Advice needed regarding next steps…

[karyninMiami]

Hello wonderful and supportive people!
Could use your wisdom again as this journey progresses. Quick history: Diagnosed 5/13 with seronegative RA after horrendous knee pain and hands swollen to the size of catcher’s mitts. Found a Rheummy who agreed (begrudgingly) to AP (minocycline 2 x day 100 mg) which I started late May. For the intense knee pain, did 3 rounds of Eufellxa shots which took the edge off (eventually). In July, added Planquinel when Euflexxa did not seem to be working. Was on Celebrex which stopped working so I stopped taking it (Sept.) but it was great for a while. Am gluten and dairy free, gave up nightshades and wine for the most part (95%) except for one binge (4 glasses) for my birthday and suffered the next day. Acupuncture (every other week), restorative yoga and swimming 30-40 laps 5x a week and taking long walks now a few times a week. Hands are always slightly swollen, knees still hurt (but less then before) and mornings are still not fun. Am often am awakened or disturbed in sleep due to pains in wrists, hands, shoulders and arms and have had 4 or 5 major flares (including the wine related one). For those, rheummy prescribed Prednisone which I took each time for 3 days, then weaned off- but felt great and totally normal while on it (truly is a miracle drug except for how toxic and bad it is for you). I am 4 days from my last half a prednisone (5 mg) and swelling in hands and knee pain are back again- not horrible but here. Took a Tylenol Arthritis and if pain gets worse, may take Tramadol. My Rheummy who is also not a fan of prednisone now prescribed Embrel rather then prednisone. (She’s also pushing methatroxate but I refuse each time). Embrel arrives today and I am terrified of it. Also latest blood results still show no indication of RA. SED rate at 9 and Rheum Factor at 9. So, I am still seronegative and part of me still wonders whether this is RA anyway but Rheummy is positive of her prognosis. Here are the questions of the day:
1) What effect will the Embrel, if I decide to take it, have on the antibiotic protocol?
2) Have any of you used Embrel and can you share your experiences? Since i’m not feeling horrible now, the idea of shots and knowing how toxic it is, terrifies me.
3) Would I be better of using low doses of prednisone short term with bad flare periods the starting on Embrel?
4) Shouldn’t I be feeling more relief by now after 4 months on minocycline and 2 months on planquinel or am I having unrealistic expectations? I do believe I am slightly better- hands and knees just not where I thought I would be at this point.

Thanks all- so grateful to you all for your support and guidance!

[Maz]

Hi Karen,

@karyninMiami wrote:

So, I am still seronegative and part of me still wonders whether this is RA anyway but Rheummy is positive of her prognosis.

Sometimes labs are negative early in disease and turn positive later. Sometimes they remain negative, but in those cases, there is no certainty as to type of rheumatic disease. Has she tested anti-CCP, CRP and ANA, too? If not, would request these be run. My SED remained negative, but CRP was highly positive at the outset. Sorry, you may have mentioned this before, but unable to remember if so. There are other rheumatic diseases that also present seronegatively, like ReA, AS and PsA, so these are generally diagnosed clinically by symptoms and gene-testing (HLA B27). This gene test might be worth getting checked, too, as it can point to type of infection and how to individualize protocol (e.g. maybe a combo abx protocol).

Here are the questions of the day:
1) What effect will the Embrel, if I decide to take it, have on the antibiotic protocol?

None…should be no interactions with minocycline and the biologics, as per Dr. Trentham in following article, but you can also double-check interactions on drugs.com 😉 Taking Enbrel would reduce disease activity and may (if effective) prevent you needing to use NSAIDs and other DMARDs. The usual reason for adding mtx to a biologic is to prevent the body from building antibodies to it over time, as some people find the biologics don’t work as effectively after a while. Hopefully, you would only need it temporarily and could spread the shots out when you’re stabilized on the mino and plaquenil.

http://roadback.org/index.cfm/fuseaction/education.display/display_id/508.html

“Clearly minocycline can provide adjunctive therapy for RA. In other words, minocycline
can be combined with any other available agent. There are no exceptions! Examples
include Plaquenil, methotrexate, Arava, anti-TNF compounds like Enbrel & Humira
and the new intravenous drug, abetacept (Orencia). Decreased doses of one or both
agents may help to avoid gastrointestinal side effects. This regimen usually reflects
a desire to obtain additional improvement or to gradually convert to the safer drug,
minocycline. Examples include 1. Not having to increase the dose of methotrexate and
2. By increasing the dose of minocycline additional improvement and /or stability may
be gained. Perhaps use of two oral drugs might preclude the necessity for an injectable
and more expensive drug. Obviously judging the net effect of either drug is difficult or
impossible. The same impasse may arise if a clinical or laboratory side effect occurs.”

2) Have any of you used Embrel and can you share your experiences? Since i’m not feeling horrible now, the idea of shots and knowing how toxic it is, terrifies me.

Haven’t used any biologic, myself, so perhaps others who have can elucidate for you. I understand that if you ice the injection site prior to the shot, it helps. The biologics aren’t so much toxic as that they suppress parts of the immune system that can leave one open to infections. Some folks seem to do okay in this regard but we also see folks looking for alternatives when emailing the Fdn for docs, because they are constantly sick with UTIs, diverticulitis attacks, chest infections, etc. You may do very well, though, and won’t know how it will affect you until you start it. Unlike plaquenil that can take 3 to 6 months to fully kick in, the biologics work pretty quickly and you should know quite early on if it’s having any effect. If not, then you may need to try something else, if that’s what you want to do.

3) Would I be better of using low doses of prednisone short term with bad flare periods the starting on Embrel?

Brown used low doses of pred in the short term for flares and herxing, but the biologics weren’t available in his day, so we just don’t know what he’d have preferred. Both have side-effects that each person has to weigh for themselves in terms of risk/benefit and both would need to be weaned carefully. Hopefully, others will chime in with their personal preference on these two drugs.

4) Shouldn’t I be feeling more relief by now after 4 months on minocycline and 2 months on planquinel or am I having unrealistic expectations? I do believe I am slightly better- hands and knees just not where I thought I would be at this point.

Not necessarily, no. Some folks don’t experience any improvements in their first year…it’s all pretty individual. I felt rough my entire first year, but knew things were improving by my labs. The challenge in your case is that you are seronegative (unless anything shows up in other labs mentioned above if not yet run). Usually, by months 6 to 8, if there is no discernible improvements in symptoms or labs, then it’s a good time to go back to the drawing board to see what might need tweaking (dose, adding a second abx, IV clindamycin, etc. for which you’d need to work with an AP doc). In your case, you’re on the Harvard Protocol, which may be causing excessive hypersensitivity, but you wouldn’t know unless a wash-out was done and then re-starting on a lower, pulsed or daily dose. With AP, a higher dose isn’t necessarily better for RAers or those with hypersensitivity issues. If Enbrel is started, though, this may mask the hypersensitivity and a higher dose might then be more appropriate (as tetras work bacteriostatically and the mino would act more as a DMARD).

Hope something here is of help, Karyn, and that others will also share their experience of the Enbrel or Pred dilemma with you.

[karyninMiami]

Thanks, Maz as usual for your insight and suggestions. The Embrel is in my fridge- am feeling very unsure about starting it and since I’m not having a flare at the moment (Tylenol is doing the trick for my knees and my hands are only slightly swollen), I’m not in a huge hurry to begin. Have been thinking of scheduling an appointment up in Jacksonville with Dr. G., one of the physicians on the list you all sent me who of AP practitioners. I had contacted them initially and had assumed I would wind up there but when I found a rhummy that was willing to give me AP here, I decided to give it a try. Now I’m thinking it may make sense to have someone review everything that I’ve done so far and give me some recommendations from a more holistic perspective. It’s a long drive however so I need to plan for the visit and the trip…

But I’m happy to know that if I do decide to take the Embrel, it won’t impact the AP which is important since I do not want to do anything that will result going backwards after 3 months on minocycline.

Thanks again!

RBFV Edit to remove AP Physician’s full name as per forum guidelines, to protect physician privacy. Thanks for your understanding.

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