Need advice about prednisone self help

That's one thing I never really understood....half-life. Does it mean that the drug halves itself in 22 days?

Thanks for that information, Posey.
Someone explained it to me once that half of the drug will be gone within the specified time period, and during the next time period will be half gone again. That is, half dissipates, then half of the remaining half dissipates after the same amount of time, and so on. I never investigated whether that's correct or not.
However long it takes Rituxan, it's somewhat a relief that it doesn't stay there for 8 months.

There is soooo much out there about "detoxing"! Do you know of a basic, not-too-hard plan I could start? Never did anything like that before. I was healthy till now and didn't need it.

I had a thoracic/cervical MRI last winter. The neurosurgeon I saw didn't explain it in medical terms, but I can tell from the report there is stenosis and "protrusions". Nothing indicates anything touching the cord. He prescribed PT, which did help until I got lazy about the exercises. This time, the pain is at times unbearable and I can only sleep in corpse postition. Once the chiro reduced the pain, I restarted my exercise faithfully; but after 3 weeks of that, have gotten a bad flareup that's making it impossible to do them now. I've been so sick and tired of not being able to live my life, stubborn me was determined to make pizza from scratch Saturday. I figured I'd pay the price, but I also figured if it was going to hurt anyway, we might as well have something good to eat as a payoff. LOL
Anyway, I doubt Rituxan has made an impact on what was already a bad situation. It's tempting to blame everything on that stuff, though, isn't it?

Janet - it's possible that it progressed to myelopathy which is when it involves the spinal cord? Any numbness or pain in the arms? You might want to look into spinal decompression. I just went to a spine center a few weeks ago to see if I was a candidate for that because it's a great alternative to surgery. He did an x-ray and said that my neck was too bad to even attempt it. I wish I had done it years ago. I've made too many mistakes over the years.

I do a little bit of detoxing bit not enough. Fiji water is a good detox because it has silica in it. I also take some supplements that are good for detoxing. Selenium and MSM are two that I take.

Love the picture!

Hi again. I'm reading here most days but can't sit long enough to post.

My back has been much improved since Wednesday. Have been sleeping in less pain, taking fewer OTC pain meds. But I gave driving a try yesterday, and it didn't go well. I had thought my main problem was walking and seeing at the same time; but there's still some dizziness while I'm sitting. Checking oncoming with quick turns of the head were "swimmy". Wouldn't feel comfortable at the wheel except in the very lightest traffic and the shortest distances. At the end of the day, my back was tightened up again, a clear sign that much of the pain is psychological. I'm not sure that can be resolved if the dizziness doesn't. It's coming up on 10 weeks since The Assault happened. I haven't given up all hope; but from this view, it ain't lookin' pretty.

To top that off, last week's count of 2 morphed into 400+ this week. It would appear that Rituxan is causing the NPlate spikes to be astronomically higher... Oh goody... As if the NPlate-only spikes weren't worry enough. Not only didn't Rituxan solve anything on its own, it's made the treatment I was using even riskier.

My chiro has been talking of trying traction, which I think is the old-fashioned term for "spinal decompression", isn't it? I'm so sorry it's too late for you, Sandi. You deserve more uncomplicated pain relief in your life than you've been finding.

Sorry things are still not that great for you. You are going to see a neurologist soon? Maybe that doctor will have some help for the dizziness,

Janet - traction is similar to spinal decompression, but there is a different machine. He could have just used the word traction though to give you an idea of what the treatment would do for you.

I hope things get better for you soon.

This guy has been in practice for 36 years, following his father before him. He has his dad's ancient equipment, including a genuine traction machine. I haven't decided to go there just yet.

Anyway... Here's wishing all who read this as much strength and good fortune as we need to make it through our particular health and personal challenges.

I'm sorry to hear that things aren't getting back to normal for you yet. I still am hoping that more time for you will help with some of these weird symptoms. I know it must be so frustrating to be dealing with such a set back.

I'm glad that you are updating us when you can and hang in there as you work through some of these neurological issues. All the best!

9/17/18
Update time for anyone interested.

In the interest of totally fair reporting, I have to confess here that Rituxan is apparently not the direct cause of my ongoing dizziness. I had auditory and balance tests done last week. The audiologist was aware of the May debacle, including the Rituxan and the four infusions of Vancomycin (famous for its vestibular toxicity) I was given for non-existent infection. Turns out, only my right vestibular nerve is damaged. If a drug was to blame, it would most likely be bilateral. She determined that a virus contracted in the hospital has damaged the nerve permanently. Now, a more casual observer might want to absolve Rituxan, but not me. If not for it, I wouldn't have been in the hospital in the first place, where the virus was able to have its way with my compromised immunity. Rituxan was the get-away driver, not the gunman, and is guilty by association. The virus also damaged my hearing and left me with pounding tinnitus. They tell me vestibular training can restore some normalcy, but they're the ones who profit from the program being offered... So I take that with a grain of salt.

Getting back to the original subject I started this thread about... "Rescue" prednisone. Count is still as unstable as ever, except since the Rituxan, the spikes are astronomical... Frequently in the 800s instead of 200s. Still, like clockwork, I'll be at 2 again on the third week.

I get a count and shot on Tuesdays. Last week, I began showing a few petechiae on Saturday afternoon. I knew that if I did nothing, I'd be wet bleeding and at 2 again by Tuesday. On Sunday morning, I took 15 mg of pred and the same amount on Monday. There were very few new petechiae that day and no oozing blood anywhere. Took 10 mg on Tuesday before going for my shot. Count that day was 27 - not 2 as expected. I firmly believe the rescue plan saved me a lot of grief.

Janet, your story is definitely a 'treatments are worse than ITP' saga. Very unfortunate chain of events.
The only thing that comes to my mind on your counts is what Sandi mentioned early, that is 'cyclic ITP'. I have read online case reports / studies that claim Danazol is effective. I don't recall reading anyone here on PDSA that has actually had cyclic ITP.

Hal - we had a few with cyclic ITP back in the day....quite a while ago. They might not even be on this board since it's been changed at least three times over the past 20 years.

Janet - I don't blame you a bit for the way you feel. Rituxan 'indirectly' caused my problems too. Question though...how is it possible that a virus will only damage one side, but not a drug? I think it's all a guessing game sometimes; they have no real way of knowing causation. Drugs are often denied. My serum sickness was a 'virus' too, the ER doctor told me Rituxan didn't cause it. What side was your IV on?

I did a quick search of cyclic ITP. It appears that people who have it don't respond to treatments. I'm a great steroid responder, and NPlate never fails to raise my count; it just won't keep it up for 4 weeks in a row. I never had IVIG... Don't know what it would do. I've been in some kind of treatment for so long now, I have no idea whether my counts would be normal for those two high weeks and then crash. I sort of doubt it. I think I'd be low all the time without something.

Sandi, I'm to see an ENT this week and plan to ask him the same questions about drugs vs. virus. But I'm no fool. Don't see how they can be 100% certain in hardly any similar situation.

Do I remember correctly that you weren't hospitalized with either bout of serum sickness? Just evaluated and sent home? When I was admitted, they weren't quick to blame a drug reaction, either. They did their best to find some kind of infection in the bloodwork. Even though they didn't find anything, they drained multiple bags of anti-biotics into me "just in case". For a brief moment, they said I had a UTI because of a wonky blood result that turned out to be a common sign of dehydration. It wasn't until the day of discharge that the words "serum sickness from Rituxan" were spoken out loud.

I was told last week that the virus that causes vestibular neuritis doesn't cause systemic disease like flu viruses or stomach bugs. You'd never know you're infected until your balance system has been fried. Odd thing. Believe me, I've spent hours researching a connection between Rituxan and ototoxicity. If there is one, it hasn't been written about with any certainty. You and I know there's a lot of hanky-panky in the drug game, though. If one is profitable enough, the worst negatives might not ever become widely known.

Janet, you might be interested in these posts by user 'Kellyabe'
pdsa.org/discussion-group/search.html?searchuser=Kellyabe&exactname=1&searchdate=all&order=dec&childforums=1
She reports getting both Serum Sickness AND Shingles on the first round of Rituxan treatments. Did you know, there is a rash less (and blister less) version of Shingles? Is there a chance that is what gave you nerve damage? Nerve damage is what Shingles does often.

On the cyclic ITP. Not sure what you read, but right, steroids and IVIG isn't effective in stopping the count crashes associated with cyclic ITP - hence the use of Danazol. IMHO trying to treat cyclic ITP with Nplate doesn't really make sense. It lasts for a week, at least. I don't recall reading a case report where that drug or Promacta was tried.

Yes, I was sent home both times. The first time, I repeatedly told the doctor that I'd been having Rituxan infusions. If he'd bothered to look it up, he would have seen that I had classic serum sickness (it was listed on the insert). He just said 'virus', go home. The second time, my Hemo happened to be there and he diagnosed it. I got Morphine and steroids that time. I've been on steroids since (2005). A few months later, my Hemo handed me a piece of paper with a list of drugs that cause serum sickness. Rituxan wasn't on it, so he recanted the diagnosis. Are you kidding me? It was classic and happened both times when I had Rituxan! I told him that the list was incomplete.

It's odd that people just seem to contract these 'viruses' right at the time a drug is given. Do you actually know anyone who ever had anything debilitating occur from an undetected virus out of the blue? I don't. I can't even count how many people who had serum sickness after Rituxan were told at the ER that it was a virus.

So they pumped you full of antibiotics for a suspected virus? Antibiotics do not do anything for viruses. If you had a bacterial infection, your white count should have been elevated and you would have had fever and other symptoms of infection. Your symptoms at that time did not line up with an infection if I remember correctly.

I'm angry for you. Mismanagement/misdiagnoses can result in great harms. If you haven't seen The Bleeding Edge yet on Netflix, you should check it out.

Hmm.. Rituxan and shingles? A herpes virus is thought to be responsible for VN. Seems feasible that Rituxan might reactivate herpes the same as it can reactivate hepatitis. How can it be that we people in the trenches can make these associations, but scientists can't?

Sandi, my story is such a long and complicated one, I left a lot of details out in a lame attempt at brevity. As for the antibiotics ~~ In the ER, the hospitalists very much suspected Rituxan as the culprit right away, but in the interest of responsible medicine, they had to rule everything else out. Since my symptoms appeared similar to sepsis, they began Vancomycin right away, and I got four infustions of it before they felt confident enough in the blood studies that there never was an infection. That's when they finally decided to call out Rituxan.
They had no reason to suspect and didn't mention any virus at that time. The virus subject didn't arise until last week in the context of my ongoing dizziness.

If you have any interest in VN, following is a fast read on the basics. (After I read it, I realized my own diagnosis is probably technically "labyrinthitis", because I have documented hearing loss and tinnitus with it.)
my.clevelandclinic.org/health/diseases/15227-vestibular-neuritis
I don't see how these audiologists would have a vested interest in protecting Rituxan. What they're saying makes sense to me. It does seem to me that a drug - either Rituxan or Vancomycin - would have affected both balance nerves, not just the right one. They frequently see "-mycin" antibiotic damage, and it's bilateral. But I retain my natural skepticism, and now that I'm aware of kellyabe's experience, I'm extremely inclined to think Rituxan can reawaken herpes. I'll be asking a lot more questions of the ENT tomorow. If he's like the many other MDs I've become acquainted with over the past 4 months, I doubt he knows anything about Rituxan though.

I typed out a whole thing and lost it.

The gist: It makes more sense since you filled in more of the story.

I wouldn't say that the doctor would protect Rituxan due to a vested interest, but they might protect a procedure that another doctor did. It's hard to say what happened, Janet. There were so many things going on. We know that we take risks when we use these drugs; you certainly did. I was reading about Rituxan yesterday and saw that it contained Polysorbate 80. I wasn't thrilled about that because it opens the blood brain barrier.

Hi midwest - I have been lurking on your thread for a while. I am sorry for what you went through and hope that with time, you recover fully. The human body is amazing (but can be slow). After a cycling accident in my early 20s, I was told nerves in my face would either recover within six months, or never. It took 2.5 years but I have full feeling in my entire face. Doctor didn't believe me. (Seems like arrogance is prevalent with a (very memorable) minority of doctors...)

For your cyclical ITP, could it somehow be hormonal? Or possibly something in your environment, e.g. anything you do regularly that could set it off (professional cleaning? hair dye? change your water filter)?

Finally, do you know if you respond to IVIG? It's not a cure but some people do get it every 3-4 weeks (for other conditions) and the risk profile is not 0 but it's better than Rituxan. It does tend to wear off within 1-3 weeks:
www.ncbi.nlm.nih.gov/pmc/articles/PMC4792336/

midwest6708 wrote: ...
How can it be that we people in the trenches can make these associations, but scientists can't?

It was just a coincidence on my part. I happened to be doing a little study on those that have had Shingles and read your post. It is really amazing though how much useful information is in old posts.

.

Maria, you are so kind to tell me about your recovery experience. It gives me great hope to hear from "real" people like you (as opposed to doctors) that recovery has its own timetable, even if it's slower than we'd like.
~~ I've never had IVIG, so I don't know if I'd respond. At this point, I hate and distrust all the treatment options, so I'm very tempted to wean off NPlate to take my chances without anything. Couldn't be much riskier.
~~ I'm 68. What's a hormone? LOL

Thanks for that, Hal.

After my ENT visit yesterday, I've concluded I'll never know exactly what happened to my vestibular nerve. There's no test that can determine what caused the damage. He said it can be due to a virus, stroke, bleed, injury, etc. He suggested the ITP could have led to such a bleed, but I know my platelets at the time were in the normal range. He reiterated that drug damage would be bilateral. I have to accept that I'll never know precisely, but I'll go to my grave knowing that Rituxan was the catalyst.

Well, well. Look what I found here, from the American Journal of Audiology, March 2018, Vol. 27, 19-24.
Just posting this for the benefit of future patient research.

aja.pubs.asha.org/article.aspx?articleid=2673597
"Conclusions: Patients treated with biologic disease-modifying antirheumatic drugs are more susceptible to viral issues, and this may include vestibular neuritis. For the current case, identifying this possibility and recommending viral suppressant medication allowed her to continue with successful treatment of rheumatoid arthritis while avoiding additional vertigo events."

That is really interesting.
How are you feeling? Are you seeing any improvement. When I had vestibular issues the PT I did seemed to help. But, mine had a different cause.


Dru

Wow - good find, Janet! You hit the nail on the head with that one. Do you think that antivirals would help you out?

I'm sticking to my guns and refusing all biologics (have been for many years). I don't care what anyone tells me that I could use as a preventative; those drugs are dangerous for some people. I am one of them.

How are you doing?

Dru, I suspect the PT for vestibular issues would be the same no matter the cause. The goal is to retrain the brain to deal with the mixed up signals its getting. I had planned to enroll soon in specialized advanced vestibular therapy that has a much higher success rate than "regular" PT. But I may have to postpone that until I check out some other problems I'm having. My calendar is already full up with 9 medical-related appointments for me this month, plus 4 for my husband's upcoming cataract surgeries. I don't know when I'd fit anything else in at the moment. Gotta put something on the back burner.
My balance has improved bit by bit by doing my PT exercises daily. At least I can drive around my neighborhood by myself now, which is huge.

Sandi, I don't know if the antiviral would help at this late stage. Don't particularly want to do it anyway. I'm sure you get why not.
I would dearly love to get my hands on the full version of that article, though. It's only available to users of institutional libraries, as far as I can tell. Sure would like to know the specific biologic used.

Janet, I am glad to know you have seen at least some improvement. I can relate to the full calendar-medical appointments! Not fun.

midwest6708 wrote: Sandi, I don't know if the antiviral would help at this late stage. Don't particularly want to do it anyway. I'm sure you get why not.

More than you know, Janet! I'm facing the possibility of an anti-viral myself and have been avoiding dealing with the problem because I do NOT want those drugs.

I'm back with more information to put on the record.

I bit the bullet and paid for access to the full article on vestibular neuritis following biologic treatment.
The offender in that case was Remicade - infliximab - another chimeric monoclonal antibody biologic drug. It has been reported to cause an increased rate of infection and viral reactivation, including viruses often implicated in vestibular neuritis. The rapid replication of the virus causes swelling of the vestibular nerve. The nerve gets pinched and damaged, causing signals to the brain that control balance to be severely disrupted.
There's no doubt in my mind now that this is what happened to me. As I see it, there's no reason to assume that Remicade would have this known effect but Rituxan would not.

The patient in this discussion continued Remicade infusions every 8 weeks for her RA while taking valacyclovir to calm viral activity. She's braver than me.
Besides, I've since found several studies that show antiviral meds are ineffective in preventing VN. She must be one of the lucky few for whom it works.

Very interesting Janet! It sure does appear rituxan was the cause!

Now I'm really curious as to why you & Sandi wouldn't touch an antiviral medication - for you since it hasn't been proven to
be effective in preventing VN I understand [like me saying no to a splenectomy since it wasn't a cure for ITP] - however if it hadn't been for an antiviral I probably would have a worse case of shingles than I did.

Janet - I think your theory is correct. If one monoclonal can cause it, then I'm sure another one could. The woman that is continuing the infusions is nuts (IMO). Once a drug causes damage in any way, it's best to stay away from it. Nothing could make me go back to using Rituxan (or any biologic for that matter).

Melinda - My reason to try to stay away from antivirals may be different than Janet's reason. I've had so many bad reactions to drugs over the years and they literally destroyed my health. I am now leery of all of them. I have six prescriptions that I have been taking for years and am working to try to get off of most of them. I've managed to get by with no antibiotics for the past two years and decline all new meds that my doctors are trying to push. I used to get chronic bronchitis twice a year without fail and end up on antibiotics for months. Ever since I started taking 2,000 mg's of Vitamin C every day, I haven't had bronchitis. I found that I can clear up congestion much faster with saline nasal spray and a steam inhaler. Magic. I'm tired of the drug pushing that goes on with these doctors. I had an elevated CRP last spring and my Rheumatologist wanted me to take Imuran. I said no. A repeat test two weeks ago showed that it was back in normal range.....all by itself. I didn't need a strong immunosuppressant and if I were a blind, compliant patient that took whatever was suggested, I would have taken it for nothing. I'm finding that Vitamins and supplements can do wonders for the immune system without the risks. Of course I'd consider drugs if I had a serious situation but my goal is to try to avoid the situation in the first place. Antivirals do have their place, but I'm done popping pills without considering the risk. If there is a natural way to prevent or treat something, I'm going with that first.