Upping Prednisone Temporarily

[Lizz]

Hi, hoping to find all of you feeling better and looking forward to the holidays. As some of you may know, I have been on AP a long time and have yet to see results. Don't even mention the non-responder stuff because I do that too, except hormones which I am looking into. I got an “iffy” diagnosis of babesia but so far the med change up has not made me consistently better.

Which brings us to the holidays, a hopeful time of the year. I got snagged for Thanksgiving this year by my sisters who have been having it for the last five years. I think they caught me on a good knee day and I said, sure no problem. Now I am regretting it because my right knee won't bend at all. I can't clean, tidy, shop or cook. I'm thinking a surprise take out dinner. Not really. I love the holidays and want to do all of this but I am having a “me bad” moment. I want to up the pred this week so I can function. Just for a week. I'm on 4mg now and thinking of upping it to ten for a few days. Otherwise, I don't know what to do. Is this ok for a short time? How do I get back down to 4mg after the week is over? Any other ideas? I don't have a dr who will give me a knee shot unless I follow his protocol, which is not an AP one. And my LLMD who “thinks I might have” babesia know pred is evil if you have lyme.

It is such a bummer to have this all the time but at family gathering it is unbearable. What do you all think?

[nspiker]

Hi Lizz,

Here we are trying to treat ourselves again…..if only you could find a doctor that could treat “all of you”.  I am not the one who could answer your question on prednisone, but I am sure someone here will. 

I understand the need to get rid of the pain and be able to participate in the holiday festivities.  I hope your sisters are all bringing something, but either way, just getting the house in order, setting the table, and cooking  require a lot of energy. 

Hopefully someone here has some great advice that will get you through so that you can enjoy your holidays……..

Thinking of you….
nancy

[Lizz]

Thanks, Nancy for the pep talk, I know you've had it rough lately, too. Have a great Thanksgiving! Anyone else?

[Parisa]

Hi Lizz,

Just stopping by to wish you a happy Thanksgiving whether you cook it or send out for it. 

[Lizz]

Thanks Parisa, Happy Thanksgiving to you, hubby and all your family!

[linda]

Hi Lizz,

At the risk of incurring the wrath of my friends here, I'm going to tell you that it's OK to increase the prednisone for a few days. I know, coming from me the poster child for NOT even starting prednisone, and definitely not using it long term, this sounds a little nuts.:shock: Not the first time, nor the last, I'm sure! I've been slowly decreasing my prednisone for the last 3 mths, I'm down to 9mg from 15 mg. But there have been weekends when I've got a lot to do that I have increased my dose. I've had no problems going down to the lower dose if I only do it it for 2-3 days. This is the 3rd time in 3 yrs that I've tried to decrease the dose. I failed the first 2 times because of rebound flares from decreasing too fast, this time I'm taking it very slowly.

But before everyone yells at me, I'm also going to tell you that anytime you increase your dose and then decrease it, you can trigger a rebound flare. I kinda look at it like a diet, and we know that it's very difficult to stick to a diet if one doesn't allow for cheats every now and then. But cheats can be a slippery slope, as we all know. Sometimes we have so much on our plate that we know we can't handle it, like Thanksgiving, when we need more help with our symptoms. As long as you understand the risk of a flare, and decide that no matter how much better it makes you feel you're not going to stay at that dose, you'd probably be alright. However, I'm not a doctor, so you take my advice at your own risk. It would probably be best to call your doctor and ask if this is something you can do safely.

And I'm with the others who responded to your post, delegate out some of the work! And next year, say NO! Happy Turkey Day!

[superperroRA]

I had REALLY terrible knees (it hurt tremendously to go up a 1 inch step, I'm not kidding), even when I was on 13mg prednisone. I gradually replaced the prednisone by Voltaren. Now I am prednisone free. I noticed an improvement in my knees almost the first 3 days I started using the Voltaren. At least for me, the Voltaren has worked the quickest with the knees, more slowly with the hands. If you do try the Voltaren, read what I have written in previous posts about protecting the stomach from it.

If the minocin alone is not working, I would try 3 new things ASAP:
(1)gradually replace the prednisone by a strong NSAID like voltaren or celebrex
(2)add azithromycin to the mix (I find that for me, a cocktail of minocin and azithromycin works better than either alone)
(3)add mepron + azithromycin  to the mix (this is one of the babesia treatments)

[suera]

Lizz, I feel for you. There are so many things I want to participate in but the ugly truth is if I say yes I usually regret it as it never fails that whatever I volunteer for is to much:(. I think it takes years before we TRULY realize our limitations. I agree with Linda but that being said I must disclose that I too use tradional drugs:X.

[Lizz]

Linda, I'm so glad you responded because I know you are a warrior of the pred wars. I appreciate your thoughfulness knowing what a rough time you've had. I'm going to mull the pred thing over but unfortunately I don't have a responsive GP to talk to. I hope your Thanksgiving with the road trip with your boys is the best ever!

Superperro, thanks for your response, but I have tried voltaren 75mg and it doesn't work so well for me. I am now on relafin, which supposedly minimizes gut damage. I've also been doing mino MWF 100mg, 250 zith TTh, and a one week of 500mg flagyl. When they tested my ESR in October, it was 105, the highest it's ever been. I didn't know what to make of it so I went off everything for 2 weeks and did a washout with diflucan. Now I am slowly starting up again, we'll see how it goes. Here's hoping you and your family have a wonderful Thanksgiving.

Sue, thanks so much for responding. You are so right when you say it takes years to realize our limitations. And the enbrel thing, I frankly would never rule it out. I saw the transcript of the Dr. S chat in September and he said lots of this patients were on mexotrexate with AP. In a few months I may give that a try. I just don't think the AP can work if the inflammation is too high. And despite all my efforts, mine has been really high lately. I wish you and your family the best holidays ever!

[superperroRA]

Wow, I see now how difficult your case is. In your situation, I would consider a visit to Dr. F in  Riverside. It sounds like he does the most sophisticated diagnostics in the business. Something that I've learned about this disease is to Keep trying new things (including the Embrel if you must, but not limited to it)

[Author]

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