View Full Version : Prednisone tapering - flare vs withdrawal?

11-06-2006, 06:42 PM
Hi Everyone
I have a question about tapering prednisone. I have been on about 25 mg (average) for 3 1/2 years. In sept. my doctor gave to ok to start tapering. I have been going down at a rate of 2.5 for 2 weeks then alternating the 2.5 reduction and reg dose. So I am now at 15. Last week I tried alternating 15 and 12.5 but started to feel really sore and overall crappy, more nausea, fatigue etc.
I am sometimes not sure if I should just "power through" and see if the bad symptoms subside. I usually don't and end up upping the dose because a major flare is so awful.
Just wondering if anyone has any insight on the tapering process....also how do you know if your adrenal gland has kicked back in? I have read that it sometimes doesn't after long term steroid use....
Also - I had Rituxan in august.....my lab work looks good and I feel better than before. How do you know when to ask for more Rituxan or chemo? Is it all based on bloodwork? Its supposed to be 6 months b/t treatments.
thanks alot-

11-07-2006, 08:56 AM
I am going through the same as you are...if I followed the schedule that was made for me, I would be at 5mg now but my body was not in agreement. At the 10mg mark, I reverted back to my pre-diagnosis body of being practically crippled so I was booted back up to 20mg with a tapering to 15mg after 10 days. I have just gone down to 10mg after being on 12.5mg for the last month. I am feeling fine but amazed how 2.5mg makes such a difference on my body. I always find the first few days of the new dose to be strange and sometimes difficult. I am totally depressed at the moment as my hair is falling out rapidly, my face is so puffy as is my body. I have been on prednisone for three months now as I was diagnosed 3 months ago and can hardly wait to get off of this stuff as my self-esteem is in the zero mark. My kidney may have started to join in the fun so I may have to get a biopsy done soon. Why am I telling you all this, I am not sure but in conclusion to your symptoms just remember that the first few days of tapering gives the body a few tingles and jingles but hopefully they will get better and you will get used to the new dosage. I hope that all goes well for you. Sorry for the blabbing on about me....

11-07-2006, 12:53 PM
thanks for the reply. My hair fell out like crazy in the beginning as well. It is hard to take - but mine is better now. Not at thick as when I was 30 but I am also 35 now. I sometimes wonder if the prednisone affects hair loss or if its just active lupus.....My kidney started to get involved as well and then settled down on its own. I did rituxan in august and it is the best thing so far for me. Does your doctor feel that you can taper the prednisone without any other med to keep things in check? For me, it took 3 years of escalating from one drug to another (they didn't work or made me sicker). It makes me mad that when you are first diagnosed you aren't often given the big guns - just prednisone. In my mind doctors need to put the fire out quickly with the best stuff they have so the disease doesn't have the time to progress then switch to the conventional (plaquenil etc.) once things are in remission. I wish they treated it more like a terminal illness in terms of treatment to just punch the thing out.
Anyhow, I normally cope ok but am feeling angry the last while....maybe partly the prednisone tapering - my moods are vicious. I am really glad you are down to 10mg! I went to 12.5 today. You will be off of it soon. One more thing, have you ever heard of adrenal gland supplements? A lady I know with lupus swears by them as your adrenal gland is often weakened after prednisone use. Oh but three months isn't that long - so your adrenals are probably fine.
thanks again
PS - I know what you mean abou the puffy face but it amazes me how quickly it goes down when the dose does. hang in there.

11-07-2006, 06:32 PM
I've been trying to cut back on prednisone, too. I was put on 60 mg in April, and I've slowly been cutting back since then. It seems that the lower the dosage I reach, the harder it is to cut back. I have to wait longer between changing the dosage and have to cut it down by smaller and smaller amounts. I always have joint pain, etc. with each dosage change, but I refuse to let myself give in to going back up, telling myself I don't want to backpedal.
It sounds silly, but I've been cutting back by 1.25 mg lately (or 1/4 of a 5 mg pill). It really is amazing how much just a few mg affects the way I feel (as was already mentioned). I'm so sick of the prednisone side effects that it really helps me push myself to cut back.
Good luck with it and hopefully we'll all be able to be on a little less steroids!

11-07-2006, 06:58 PM
Some people start to develop adrenal suppression after just a week on steroids, which is why doses are usually tapered after even a short course of steroids. The higher the dose, the greater the risk of adrenal suppression. With prolonged steroid use, the adrenal gland can actually atrophy, and it can take up to a year for the adrenal system to start functioning normally after you stop steroids.

While your adrenal system is recovering, you are vulnerable to adrenal insufficiency if your body comes under stress, like illness or surgery. So even if you taper off completely, you may need to restart steroids for a short while if you catch the flu, or have some other physical or emotional stresser. So it's very important to let any doctor or dentist who is treating you know that you have been on steroids because you may need a "stress dose" of steroids. I've been on and off steroids over the last six years - tapering is always miserable, but you don't want to have an adrenal crisis. It's happened to me twice, once after dental work and once after a bout of stomach flu. You definitely don't want to go through this, so please be careful.

It's very hard for me to distinguish between a flare up of the disease, and the pains from steroid withdrawal. If I start to run afternoon fevers, or get really bad mouth ulcers, it usually means it's the lupus rather than the steroid withdrawal. I have IV steroids and cytoxan once a month to control CNS symptoms - my doctor does monthly labs before and after chemo and adjusts my other meds accordingly.

As doctors learn more about the side effects of steroids, more and more rheumatologists are using steroid-sparing drugs like cellcept, so hopefully, fewer patients will have to suffer through the prednisone ups and downs.

I hope you are able to continue tapering down and hopefully get rid of the moon face once and for all.

11-07-2006, 09:05 PM
I was told by many doctors that my hair loss is due to the steroids not the disease. My kids are suffering from the steroids as my fuse is short and sometimes I blow without warning and these two tiny faces just stare at me. Can someone let me know what this adrenal supplement is called. Right now I am taking fish oils that are mixed with other oils, Ester C 2000mg, iron (due to anemia), folic acid as they say it is good, multi vit. and my usual drugs of prednisone 10mg, Plaquenil 400mg, Imuran 125mg and a baby aspirin (DVT) and progesterone only pill as one day , I like another kid.....If anyone has any suggestions about supplements, I am all ears as I believe in alternatives to complement. I just want to keep myself as healthy as possible. I think they are on to something with these fish oils, sort of the miracle for every ailment. Facts are few of us eat healthy and our food is not as vitamin rich as before. I went on a chocolate bender due to depression and woke up with all these pains in my stomach...I wish that I could stay away from all that is bad for you but I have gotten really depressed....So anyone out there that can tell me about supplements, I am all ears....And wouldn't it be lovely if we were given meds to punch out this disease..........I hate steroids but I love them at the same time as my kids suffered so much when mommy couldn't get out of bed or off the couch or walk........

11-08-2006, 02:17 AM
I am new here and today was my first time to read the forum. I been on Prednisone 80mg and now tapered to 10mg for the last 3 weeks...when I got to 30mg, I started the extreme fatigue, joint pain severe, butterfly rash on face, horrible untolerable headache in back of head and neck more off balance and cognitive is worse and fevers again. I see neurology again this Friday. I am not diagnosed but started with lupus symptoms 3 years ago...last year was bad in january and was in hospital for 5 days. I have an ANA of 1:2560 speckled and an Anti-Ro(ssa) high at 64. All other tests are normal and my sedmintation rate, etc is always low (at 1) becuase I do not have a spleen. Rheumatology told me no Lupus and it was not an autoimmune disease, I just had a high ANA like some people...and they discharged me. My neurologist is referring me back, but no appointment is set yet. I just went to type something here important I needed to ask, and now I cant remember. My memory is real bad, cognitive issues. Well, does it sound like I need the prednisone longer at a higher dose? I waited a week and I am worse daily thinking maybe it was prednisone withdrawl, but now I am as bad as before. My eyes also droop at the beginning of a flareup. My blood pressure was high this last flareup (158/100) and I am already on blood pressure medicines and have had no problems ever until this last flareup. Thanks!! I will introduce myself soon in a more appropiate way....Oh, when I had my first flare-up my ANA was 1:160, the following year 1:1280 and the last 2 years 1:2560. Anti-Ro has been about the same high between 46 and 68. Every other blood test, mri, any test you can imagine was normal.

11-08-2006, 06:30 AM
The adrenal supplement I am on is called "Kama" by Kami. I am in Canada so not sure if its avail is US (its made in Montreal) There is another one called AdrenaSense by Lorna Vanderhaag ? I think she is a well known US naturopath and the lady who told me about it takes that one. I am not sure yet if this helps the tapering process but so far it hasn't been too bad for me so you may want to give it a try. good luck!

11-08-2006, 06:31 AM
Some medications, including certain medications for high blood pressure, can cause a high ANA and a drug-induced form of lupus. So, depending on what type of blood pressure medicines you are taking, this is something that may need to be investigated. The anti-RO antibody is sometimes associated with lupus, but is more associated with Sjogrens Syndrome, an auto-immune disorder that affects many women. Sjogrens can cause many of the same systemic symptoms as lupus - it usually affects the salivary glands and tear ducts, causing dry mouth and dry eyes. You can find more information about sjogren's syndrome at the Sjogren's Syndrome Foundation - www.sjogrens.org

If you are starting to have symptoms again, you should certainly let your doctors know, and try to find out what's going on. With your high blood pressure, upping your prednisone is not a good idea unless your doctor specifically okays it. And ask your doctors whether the blood pressure medicines you're taking could cause drug-induced lupus or affect your ANA.

Hope this helps.

11-09-2006, 08:40 AM
So, how does someone determine if it's flare or withdrawal? I am tapering off prednisone now (from a high of 40 mg.) Have been on it for about 6 months. I do really suffer in the afternoons - achy, extreme fatigue, headache, general "unwellness" (not a word, I know, but it really fits how I feel.) I haven't thought to take my temperature, but thinking back, I'll bet I have a low grade fever too. I'm still pretty new to this, and am learning how to 'read' my symptoms. Any advice on how to know if it's prednison withdrawal or the lupus? (My greatest problem is that reductions in prednisone have led to bouts of pericarditis, but that's another issue...)

11-09-2006, 06:12 PM
Hi, Jody. There's actually a lovely medical term for that all over unwell uck feeling - malaise. So if you ever see in your medical records - patient complains of malaise, now you know that's what you had.

I always notice when I'm tapering down that I feel better for a few hours after the AM dose, and seem to gradually feel worse as the day wears on - I assume it's the effects of the steroids wearing off. The mouth ulcers are usually the tip off for me that a flare is starting, but every person will have a different pattern of symptoms.

During this last taper, my rheumie recommended DHEA to counter-act some of the steroid withdrawal. I take 50 mgs. daily and the muscle pain and fatigue don't seem as bad, so I'm actually managing to taper off on schedule for a change. So you might ask your doctor whether this would be okay for you.

Miss Sunshine
12-06-2006, 12:00 PM
My doctor encourages me to taper my prednisone myself. It is a game really. It's important to go as you feel. 3 Years ago, I had a flare and was back on 60mg, after being down to 15 over the summer, I have been very cautious in reducing doses and usually compromise by upping either CellCept, or Plaquniel or Imuran. I know the feeling, by noon, the aches and general malaise is enough to want to go and swallow and another 5 or 10mg.
My mother takes Kama, but not for the same reasons, I will have to look into this, I have often seen Kami products on the shelves of my local health store in Aylmer ( on the Quebec side), so that would explain if it's from montreal.
My goal is to be completely off Prednisone for my birthdday in April. Will be the 1st time is 10 years. My doctor is concerned, my bone density results, the deterioration in my hips even after total hip replacements are all factors that need to be considered...Prednisone is making my life bearable but killing me slowly.

12-08-2006, 04:19 PM
Hi miss sunshine,

Im coming off a high dose of steriods was on 60 now down to 25. because of my kidney involvement my doc put me on cellcept, just wondering if you can be on cellcept and be off the prednisone all together?????