Feel like a failure

[APbeliever]

Reading all your posts, I want to add something in here. MTX along with AP causes major problems with liver since they are both hard on the liver. I am quoting this from Dr F’s (AP Rheumatologist in Ca) recommendations to do a six week washout period from MTX when a patient starts on AP. I know I personally took MTX along with Mino for three weeks (I like to add I felt really good during those 3 weeks with both of them together than with just MTX alone). When I read Dr F’s recommendations , I dropped MTX inspite of my Rheumy’s suggestions. I showed him Dr F’s recommendations but he did not believe in increased liver toxicity from taking MTX and AP together. However, it depends on each individual. Just make sure to have recommended liver tests (LFT’s). LFTs are recommended even if you are just taking MTX with no other meds since MTX is quite toxic on your liver.

[Maz]

@APbeliever wrote:

MTX along with AP causes major problems with liver since they are both hard on the liver. I am quoting this from Dr F’s (AP Rheumatologist in Ca) recommendations to do a six week washout period from MTX when a patient starts on AP.

Hi APB,

I think you’re right that the combo is harder on the liver. O’Dell, however, did do studies on the concomitant use of doxycycline with methotrexate and determined an acceptable degree of safety:

http://www.ncbi.nlm.nih.gov/pubmed/16447240

Of course, I don’t think the safety profile of this combination is necessarily going to be the same across the board for every patient. O’Dell did not seem particularly interested in the antimicrobial benefits of doxycycline in his study so much as its immune-modulating properties. What isn’t stated in this study is that probably the anti-microbial benefit from doxy is greatly diminished by methotrexate, anyway, because it is a bacteriostatic abx.

Hope you’re feeling better, APB. Happy New Year to you!

[APbeliever]

Thanx Maz, Happy New Year to you and everyone in here. Hope that the new year brings relief in pain for all of us and possibly a cure for whatever is ailing us all in here. My rheumy did show me a lot of interesting cases where the patients were taking MTX along with AP with excellent results. Maybe in future I will try them together again if I do not see my symptoms improving. If anyone is taking them together just make sure that you are off alcohol completely (According to my rheumy alcohol is very hard on the liver along with MTX). Maz, I am doing quite well with ocassional flareups. Hope you are doing good too.

[APbeliever]

Please check this post as this is quite interesting

viewtopic.php?f=1&t=5480

I started using xylitol gum a few weeks ago and I felt an instant relief in RA pains. I had gum inflammation before RA started and dentist had performed a root planning for my gums and teeth. Xylitol is also mentioned in Dr Mercola’s webpage.(Hint!)

[Maz]

@APbeliever wrote:

Thanx Maz, Happy New Year to you and everyone in here. Hope that the new year brings relief in pain for all of us and possibly a cure for whatever is ailing us all in here.

Maz, I am doing quite well with ocassional flareups. Hope you are doing good too.

Thanks, APB! 😀 I’ll second your comment above and hope this new year is a good one for us all.

I’m doing pretty well at the mo, APB, thanks for asking. Still on a protocol that is intended to elicit some heavy herxing – it’s working! So, having some rough days still, but my good days are the best yet!

Sorry you’re still getting flare-ups…from personal experience, these keep occuring for a year or so, but should be getting less intense, shorter in duration and less frequent as time goes on. Fingers crossed for you!

[zakdog]

Thank you all so much for the great advice and reading, I will do even more research as every core of my being says to keep doing ap. Maz, I did iv abx of clindamycin for twice a week for 6 weeks with no improvement until we stopped it so I may have been herxing the entire time, not sure. I also took diflucan 200 mg daily for two months and not sure it helped as it was in the beginning when I was constantly herxing but he wanted to treat yeast first. I actually will ask to try it again and may consider iv again. Since starting this post I actually pulled out my journal to follow my progress and the different changes I made and I really need to improve my diet especially my refined sugars. Also, I have continued the zithromax and am paying close attention to my symptoms and think I am having small herxing reactions and need to give it more time. I will ask dr r about penicillin. I think you are so right on changing the variables too quickly and not checking for a response by blood work I am going to bring this up at next visit. Compared to a year ago, I have pain but my pain is fairly constant with up and down periods. A year ago my flres were debilitating with freezing chills and pain uncontrolled and I was on the iv abx, minocycline, and 5 of prednisone or more on bad days. Even though it is far from controlled I have made progress and may need to revisit some of those therapies I tried now that I am well enough to feel a difference and the methotrexate has just made things worse so I will discuss thatbwith both my docs. I only use prednisone occasionally and feel better on ap with 2 mg of prednisone insteadvof methotrexate but i worry about this being worse for me than methotrexate. If the damage is equal then I may drop the methotrexate and also, it has been a year and non x-rays so who knows if I have damage. So I want x-rays. Thanks so much for your help…btw my rheumatologist said it is an increase risk taking minocycline and methotrexate but he said if we watch closely it should be ok.

[zakdog]

Maz….in scanning through the suggested reading I am amazes at how much I now meet the criteria. I have unexplained lumbar back pain and it is in my spine. My rheumatologist said it isn’t ra but thought maybe degenerative. I find it odd I am having so much jaw swelling with methotrexate, as I have not had this forever and throat and glands swelling now. These all fit into limes no ra. I will b demanding igenix testing….thx soo much

[Maz]

@zakdog wrote:

Maz, I did iv abx of clindamycin for twice a week for 6 weeks with no improvement until we stopped it so I may have been herxing the entire time, not sure. I also took diflucan 200 mg daily for two months and not sure it helped as it was in the beginning when I was constantly herxing but he wanted to treat yeast first. I actually will ask to try it again and may consider iv again.

I really need to improve my diet especially my refined sugars.

Also, I have continued the zithromax and am paying close attention to my symptoms and think I am having small herxing reactions and need to give it more time. I will ask dr r about penicillin.

I think you are so right on changing the variables too quickly and not checking for a response by blood work I am going to bring this up at next visit. Compared to a year ago, I have pain but my pain is fairly constant with up and down periods. A year ago my flres were debilitating with freezing chills and pain uncontrolled and I was on the iv abx, minocycline, and 5 of prednisone or more on bad days.

Even though it is far from controlled I have made progress and may need to revisit some of those therapies I tried now that I am well enough to feel a difference and the methotrexate has just made things worse so I will discuss thatbwith both my docs. I only use prednisone occasionally and feel better on ap with 2 mg of prednisone insteadvof methotrexate but i worry about this being worse for me than methotrexate.

Maz….in scanning through the suggested reading I am amazes at how much I now meet the criteria. I have unexplained lumbar back pain and it is in my spine. My rheumatologist said it isn’t ra but thought maybe degenerative. I find it odd I am having so much jaw swelling with methotrexate, as I have not had this forever and throat and glands swelling now. These all fit into limes no ra. I will b demanding igenix testing….thx soo much

Zakdog, thanks so much for taking time to fill in the blanks. 😉 The IV protocol Dr. R had you on is quite unusual…two IVs every week for 6 weeks? The usual protocol of most experienced AP docs is two IVs per day for 5 days in a row and these might be repeated at intervals (in severe disease, they might be done monthly, for others, they might do them every 3 or 6 months or annually…or just when in a flare). Some docs will start as low as 300mg for the first day, 600mg the second day, and 900mg the last three days. Others will jump right into 900mg twice daily for 5 straight days. Folk often report that they will feel pretty good while having IVs, if they make the trip to see Dr. S., then get home and find they are herxing quite a bit. So, think you’re probably right that you were experiencing an extended period of herxing for that 6 week period and may not have been “worsening,” at all, but just a lot of die-off, spread over a longer period of time. The other consideration is that if babesiosis is in your pathogen mix, then this type of clindamycin protocol would likely not have done much except stir things up. Clindamycin can be used for babesiosis, but it is a protozoan infection, much like malaria (which causes deep chills, fevers and sweats), and the lifespan of babesiosis is thought to be that of a red blood cell, which is 4 months (because babesiosis parasitizes RBCs). So, usually treatment for babs will be longer and continuous. Clindamycin can be very hard on the gut for long periods in high doses, so other classes of abx are usually used (described in the Burrascano link above e.g. Mepron plus Biaxin or Zith). And, sometimes it needs to be treated in rounds, because while one generation of RBCs reaches the end of their lifespan, newer ones may become infected. Babesiosis, like malaria, is a relapsing/remitting febrile illness, so can re-emerge when very run-down.

Diflucan is mostly prescribed for candida, but it’s also a Lyme treatment protocol that was developed by a German physician who also had Lyme, called, “The Shardt Protocol.” So, if you were dealing with yeast (and possibly Lyme) on top of all else, this could have been adding to the increased pain, too, from a good deal of die-off.

http://www.ncbi.nlm.nih.gov/pubmed/15337633

While on the Shardt Protocol, detoxing is quite important, because it works by blocking the P450 cytochromes of bacteria, but also this important detoxification pathway in the liver. This is why Diflucan can be hard on the liver and needs careful monitoring.

http://en.wikipedia.org/wiki/P450

I don’t know, but perhaps you were killing a couple birds with that one Diflucan stone?

The adrenals produce about 5mg of natural cortisone a day and the problems with dependence occur mostly with longterm use and higher (than 5mg) doses, because then the adrenals will shut down, atrophy and stop producing their own cortisone. So, 2mg isn’t a huge amount and, although the ideal is to avoid anything immune-suppressive if one does have Lyme and coinfections, if it’s needed to function, then it’s not too great a dose. Did Dr. R. mention the possibility of Cortef, instead of pred? Although Cortef is usually prescribed in doses 4x that of pred (in terms of equivalency), but thought to be less harsh and more bio-identical than pred. Perhaps something to ask him about? It can interact with some drugs, though, so important to check these (the following list may not be complete):

http://www.bing.com/health/article/goldstandard-1500081538/Hydrocortisone-Sodium-Succinate-Solution-for-injection?q=cortef&qpvt=cortef

Back/lumbar pain isn’t usually associated with RA, but is a common symptom of the spondylarthritides. Did your rheumy ever check to see if you may be HLA B27 positive? That said, Lyme can affect the neck and spine, because it can basically drill into all kinds of tissues. If you’re thinking your symptoms are a close match for the ones in Burrascano’s guidelines, you might want to push for IGeneX testing with Dr. R. even though he’s shrugged it off. A test that looks suspicious for Lyme (and thus assumed coinfections) might need the expertise of an experienced LLMD.

If this helps any, Zakdog, I was so severe in the beginning, I was pretty much bed-ridden, herxing for 3 months straight. That first year on Lyme treatments was monstrous. That said, my RA labs indicated that I was responding and I reached the 50% mark by end of year one. Sometimes the key to progress is just to stick to one protocol (e.g. minocycline and azithromycin) for a good period of time, and to watch those labs at frequent intervals to gauge the longer term trend. If there are signs of symptomatic improvement and labs moving in the right direction, then it’s a good way to figure out if one is on track. Some AP docs will pulse in Diflucan just to keep candida at bay, if it’s been problematic in the past. Whatever protocol you and Dr. R decide on (this current one or e.g. trying amoxicillin/diflucan), then sticking with it for a period of time is needed to get past that early worsening to really see if it’s working. Changing things too quickly, even dosage adjustments, can just upset the status quo and re-trigger more herxing.

Yup – diet and detoxing are pretty important, too, so getting this figured out could also help enormously with pain and inflam levels.

Glad the links above were helpful, Zakdog…do hope you find your answers and that 2011 will be your year to turn this beast around.

[suera]

Zakdog, your last post sounded like you are in much better spirits. I just wanted to say I know exactly how you feel, I too thought I wouldn’t have to do traditional meds and was very, very disappointed when I gave in and followed rheumy’s advice along with my ap dr. to start some big guns. Don’t beat yourself up over it though, you have a plan…sometimes we get side-tracked but that’s the nature of this beast. Just remember that you may have to veer off course now and then but keep the game plan in sight. We might get there a different route than we anticipated but we WILL get there, God willing. Keep hope alive!!
suera

[zakdog]

Thanks sue….I feel a bit better about things, feel like even though I am taking mtx I have gotten back on track with ap and have direction. I see my rheumatologist tomorrow and will schedule an apt with my ap doc next week as I have lots of questions for him and avenues I want us to explore. How do u like enbrel? I ask because the mtx has caused me to swell up so much and then last night the injection gave me a severe headache, chills, hot flashes. My joints are so much worse since starting this a month ago, it seems to be defeating the purpose. Thanks for your kind words. Joann

[suera]

Joann,

Enbrel has worked well for me, however I still hope to get off of it some day. The side effects scare me. I’d give the AP a good try first. It was at my AP doctors’ urging along with rheumy that I started Enbrel.

Glad you are feeling better about things.

suera

[zakdog]

Well….it is official, I am a mtx failure. I saw my Rheumatologist today and explained all the symptoms I have had over the past month and the very odd amount of swelling especially in my throat and jaw. Today I feel very good and thought maybe I was over the adjustment phase and ready to continue it but he feels that I am having adverse reactions and wants me to stop taking it. He feels that he cannot increase the dosage knowing that I am swelling in my jaw ect. as it may close my airway. I did not feel panicked about the swelling so I do not think I am allergic but have to say I am a bit relieved since I was taking it during the day in case I had to run to the ER. I asked him what next and he said nothing for the next month. He wants me just stay with my minocycline and use prednisone if I have a flare for 1 month and then we can talk, I also requested xrays of my hands to see what the current damage is. One really good thing, for some odd reason I am no longer anemic. He was shocked. We did a cbc and metabolic panel since I have been on mtx and my HCT lever has gone from 34 in Sept to 40 today. I wonder if I have just been in a giant herx this whole time from the start of the Zithromax???? and with this and the decrease in prednisone use my anemia corrected itself. It was the first bit of good news I had in months…..I will be scheduling an apt with My AP doc for next week and not modifying any of my meds again for awhile now that I failed two DMARDS in 1 month. I did ask about enbrel if I end up needing a med and he is not fond of it but his nurse says she loves it and it can be taken alone so definitely something to consider…..later on. Thanks for all the encouragement everyone, this has been a long month for me so time will tell. I just appreciate all your input and suggestions, it is such a balancing act at times. Joann

[suera]

Yeah! That’s good news! Is it your rheumy who doesn’t like Enbrel? WOW I’m shocked, is he in Ohio, cause I’d love to have a rheumy that was open to other options and not constantly pushing the biologics. As indicated before I am on one now but it’s ALL my rheumy talked about for a year and he wore me down and I relented. I’ve been to three rheumy’s and that seems to be the only trick in their bag so I think you might consider yourself lucky to have found a rheumy who is willing to try other avenues. I have a feeling the AP is going to work for you. 😛
suera

[zakdog]

My rheumatologist is sorta old school and he likes the older meds because of long term testing but he does feel people do well on biologics but he likes to encourage other meeds first. That is why I chose him. At our first appointment He said, I will provide you with options but I will not choose for you, you decide how you want to treat this, this is your body. And he gave me the minocycline, I see an AP doc but get most my prescriptions from my rheumy. He pushes nothing, I have to ask for it and he will give his opinion. In fact he said you can stay on the mtx if you want but I wouldn’t. He is pretty cool. I fired my first rheumy when he got pushy about meeds when I was first diagnosed. I live in utah and both my docs are here. And yes I think AP will work for me and for you, but It might just take a few traditional meeds too. Stay strong, thank you for all your advice. Joann

[suera]

Wow, I love your rhemy! I didn’t think there was one in existance that didn’t push, push, PUSH their meds and I found most act like it’s not your body and none of your business to boot! So glad you found an old school guy, when I started AP I was sweating bullets telling rheumy about my choice, isn’t that ridiculous?

We are going skiing in Utah in February (well under the circumstances of RA I can’t ski but I can spa!) maybe I should make an appointment with him when I’m out there. Is he near Salt Lake City? (I’m not joking! 😛 )

sue

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