Here we go again

I have a very thick memory foam mattress. I don't know of anything that might be better except for the Sleep Number beds.

It's frustrating because I need help now. Not after two weeks to get the test approved, another few days for results and then weeks or months for the drug to start to work.

I can, and have, gotten through anything if it's temporary. It's been 9 years since diagnosis and the drugs I've agreed to have done more damage than I can deal with. No more. I'll stick with my steroids since they are the least of the evils at this point.

Sandi, Sorry to hear your having such a rough time.. Hopefully you can get your Rheumatologist on the same page as you. You know what works best for you and more importantly what doesn't. I think you've already tried just about everything at this point. So if the steroids works best with the least side effects then so be it. Why do Rheumatologists want to tapper/hold off steroids so quickly when they seem to be the best treatment?

I don't know. I get that long-term use of steroids have side effects. I know what they are. But all of these other drugs have awful side effects too and they can be just as bad or worse. They can kill you.

I read some more about Arava and discovered that there is a serious adverse reaction with Plaquenil. It can cause suppression of the bone marrow resulting in low blood counts. Do I want to add that to all of the other problems that I have? No. I also don't want to go for months wasting more time with nothing but new side effects.

I wrote my Rheumatologist a letter and mailed it today. I can articulate myself much better in writing since my words come out jumbled half of the time. I told her that I have been cooperative and tried every drug she's ever suggested, but I'm tired of the medication Merry Go Round that never works out well. I asked her to please consider my suggestion of Solumed because I think it will give me the results that I want. I told her that I am fully aware of the side effects, but I'd rather use something that I am familiar with. I told her that I need help now, not months from now when the drug might do something. I told her that I am basically just strung from office visit to office visit and never get anywhere. We'll see how this goes. I was going to talk to her about this five months ago, but totally forgot when I got there.

It's frustrating to not be able to do the things that people expect. I don't even care any more about the things I want to do. I gave up on that a long time ago. There is never anything that I want to do, I'm too exhausted for that. She gave me the steroid shot and upped the Prednisone, and I feel 50% better already. I know what I need.

This is stated about the interaction between Plaquenil and Arava:

Highly clinically significant. Avoid combinations; the risk of the interaction outweighs the benefit.

Am I nuts to decline? I think the plan is to kill off all of the chronically ill to save insurance costs. :S

Sandi, as you said & as Dan said - you know what works best for you. So in my mind, no you aren't nuts to decline. You are like me - words come out mumble-jumble [except that time I yelled at my PCP out in the office hall and gave him hell, then fired him] but if I can write something it is better, never thought to write a letter to a doctor. I like what you wrote to her and I hope you get a positive response from her.

And heck, why would I want to take a medication that is going to mess with my bone marrow - is that an IQ test? Is she getting paid to push this medication - did she read up on it and know how it would interact with your meds?

You need my stepmother's rheumatologist - he just looked at her and told her she was going to be on prednisone the rest of her life.

Glad the shot & increased dose is helping!

Forgot - was going to tell you that I slept one of those really thick foam mattresses for a week when we stayed with friends. The first morning I got up with out being stiff - but after that I was back to being stiff when getting out of bed.

Melinda:

I'm sure she knows about the interaction since they are both common Lupus meds. She prescribes my Plaquenil and that is a drug that nearly everyone with Lupus uses. I have been on steroids for 10 years now and she knows I will never get off of them. We've discussed it and she prescribes them. She switched me from Prednisone to Medrol but I don't know why. The dose is slightly higher than I had been taking. I was on 10 mg's, she prescribed an amount equal to 12 mg's.

I've slept in other beds...our spare bedroom, the couch, vacation and hotel beds, etc...and always wake up in the middle of the night with my hips burning. My bed has been the most tolerable so far. My husband wants a Sleep Number but we paid $2,500 for this mattress just 6 years ago and there are so many other things that we could spend the money on.

We'll see what good the letter does. Solumed is a viable treatment option so I don't know why she'd be so opposed to it, especially when she's prescribed just about every other drug out there. I was thinking about it and in the last 9 years, have probably tried at least 30 different meds.

"She switched me from Prednisone to Medrol but I don't know why".. Medrol is slightly higher powered. 4mg Medrol=5mg Prednisone. So your actual dosage is a little higher. So maybe that's what your Rheumatologist is thinking? Hopefully you'll get the Solumed because the drug interaction with Arava sounds horrible!

I know someone who sells those Sleep Number beds and when I went to get a new mattress a couple years ago she refused to sell me one. She said that they have a lot of issues. She wasn't specific so I'm not sure what they are. She did say that the foam ones are far better at supporting the back

Well then, I guess I've got the best bed. It is comfortable. I really don't know what else might be any better.

Why not just tell me to bump up the Prednisone dose instead of switching to Medrol? I don't know. I guess it doesn't really matter.

How are your classes going, Dan?

Everyone I know who has a Sleep Number swears by them and they haven't had trouble with theirs. Hmmmm - maybe there was a bad batch?

My hips and shoulders hurt again while sleeping after the 1st comfy night on the foam mattress - I myself, wouldn't get one after that week sleeping on it. We are all different with likes & dislikes. I have a normal mattress and love it - stiff when I get up but don't hurt overnight while sleeping [except for the neuropathy pain].

Sandi is she giving you the Medrol generic or brand name?

Melinda wrote: Sandi is she giving you the Medrol generic or brand name?

It looks like the real deal.

My Mom is so bad that she's now living with me. She fell on Friday night and called me at 12:30 pm to go over to her house. We stayed for a few hours and then brought her here. She sleeps all the time, is disoriented and only wakes up to eat and change her clothes (she's urinating in the bed). It's not good. Her doctors know that this is going on and they keep having her get tests done, but so far, no diagnosis and they haven't suggested the hospital. Her calcium level is high so it's either her parathyroid or cancer. We'll know more tomorrow.

Sandi I'm sorry! Hope you got some good news today! [Doctors and their darn tests]

Sandi, Hope you get some good news today...you sure could use it.


I haven't started classes yet, I waiting till the fall semester.

No good news. Her PTH is normal which means we are probably looking at advanced cancer. She is seeing her oncologist next week but I think it's too late. All of her doctors have been aware of the high calcium since last summer and I trusted them to be on top of it. Bad idea. It's now crisis mode and they still won't help. She sleeps all the time, is peeing herself, is mentally confused and can't take care of herself. I told the PCP and oncologist's office and all they say is, "Oh, that's too bad" and they repeat the same blood work that they did the week before. I'm going to have to take over for her medically and legally and I have the POA ready to go. I'm spinning in circles....don't know where to start.

I did get some good news. My Rheumatologist called. She is only in my local office on Tuesdays so I figured I'd hear from her today. She must have read the letter and she agreed to the Solumed IV. She said they just have to figure out the insurance end then they will call me to schedule.

Sorry I hijacked your thread, Dan.

It sounds like your Mother needs a case worker, and I believe she would get one if she was hospitalized. And a case worker isn't a bad thing. What a decision - I can say I'd hospitalize her if she were my Mom, but would I? I'm really sorry Sandi, I don't know what to say.

Good news on the Solumed IV though!

Melinda, I have thought of that. She does need a caseworker because I need help with this. She's still well enough to worry about her hair though and has an appointment for a perm next week. She kept trying to make the phone call but kept getting the wrong number. She couldn't look at the number and dial it. I ended up calling. Her PCP also notified the state that she can't drive, so her license is being suspended. Not that I'd let her drive anyway, but it's one more step towards being declared incapacitated. She doesn't understand her bills any more either and made a mess trying to pay them. I have stacks of papers to go through.

My Rheumatologist called me back and said I haven't met my deductible yet so I'd have to pay out of pocket. I was ready to just say I'd pay but I have Medicare and supplemental insurance starting next Wednesday with no deductible, so we're going to wait until then. She wants to discuss my case with her colleagues because I'm so unusual as far as the meds go. I don't think I'm that odd!

Sandi Hijack away!!! You do so much for everyone else so when you need to sound off just go for it.

So sorry to hear about your mother. A caseworker would help take some of the load off.

Glad to hear your Rheumatologist finally came around. I hope this one works where the others have failed.

Sandi,

I am so sorry to hear about your mother. This aging parent ordeal is really rough. And I know it is falling on you at a time when life's burdens were already difficult to bear. My heart goes out to you.

Is it time to get your mom a new medical team? It sounds like you have lost confidence in her PCP and her oncologist.

Where can you turn for advice? My mom's PCP was somewhat helpful, but we got the best advice from a geriatric nurse. There is such a thing as a Professional Geriatric Care Manager. You might google it and see if you can find one in your area. It's probably similar to the caseworker Melinda mentioned, but outside of the hospital.

If your mom does get a late stage cancer diagnosis, hospice can be very helpful. At one point, due to a misdiagnosis, we thought my mother's end was near, and the help we received from hospice was invaluable.

I am sure Dan doesn't mind you hijacking his thread, but you deserve one of your own! I know I am not alone in wishing there were more I could give in return for all the help you have given.

Love, thoughts and prayers,
Rob

Thanks, guys. One day at a time. I think the doctors know that not much can be done, so they are not in any hurry to do anything. She sees her Oncologist next Friday. I tried to get her in sooner, but you know those appointment people. You don't get past them. In today's medical world, if it's not a literal medical emergency, you have to wait.

I'm so angry I can't see straight! My Mom's oncologists office called. The nurse said that her PTH was very elevated last fall, so she thinks it might be a parathyroid problem. I asked her why no one said anything or followed up on it with more tests and she said she didn't know. I also asked her why her level would be normal now if the problem still exists. She doesn't know. If this had been dealt with last fall, we'd have a diagnosis that would have been treated by now. We're at a serious point at the moment and no closer to an answer.

I think I'm going to take her to the ER tomorrow to insist they treat the high calcium. Maybe they will just do all of the tests that are now taking weeks to schedule. Her dementia is so bad that she can't pay her bills and is arguing with me and won't let me pay them. She doesn't understand what she's looking at. I have a POA and I'm ready to use it. She is not oriented to day and time. What a mess.

Ah Sandi I'd be livid too. I think it would be the oncologist I'd be having a talk with about treating her - that doctor would make me extremely angry. Your Mother needs help that really you cannot give her. This is heartbreaking!

Well I cracked and decided that she needs help today. I was going to wake her up, get her ready and drive her to the ER. The doctors office even suggested that today. So I got her a cup of tea and tried to wake her up. It was 3:30 in the afternoon. She kept saying okay, but would not get out of bed. I went in six times and told her it's time to get up and drink your tea. She kept falling back to sleep. So I called an ambulance. I know it was not a medical emergency, but the woman needs help. I can't watch her laying in bed 20 hours every day. She is going to end up dying from a blood clot.

I didn't even tell her they were coming. She woke up to two EMT's standing there and she was mad. They took her out of her warm, cozy bed and took her out in the rain. She got wet and was not happy. I went to the hospital after the ambulance.

She has been confused and never knows the day or the time. Suddenly at the hospital, she was totally alert and knew the answers to every question they asked. She even knew the date (I didn't even know what it was). This past week, she didn't even know what month it was. She made me look like I was making it all up. However, when they asked her if she knew why she was there, she said no, so they wrote down "altered mental status". Of course she didn't know. I didn't tell her why. Just woke her up and sent her off.

Anyway, I told them I wanted a caseworker because I need to know whether I have to use a Power of Attorney. She isn't paying her bills and is getting shut off notices. I try to help her and she gets mad and says she can do it. I told them that she hasn't bathed in weeks. I can't get her into a tub. They decided to keep her overnight and possibly transfer her to a skilled nursing facility for 21 days to assess her physically. But, if she does not seem confused tomorrow, they might just send her home (well, my house). It's only been a week, but I'm too exhausted to keep this up. I'm cooking her dinner at 8:00 and usually by 4:00, I'm done for the day. I spend half the day running her errands while she's sleeping so I can be home when she wakes up. She has tons of appointments and tests scheduled in the next few weeks and so do I. I don't have enough time in the day.

Oddly, her calcium was down. So what's up with that? It's been elevated for 6 to 9 months. It still is, but not nearly as high as it was last week and all the other times she was tested.

I don't know what the hell to do.

Sandi,

Bless you for all you do for your Mom, what a hard possition to be in.

It is difficult to take your Mother's independence away. I think what we all want in the end is to live comfortable with out pain as well as not to be a burden on our families. It is not only difficult for your Mom, but you too. You need to demand (use your POA if you have to) that you receive help caring for your Mom, not just physical help but emotional help too!

You are the rock we all depend on - sometimes the rock needs to lean on someone once and awhile too!

Many HUGS to you!

Sandi I wouldn't know what in the hell to do either. I would have called the ambulance as you did - was she given a case worker? did they send her home or to the nursing facility? Thinking of you!

Yes, she is at the nursing facility (since last night) and will be assessed this week. She will also get rehab for weak muscles due to sleeping all the time. She is only 5 minutes from my house, so that is making things even easier. I hope they keep her for a few weeks at least. I'm going to insist that we get some kind of help and I don't know where this will go, but we're headed in the right direction.

What a hell of a ride.

This is something we didn't go through with my folks or my husband's folks - I'm sorry you are having to go through it! Yes, you are headed in the right direction! Hang in there!

Hopefully you get to rest and recharge a little while she's there. And maybe between the higher dose of Medrol and the Solumed, you can start feeling better, so when she does come home you'll be more prepared.

Sandi, I'm so sorry you are having to go through all of this with your Mom. Glad to hear things seem to be going in the right direction.

Update..... I've finally made it to 8mg of Medrol, it seems like the Imuran is working for me. I did try to go lower(6mg) but I flared badly! I still haven't tried the Cymbalta, even though my Neurologist is adamant that it will work for me. Maybe I'll give it a shot, she said that if it works it will replace 3-4 meds(Neurontin, Valium, Lorazipam and possibly Norco) But I've heard a lot of bad reaction to this drug...

Also just got in from my ENT doctor, he along with my eye doctor think I have secondary Sojourns. Very dry eyes, dry mouth ect. So off to my Rheumatologist on the 30th..........

How's your Mom Sandi?

Good for you with the Medrol! I'm so glad that Imuran seems to be working! I'm still on 15 mg's of Medrol.....up from 10 mg's of Prednisone.

So we both are going through the dry mouth/eyes at the same time. This is miserable. Still using Restasis and it's not really working yet. My eyes always feel like I haven't slept for 36 hours and get suddenly blurry a few times a day. It happens when I'm driving too which is scaring me. My husband should have never bought me that new car; I'm so afraid I'm going to ding it. What are you going to do for Sjogren's?

My Mom is back at her house. She didn't pass her driver's test so she is losing her license and needs to be driven everywhere. The problem is, she doesn't check with me before making appointments and calls me two hours before like I'm some taxi cab. I had a melt down last week and let my two sisters have it, told them they need to step up. One of them did and the other one crawled in a hole. My Mom is still laying around all the time and is still confused. I'm not sure how much longer she can live alone. She had visiting nurses and OT/PT going to her house but doesn't want to be bothered with them and won't answer her phone. They tried to send a male nurse the other day and my Mom told them no way, she doesn't want to be raped. Really?

I second that - good for you with the Medrol! And a plus that the Imuran seems to be working. Yes, what happens now that they feel you have Sojourns?

Sandi that's so neat your husband did that for you - bet you love that car! When it comes time to put Mom in assisted living do all 3 of you sisters have to agree? I'm sorry the one sister has made herself scarce, what goes around comes around - she'll find out.