Need advice about prednisone self help

I've been completely off prednisone for a few months, but my MD approves me keeping a supply of it on hand in case I begin bleeding on a weekend. He told me to take 20 mgs and call them when the office opens.

I began having petechiae on Saturday, no big deal. But there was full-blown nose bleeding when I got up Sunday with minor bleeding elsewhere. I didn't want to take as much as 20 mg, so I took 10 mg Sunday and another 10 mg yesterday. [In hindsight, I would have taken the full 20 mg. Could have used it.] The nose bleed stanched itself early yesterday; but heavy petechiae and small mouth blisters continued to pop up, so I took 10 mg today before going for my weekly NPlate. I expect that to kick in by Thursday.
My question is - How many doses of pred can be taken without having to taper off for weeks? I just don't want to get stuck on it for months again.

Janet: It's not so much the starting dose that initiates a long taper; it's the amount of time that you are on that dose. I've taken Prednisone for bronchitis and started at 40 mg's, tapering down by 10 mg's every few days. As long as you take the high dose and start to taper it quickly, your adrenals will be fine. The counts might tank though. You would probably be better off starting at 20 and going down every few days from there.

Both my GP & my haemo have told me it is absolutely fine to take 20mg a day for a max of 3 days as a rescue remedy.

Or you could do that....^^^

Hi Janet,

I've done the same thing with the prednisone that you are doing. Using it as kind of a spike to bump up my count when I have symptoms like blood blisters in the mouth. Like you, I always try to take the minimum amount to get the count up just enough to get rid of the symptoms. My pred spikes usually take about 1.5 - 2 days to actually kick in to treat the symptoms, so it can be a bit of a guessing game to know if I'm taking enough since there is that delay. If you have a sense of how long your usual response to the pred is, you can figure out if you should take more. Doing another 10mg single dose should be okay, especially since you have only done 10mg per day.

During my last crash, I actually followed what my hematologist prescribed, which was the methylprednisolone dose pack that was the equivalent of 60mg, 50mg, 40mg, 30mg, 20mg, and 10mg on six successive days. I actually jumped over the 40mg day and went straight to 30mg because I was climbing the walls and it had already kicked in to stop the bleeding. My counts went way into the 100s, which was way beyond my previous method of just taking a tiny dose to get symptoms/bleeding to stop. Next time I have a crash (I'm currently sick and getting petechiae, but no blood blisters yet so I'm holding off on the steroids unless I see mouth blisters), I will probably just treat myself with pred like I used to. Maybe one day at 20mg and the next day at 10mg. Or, if I'm particularly concerned and it coincides with my monthly bleeding, maybe a three day stair step of 30mg, 20mg, and then 10mg.

Regardless, for these short rescues, no taper is needed. You can't do something like take 60mg one day and then nothing, of course, but your little 10mg doses over two days should be fine. I think the people who need these mega long tapers are people who have been taking pred consistently over fairly long periods of time. Who knows, maybe even in these short spikes it would be more gentle to do long, slow tapers too, but I am too impatient and want to get right back off, so that's what I've always done.

Good luck!

Oops. Wrote this yesterday before reading the replies and forgot to post it. But yeah, what they ^^^^ said

Thanks to you all for your helpful advice. I appreciate it more than I can say.

Doc said to keep taking the 10 mgs till we get next Tuesday's count. I went ahead and took a 4th dose today because new petechiae and blood blisters are still showing up. If that wasn't happening, I'd stop despite his instructions.

I continue to struggle with NPlate's instability, stuck in a 3-week cycle of doom. Counts will be in the 100-200 range for 2 weeks followed by a week with single digits. Rinse and repeat. I'd try Promacta if it weren't for its cost and the studies that found people who switched to it from NPlate didn't gain the stability they wanted.

Janet, you sure are a mystery. I don't know why on earth N-Plate would not work one week a month. You'd think that if it were cyclic ITP, you would still respond to meds.

I think the problem is with Nplate but haven't a clue why that pattern of instability?! Nplate does tend to build on previous doses, so counts can reflect the dose given 2 weeks prior. Thats how it has been working with me lately. Could be something like: week 1- dose doesn't do anything. week 2 builds onto week one and counts go up. Week 3 counts go higher-- BUT week one is losing its effectiveness and maybe week two has also lost effectiveness. So by week 4 the counts crash. I don't know! ?? Just a guess. Nplate is a strange drug!

My counts crashed to 13K today and don't know why. They were great at 47 last week! I think stress, exhaustion, poor food choices, Lupus activity, overworked- all of the above. The nurses told me "your dose will be raised with that low count". But my lovely hematologist did not raise my dose- he knows I'd prefer to ride it out and to give my body a chance to rebound on its own.

Re prednisone: Yes, I have taken 20 without a taper, also 5 or 10 usually for Lupus/Sjogrens symptoms. For low counts I have taken 20, 15, 10 5 until the Nplate kicks in. Pred works fast for Lupus- within about 30 min, but for ITP takes a day for bruises to go away. My rheumatologist suggests a quick taper of 15 15 15 10 10 10 5 5 5. But thats too many days for me.

Prednisone does work great for Lupus! It's the only drug that works for me. I'm moving next weekend and will take extra. I don't think i could get through moving day without a bump in dose. Too much stress and physical work.

Here I am a month later. The week I wrote this question, count was 1. A week later, it was 454. Since then 615, 64, 117, 412 today. All at the same NPlate and pred dose. Reducing the pred today.

So, after 2 1/2 years of this mad NPlate instability, I've finally and reluctantly decided it has to end. I agreed to try Rituxan and vowed I wouldn't back out at the last minute like I did before.
Odd, but now that I've given the go-ahead, I feel more at peace, even hopeful. On the way to the office, I was a veritable basket case.

Thanks for hearing me out. It helps to be able to say these things in the company of people who truly "get" it.

Good luck, Janet! Let us know how it goes.

Good luck with the Rituxan. It has given me great remissions, hope it works well for you too.

Good luck Janet! I don't blame you for getting tired of the NPlate rollercoaster that you have been on. Low counts followed
by scary high counts is not good.

Hopefully you can get a nice remission out of the Rituxan. If I have to bail on my Promacta, Rituxan is probably next
on my list despite my previous reservations. Most people really do fine, so I've made my peace with the idea over time and
am keeping it in the back of my mind as a potential next move.

Definitely keep us updated!

Thanks to you both, and to Sandi again.
I've been following your story, dru, and will continue.
Glad to hear you echo my thoughts, momto3. I think I've seen mrsB say the same... That Rituxan would be her next choice after a TPO.
Just waiting to hear about insurance approval now.

I had my first Rituxan infusion yesterday. I got the sense it was more complicated than the staff thought it would be, although it didn't surprise me. After the first hour, my scalp got super itchy. I wasn't warned specifically to report itching. Luckily, I knew what itmeant from reading here in the forum. Someone who didn't know might have shrugged it off. Drug was stopped for 30 minutes, Benedryl given again, flow reduced. Itching returned, Solu-medrol was started.
After another 1 1/2 hours, I got shaking chills. Stopped again to recoup and flow resumed at an even slower trickle. After 6 hours, the second bag wasn't empty. But it was quitting time for the staff, so we all went home. I don't know the ramifications of not getting the full initial dose. I can't worry about that now.
I'm much more frightened about what harm a full dose of NPlate plus a round of Solu-medrol might do. My count before doing anything was 697. Uh-huh. I fear so many platelets now that the top of my head could blow off.

Janet:
Big step for you! Not getting the full dose is fine. Remember the studies on lower dose Rituxan? It worked just as well. I wouldn't worry about that.

As for the counts...yikes! I'm surprised that you had treatment with those counts. I know that Rituxan takes time to kick in but yeah, the Solumed on top of it might not be good. However, I'm a very good Prednisone responder and when I had Solumed, it didn't do a thing for my counts. Maybe it wont kick yours up either.

I did actually consider this a version of the "low dose" protocol. LOL
I've had Solumed twice before. It took me from single digits to 278 and 184 respectively within the week.

What really ticked me yesterday was getting the full dose of NPlate at 697 following the 450 from last week. In an ordinary week and with these back-to-back exorbitant counts, I would have negotiated a dose reduction. This week, they had the filled syringe in front of my face ready to go without any opportunity for discussion. I guess I could have refused it, but at $3300 a shot, my scruples wouldn't allow it.

Sorry your Rituxan treatment was difficult. There is a good chance the next infusion will go better. Hope it works well for you!

Janet - I'm speechless. They certainly did not follow protocol!

Had my second infusion two days ago.
Exactly my fear seems to be happening. If I don't have serum sickness, I'll be shocked. Have a call in to doctor. Will report later.

I reported to the nurse non-stop fever since Tues evening. 101.6 at night; 100.2 daytime. Tender lymph nodes, major hand pain, and headache as of last evening. More numerous and painful lymph lumps on my scalp this morning.
Nurse reports that MD doesn't 'think' it's Rituxan related. He talked about upper resp infection or even seasonal allergies. Yada yada yada. Wants me to rule those out by seeing an iternist or urgent care before blaming Ritux.

Can you believe this?! I'm supposed to sit around a crowded waiting room feeling like this.
I'll just wait it out and hope the joint pains don't worsen too much more over the weekend. Four to seven days to resolve, right?
I did warn the nurse that a third infusion would be unlikely. She actually said she completely understood, even though she had just made a hundred excuses why it's not Ritux.

Wow, terrible. I agree with you for avoiding urgent care. Seasonal allergies don't cause fever. I don't know why doctors are reluctant to blame Rituxan for these reactions when these symptoms are on the treatment sheet under common side effects.
Hope you feel better, sorry you are having a bad time of it.

Oh no! What day after the first infusion did symptoms start? My worst symptom was intolerable joint pain (both times). It felt like every bone in my body was broken and I couldn't even hold a mug. Even ER's miss that diagnosis. I've seen it happen over and over. For the record, I do think it's Rituxan related although not sure if it is serum sickness. Could be.

Oh no Janet! UGHHH... I'm so sorry to hear that you are having a bad reaction. Especially after your disastrous, "let's just stop the treatment in the middle because we are closing."

It's mindboggling that after having such a significant treatment with so many different side effects that they want to blame weird things happening on seasonal allergies. That is beyond frustrating. I hope you start feeling better soon and find a smart medical professional who doesn't want to just pass the buck on you and make you see an internist. Really??!! I'm frustrated for you!

Can't type too much. hurts
Sandi, the hand pain came 9 days after the 1st inf. I had a little fever for 24 hrs with that 1st one, slight lymph tenderness that didn't resolve. Constant higher fever since the 2nd.
Hand pain is worsening - a lot - since this morning. Lymphs are getting bigger and sorer.
I agree that my pain sounds way milder than yours and take your word that this might not be SS. But no doubt in my mind, it's from the drug.
Maybe my doc is just practicing CYA... Can't admit I'm likely right. Didn't think he'd turn on me after 10 years.
Thx for the support everyone.

I'm so sorry, Janet. The thing that makes me think it's not serum sickness is that ss is notorious for starting 14 to 21 days after the first infusion. Mine hit on day 20. It can hit sooner but only if there has been a prior reaction. I felt unwell all day, but that night, I woke up in the middle of the night unable to move. It hit every joint in my body. I couldn't get out of bed or yell for help. Serum sickness usually hits fast and hard and starts to get better on day three. Sounds like yours is getting worse. It's possible that it could be serum sickness, but it doesn't fit the profile. I do think it's Rituxan related for sure. If you are getting worse, you should consider the ER. I don't know how much help they will be, but better safe than sorry. Get some blood work done to make sure you're okay. Some of the Rituxan reactions are nothing to play around with.

www.drugs.com/sfx/rituxan-side-effects.html

Janet, do you have a rash? Several sites mention rash along with fever and athralgia as the symptoms of serum sickness. Since I also have Sjogrens syndrome, I find this interesting about serum sickness caused by Rituxin. Its saying that people (women mostly) with underlying Sjogrens have a higher chance of having serum sickness after Rituxin. Did not know that. From my reading (I'm not a doctor) I think it sounds like serum sickness or something very similar- a drug reaction. I would get it checked out at ER or wherever you choose. I have found some awesome ER doctors- its possible that they can diagnose it with blood work while its active. Frustrating that your doctor/nurses brush it off as nothing- great you are informed and advocating for yourself. Good luck and take care!

"In the 33 patients with RISS, the mean age of presentation was 39.1 ± 17.5yr with a female preponderance (n = 23, 76.67%). The majority of cases were associated with an underlying rheumatologic condition (n = 17, 51.5%), most commonly Sjögren's syndrome (n = 8, 44.4%). The classic triad of serum sickness (fever, rash, and arthralgia) was reported in 16 (48.5%) cases. Time from drug exposure to symptom onset was significantly greater with the first doses of rituximab compared to the second dose (mean time 10.00 vs. 4.05d, P = 0.002), and time to resolution was significantly greater for rheumatologic vs. hematological indications (mean time 2.50 vs. 1.00d, P = 0.035). Corticosteroids were the most commonly used treatment (n = 21), with all cases reporting a complete resolution of symptoms in 2.15 ± 1.34d " www.ncbi.nlm.nih.gov/pubmed/26199061

Mayo Clinic -Drug Reaction - www.mayoclinic.org/diseases-conditions/drug-allergy/symptoms-causes/syc-20371835

It seems to be more common in those with Lupus or a predispoistion to Lupus too. We've seen that here countless time. I have Sjogren's too, but didn't have the symptoms until the past few years.

I didn't have a rash until the second time that I had serum sickness. That time I had hives all over me and my skin was purple-splotchy and peeling.

Janet - please check in when you can, even if you only type an 'ok'. Worried mother hen here!

Well, well. What a bombshell both of you thrown at me! For the past couple months, I've suspected that I have the hallmark symptoms of Sjogrens! I haven't yet begun seeking a diagnosis. It seems too daunting given the caliber of MDs I run into. My GP told me to change toothpastes for my cotton mouth and beefy tongue. Duh... Did you not notice the other two AI diseases in my chart? I'd bet the farm I have it! If I had known about these connections, of course I would never have done Rituxan.

The oddest thing happened today. I woke with 102° fever. Around 11:00, I began sweating profusely. Took my temp, and it was normal for the first time since Tuesday night. Right after the sweats, the hand pain was about 70% better. But then the fever started climbing again, and by 4:00, it was 102.8. Thankfully, that level of hand pain hasn't returned.
Fever reducers haven't touched it. Nausea is a new symptom since last night... Maybe it was the NSAID. Who knows, but there's no point in taking it.

As for rash... I'm not sure. My legs are covered in what I recognize as petechiae. But I think you're talking about a raised kind of rash, right? This would be my third NPlate week when I usually crash anyway.

Sandi, the resource I found says onset can be from 7 to 21 days after 1st exposure.
"Unlike other drug allergies, which occur very soon after receiving the medicine, serum sickness develops 7 to 21 days after the first exposure to a medicine. Some people develop symptoms in 1 to 3 days if they have already been exposed to the medicine."
medlineplus.gov/ency/article/000820.htm
I don't know how I missed the part that says it can show on blood tests. I would definitely have gone somewhere on Friday if I'd known. How late is too late? I still have this wretched fever and some lymph nodes in the back of my skull are actually throbbing.

I thank you both for you concern. It really touches my heart.