When to use IV treatment?

[laurawm]

Hi Everyone,

Right now I am on low doses of minocycline (250mg a week split between MWF in 50mg capsules) and 100mg plaquenil daily. My herxing is very high – also contributed to by supplements – and I find it excruciating to try to up my mino dosage by even 50mg every other week (my doctor would like me to up my dosage 50mg a week till I can tolerate 100mg BID MWF, but this is too aggressive a schedule, which she accepts but still is encouraging me to try to get my dosages up in order to move forward).

My question is regarding IV treatment. I keep thinking that I could not tolerate an IV clindamycin right now because the herx would be too strong, but then I wonder if I am wrong and perhaps it would greatly help move me forward? Any feedback is appreciated.

Thanks,
Laura

[laurawm]

Maybe this is a better way of asking the above: If you have used IV ABX how did the herx/benefit compare to oral ABX? – thanks, just trying to decide whether to pursue IVs or not at this point.

Laura

[Maz]

@laurawm wrote:

Maybe this is a better way of asking the above: If you have used IV ABX how did the herx/benefit compare to oral ABX? – thanks, just trying to decide whether to pursue IVs or not at this point.

Laura

Hi Laura,

I began having IV clindamycin rounds last Feb. I probably would have begun earlier, but my first LLMD didn’t do IVs. I have consistently found that while having IVs I feel more tired than usual, but also find any RA symptoms abate quite quickly. The herx usually hits within days to a week after the round is complete. This seems to be pretty commonplace amongst RAers who go to see Dr. S. in Iowa for the 5 day series. While there, they report feeling so much better once IVs are begun, but upon returning home in the days following, the herx hits and they feel much worse for a few days. This can be somewhat unnerving for newcomers to AP, naturally, as they feel quite safe while under the careful watch of Dr. S., but worried when home and things start to feel like they’re going downhill suddenly.

There is a story in The New Arthritis Breakthrough about Carol Lange (one of the founders of RBF), who had RA and was a long-time patient of Dr. Brown’s. During one severe flare, he recommended having IV clindamycin, which apparently knocked out her flare. This is perhaps not so surprising, because clindamycin is used in cases of toxic shock (along with vancomycin) for its properties as a “powerful inhibitor of toxin synthesis.”

See sub-heading entitled “Other” at following Wiki Link:

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

I’ll type out the info on Carol Lange for you (p. 295) in case you don’t have a copy of Henry Scammell’s book or for newcomers who may be interested – also, by way of update, I had it on the good word of Pat Ganger (co-founder of RBF), just last year, that Carol Lange’s RA had been in remission for many years and that she only suffers from clicking in one knee:

“In 1988, Carol Lange experienced a severe flare-up of rheumatoid arthritis, a disease that her doctor, Thomas McPherson Brown, had been controlling with antibiotics for the previous twenty-four years. Dr. Brown knew that flare-ups, in common with fast-moving or severe disease as well as all forms of scleroderma, require aggressive intervention. As usual, he started her off with 300 mgs of clindamycin administered intravenously the first day, then 600 the second and 900 every day for the balance of the week, along with her regular course of oral minocycline, and the flareup slowly receded. (At a recent conference of physicians experienced in antibiotic therapy for scleroderma and other connective diseases, there was a consensus that this combination approach was the most effective in dealing with such extremes).”

All this said, for as long as I’ve been around here on the forum (6 years), it seems evident that everyone’s response to clindamycin IVs is unique. Some folks notice immediate improvements and continue to get better and better after a 5-day round while others will herx a week or so later and then begin to improve (a few don’t notice much in the way of improvements). Some folks don’t feel so great while having the IVs and others feel just fine…some feel even better than usual. So, it’s hard to say how anyone is going to react, except to say that if one experiences a herx, then it’s safe to also say that they are probably hitting something quite important in their pathogen load that needs to be hit. If there is no herx and a person continues to improve, they may have improved anyway or perhaps the clindamycin was helpful in inhibiting bacterial toxins (antigens)? Just surmise on my part, though.

I can’t say I herxed more intensely than I did when beginning orals or switching protocols, because I had been on various rounds of different orals for a number of years before trialing clindamycin. Had I started clindamycin from the get-go, my herx may have been just as monstrous as it was on combination orals….just don’t know. I did, however, have a very clear herx reaction and it began within a week of finishing the 5-day series and lasted a good week or so. As I am doing regular rounds of IV clindamycin, the degree of herxing has diminished over time, but is regular as clockwork after the series ends…always hitting within a week after the last IV.

The upside of IV clindamycin is that it’s pretty well tolerated by most people. As the link above states, “Rarely

[laurawm]

Thanks so much, Maz. I really appreciate you taking the time to respond – it is helpful to know that your IVs did not necessarily induce higher herx responses. I just need to make some faster progress (I am making progress – when all is done I will write out all that has hurt and cleared my body – it is astounding to me – I realize how sick I have been for so long just accepting it all – sad), as my joints are suffering (and my life – but this can recover – I am really worried about my joints).

As you’ve probably gathered, I so love my LLPA – as a person she is intelligent, compassionate, and witty and I just want to be friends with her (I do not want this emotional connection I feel with her to blind me), and as a doctor she has long and deep history working with some truly great other ABX/LLMD doctors and has successfully lived through treating neurological Lyme in herself…But… she is also less than a year into establishing her solo practice and I have gotten the impression that she would rather not do clindy IVs (due to taking on liability for Cdiff), though she did say she would be willing to consider it if she thought this is what was needed but that she’d rather work with another prescribing doctor already doing IVs – that leaves me with Dr. B in Asheville (unless I travel) and I have no interest in seeing any doctor who is going to sidetrack me again – I can’t afford that physically or psychologically at this point. If I need an IV and she does not agree to do it herself, I will likely go to D.C. to see Dr. J since she works with him anyway. The IM injection is a good alternate starting point, though.

Ah, yes, I have Schammel’s book – since last spring. I find it so difficult to read. I can’t read more than a page or two without starting to cry or swear. It’s just all so present and accurate at this moment. Like sitting in an AA meeting still drunk and having no choice but to face it and go cold turkey and everyone is talking about what’s wrong with you and how they got better, but you feel like lsjflaj, so it just hurts to face the truth and regret and fear and anger. I keep telling my husband that this disease picked the wrong person to tee off (that’s nice language). I’ve spent my whole life planning my future and now it seems my future has planned itself. I am not going to shut up about this. Hopefully I’ll learn some better manners down the line and my anger will fuel action rather than just tears and swearing, but right now I’m just so sad and so mad. I see how both my babies have and are dealing with issues from bacteria in their systems since birth. My son is going through herxing right now on colostrum (thank God we’ve caught it now and it is coming out through his bowels, cough, and skin and not continually through his joints).

I’m so tired, Maz. You give me hope. I know you have suffered as I am now – I know you’ve been where I am at. Thanks for listening.

Laura

[Maz]

@laurawm wrote:

As you’ve probably gathered, I so love my LLPA – as a person she is intelligent, compassionate, and witty and I just want to be friends with her (I do not want this emotional connection I feel with her to blind me), and as a doctor she has long and deep history working with some truly great other ABX/LLMD doctors and has successfully lived through treating neurological Lyme in herself…But… she is also less than a year into establishing her solo practice and I have gotten the impression that she would rather not do clindy IVs (due to taking on liability for Cdiff), though she did say she would be willing to consider it if she thought this is what was needed but that she’d rather work with another prescribing doctor already doing IVs – that leaves me with Dr. B in Asheville (unless I travel) and I have no interest in seeing any doctor who is going to sidetrack me again – I can’t afford that physically or psychologically at this point. If I need an IV and she does not agree to do it herself, I will likely go to D.C. to see Dr. J since she works with him anyway. The IM injection is a good alternate starting point, though.

Laura, I think what you’ve said above shows such a lot of discernment and wisdom. It is easy to become invested in treatment plans when there is a good degree of trust in a treating medical professional who is likewise invested in their mode of approach. Like patients, medical professionals can be blinded by an immovable investment in their belief paradigm…we see it all the time here, whether the physician is conventional or alternative. This can lead to an individual patient’s needs not being met or becoming less of a priority than following a prescribed protocol. You have hit the nail on the head, though, that each one of us must advocate for ourselves and, in so doing, learn the art of personal discernment through researching our treatment options and weighing risk/benefits, including the financial investment.

There is a point when we must surrender to the higher knowledge of our treating physician and that point will be different for each of us, but I have found that the best physicians are ones who appreciate the input of their patients to work together as a team for the best possible outcomes and that patient preferences for treatment options are considered as a part of this equation (providing it is within the provider’s ability to provide in terms of preserving their medical license and is within a reasonable range of risk/benefit they are willing to take).

I have been fortunate with both my LLMDs, because they lay out all my options for treatment, leaving the choice up to me, and they also have listened to anything extra I have found, explaining why it might or might not be of benefit to me. If it’s relatively harmless or the risks within reason, they are usually game to give something a go. Neither has ever felt threatened by my suggestions and they have encouraged my participation in the decision-making process. So, I can understand why you must be feeling as you are about your new LLPA who seems very similar in approach. So, I wish you the very best as you navigate this decision-making process for yourself, especially in the midst of feeling so unwell. I think your plan to see Dr. J. is a really good one, if you can manage it, and it’s never a bad idea to get input from a really experienced physician, especially when we’re at a crossroads in our treatment path.

Sending all good wishes to you and yours for the holiday season, Laura. Let us know how you get on with all this and do hope others will chime in with their experiences of having IVs for RA with you, too, so you can get a good overall picture of this. 🙂

[laurawm]

Thanks, Maz. Ironically, I feel better than in a long time today. Thank goodness, as my to do list is long today with it being Christmas Eve and having two small children and all that both those entail.

Best to you and Merry Christmas – I hope you know how much your presence here changes lives. Thank you.

Laura

[Eva Holloway]

Maz,
do you take clindy IV for the 5 or 6 days that is required or just one day? Dr. K has started to do the IV’s now and I just wonder if I should ask her to put me on the IV to give me a boost.
Eva

Eva Holloway

[Maz]

@Eva Holloway wrote:

Maz,
do you take clindy IV for the 5 or 6 days that is required or just one day? Dr. K has started to do the IV’s now and I just wonder if I should ask her to put me on the IV to give me a boost.
Eva

Hi Eva,

I’ve been doing both for the past year….5 day series (900mg BID) every month and 1 day a week in-between (900mg BID). So, basically 16 infusions x 900mg per month. This is a pretty aggressive protocol, but I was at a point when I was ready for it. This wouldn’t suit anyone with a lot of inflammation/hypersensitivity probably.

Frequency of IVs will vary amongst rheumatics depending on their needs. Some folks only do a 5-day series every year, every 6 months or every 3 months, for instance. Some will do the 5-day series only when flaring or will start with the 5-day series and then do one IV per week or month thereafter. Really depends on how well a person does and the MO of the treating doc. I’m with a LLMD, so he takes a more aggressive approach. As you’ve done so well with biaxin in the past, there’s a good chance you’ll do well with clindamycin, too. Although clindamycin isn’t strictly a macrolide, it’s action is similar, which is why one can’t take a macrolide while on the IVs (creats cross-resistance).

Glad to hear that Dr. K. has got onto the IV bandwagon. It’s good to know there is an experienced AP doc in TX who is open to these.

Eva, we don’t see you around here much anymore…hope all is well…you’ve been missed! 🙂 Please check in an let us how you get on and sending all good wishes for a very healthy 2013 to you and yours!

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