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I have seronegative RA– tests show no RA yet but lots of inflammation. Started 6 weeks ago out of the blue with painful knees and then my hands swelled to be unrecognizable and many more joints hurt. Could barely get out of bed. The first rheumotologist would not consider administering antibiotic protocol no matter how much info I sent him and how much I pleaded. He just did not believe that RA comes from an infection. Because my tests were mostly negative, I decided to get a second opinion and if that doctor agreed with the first diagnosis, would decide which protocol to do- either traditional (with Plaquenil) or with the AP (which would have meant major expenses as the only physician within an hour from here takes no insurance and the who does is 6 hours away). Today, after reading my chart and agreeing that this is Seroneg RA, and hearing my aversion to Mehtatroxite and any other harsh meds, she agreed to let me try this for 3 months. If I have a flare up and my hands swell up to where they were a few weeks ago (before I discovered Celebrex) I agreed to come see her and discuss another treatment to avoid damage to my joints. But she felt that waiting this out for 90 days since my symptoms as of today are minimal, is ok! I was so relieved I cried.
For those of you who have been doing this for a while without starting off with injections, can you share your experiences? I understand there’s a point when I may start to feel worse- “Herxheimer” does this happen to everyone? What should I watch for and how long will it last? Are there any side effects I need to be especially concerned about?
Thanks so much- love this site and so grateful you are all here!
RBFV Message: This post has been transferred from the Personal Progress section of the forum, which was created for forum members to keep a personal log of their journey on AP (antibiotic protocols). As it is for personal use of the originator of the thread only, it is not set up to generate responses from other users. 🙂
Hi Karyn and welcome to The Road Back. The herxheimer reaction does not happen to everyone — it did not happen to me. But it’s possible — pay close attention to how your body is reacting, and take good notes, come here and ask questions. My RA also came on suddenly — but I was in the process of moving my house of 20 years and thought I had injured myself. It took 7 months before I had the real diagnosis and began treatment. I was lucky — I did begin to respond in the first 3 months; some people take longer.
I started minocycline, plaquenil and celebrex all at about the same time. I dropped the celebrex in the first few months, but have been on the other two meds (as well as tons of supplements)for almost 6 years now. I have my life back. You can find my story here:
https://www.roadback.org/index.cfm/fuseaction/community.display/display_id/511.html
Hope you heal quickly.
Bonnie
Bonnie Lou
RA 02/07,AP 10/07
Minocycline 200mg MWF; Plaquenil 100mg 3 days/week
Fish Oil, Ubiquinol, Turmeric, Vit C (2 grams) , MultiVit, Magnesium, Astaxanthin, D3 (5000), probiotics and a daily dose of yoga!Hi Karyn,
Nice to meet you and do hope you will feel warmly welcomed here. 🙂 Starting out on a journey of the unknown can be a bit unnerving and it really helps to talk with others who have been on the journey for a while. This forum was a god-send for me at a time when I was in a good deal of pain, frightened to death of my diagnosis and wondering if I’d ever get better. So, you’ll find that we all understand what you’re facing, even if our diagnosis is a bit different.
@karyninMiami wrote:
I have seronegative RA– tests show no RA yet but lots of inflammation. Started 6 weeks ago out of the blue with painful knees and then my hands swelled to be unrecognizable and many more joints hurt. Could barely get out of bed.
So sorry to hear this. Can you share what labs you had run that were out of range, Karyn? When you say “lots of inflammation,” was your SED and CRP elevated and, if so, how high? I’m asking because when there is a good deal of inflammation, this can sometimes provides a clue of the degree of herxing a person will experience and can also help to determine how “low and slow” a person should approach treatment in terms of dosage. In other words, the higher the inflammation, the greater the herx, in general. So, this is why Dr. Brown would carefully titrate the dose of abx to the patient, to keep things as tolerable as possible without creating a tissue hypersensitivity situation. When I started out on minocycline, I wanted to get as much immune-modulation as possible, so I started out with 100mg daily and then increased to 100mg BID the following week. BIG mistake. My herx hit about 2 weeks in and I was in bad shape, so asked my doc if I could lower the dose and trial the low dose, pulsed method, which brought me close to remission by the 10 month mark (I was also pulsing in azithromycin).
What’s kind of interesting is how rheumatologists can be so sure of the “sero-negative RA” diagnosis, when there are other possible rheumatic diseases that present as sero-negative, such as ReA (reactive arthritis, Still’s Disease, and the spondylarthritides (PsA and Ankylosing Spondylitis). It can be a challenge in the early days to get a definitive diagnosis when there are no defining labs to point to one thing or another. So, the “sero-negative” label is a bit of a flimsy one. Sometimes, positive labs emerge later, but sometimes a person remains sero-negative. In the latter case, the “sero-neg” designation is just a catch-all garbage diagnosis really…it looks like RA, but they don’t really know.
The first rheumotologist would not consider administering antibiotic protocol no matter how much info I sent him and how much I pleaded. He just did not believe that RA comes from an infection.
I just find it a bit of a hasty diagnosis in light of the fact that reactive arthritis is “reactive” because it is known that it is caused by an infection of one sort or another! Otherwise, why would the body be reacting in this way? In fact, it’s pretty well acknowledged that some type of infection sets off rheumatic disease as a trigger, so it’s just odd that the field of rheumatology is so resistant to trialing abx, especially when a person presents as sero-negative. Rheumatic fever is a classic rheumatoid disease caused by strep and must be treated with long-term antibiotics. And, Lyme disease can also cause JIA and RA – this is how the infection was first identified in Lyme, CT…from a cluster of folks who all had rheumatic manifestations. Go figure, eh? 🙄
Because my tests were mostly negative, I decided to get a second opinion and if that doctor agreed with the first diagnosis, would decide which protocol to do- either traditional (with Plaquenil) or with the AP (which would have meant major expenses as the only physician within an hour from here takes no insurance and the who does is 6 hours away).
Very wise decision to seek a second opinion, Karyn. Sounds like the first rheumy may not have been a great one to partner, anyway, on your journey for the longer haul, even if you had opted to go the traditional route. These days, I’m much more selective about the hands into which I will place the care of my health. When I go to a doctor, I view them as a consultant and someone to partner in “my” treatment decisions once the options have been laid out. If I don’t like the options or feel the doctor isn’t open to at least discussing other options, I move on. These diseases are rough-going and, if a doctor makes you feel powerless to help yourself, then this creates a negative loop of dependency and helplessness. When you’re feeling helpless and in pain, anyway, this doesn’t make for a positive long-term outlook.
Today, after reading my chart and agreeing that this is Seroneg RA, and hearing my aversion to Mehtatroxite and any other harsh meds, she agreed to let me try this for 3 months. If I have a flare up and my hands swell up to where they were a few weeks ago (before I discovered Celebrex) I agreed to come see her and discuss another treatment to avoid damage to my joints. But she felt that waiting this out for 90 days since my symptoms as of today are minimal, is ok! I was so relieved I cried.
That’s good news, Karyn, but it’s worth noting that not much improvement is expected in the first 3 months and some folks can herx for that length of time, especially those with lots of inflammation. Not always, as Bonnie described above, but 3 months isn’t really long enough for a good trial period. Rheumies just don’t view minocycline as anything more than a weak DMARD for RA, as they don’t recognize an infectious cause, but even the MIRA trials were run for 48 weeks for a reason (because this is a slow therapy). 😉 So, if you go back in 3 months and find your labs and your symptoms haven’t at least plateaued or are worse, then it’s worth noting that patient experience has shown that it usually takes a good 6 to 8 months before it is worth going back to the drawing board. Within the first few months (unless someone is a really swift responder and in many cases early, mild cases are like this), you may find little windows of light peeping through…maybe a few hours in a day or a run of a day or two where you feel better, less brain fog, less tired, less pain, but then you feel like you’re going backwards again. It’s a bit of a to-ing and fro-ing type thing for a while…sort of a three step fwd, two step back dance all the way to remission.
For those of you who have been doing this for a while without starting off with injections, can you share your experiences?
By “injections,” do you mean IV clindamycin?
I understand there’s a point when I may start to feel worse- “Herxheimer” does this happen to everyone?
As Bonnie described, not everyone experiences a herx, but the rule of thumb is that if a person has a lot of inflam and isn’t on anything immune-suppressive, then a herx is more common than not. It’s actually a good sign that the abx is reaching its intended target. As uncomfortable as a herx may be, some folks are actually pleased to get one, so they know the treatment is working. It can be more unnerving for folks who don’t as they are wondering if it’s working for them.
What should I watch for and how long will it last?
Herxes are like a controlled flare…meaning that it’s a flare in disease symptoms but has a cause and can be controlled to the extent that the dose can be lowered or raised to elicit less or more herxing. Here is a link on the main site, describing a herx and what may be expected. It may last hours, days, weeks and, in some cases, months or in cycles and can vary when it begins to kick in, too:
https://www.roadback.org/index.cfm/fuseaction/education.display/display_id/91.html
https://www.roadback.org/index.cfm?fuseaction=studies.display&display_id=184#Anchor-The-51540
There are ways to help manage a herx, so if you find yourself feeling worse, then folks here can share ways to help detoxify to support your body to eliminate those circulating inflammatory toxins.
Are there any side effects I need to be especially concerned about?
There are some minor, usually transient side-effects of minocycline that can happen until the body adjusts, such as nausea or dizziness. There are ways to counter these possibilities, though, so if they happen, folks here can share what they did to help avert these or lessen their effects if they do happen. Aside from any signs/symptoms of outright allergy, which is always a serious thing if it happens, here is a list of possible side-effects on drugs.com. In general, these tend to be minor by comparison with other RA drugs, but there can be some more serious complications in unique situations. If you’re getting regular lab monitoring, though, anything that is amiss of any concern should show up. By the way, it’s always worth getting hard copies of your labs, so you can watch your progress over time:
http://www.drugs.com/sfx/minocycline-side-effects.html
Thanks so much- love this site and so grateful you are all here!
Glad you found us, Karyn, and hope it won’t be long until you’re feeling better! As you are starting early, this bodes well for a good response. 🙂
Finally getting back to you Maz and to you Bonnielou- thanks for both of your replies! Sorry for the delayed responses. I lost my job 3 weeks ago so on top of the RA, things are pretty intense as you can imagine. Talk about adding another layer of upset and stress – yikes. But I’m doing ok overall aside from the massive Cobra bills and now job hunting on top of being focused on learning to live with RA.
Maz- you had asked about the blood work- not sure if this is the number you are asking about but the C- Reactive is 5.29 (shows up as “high”) and the Rheumatoid factor is 7. Am I looking at the right part of the blood work report? Those are the only areas on the report that are not in normal range. I can send it to you if you want to have a look- just let me know how to facilitate that.
I too wondered about being labeled as sero-negative RA wand whether this means I really have RA or if it’s just the doctor’s need to give me a label so that they can bill my insurance for something specific.
Greatly appreciate your sharing that 3 months on AP is probably not going to do the trick and that it’s ok to demand my Rhum give me another 3 months worth of medication to see this though. If my numbers are not showing improvement however, does adding planquenil interfere with the AP protocol in case the doctor insists I do this? This is not something I want to do but her attitude about the AP was pretty negative- she begrudgingly prescribed it saying it’s not her first choice but if I insisted she would give it a try. She’s a big fan of the more traditional methods are most Rheummys are apparently.
I am now 3 weeks into the AP protocol. Taking Minocycline in the morning and at night along with daily Celebrex and when the pain in my knees mostly gets too high, Tramadol – when the pain is lower I take Tylenol. Also a host of other nutritional supplements as suggested my my holistic nurse.
I am happy to report that the swelling in my hands has gone down considerably – still a bit sore and stiff in the mornings but it only lasts a short time now. I now have bursts of feeling totally normal in my hands which look totally normal as well which is a big relief. There’s still stiffness here and there but there are times- especially towards the end of the day, when it’s as if nothing happened and my hands are my own again. The worst of the pain now is in my knees when I stand up or sit down. They feel better after swimming (am doing 30-45 minutes 4-5 days a week) and after ice but otherwise are pretty painful. I may contact my doctor to request Synvisc injections next week but was waiting to see if this would subside.
With that said however, I’ve noticed the past few nights that my sleep has been interrupted by pains in my feet (top of my feet), my arms, shoulders and even my knees. It subsides by the morning but it’s pretty intense at night and for the past 3 nights has been so bad it woke me up from a deep sleep. Might this be a flare up or Herx reaction?
I also noticed that my arms (shoulders and elbows) are feeling really weak. This is in spite of doing 30-40 laps in the pool which I would have thought would mean they would be getting stronger but they are not. Is this part of what one can expect with RA? Would lifting some light weights and doing weight bearing exercises do any harm? Would it make more sense to ask my rheummy for a PX for physical therapy?
It is like you said- you have a few days of feeling great, then you go backwards for a day or so = three steps forward and one step backwards.
Thanks again to you all.
Hi Karyn,
Be sure to take a good probiotic every day, but not within two hours of taking minocycline. As a precaution, some people take more than the recommended dose of probiotic or take more than one kind of probiotic. I prefer to take more than one kind.
What dose of minocycline are you taking?
Phil
"Unthinking respect for authority is the greatest enemy of truth."
- Albert EinsteinHi Phil-
I am taking 100mg of minocycline twice a day. I take my first one upon waking up (along with my bio-identical thyroid meds) and the second one at bedtime which was what my rheummy said is the usual dose (she was not happy about it as I mentioned previously). Should I take the second one earlier in the hope of lessening the pain at night?I am taking a good probiotic which I take with the rest of my supplements a few hours after the morning dose of minocyclene.
Also have gone gluten and dairy free and eat no meat ( but I do eat fish).
There is definite improvement in my hands and fingers so aside from my painful knees (24/7) and the pains at night (not every night but many) I am seeing improvement.
Thanks for your suggestions!
Hi Karyn,
@karyninMiami wrote:
Finally getting back to you Maz and to you Bonnielou- thanks for both of your replies! Sorry for the delayed responses. I lost my job 3 weeks ago so on top of the RA, things are pretty intense as you can imagine. Talk about adding another layer of upset and stress – yikes. But I’m doing ok overall aside from the massive Cobra bills and now job hunting on top of being focused on learning to live with RA.
Karyn, really sorry to hear that you have lost your job. Yes, must be a very stressful time, so just be sure to look after you. Stress will ignite flares in RAers and AP will not prevent flares, because it is not immune-suppressive in the sense of other DMARDs, nor a pain-reliever, like NSAIDs. Flares will continue to occur while on AP, but over time these should begin to wind down, being less intense, less frequent and shorter in duration until remission is reached.
Maz- you had asked about the blood work- not sure if this is the number you are asking about but the C- Reactive is 5.29 (shows up as “high”) and the Rheumatoid factor is 7. Am I looking at the right part of the blood work report? Those are the only areas on the report that are not in normal range. I can send it to you if you want to have a look- just let me know how to facilitate that.
Karyn, depending on which lab you’re using a CRP reading of just below 5 is within range, so your inflammation is pretty low right now, which is a really good thing. There have been folks here with CRPs well above 100 and at my worst, mine was 44.4. A passing acute infection can also send the CRP up, so your reading is okay and nothing to be too concerned about. Also, with RF, a reading below 16 is normal, so you’re well within range on this, which is also great! If these are your only abnormal labs, then you’re in good shape and AP should work very well for you. Folks who are sero-negative for RA tend to respond a lot more swiftly (unless they are complicated by Lyme which can show up with a strange lack of inflam in some folks who are also experiencing a great deal of pain). Did your doc also do your SED rate, ANA and anti-CCP? Additionally, don’t worry too much if these labs worsen in the early days while on AP…this is part of the herx effect. After several months when the worst of herxing passes, any elevations should start to come down.
I too wondered about being labeled as sero-negative RA wand whether this means I really have RA or if it’s just the doctor’s need to give me a label so that they can bill my insurance for something specific.
Could be, but also worth noting that some folks get labeled with seronegative RA and find later they were mis-diagnosed and really had AS (ankylosing spondylitis), PsA (psoriatic arthritis) or ReA (reactive arthritis). These rheumatic diseases can also look like RA in the early stages and can be a challenge to diagnose as there are no definitive lab markers for them. There is a gene test that can be run, called HLA B27, which is positive in many cases for these, but if negative doesn’t necessarily rule them out either. This is not to concern you…just passing along info for further ref if it should ever come up. The good thing is that AP works well for all rheumatic diseases and especially so for mild cases in the early stages!
Greatly appreciate your sharing that 3 months on AP is probably not going to do the trick and that it’s ok to demand my Rhum give me another 3 months worth of medication to see this though. If my numbers are not showing improvement however, does adding planquenil interfere with the AP protocol in case the doctor insists I do this? This is not something I want to do but her attitude about the AP was pretty negative- she begrudgingly prescribed it saying it’s not her first choice but if I insisted she would give it a try. She’s a big fan of the more traditional methods are most Rheummys are apparently.
I have used plaquenil and, believe it or not, it has some great anti-protozoal and anti-inflammatory effects. It’s used by Lyme docs all the time for the coinfection, babesiosis, and is also thought to have some effects on the dormant cystic form of Lyme. It was originally developed to treat malaria (which, interestingly, the tetracyclines also do!), but was found to also help use folks with some inflammatory rheumatic diseases, so is used “off label” for RA, similar to minocycline and other rheumatic drugs, such as methotrexate, which was originally designed as chemotherapy for cancer patients. So, if you need some anti-inflam support, plaquenil isn’t such a bad choice and I’d actually prefer it over NSAIDs, which can be quite damaging to the gut. The only thing with plaquenil is that patients need to get eye tests every 6 months, as it can cause toxicity in the eye…but as most opthalmologists will tell you, this is rare and most have never even seen this issue. That’s not to say there are no side-effects. I got some nice anti-inflam effects from it when I was really severe, but I did stop it after 5 months the first time due to ocular migraines and second time I stopped it due to explosive gas. I wouldn’t hesitate to try it again, though, if ever needed, because I trust that my LLMDs would not rx anything that was going to be harmful (relative to other RA treatments) and they monitor everything so closely, anyway.
I am now 3 weeks into the AP protocol. Taking Minocycline in the morning and at night along with daily Celebrex and when the pain in my knees mostly gets too high, Tramadol – when the pain is lower I take Tylenol. Also a host of other nutritional supplements as suggested my my holistic nurse.
I think you said you’re on 100mg BID mino, which is the standard dose a rheumy will prescribe. If you can tolerate it, then that’s okay. Many RAers with lots of inflam can’t tolerate the herxing that dose will produce, so will wind up dialing back their dose to find a more comfortable level….pulsing as Brown would have done.
Be careful not to take your minocycline before lying down. It’s really important to take it with a full glass of water and to remain upright for a good one or two hours before bed or just lying down to watch TV. Tetracyclines can cause esophageal burning so bad that it can send folks to the ER! This happened to my daughter when she was taking doxy for acne at college. A stuck cap or one that hasn’t gone fully down or any reflux can do this. So, best to take the mino at least a couple hours after dinner and a couple hours before bed. E.g. If one eats at 6pm, then mino can be taken at 8pm, then bed at 10pm.
I am happy to report that the swelling in my hands has gone down considerably – still a bit sore and stiff in the mornings but it only lasts a short time now. I now have bursts of feeling totally normal in my hands which look totally normal as well which is a big relief. There’s still stiffness here and there but there are times- especially towards the end of the day, when it’s as if nothing happened and my hands are my own again. The worst of the pain now is in my knees when I stand up or sit down. They feel better after swimming (am doing 30-45 minutes 4-5 days a week) and after ice but otherwise are pretty painful.
If you are able to swim at this stage, you’re doing fantastically! Swimming is excellent exercise to maintain range of motion and is low impact on inflamed joints. Best to avoid any higher impact exercises on inflamed joints as this can create injury and more damage. E.g. a swollen knee is more prone to meniscus tears.
I may contact my doctor to request Synvisc injections next week but was waiting to see if this would subside.
My understanding of Synvisc shots is that they are pretty inert and shouldn’t be a problem. If you have no visible damage in your knees at this stage, however, you may have probs getting them covered by your carrier. They need pre-approval and most carriers will only allow them every 6 months. They’re usually given to folks who want to delay knee replacements and apparently do help with pain-relief and inflammation.
With that said however, I’ve noticed the past few nights that my sleep has been interrupted by pains in my feet (top of my feet), my arms, shoulders and even my knees. It subsides by the morning but it’s pretty intense at night and for the past 3 nights has been so bad it woke me up from a deep sleep. Might this be a flare up or Herx reaction?
Yes, I’ve experienced this, too, and it’s pretty typical of herxing. We do a lot of detoxing at night (the liver dumps toxins around 3 or 4 am), so these tend to build up in the tissues at night. I invested in a Far Infrared Sauna a few years ago, upon the advice of my doc at the time, and it’s been one of the best investments I’ve ever made. I do my sauna 2 or 3 times a week (except for in this heat we’re experiencing up here in the NE right now) right before bed and then a shower. The deep penetrating infrared rays really help with muscle and joint pain, but also for sweating out the toxins. I also use Tri-Salts mixed in two bottles of water that I drink while in the sauna and after to replenish lost minerals and to help neutralize acidic wastes. There are many ways to detox that people share here. I listed the ones that work for me in my Personal Progress thread…some very easy to do at home, like the lemon/olive oil detox drink, which acts like a slow liver flush.
I also noticed that my arms (shoulders and elbows) are feeling really weak. This is in spite of doing 30-40 laps in the pool which I would have thought would mean they would be getting stronger but they are not. Is this part of what one can expect with RA? Would lifting some light weights and doing weight bearing exercises do any harm? Would it make more sense to ask my rheummy for a PX for physical therapy?
Yes, muscle wasting occurs with RA. E.g. when knees are inflamed, the muscles above the knees, the thigh muscles, will waste. Dr. Brown talked about this in the video at the top of the forum, if you have a chance to watch it. It’s a pretty dated movie now, but the info is still relevant.
It is like you said- you have a few days of feeling great, then you go backwards for a day or so = three steps forward and one step backwards.
This is all good news, Karyn, because although the early days of herxing are rough, it sounds like you’re experiencing a textbook response to AP. Hang in there and do what you can to support the therapy with your diet and detoxing….and don’t forget your probiotics, two hours well away from your abx doses. 😉 Candida is largely preventable with probiotics, but such a nuisance to try to eradicate and control once it sets in.
Hi Maz,
Thanks for all of your great wisdom and suggestions. I will be sure to take the minocycline 2 hours before bed and make sure the morning pill (taking it twice a day) includes a full glass of water. Also will space the probiotic for at least 2 hours afterwards.Still confused about the blood work since the second rheummy commented that my inflammation was very high and what you are saying is that it’s really not so high. Is there some way that I could email you the report and you can see if maybe I am reading it incorrectly? Is there a private message function here that will allow me to send it to you off line from my personal inbox? Would love to have some help in translating the blood results into language I can understand.
Turns out, in order for her to administer the Synvisc, they need approval from my insurance and it takes 2 weeks for it to arrive once approved. That’s a very long time to wait and manage with tramadol- the pain is pretty intense. I have been careful to only take the tramadol once a day at most but am thinking a second pill may be necessary, unfortunately. Tylonol is not doing the trick and my knees are really very painful. Is this something I can expect to subside once the protocol starts working? Would Planquenil help?
Thanks also for the advice on the planquenil – will keep it in mind if needed and happy to hear that it’s not as scary as I had been thinking although your side effects do not sound like fun. The Methotraxate still scares the crap out of me- have no intention of taking that unless there are no other options. Would planquenil be in addition or instead of the Celebrex?
Sauna sounds fantastic. Not sure this is something I can afford at the moment = and I live in a small condo. I do however, have a jacuzzi tub (very deep) and will start to use it more often with salts. It’s a catch 22- feels wonderful to be in it but getting out is not easy with my knees hurting so much and my hands feeling so weak. But I have a feeling the salts and heat would be good for detox and may help at night. I will read your personal progress thread for other detox ideas so that I can hopefully, start sleeping through the night without Xanax which is what I resort to after 2 nights of interruption. Between the Xanax and the tramadol I am concerned about becoming an addict!
Just came in from a long swim- feeling very blessed to have the pool downstairs and to be able to do so many laps. It’s too hot to walk now (am in Miami where it’s almost as hot as the NorthEast) so swimming is the only real exercise I can get and it really does feel great. I may start doing laps twice a day – sounds ambitious but given how great I feel afterwards it may be worth trying a few days a week. Maybe for a shorter period in the morning.
Thank you again- and please do let me know if there’s some way to send you my blood work report- would really appreciate having a better understanding so that I can feel more educated!
HI Karen,
@karyninMiami wrote:
Still confused about the blood work since the second rheummy commented that my inflammation was very high and what you are saying is that it’s really not so high. Is there some way that I could email you the report and you can see if maybe I am reading it incorrectly? Is there a private message function here that will allow me to send it to you off line from my personal inbox? Would love to have some help in translating the blood results into language I can understand.
Well, that is strange, because the CRP is really not that high and not sure why your rheumy would say that…your SED is also really low and in normal range. I’ve replied to your email, Karyn, so hopefully you’ll receive that okay.
Turns out, in order for her to administer the Synvisc, they need approval from my insurance and it takes 2 weeks for it to arrive once approved. That’s a very long time to wait and manage with tramadol- the pain is pretty intense.
Did your doc suggest cortisone shots for your knees in the meantime? These are not something anyone wants to do often, but Brown did use a little cortisone into very inflamed joints to reduce the inflammatory barrier and enable greater penetration of the abx into the joint capsule.
I have been careful to only take the tramadol once a day at most but am thinking a second pill may be necessary, unfortunately. Tylonol is not doing the trick and my knees are really very painful. Is this something I can expect to subside once the protocol starts working? Would Planquenil help?
Yes, care needs to be taken with some of these NSAIDs, which can cause stomach and intestinal bleeding that can lead to anemia.
Plaquenil should help with inflammation, but it can take several months or longer to reach full effect. I started noticing relief within a couple weeks.
Thanks also for the advice on the planquenil – will keep it in mind if needed and happy to hear that it’s not as scary as I had been thinking although your side effects do not sound like fun. The Methotraxate still scares the crap out of me- have no intention of taking that unless there are no other options. Would planquenil be in addition or instead of the Celebrex?
Well, not really advice, as I’m just a patient – just shared personal experience. 😉 Actually, I find plaquenil to be a lot less scary than being on some of the heavy-hitting pain meds. Plaquenil can also be used for lupus patients and is one of the few DMARDs that is recommended for this sub-set of rheumatics. Methotrexate is not a good idea for lupus, on the other hand. Are you intending on adding Celebrex to Tramadol? As an opiate type drug, Tramadol can cause dependence and withdrawal symptoms. Did your rheumy make you aware of this? It can also cause severe constipation, which will inhibit the passage of toxins from the gut, so try to be sure not to get constipated, if you can. Only speculation on my part, but could this be adding to the issues of increased pain at night when the liver is dumping toxins into the gut?
http://en.wikipedia.org/wiki/Tramadol
Sauna sounds fantastic. Not sure this is something I can afford at the moment = and I live in a small condo. I do however, have a jacuzzi tub (very deep) and will start to use it more often with salts. It’s a catch 22- feels wonderful to be in it but getting out is not easy with my knees hurting so much and my hands feeling so weak. But I have a feeling the salts and heat would be good for detox and may help at night. I will read your personal progress thread for other detox ideas so that I can hopefully, start sleeping through the night without Xanax which is what I resort to after 2 nights of interruption. Between the Xanax and the tramadol I am concerned about becoming an addict!
Yes, I can understand your concerns, Karyn. There may be better solutions for pain relief…including plaquenil. Just be careful when you come off the tramadol, as rebound is likely and may need to be weaned slowly and under supervision.
Btw, there are portable FIR sauna models one can purchase from around $200 and up…e.g. tent models that can pack away under a bed after use.
Just came in from a long swim- feeling very blessed to have the pool downstairs and to be able to do so many laps. It’s too hot to walk now (am in Miami where it’s almost as hot as the NorthEast) so swimming is the only real exercise I can get and it really does feel great. I may start doing laps twice a day – sounds ambitious but given how great I feel afterwards it may be worth trying a few days a week. Maybe for a shorter period in the morning.
You are blessed to be living in sunny Florida and in winter-time I will be very envious! I’m a sun-lover and the cold CT winters go on a long time…not as bad as when we lived in Canada, but nowhere near as nice as mild Floridian winters! It is hotter up here right now that in FL, though! Crazy hot and humid!
@karyninMiami wrote:
I am taking 100mg of minocycline twice a day. I take my first one upon waking up (along with my bio-identical thyroid meds) and the second one at bedtime which was what my rheummy said is the usual dose (she was not happy about it as I mentioned previously).
For someone with RA-like symptoms just starting on minocycline, your dose is almost certainly too high. If you remain on that dose you will likely find out what the consequences are in about two weeks. Although the dose you were prescribed is commonly prescribed by rheumatologists, the reason is not because it is the optimal dose, but because many rheumatologists have a low opinion of the treatment and (apparently) make little or no effort to learn how to properly administer it.
@karyninMiami wrote:
Also have gone gluten and dairy free and eat no meat ( but I do eat fish).
Excellent! Consider also eliminating nightshade vegetables from your diet. See: The “No Nightshades” Diet
Phil
"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein
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