. I could have been diagnosed in my 20's when I was raising my kids. I'm grateful that didn't happen.

I agree about the diet. My husband recently gave up sugar/fast food and has been losing weight like crazy and feeling so much better (he's healthy). He dropped 32 pounds in 4 months. My Rheumatologist is a DO but never talks about diet. None of my doctors do, but I know what it takes so it's really up to me anyway. Have you seen the Montel Williams clips? He's managed his MS with diet - it's amazing.

I saw that Linda Ronstadt interview and she did seem to have come to grips with it. But with PD before it gets to that level she had to be having issues for years. She did say that she was noticing little things but ignored them she said her age was getting to her. My Neurologist says that it takes about 4-8 years before it takes the voice. But she's still one of my favorite singers, I still have the album she did with Dolly Parton and Emmylou Harris. I also went to see her in 1979. (I had a bit of a crush on her..I was 13 she was 30 it could worked right? ha ha!)

You are right it could be much worse. If this would have hit 10-15 years ago I would have been in real trouble. My kids were babies and I was a wind turbine worker climbing tall towers 4-6 times a day. But come to find out my wife and my crew of doctors all agree that I was starting to show symptoms even then! Things like the dystonia from the PD, at the time I would just attribute to a "Charlie horse", from not drinking enough fluids. Sun sensitivity and rashes, I would attribute to the chemicals I had to use everyday. Numbness and tingling in the hands and feet, I attributed to the type of work I did. So if I would have listened to my body back then, who knows maybe I wouldn't be dealing with all this now...at least not at this level.

So what do we call ourselves? Disabled doesn't work! Retired does sound like living at the golf course. My wife says "at home pharmacy test monkey"..hmmm?