Symptoms: Taper off Steroids

[Margaret_B]

Dear fellow GPA folks:
Please share anything that might help me with the following questions:
1. FLARE? Has anyone experienced a bad flare as a result of tapering down from high doses of Prednisone?
2. HIGH BLOOD PRESSURE? I have steroid-induced high blood pressure that I developed about 2 months after my diagnosis with GPA and being put on 60 mg of Prednisone a day. Did this happen to any of you?
3. If your answer is "yes" to #2 above, did your high blood pressure go away after you tapered down or off the steroid?
4. DIABETES? My rheumatologist keeps warning me to eat NO sugars because I am at risk for developing diabetes (all my fasting blood test results for glucose have been in the 80's, not high!) because of the steroids. Did any of you on steroids develop steroid-induced diabetes?
5. SYMPTOMS? Anyone out there tried tapering according to my schedule here? I was on 60 mg of Prednisone when I left the hospital in July. Late July, tapered to 50. No side effects. August, tapered to 40. No side effects. September, tapered to 30. Side effects: within 2 days, had dizziness, pain in eyes, slight feelings of nausea. Doctor increased dose to 35 mg and symptoms went away. After two weeks, tapered back down to 30 mg with no side effects. October: tapered to 20 mg. Side effects within 2 days: Extreme dizziness, room spinning, feeling that I will pass out any moment, nausea, headache, unable to stand up without losing balance. On my own, I took 5 mg additional Prednisone but symptoms persisted for one more day. Called doctor who told me to stay on 25 mg till further notice. Dizziness and Vertigo stopped but still have Symptoms on 25 mg: runny nose; vague ache behind my eyes off-and-on during the day; very painful muscle cramps and spasms in my toes, feet and calves; fatigue; blurry vision every-now and then but does not prevent me from driving. Are these signs of a FLARE?
6. STEROIDS in 1 & 2 mg TABLETS. After reading some of your comments in various threads that pertain to steroids, I am going to ask my doctor to prescribe 1 mg and 2 mg tablets so I can decrease at a MUCH SLOWER rate instead of by 5s and 10s like I have been doing. What do YOU think?
7. GOAL: REMISSION BY END OF DECEMBER. My doctor says that IF I can get to the end of December without any flares, infections, emergency room visits, AND be down to 5 mg a day of Prednisone, he will consider I am in remission. Is this a reasonable goal for me to hope for? Have any of YOU achieved remission in only 6 months following diagnosis and treatment? I do not want to have unreasonable hope and, I am my doctor's ONLY patient with GPA, so, how does he KNOW I can achieve such an ambitious goal?

Thank you for any thoughts you may share!

[Pete]

Hi Margaret,

I'll just add my two cents on #7: I don't think you'll be off (or down to 5 mg of) pred by year end. Once you get below 20-25 mg, your doc will probably slow the taper to 1-2.5 mg/month. I tapered at 1 mg / month down from 10. I did get to zero for about four months before symptoms (roaming joint pain, blood in urine, climbing creatinine) reappeared. I had to go back up to 60 and start down again. I got to 3 a few months ago when symptoms started again. I went back to 5 on my own and stabilized. I'm holding at 5 for the foreseeable future...

[Margaret_B]

Pete,
Your 2 cents was worth hundreds of dollars to me! I was really hoping to hear from someone who tapered down and had weird symptoms and ended up having to go back up with the doses. All the more reason for me to insist with my doctor it is better for me to taper off v-e-r-y slowly instead of trying to reach some preset goal of "down to 5 mg by end of year" that could really undo me! thank you!

[Dirty Don]

#6: many people simply cut their pills to approximate doses at lower level

#7: I agree with Pete. Took me nearly 3 years to get off pred completely. Failed once, restarted at a low dose of 5mg, then worked extremely slowly downward, now am off completely w/ no side effects. Slower is better, and many patients have different tolerances also. Best to you.

Oh, is your doc WG experienced or reading out of a book? Seriously...it makes a difference! One more thing...I ate as many do/have so much chocolate while on high doses of pred I put all of the 45 lbs I lost in ICU back on in a short while, but never came close to diabetic dx.

[annekat]

Margaret, welcome to the forum. The pred taper you have been on sounds pretty normal and reasonable, for the first part of it, but it is true that we have to slow the taper a lot as we get into the lower doses. Think about it: a drop from 60mg to 50mg is a drop of 1/6, or about 17%. From 50 to 40mg. is a drop of 1/5, or 20%. From 40 to 30mg., a 25% drop. 30 to 20mg, a 33% drop. From 20 to 10mg is a 50% drop in the amount of steroids we are taking, and that is why we really start slowing down at that point. It's not too uncommon to go from 20 to 15mg., but it gets even trickier after that, because the percentages continue to rise if you keep dropping by the same amount. Some people are able to taper faster than others. After months of pred use, our adrenals have shut down and will not just come back on automatically if we stop pred or taper it too fast. There is a lot of info in past threads on this topic, if you want to access it via the search function, including some intricate tapering schedules using various alternation methods, touched on in next paragraph..

I had to cajole my doc into prescribing me the different denominations of pills, 1mg., 5mg., and 10mg., because it makes it so much easier than splitting pills. I have a pill splitter but don't find it splits as evenly as I'd like it to. There are also ways of alternating doses to get the dose you want. For example, if I alternate 10mg. and 15mg., every other day, I am on a dose of 12.5mg. overall. But I tried that and found that the dose of 10mg. on one day made me feel worse on the following day. So I've evened it out by using the 1mg. pills along with the 10mg. to get 12-13 mg. Some day I may be on 11 or 9mg. and will certainly appreciate having the smaller denominations of pills.

My doc lets me regulate it myself at this point, and I'm trying to work down to a solid 10 mg. He doesn't want me to go lower than that until after my next bloodwork and appointment with him. I have had a couple moderate flares that were probably dosage related. The last one was when I'd worked down to 7.5mg pred, so he had me go back up to 15mg. But pred isn't the only med-related culprit in flares. Earlier on, I was on 10mg/wk of MTX (immunosuppressant), and I guess 10 or 15 mg. pred. and I had a bigger flare than the more recent one. In that case, the culprit was the MTX....I'd been on it at that dose for a few months, but 10mg. was a sub-therapeutic dose for me, and things built up slowly into a flare, and that time, he raised the MTX to 15mg./wk and didn't raise the pred. That worked very well, I'm still doing well at that dose, and I didn't have the second flare until I was down to the 7.5mg/day of pred. There've been times I've wondered if I should be on 17.5mg MTX, as maybe that would ramp down any disease activity to where it would be easier to get off the pred. But that's sort of another issue.

As for remission, that can be a very subjective term, and different docs may use it differently. It can mean being without symptoms or blood work problems and completely off all meds, which we call a med-free remission. But more commonly, we are still on some meds to maintain the state of low or absent disease activity and good bloodwork, which we call a medicated remission. And even in remission, there may be symptoms due to permanent damage done by the disease. The goal is to get back to a "new normal". If you are not declared in remission by the end of December, you should not feel bad. I've been on treatment for 4.5 years and have never been declared in remission, though I've sure felt like I could be at times, even right now. My last blood work, my inflammation level was up a bit, which could be from WG activity, an infection, or possibly other things. I don't even think my doc has used the R word with me, ever. It has been an ongoing thing, and overall, I have improved greatly and am on a pretty even keel.

By the way, are you on Rituxan, or some other immunosuppressant, in addition to the pred, or have you been?... I read your post on the RTX thread but don't remember if you said. Some on RTX will have to have repeat doses for lasting effects. And other immunosuppressants may also come into play.

One more thing: the issue of calling it Wegener's or GPA has been discussed before and you will find those threads in a search, should you be interested in seeing different viewpoints on them. Also, I'm on a Facebook group for vasculitis where this was discussed recently. If you are on FB, you can find some groups, or PM me with your username and I can hook you up with some. This forum is the best, for sure, but the FB groups are fun, you'll get to know more people, and hear various viewpoints, plus learn some about other forms of vasculitis.

[Birdie]

1. FLARE? Has anyone experienced a bad flare as a result of tapering down from high doses of Prednisone?
5. SYMPTOMS? Anyone out there tried tapering according to my schedule here?
Dizziness and Vertigo stopped but still have Symptoms on 25 mg: runny nose; vague ache behind my eyes off-and-on during the day; very painful muscle cramps and spasms in my toes, feet and calves; fatigue; blurry vision every-now and then but does not prevent me from driving. Are these signs of a FLARE?
6. STEROIDS in 1 & 2 mg TABLETS. After reading some of your comments in various threads that pertain to steroids, I am going to ask my doctor to prescribe 1 mg and 2 mg tablets so I can decrease at a MUCH SLOWER rate instead of by 5s and 10s like I have been doing. What do YOU think?
7. GOAL: REMISSION BY END OF DECEMBER. I do not want to have unreasonable hope and, I am my doctor's ONLY patient with GPA, so, how does he KNOW I can achieve such an ambitious goal?

Hi Margaret,

Here's my two cents, perhaps worth what it costs.

Even if you didn't have Wegeners you would likely have the same result from pred reduction. Also I doubt you'd have a Wegeners flare that quickly from reducing pred. What I experience is more of a shock to my body when the prednisone level suddenly drops too much too soon. Exactly the symptoms you describe and in the same timeline, but I'd expect it to be the lesser level of pred rather than Wegeners, especially when increasing pred fixes the symptoms that quickly. Your body needs small decreases over a longer time so it can react with it's own prednisone production, without losing stability. High levels of pred cause the body to stop making it and the lowest natural levels are in the morning, if you sleep nights. So we get up, take pills, shock the system. I was told to take half the dose first thing in the morning and the second half five or six hours later. Not too late, they warned, because it will keep you from sleeping. Talk to the doctor about it. Reduction needs to be slow so the body has time to react. The definition of slow is determined by your body. Sounds like you weren't slow enough but you figured that out and the doctor agreed.

Blurry vision, eye pain, fatigue, muscle cramps and spasms (and earthquakes & tornados) are classic side effects of prednisone use. The higher the dose and the longer the use, the worse the symptoms become. Runny nose sounds more like a cold or Wegeners. Ask a doctor about Lorzone for cramps and spasms. For me it was like turning off a light switch with a 20 minute delay. I only took it when the cramps/spasms showed up and it usually stopped them completely for a couple days. I had no more cramps or spasms below 20 mg.

Hope of controlling Wegeners in a short time is not a bad thing if you keep it in perspective. Keep remembering that it may not happen that fast, so you're not too surprised if it takes longer.

[annekat]

Margaret, I just noticed you said you are your doc's only GPA patient. That is not ideal, but some of us do end up with that, for lack of easily accessing experts in the disease. My doc is low on GPA experience, too, and since every case is different, he cannot expect mine to be just like those of his other patients. It sounds like your doc is doing pretty well at figuring things out, but his saying you should be in remission by the end of December does sound a little bit out of a book or off the web. I think my doc knows I'm on this forum and has actually listened to me about some things I've learned on here and how they apply to my case. I appreciate that, considering his demeanor can be a bit stern and arrogant at times. Less so now than at the beginning. In case he is reading this, ha, ha.

Birdie is right that you won't go into a flare immediately from tapering pred. But you may feel some symptoms that you are thinking of as a flare that are actually pred withdrawal, your body not being able to produce enough cortisol to compensate for the drop. This can include aches and pains and general fatigue. Some people just suffer through this until the body begins compensating, but it can be dangerous if you do it too fast, as the body does need the cortisol, as he said, whether you have WG or not. I do think some inexperienced docs may try to have people taper too fast in the lower ranges, and they really need to work with the patient on this and not just give a schedule and expect the patient to stick to it. They are likely to learn this over time. Best of luck to you.

[Erin2014]

Welcome Margaret! I'm also a newbie.
I'm in a medicated remission as of Thursday!! I was diagnosed Oct 2014, so this news was my anniversary gift. My bloodwork has been very stable in the last several months and finally my protein leak is 16.4 (was 254 in Dec. 2014)
#1 - no flares during my taper but did get a nasty infection of unknown origin in the back of my throat in Jan in the second month of my taper and my doc increased my dose for a month and then I restarted the taper. In May I took my last dose and have been off ever since. My taper sounds similar to others that have responded.
#2 & #3- yes to high blood pressure. I was on amlodipine (5 mg) during the taper but have recently switched to Coversyl (4 mg), which also protects the kidneys. I check my bp at home a few times a week and give my doc an average bp for each month. I also watch my salt intake.
#4 - no diabetes. At the time of my diagnosis I was given pred by IV for several days and they checked my blood sugar twice a day. When I was released blood sugar was not an issue.
#5 - my symptoms during taper were mostly headaches, major fatigue and I also had very painful cramps in my fingers and lower legs. My doc checked my calcium and magnesium levels and once I started taking supplements the cramps stopped.
#7 - I had the same goal (not necessarily the doc's goal). Unfortunately, my body didn't cooperate. I found the pred really affected my sleep cycle - if you don't sleep you don't heal!! Took me a year. I learnt that you can't force you body to do something that it is not ready to do! Now my new goal is to get in shape!!! You may have muscle loss due to pred and joint pain which many members seem to have which make exercising a bit challenging.

As for your doc, my sister-in-law has Crone's disease and used to work for Amgen (large pharmaceutical co.) doing oncology trials. She told me that anyone with an auto-immune disease should find the leading expert in the field and have a consult to ensure that your doc is on the right track. She had the consult and found out that there was a different medication for her disease and sent her specialist a letter. This new drug has really changed her life! This forum is a great resource - perhaps someone knows a doc in your area.

Good luck with your taper and don't get discouraged!!!

[Birdie]

I do think some inexperienced docs may try to have people taper too fast in the lower ranges, and they really need to work with the patient on this and not just give a schedule and expect the patient to stick to it. They are likely to learn this over time.

Doctors should be required to do a full course of prednisone treatment before being allowed to prescribe it. Desperate to survive a year of prednisucks, they would find, read and fully understand spoon theory. Two problems solved at once.

[annekat]

Doctors should be required to do a full course of prednisone treatment before being allowed to prescribe it. Desperate to survive a year of prednisucks, they would find, read and fully understand spoon theory. Two problems solved at once.

This is especially important when treating people who must be on it continuously for a long time, and have been on the higher doses, 20mg or more, for long enough to shut down the adrenals. I've heard two months for this on here, which isn't very long in the scheme of treatment for most of us. It's not as big a deal for short courses of prednisone, the 10-day or 2 week ones that I got pre-dx, when the ENT just thought I was having recurring sinus infections and allergies. But I totally agree, docs should be fully trained to handle both scenarios, and everything in between, since pred has got to be one of the most prescribed meds out there.