Newbie starting AP tomorrow

[RAinPA]

Hello, I am 29 years old and was diagnosed with RA in December 2009. I started on prednisone and mtx. After talking to several people on RA support group websites, I found that most all of them had been jumping around from one medicine to another and still were not “getting better”. I have two young kids and this was very depressing for me to think that they are going to grow up with a disabled mother. (I had a rheumatologist tell me that if I didn’t start one of the biologics in addition to the mtx, I would be in a wheelchair within 10-15 years!) I then met someone who directed me to the roadback website and after spending every available minute I had reading, I finally felt like there was hope. I stopped the mtx (still taking prednisone, 7.5mgs a day and ibprophen as needed) and made an appt with Dr. B in PA and he is starting me on minocycline 100 mg once a day on mwf. I ordered the “new arthritis breakthrough” book and just received it yesterday so I have started reading that and feel very hopeful that this regime is going to work for me. I know that this is usually a long process before you start feeling better but I am very optimistic that this IS going to work, it has to work. I have a ton of questions but like I mentioned, I’m still reading the book so I’m sure alot of questions will be answered upon my finishing that. I guess the only real reason I’m sharing all of this is because I’m very excited to start the AP. I don’t think my family completely understands what I am going through and I know that most all of you have been where I am today. Any words of wisdom would be greatly appreciated! Thanks for taking the time to read this! 😀

[Maz]

Hi RAinPA,

Really sorry you’re so young and having to experience RA, but the good news is that you have youth on your side and there is every chance you will make a good recovery on AP. 🙂 The dose Dr. B. has started you on is pretty typical of Dr. Brown’s low dose AP.

Are you still on mtx and pred or did you drop those? Only asking, because there are a couple of different routes people will take with this. Some folk, like you, will find AP after they have been other rheumatologic drugs and will remain on them until they are stabilized on AP before weaning slowly off of them. Many of the more experienced AP docs will actually recommend this. Others prefer to go cold turkey and start AP on a fresh slate. There are the O’Dell studies out there where patients on mtx and doxy were studied for long periods and the combination was found to be safe. However, it’s also worth knowing that the tetracyclines are bacteriostatic, which means they don’t actually kill bugs…they just disable them (by altering the enzymatic processes needed for growth and reproduction) and the immune system does the actual killing. This is why it’s ideal to have a functioning immune system when on tetracyclines, but going cold turkey on the immune-suppressives is not easy…especially in the early days when herxing on AP is expected. So, many people prefer to remain on their usual DMARDs until the worst of herxing is over and then the goal is to gradually wean from them when everything is stabilized. There is still quite a bit of benefit to be had from tetras even with reduced antibacterial actions, as they also have immune-modulating functions, including anti-MMP actions, which helps to block collagenase (the enzyme that destroys cartilage in RA).

We’re all here to support you, RAinPA, so if you have any questions once you’ve finished the book, am sure someone will chime in with support.

[Valsmum]

Hi There,

I was diagnosed with RA last year, a few weeks after the birth of my daughter and thank goodness for my older kids because somedays it hurt so bad to lift her out of her crib, and I had to ask them to do it. I hate asking for help, but sometimes there are no other options.
I too started minocycline, just a few months ago and for me 100mg MWF was too much and I swelled up so I had to cut the dose back(herxheimer reaction), hopefully this won’t happen to you and you are in a good enough state to take the full dose. I just thought I’d tell you my experience because I wasn’t ready for it. Some of the volunteers say “low and slow”regarding the medication, so now I am at 50mg MWF.
I love the Scammel/Brown book, sometimes I pick it up to read about someone that got better. I think this is an AA quote “Take it one day at a time”. I am slowly learning to not get too anxious about tomorrow and just remain hopeful I will be a sucess/remission story and beat this. All the best to you, it’s great your starting AP early on in your disease!
Take care, Sheri

[mschmidt]

Hi RAinPA,

Welcome to Road Back. I’m sorry to hear of your diagnosis but, want to also tell you that there IS hope, and you’ve come to a very knowledgeable, compassionate place. Everyone here has their own journey with rheumatic disease, and you will find the encouragement, experiences, and inspiration from many people. This organization not only listened to me and answered my countless questions in the beginning of my journey, but also supported me through the worst of the worst of times. I don’t have RA, I have Scleroderma and Lyme Disease but, I do know firsthand that it takes patience and time to see results. After doing months of research, and being told by several doctors that I wasn’t going to get better, and that I’d probably die in 2 years, I stumbled upon this website, and never looked back. It will be 2 years in January that I started AP, and I’m thrilled to say that I’m so close to remission, that I made my doctor NOT say the word to me so I wouldn’t jinx myself! I remember there were days when I didn’t think I was ever going to be normal again. Now I have so many good days that I don’t think of myself as being sick anymore. I’m active, healthy, happy, and ALIVE. Everyone is here to help you through whatever you need–information, support, encouragement… I wish you the best of luck in your journey back to health!

Maria

[RAinPA]

Thanks to those of you who responded to my post and also for your words of encouragement. I took my first dose of minocycline today. In general, how long until you feel a herx?

To Maz, I am no longer taking the mtx, I stopped taking it before I went to see Dr. B. I am however still taking the prednisone, 7.5 mgs a day. I would love to stop that all together but I work full time and have two young children and if I stop taking the pred then I literally can not move.

Sheri, I know how hard it can be with RA and having young kids, mine are 5 and 3, and at that young age, they do not understand what is happening or why Mommy can’t get on the floor and play right now. So you’ve been on AP since September? How have you been feeling? Have you noticed any changes?

Maria, Thank you so much for sharing your story! Just reading it gives me more hope that this is going to work for me! I had a Dr tell me that I would be in a wheelchair in 10-15 years and that was very depressing for me. I can not imagine a Dr telling me that I would die in 2 years! I’m so glad that your are doing better now! Congradulations!

[Joanne NJ]

Hi there, RAinPA, I just wanted to chime in with my great results with AP. I have RA, I have been doing AP for 9 months now. I am 42, and was severe. I started feeling an improvement 3 weeks in, but it has been a gradual process from there. Over time, my pain got less and swelling went down. My right knee use to hurt so bad when I drove, I have not had any knee pain in over 6 months. There were frequent flares that may have been a herx. Sometimes I had to go to the Dr. for prednisone, but over time everything has gotten sooo much better. I walk up and down steps normally now, and I can open jars and bottles. I have two young boys, work full time, so I know the feeling of getting down on the floor with the kids, or even the chore of grocery shopping in pain. I had most pain and swelling in hands, knees and feet. Over time, the flares have diminished, and become less. I have not flared in over two months! Nine months ago, my labs were very high (CRP, Sed Rate and RA Factor). Last labs at 3 months ago, CRP and Sed Rate were normal and RA Fac. went from 650 to 250. I feel that I am well on my way to remission, I hope my story helps, remember it takes time, and I hope that you do great with this treatment, Joanne

[Maz]

@RAinPA wrote:

To Maz, I am no longer taking the mtx, I stopped taking it before I went to see Dr. B. I am however still taking the prednisone, 7.5 mgs a day. I would love to stop that all together but I work full time and have two young children and if I stop taking the pred then I literally can not move.

Hi RAinPA,

I think mtx can remain in the system for a good month. This has been the average time-frame for when folk here have shared they’ve experienced some rebound from going cold turkey on mtx. That said, not everyone experiences rebound and not everyone who does get rebound will experience it in the same time frame, as everyone is unique. Just thought to mention this, because if you find you need to go back on your mtx for a time until the worst of herxing is over, this isn’t any failing. 😉

Some folks prefer to wean slowly off their pred first, then mtx second. There is method in this madness, which is namely that pred is such a dual-edged sword. While it works like a miracle drug to relieve pain, it comes at a dear cost in the longer term. That said, 7.5mg pred isn’t such a high dose. The adrenals make about 5mg cortisone a day, naturally. Brown would sometimes use short courses of 5 to 10mg pred to help patients through the worst of herxing, if needed. However, the key words here are “short courses,” because anything more than 5mg will shut off the adrenal glands’ natural ability to produce their own cortisone in the longer term…this is why those last 5mg can be so hard to wean from and it must be done ever so slowly to allow adrenal function to kick in again.

All in all, while most people’s ultimate goal is not to be on anything but their AP, everyone will need to take each step in their own time, depending on their need to function in daily living/working. With young kids that need their Mom, taking things very slowly is just smart. Generally speaking, there is no rush to wean from either mtx or pred (unless a person is having serious drug side-effects) and it can actually be to one’s own detriment to do this, as herxing and rebound can be experienced all at once. Herxing tends to kick in with different time frames for everyone. Some people notice it almost immediately…for others, they might feel better for a week or so, after starting AP, and then hit the herxing wall….likely depends on what bugs are being hit. Length of time that herxing will go on for will also vary. For some, it’s a short, transient immunological reaction…for others with more severe or longstanding disease, it can take a few months to get past the worst. When weaning from immune-suppressive drugs, too, some breakthrough herxing might occur, as the immune system kicks back in and more bug killing takes place.

[Valsmum]

Hi Again,

Yes I have been on minocycline since September and my wrists and hands don’t hurt at all which is great. But my stinken knees and lower back have been giving me a lot of trouble. I too am on prednisone and I am trying to wean off the stuff slowly. I am around 7-8 mgs and I want to get as as possible or get off of it all the way without swelling up too badly. My knees swell up and everything sort of hurts if I wean too fast. This week is my half way marker to the 6 month point I am trying to make it to. At 6 months I want those labs to show some sign of improvement. SInce I was diagnosed the labs only got worse for me so it will be real nice to see a reverse in 3 months. If I am at a low dose or off prenisone by then, then I will be able to attribute the sucess to Ap, because at this point I am only taking prednisone and minocycline.

Looks like we were diagnosed at the same time, I’m just a little older than you too. If you need anything you can always private message me. Have a good one, take care.
Sheri

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