Need advice about prednisone self help

Janet
Causes behind vertigo and dizzyness can be very hard to diagnose. I was told this at the Mass Eye and ear vestibular clinic where I ended up after having bouts of vertigo which started after my first prednisone withdrawal 18 years ago. A very good neurologist there diagnosed me with vestibular migraines which for me have no headache but vertigo, dizzyness and sometimes nystagmus. What helps me is amytryptaline very low dose which I take for a few weeks when that happens. I feel for you though because the dizzyness is just awful, frightening and renders you unable to function at times.
It does sound like you are doing better overall so hopefully that dizzyness will decrease.

Had a blood count yesterday, down to 71 from 553 last week. Not looking very likely I'll derive any benefit at all from this fiasco. Have to recheck it tomorrow to see if NPlate should be restarted. I personally am not so sure that's going to happen unless it's below 10 or 20.
I'm sensing a whole new vibe at this office. Nurses that used to always have a friendly word seem to be avoiding me. The newest one of the staff seems to be argumentative. I guess I shouldn't be surprised, but somehow I am.

Also had a post-hosp visit with my internist who is relatively new to me. Till now, I had a so-so opinion of her; but she won my respect by being kinder and more supportive of what I've been through than I ever would have dreamed. As she spoke with me, she was simultaneously educating herself about Rituxan on her PC. As she read side effects, she said, "I'm not sure even most doctors reading this would take this stuff." When I voiced my worry about balance that might not return, she gently said, "Every single cell in your body was on full alert for over a week trying to defend itself against what it saw as an invader. Every cell now has to re-generate into a healthy version of itself, and that will take time." Of course, I knew that in my head... Lots of people have said it here and in my private life. But coming from a genuinely caring MD, it came home to land.

Wow, Janet. I'm reading a book right now called "Rising from the Dead". It's about a nephrologist who slowly came to a similar conclusion about medications (most doctors would not take this stuff). Great book so far.

She's right....it will take time to recover. Everything online says oh you'll be fine in 3 to 5 days. Not true! I'm sorry that your counts are down, but at least they are not too high.

Why do you think the staff is avoiding you? That's awful!

Glad you mentioned that book. I'll have to look it up. Seems very timely.
Coincidentally about 2 months ago, I borrowed but didn't finish "Our Parents in Crisis: Confronting Medical Errors, Ageist Doctors, and Other Healthcare Failings". Some of what I finished did resonate, but fortunately not to the same degree as the author's experiences. I did, though, catch several medication errors that a more casual personality or an even sicker patient wouldn't have noticed.

I'm a pretty perceptive woman, so I don't think I'm imagining the tone of those nurses. It must be true that they and the doctor really haven't seen serum sickness due to Rituxan in an ITP patient before. He's finally accepted it, although at the start he refused to say Rituxan was to blame until an infectious disease specialist confirmed there was no infection, plus the admitting doctor declared it was "clearly" serum sickness.
But I get a feeling the nurses still don't buy it and perhaps think I'm over-reacting. The argumentative one seemed to imply that I couldn't have been that sick because I "didn't even get two full doses in."
For now, I'll go and get my CBCs and keep my mouth shut. Time will tell whether I stay or not.

I cannot believe the denial! What do two full doses have to do with it? That makes me so angry....the ignorance! Medical professionals really need to become familiar with the adverse effects for the meds that they give out so easily. These are serious drugs and it's almost like they get mad and take it personally if you have a bad reaction. Grrrr.

I got the book on Amazon. I can't wait until bedtime every night so I can read more. I once read a book called 'Bitter Pills'. It's about a man whose wife ended up with permanent neurological problems from an antibiotic. He researched how drugs are trialed and described how the last phase of any drug trial is when the drug is released to the public. Scary stuff.

Sandi wrote: These are serious drugs and it's almost like they get mad and take it personally if you have a bad reaction. Grrrr.

Sandi, that's exactly what I was thinking. Like they think it's my own fault it was such a fiasco. As if I had just believed harder, it would have worked out perfectly.
I must have appeared better yesterday... My husband said I looked more confident walking, and the staff was quick to notice. The atmosphere was less charged with negativity. A recovery will alleviate their guilt feelings, I suppose.
I got an NPlate shot. Count was 11. I negotiated a dose decrease, based on my weight loss of almost 20 lbs. and the fact that I want to give my bombarded body a rest from another chemical assault. He wouldn't agree to a big change, but it was a small victory.

Do you want to know when I quit believing in Big Pharma and the FDA? When I was subscribing to a couple of homemaking magazines back in the '70s/'80s, I would never throw any issues out until I had read them through. They piled up pretty deep before I decided to finally skim through the stack and recycle them. I had a 10+ year collection, silly I admit, but I was determined to wade through them all. As I started with the oldest ones, I found in each issue multiple drug ads for products that had long been pulled from the market over death/injury lawsuits. Not one of them was still being made. Then as I continued through the stack, a news magazine show aired a piece on the FDA having precious little to do with the approval process. That stuff's rushed to market without any meaningful testing at all. The goal is to earn billions for the stockholders before it gets pulled, never mind the people who die and are maimed in the process.

I never knew that you felt that way. I only began to open my eyes in the past three years. Prior to that, I believed in the medical system. What woke me up was finding out that babies were given the Hep B vaccine at birth (which makes no sense), and then I saw the childhood vaccine schedule. I felt sick. They are giving babies 4 to 6 injections in one visit, and it is every few months. I had no idea and think that is atrocious. Then I found out that Jonas Salk did not save the world with the polio vaccine. His vaccine caused 40,000 cases of polio and some children died. It was called "The Cutter Incident". Albert Sabin was the one who actually came up with the polio vaccine. When you research the history of polio, you find that deaths from polio had already declined prior to the vaccine and when the vaccine was introduced, the definition of the polio diagnosis changed to make it look like there were less cases. Polio still exists, but they call it 'acute flaccid paralysis' now. Change the name and you totally eradicate polio, right? Every single vaccine has a similar story. I research nearly every day and I never stop finding these things. True placebos are never used with new vaccine studies; they use another vaccine or a vial full of adjuvants. That way, the side effects of both groups are comparable. They stopped using the word 'placebo' in studies and now use the word 'comparator'. It goes on and on.

While discovering all of that, I also began to find out that the FDA, the CDC and the drug companies are all revolving doors. The drug companies basically write the medical textbooks that students learn from. I think you'd like Rising From the Dead. It's all about a doctor's slow realization of the truth of the medical industry.

Glad you are doing at least a little better. That was so unfair of the nurses to treat you like that-it wasn’t your fault you got serum sickness.
Your primary care doctor sounds like a keeper-a doctor with empathy is always a good thing.
Something that drives me crazy is all the ads on TV and magazines for really serious medications for cancer and autoimmune disease where they glibly say side effects can include death, serious infections, lymphoma etc. I wish I could get off of all meds!

Dru - I feel the same way. I want to get off of my meds. I want off of this merry-go-round. In the past two years, I have had doctors refusing to refill my meds for things that are beyond my control. Like this: Last week I called for a refill on my BP meds. While I was in the shower, they called and left me a message. They said that the PA I'd been seeing for the past 8 years left the practice and since I didn't have a doctor there now, they wouldn't refill my script until I hooked up with one in their office. I called them back and left a message, but they didn't return my call, so I did not get a refill. Blood pressure meds! I go through this ALL the time, and they are nasty about it like I did something wrong. I'm so sick of it all and the control they have over me.

I hate to keep bringing up vaccines, but 'death' is listed as a side effect on some of those in the inserts. Do you think people would offer up their arms so quickly if they knew that? But people don't know because all we hear is 'safe and effective'. There is no informed consent and there is absolute denial about the possibility of serious adverse effects.

I believe what you say about the nurses avoiding you, Janet. Perhaps they cannot accept that they were wrong and admit they didn't know anything about serum sickness. Hopefully they will educate themselves- doctor too! Good you are seeing progress in your recovery! Pamper yourself!

I've told this story before but its similar in that I was blamed when I refused to be overdosed by the clinic pharmacist. My Nplate dose was 453mcg and my platelet count that day was 66K. Perfect, right? Well, my doctor was out of the office and the chemo pharmacist who mixes Nplate decided my platelets were too low so upped my dose to 518mcg. The injection nurse alerted me, I refused the injection. They had to take the syringe back and squirt some out to give me my proper dose of 453mcg. The pharmacist was angry because she had opened a third vial Nplate to push the dose over 500mcg (each vial holds 250mcg). She blamed me for the error telling the nurses "That just cost the clinic $18,000." And I think I was shunned for while for being a difficult patient.
My hemo did go to bat for me that time. My injection nurse who gives me all the gossip said they had orders from the doctor regarding me- they are to "ask her what she wants and give it to her." I liked that.

Sandi
That sounds SO frustrating about trying to get a refill. I just don’t get why some medical practices seem so patient unfriendly.

I'm not trying to slam the entire medical profession. My daughter is an RN who is working on her Bachelor's and she works her butt off. She nearly passed out from exhaustion at work last week from the long hours. She was on the floor surrounded by staff. There are some very dedicated people who love what they do and try to truly make a difference. The problem is all of the new policies and government regulations that is destroying the morale. Every specialist I see these days is curt and arrogant and my main complaint is that they don't listen to the patient!

I had a voice mail message from Cranky Nurse at my Rheumatologist's office last week. She said, "Did you ever actually go and get that bone density test or do I have to send you another script"? I saw the Dr. last in January and she never even mentioned a bone density let alone give me a script for one. There is no reason to have such a nasty tone of voice on a voice mail. I'm just fed up with being treated this way. They screw up constantly; everything is a fight.

Every single nurse assigned to me during those six days - except for the ICU Cackle Club - should win some sort of award for exceptional care and service. I really could not have asked for better and commended each one by name in the satisfaction survey sent by the hospital after discharge. It takes a special sort of personality to do that job as well as they did. Almost none - from the paramedics to the ER docs to the RNs and CNAs - had heard of Rituxan or serum sickness, but each one was eager to learn exactly what had happened to me. Those who aren't willing to learn new things in order to make themselves better professionals or better people in general aren't worthy of much respect, IMO.

Sandi, I'm probably not as conservative as you about vaccines, maybe because I haven't researched them as thoroughly. I still believe that some have great value, but some have none at all beyond profiteering. And I do think the number and schedule of vaccines they put newborns on now is horrifying. The smartest MD I ever encountered was my kids' first pediatrician. When it came time for son's rubella vaccine, Dr. B said he didn't give it to boy babies ... That prevention of the disease is aimed at unborn babies whose mothers ought to be taking care of their own immunity instead of subjecting all baby boys to the risks of a live vaccine that prevents an otherwise innocuous disease. He did warn that my school district was likely to feel differently and that I'd probably have to accept it in the end or be prepared for a legal fight. I admit it, I caved.

The thing that really makes my blood boil is mandatory water supply fluoridation. It's pure thyroid poison. Because of its potent thyroid hormone inhibition, it was formerly the drug of choice to treat hyperthyroidism. It likely contributes to the incidence of autoimmune thyroid diseases. The amount an average person consumes daily is more than the typical dose that used to be given for hyperthyroid treatment.

Dru, I don't know why they advertise chemotherapy drugs at all, really. Most onco's worth their salt aren't going to let a cancer patient choose their treatment. As picky as I am, even I wouldn't try that. Some subjects will always be beyond my depth. There's an asthma drug commercial that airs multiple times during the evening news hour. I'm still awestruck each time they get to the disclaimer that "XXX increases the risk of death from asthma." The absurdity of that is astounding.

Posey, I remember your NPlate experience well, and I think you were so brave to stand up for yourself against that pharmacist. I'd like to think I could do that, but have my doubts. After all, I'm the wimp who took the Rituxan that I knew would probably kill me. My track record of bravery isn't all that great.

Enough of my rambling. I have to find something to do. All this sitting is getting to me.

My daughter works in critical care with many intubated patients. She is always telling me that nurses ignore those patients and have the mind-set; if they can't speak, they are unaware and not worth trying to communicate with. She said that she always tries to figure out what might make them more comfortable. She also tells me about the errors that go on that cost patients. This is a top hospital.

Fluoride - you're right! Toxic waste. Tell people it's good for them and they'll believe it. I use a water filter pitcher for myself and my dogs which I hope helps.

At this point, I don't believe that any vaccine has a benefit. The effect only lasts a few years, and most state that you can get the virus that you're being vaccinated for. The live viruses shed for a few weeks, so any immunocompromised person who comes in contact with a vaccinated person can get the virus. That is in the inserts. A big problem with the varicella vaccine is that children are now getting shingles, so I'm sure they will soon add the shingles vaccine to the childhood schedule. Global mandatory vaccination is coming soon. It's already mandatory in CA for children. They are trying to pass a bill now that if a child is not vaccinated, the parents will not receive any social security or disability benefits. It's mandatory in Australia - parents do not get paid if their kids are not vaccinated. People need to see what is going on here. It's actually a violation of the Nuremberg Code to force anyone to take an injection if they don't want it. If we lose that right, we're done.

I had a short spell working in ITU. The first day I was there the nurse I was assigned to shadow told me the entire hospital thought ITU nurses were the creme de la creme. Don't think she liked my response of 'not what what I hear around the hospital. Most real nurses think you are so far up your own backsides it is unbelievable when basically you are machine minders who cannot cope with nursing anyone who can talk or eat.' She was a cow who thought she knew it all. I shot her down in flames one day by showing her & several others how to correctly deal with a problem regarding a particular machine renal nurses were very au fait with.

I trained to look after people. The only job satisfaction I had on ITU apart from shooting cow nurse down was sitting at the bedside with a couple of ladies talking to them & supporting them through their mother's death.
It sent me over the edge within 3 months, I hated every minute of it and ended up at a friend's in tears . She dragged me off to my GP who signed me off and suggested I went back to my previous job ASAP which I did after 4 months on the sick with stress.

I like to nurse patients I can build a relationship with. I have learned so much from patients over the years I'm sure it has made me a better nurse. As has being a patient myself.

MrsB:

My daughter is having a difficult time in critical care because it is so dire and stressful. The only reason she is there is because in order to get accepted to the Doctorate program she is going to apply to next summer, she has to have the experience on her resume. She would not have chosen this otherwise. She does try to build relationships with the families and tells me all the time how much families tell her they appreciate her. She is not one to toot her own horn; she tells me because it makes her feel good to get the feedback so she knows she's doing a good job. She's done nursing in other areas and says that this is by far the hardest. She has many patients who can speak and some are combative due to medications, mental disorders and plain confusion. It's been a year so far and I don't know how she does that full time plus go to school full time. Nursing is not something that I could ever do. I'm a horrible patient...I don't have any patience with my own self so I know I wouldn't have patience with anyone else!

Yes, I'm sure being a patient would help any nurse or doctor! It sure changes the perspective.

In my opinion, most nurses' don't get the credit they deserve! When my mother was in the hospital last summer(6 months between 2 hospitals), she had great nurses. But I have to admit, the staff at the second one really treated us like family. We had our favorites, but can't say enough about any of them.
My hat's off to ALL nurses in their chosen professions!

Amen Cindy!! And if one can't take "it" one shouldn't be in that profession!
I know a certified oncology RN and bless her, what she deals with daily isn't easy. She goes to funerals on her days off when one arises. Her patients and their families love her, they ask for her, they give her flowers on Nurse's Day, send her cards of thanks - she loves her patients and they know it.

Janet - how are you doing?

Still dizzy, Sandi. And getting more worried by the day. It's been six weeks since the first infusion, and there hasn't been any improvement in my wobbliness in probably two to three weeks.

To top that off, at the start of last week, I developed excruciating pain, knots, and spasms in my shoulders/upper back. I'd had that before, but unlike the other time there was no obvious "trigger" for it. It was keeping me up at night with level 8 pain. I saw the chiropractor four times with little improvement. At the fourth session, he was talking about reasons for pain and mentioned psychological ones. At first, I brushed it off ... Then the light dawned. I think my psyche is livid about all this... I'm mad at myself for doing it, mad at the MD for pushing it, mad that I can't live my life in the same comfortable rut I've enjoyed. Have a complicated story that I won't go into now, but... One of my grand-kitties is at death's door right now - has a feeding tube! - because I was sick and couldn't take care of her when I was needed to. I had stuffed all that, just trying to heal and move on. I'm the world's biggest pessimist, so it's hard; but once I consciously decided to avert negative thoughts, stop dwelling on the hospital stay, and get out as often as possible into nature, the back spasms gradually started to relax. They aren't gone, but are far improved.

I will finally get my eye exam next week, but I no longer think this wobbliness is from eye incoordination. If the eyes turn out normal, I thought about getting checked for inner ear damage next. But the more I think about it, I'll probably move directly on to a neurologist. I found the name of one with a superb reputation for getting to the bottom of things.

Thanks for thinking about me. Not many people 'get' this, do they?

Janet:

Try getting a few massages. As a person with chronic neck and back spasms, it sometimes helps more than the chiropractor. It should also help to calm your mind.

I hope you get to the bottom of it all. I know the frustration of that. Rituxan set off a fireball of inflammation for me that never went away, just keeps getting worse. For me, the trade-off wasn't worth it and I regret suggesting it to my doctor. It was all my idea and I didn't have enough respect for the potency of that drug. It's destroyed years of my life. I hope this is temporary for you.

This chiropractor doesn't do the traditional spinal adjustments on older people. He's massage and electro-therapy oriented. Had my last session with him yesterday. I still can't sleep in any position except flat on my back. Attempts to lie on my side sets off arthritis-like pain from my waist to the base of my skull.

Did your inflammation start with your first round or second? Did you realize immediately that's what it was from?

Your much younger self couldn't have known this would all happen to you, Sandi. After hearing what you've been through, and instinctually feeling it would happen to me too, stupid me shuffled right off the cliff.

The inflammation began when I got serum sickness and never went away after that. My guess is that it stirred up the Lupus antibodies that I had hiding and dormant. Since I was misdiagnosed after the first bout of serum sickness and had Rituxan again (and got serum sickness a second time), it got even worse after that. I kept hoping it would go away but it never did. That is when I began to tell my doctors and at first, they thought it might be drug-induced Lupus. Nope. It took a year and a half for my labs to meet the Lupus criteria; I had the symptoms first.

My younger self was not as cautious as the person I am now. Six years ago I was stupid and got a tetanus vaccine after running into a rusty nail. Right after that, my knuckles began to swell and that has gotten progressively worse too. I have trouble using my hands. I didn't know that vaccines induce inflammation in order to work. For some people (me), it sets off a storm. Never again.

I had labs done at the Rheumatologist last week and for the first time ever, my CRP came back elevated. Cranky nurse called and asked me if I wanted to start Imuran since I had obvious inflammation. Hell no! People without Lupus get elevated CRP's and they don't stick them on Imuran. I certainly won't do it based on one test result. I'm trying to research and find a natural way to deal with inflammation. I know sugar consumption has a lot to do with it.

I watched this fantastic video last night by an Immunologist. You might be interested in this, Janet. She spoke about Glutathione and how great it is for the immune system. It helps the body to detox and reduces inflammation. I just ordered some. All of her videos are great! It's over an hour long but she is fascinating and time goes fast. She knows what she is talking about.
www.youtube.com/watch?v=nRCcFe7DTRA

Sandi
I just googled Glutathione and found link below ...there are pages and pages of information and links to many more interesting reads
www.immunehealthscience.com/glutathione.html

I know! The info is endless. It is produced by the body but many people are deficient. Acetaminophen can cause a deficiency and I've been on that for years (Norco). Glutathione is key for a healthy immune system, along with Vitamins A, C and D. I'm wondering why I haven't heard this before.

Janet - how are you? Any improvement?

I was thinking of you also, Janet. Hope you are okay.

Hi Sandi and Dru. Just saw your question... Thanks for asking. This back/neck pain makes me unable to sit at the computer as much as I'd like. This is the first time I've been here in several days.
I haven't yet checked out the video, but I did follow mrsb's link and found it mostly over my head.

I've come to the conclusion that my spinal pain might be coincidental with the Rituxan poisoning, probably not causative. It seems more structural than strictly arthritic or neurological, and I already knew I have a bad curvature there. I was nervy enough to make pizza from scratch yesterday and paid for it dearly at bedtime. Had the most painful night yet. Have to figure out what to do about this. Can't live my life the way I want to anymore. I swear, I've aged 10 years in the past 6 months.

Dare to say it... don't want to jinx it, but... My wobbliness seems improved over the past few days. Nowhere near gone, but better. I did make an appointment with that respected neurologist, but it's not for 7 more weeks. If things continue as they're going, maybe I won't need him after all. Fingers crossed.

I have a question. I should research it myself, but maybe you know. Does Rituxan stay within the body for weeks/months doing its thing, or does it have a relatively short half life and leave the body while the B cell destruction goes on? I hope that makes sense and isn't a dumb question. Just want to know if that stuff is still circulating in me.

Platelet counts are still all over the map - before, during, and since the two infusions.
Five weeks ago, 11; three weeks ago, 776; two weeks ago, 661.
Doc tried to credit Rituxan kicking in. Fat chance. Last week, count was 2. He gave me my former NPlate dose which I consider too high, given these mega-counts I'm getting between the single digit crashes. I wanted to go back to a starter NP dose and see where it takes me, but he refused. It may be time to cut this guy loose. But my philosophy is you always have to be careful what you wish for, as you might end up far worse off.

From what I can remember, Rituxan stays in the body for 6 to 12 months. I haven't researched it in a while; this is from memory. It's not a dumb question at all! If you want it out of your body, start doing some things to detox.

I'm glad you seem to be doing better as far as the dizziness. As for the neck, maybe you have a herniated disk or stenosis? I've had three (have stenosis again now) and it is very painful.

Janet glad to hear you are doing a bit better. Hopefully more improvement over time. I looked up your question- its a good question! I wonder about these things too. Seems Rituxin clears out pretty quickly, its very individual though. That is if I am reading this correctly. The effects of Rituxin last for 6-12 mos but seems the actual drug clears out. See what you'all make of this dense material--

The median of individual estimates of rituximab terminal half-life was 22 days (range, 6.1 to 52 days), which is typical for immunoglobulin isotype IgG in human and is longer than that reported for humanized anti-CD20 clinical candidates, IMMU106 and of atumumab of 12.0 and 14.3 days, respectively.

2007, The American Society of Hematology
www.bloodjournal.org/content/110/11/2371

www.ncbi.nlm.nih.gov/pmc/articles/PMC3729907/