Anyone on AP that has to take a low dose of prednisone?

[anjoe]

I recently had a difficult time with my back below my shoulder area with swelling and inflammation (I over did it having a yard sale that weekend and aggravated something) and have had to go on 20 mg of prednisone to have relief. Now my family doctor wants me to go up to 40 mg and I am saying no. My SED rate is only 250 from 900 about 6 months ago. I credited it to minocycline. Will taking preds for a short time hurt my antibiotic therapy? I’m scared that I’ll mess up the good results that I’ve had from AP. I need to go see Dr. K but can’t till about a month or so. I feel lots better and the shoulder pain is almost gone. I think I’ll do the 20 mg for 30 days and then taper off. What would be the proper procedure to do this for tapering off? My home town doc is a butt and he doesn’t want me to go off of preds, thinking that he can get my SED rate even lower, but at what cost to my health? Appreciate any advice. I want to slowly taper myself off and find a new family doc closer to me that I can work with.

Polymyositis 12/09
Currently taking Minocycline 100 mg on Monday, Wednesday and Friday
D-3 10,000 IU Daily
B-12 1,000
Vitamin C Daily
Multi-Vitamin with Calcium, Zinc and Magnesium
Prednisone 20 mg once a day 🙁

[Valsmum]

I think my ra got worse after taking prednisone, because before prednisone I never had back pain and now I do have back pain. Also I am weaning off of it and it is excrutiating to say the least, it makes all my joints hurt. My crp was like yours and I was on a low dose of prednisone, I never was up to 40 mg, just 20 for a few days. Most of the time I was around 5 mg -10 mg
but my knees swell so badly when I taper I can barely walk. Have you tried mobic?I think it helps with inflamation. I suppose a 2 week course would be okay if Dr. Brown used it occasionally, but I would not recommend it for any longer than that becasue of all the horrible side effects and the fact that you can’t just stop it whenever you want. You don’t want to mess with your adrenal glands etc. I am sitting here with one big swollen knee today, typing this because of tapering prednisone, I have been icing it all morning, it hurts so bad to move it. I don’t ever want to anyone on long term prednisone, it supresses your immune system too. I can tell you are in pain, and I hope you feel better.
Take care,
Sheri

[pattyrod]

I think addressing the inflammation is very important and unfortunately prednisone is one of the best ways to do it. I took prednisone when I started minocin and was able to taper off of it successfully (and slowly).

Just to give you a warning – Dr. K is extremely against prednisone. I was seeing her when I had a reaction to minocin and really needed to take prednisone to get my sed rate down and symptoms under control. She refused and I suffered for months. Pred was the only thing that made me better (prescribed by another doctor after I was hospitalized). In my opinion, it’s a necessary evil with our disease to get the inflammation under control. Excessive inflammation will cause havoc in your body. I had lung nodules from excessive inflammation. Miminal amount (but right amount!) for the minimum amount of time is the way to go in my opinion.

You’ll be very conflicted after your visit with Dr. K. Hopefully others will chime in to help with your decision.

Best,
Patty

[Maz]

@anjoe wrote:

My SED rate is only 250 from 900 about 6 months ago. I credited it to minocycline. Will taking preds for a short time hurt my antibiotic therapy? I’m scared that I’ll mess up the good results that I’ve had from AP. I need to go see Dr. K but can’t till about a month or so. I feel lots better and the shoulder pain is almost gone. I think I’ll do the 20 mg for 30 days and then taper off. What would be the proper procedure to do this for tapering off?

Hi Anjoe,

It’s great to hear you’re doing so well on AP with your SED coming down so drastically in just 6 months! You still have a ways to go, but what a great downward trend, so quickly! Way to go, girl, and keep up the good work! 🙂 I remember how difficult the decision was in the beginning, finding a doc, etc.

I’m afraid I have nothing of any worth to add on the pred as I’ve never been able to use it. You got some great insight from both Val and Patty from their personal experience of its use, though. Ultimately, I guess we each have to go with what we think is optimal in our own unique situations and just make as an informed decision as possible.

….but I have a question for you. Is my memory really bad or were you concerned about diabetes at one stage? Was that from pred use before or do you have diabetes? This might be totally irrelevant, if not, and I might have you confused with someone else – it’s happened! 😆 Really just wondering, because for some reason it popped to mind when I saw your post. If this is the case, then maybe pred wouldn’t be the way to go? If not, just ignore my brain blip. 😉

[anjoe]

Hi back-
Yes…. I’m still a diabetic 2 and amazing have been able to keep my sugar between 150 and 180. My home town doc did give me an insulin pen just in case it starts to go over 260 a lot. So far so good. I’ve not had to use it and don’t want to be a insulin using diabetic. It scares me so that’ s why I don’t want to be on the prednisone much longer. I’m having to watch everything I eat, how much and when I eat and take my metformin to where it will help counter act with the prednisone. I’m taking the prednisone in the mornings and last night was a nightmare. I couldn’t sleep at all. Very tired today. Would it help to take it in the late afternoons instead? Also if I take 20 mg of prednisone for a few weeks to a month, what would be the dosage amount to take to taper off? Should I taper off with 10 mg for how long and then should I do 5 mg also for how long? We’re going on vacation this Sunday for 10 days and need to decide what’s best to do. I’d appreciate any info on other meds to use for inflammation that goes along and not hurt AP. I’m so happy with the minocycline. I’ve up the probiotics cause I think the prednisone is messing with my stomach today.

………………………………..
Polymyositis: 12/09 Minocycline 100 mg on Monday, Wednesday and Friday since 2/4/10
Good Probiotics
D-3 10,000 IU
Vitamin C
Vitamin E
B-12
Multi-Vitamins with Calcium, Magnesium and Zinc

[DianeTexas]

I am finishing my 6th year of AP. I did about a year of lose dose pred. I regretted it. It was hard to get off as it took another year to completely wean myself. It completely messed up my adrenals. If you have an event that you just need to have it together do a weekly pred pak then get off. But even then I regretted the rebound effect of feeling just as bad before I took the dosage but sometimes you just need that boost.

Tread very carefully with the pred…….

[jims]

Hello Anjoe, I have used prednisone for three years. I am now down to 1.25mg daily but it has been a battle. I now have an MD/ND who is using a cortisol/licorice tincture to hopefully wean me from prednisone. Adrenals low as well. He said prednisone is 4 times stronger than cortisol. The long term is then to wean me from the cortisol as well. Some folks get down to 1/4 mg titrations. jims

[anjoe]

Diane: What low dose pred did you do for a year? This is my 1st week of 20 mg. Since I’m better the last few days would it be wise to go ahead and start to wean myself of of 20 mg of pred because I possibly get into bigger problems? Appreciate any feedback-

Polymyositis: 12/09 Minocycline 100 mg on Monday, Wednesday and Friday
Diabetic 2 : 10/09 Metformin 1,000 mg 2X Daily
Good probiotics
D-3 10,000 IU Daily
B-12
Vitamin C
Vitamin E
Multi-Vitamin with Calcium, Magnesium and Zinc Added

[Parisa]

Anjoe,

I know the doctors love to prescribe prednisone for myositis patients. My husband was put on prednisone at the beginning of his disease and after the first honeymoon month it turned into a devil of a disease. A few months after being on it, he developed pneumonia. A little after that a bronchoscopy revealed candida in his lungs. It took him three long years to finally wean from the drug as anytime he had any problem we would have to boost his dosage up. His prednisone use left him with osteoporosis and cataracts. I know you are looking at a short term burst which is the only way prednisone should be used in my opinion but I want to caution about the dangers of finding yourself unable to wean and the next thing you know you know you’ll spend months if not years trying to wean.

I would definitely look into other means of going after your inflammation such as enzymes.

[DianeTexas]

I did 10mg. In hindsight it was really a bad decision. I personlly think 20mg is way too high and I would start to wean as soon as possible. It totally sucks but I have found there are times you just have to work through the pain. It will get better, I have learned that over the past 6 years.

[desgirl]

Hi,

I was on prednisone in the begginning of my AP and I would say the same thing others are saying. Be careful taking it. It caused me trouble after weening off I was in so much pain. Also, if there is any chance you could have Lyme it will spread it throughout your body…at least that is what my LLMD told me. So be careful with it. Maybe there is something else that can help like Celebrex or another anti-inflammatory medicine. Hope you feel better soon. 🙂

[Author]

Posts