Major setback – please help!

[rawarrior]

Hello all! I hope you’re all doing well. Unfortunately, I am experiencing some major setbacks that have me concerned I should consider stronger medications. I started AP in 2016 and after a year on AP began doing really well with only minor flares here and there until this year. It got worse right around Memorial Day and hasn’t let up since. In the past, my flares would only target one area at a time and would migrate from joint to joint on a daily basis with the intensity of the pain being very extreme. Nothing would even touch the pain and the only thing that would even remotely help would be to keep an ice pack on the flare for hours at a time. Although, my pain hasn’t been as severe as in the past, it has increased in intensity to where I’ve had to use ice packs again. Another thing that has changed is that the pain tends to hang around in the same joint for longer periods of time. Currently my left wrist and a few joints in my fingers in both hands have been in a flare for well over a week and my right wrist in a flare for the last several days. I’ve had to keep both wrists in a brace day and night. Yesterday, on top of the ongoing wrist & finger pain, my shoulder is starting to act up. My quality of life is quickly deteriorating again and the sad thing is I was just feeling comfortable with trying to go back to work by taking an online course and passing my state exam for real estate this past May. I’m scared to even try to put my new education to use pursue a new career until things settle back down. Does anyone have any recommendation on what I should do? I started an evening pulse dose of antibiotics MWF back in 2018 when I began experiencing some mild but slightly increased issues but so far it doesn’t seem to be helping. Should I try upping my antibiotics to every morning and night to see if that helps? Or should I take a methylprednizone pack for a week that my Dr has prescribed for me in the event something like this should happen to see if it will knock it out? Or should I look into taking stronger RA drugs? I know my Dr will recommend trying methotrexate next which I really don’t want to try but unfortunately that is her next step. I do have to say that back in April I tried CBD oil for some back issues that I have been dealing with for several years and was pleased with how well it helped with it so I continued to take it in hopes it would help with my mild RA pains. That was right before my flares really started to ramp up so I wondered if there’s a connection so I stopped taking CBD. I read on here where someone mentioned that CBD can cause patients to metabolize their medications faster so that’s why I stopped, however, my flares are continuing. I apologize for such a long post but I wanted to give as much detail as possible so that others can chime in about other possibilities and advice that I have yet to consider or think of. I will be so grateful for any and all input. TIA

Side note:I checked to see if my pharmacy changed manufacturers for my Minocycline already and they have not. I have been gluten and dairy free since 2015

Diagnosed with:
- Hypothyroidism in 2001
- Hashimoto’s in 2011
- RA in 2013
- Adrenal Fatigue 2015
- Secondary Raynaud’s & Sjogern’s
Lab results show past Mycoplasma, Lyme, EBV, Coxsackie infections. Also have 2 heterozygous MTHFR gene mutations
Current Medication:
- NP Thyroid 120mg/day
- Sulfasalazine - 2000mg/day for last 3yrs
- Minocycline - 100mg 2x a day
- magnesium - 500mg in evenings
- probiotics - taken daily (amount varies)
- Ibuprofen - 800mg as needed
- Celebrex - 200mg (

[Pinkmoth]

hi RAwarrior,

You and I are in a very similar situation – having done well on AP for our first year or so, well enough to start setting big life goals again like finishing school, then relapsing early this year, down to the thyroid issues/EBV/Coxsackie/myco/Lyme infections.

I might have been the member whose post you read regarding CBD, because I was taking it when I relapsed and subsequently did some research about how it may interact with other drugs.

which mino generic are you on, just out of curiosity?

I wish I had an answer for you. my strategy has been adding back in azithromycin, doing a 5-day round of clindamycin IVs, and trying to get my gut health straightened out. i have an h pylori infection that may be driving some of my gut issues but Its resistant to clarithryomycin/amox, which leaves me the option of flagyl and I have heard nothing but horror stories about that drug…

I do think ultimately more/different antibiotics might provide the breakthroughs we need, but figuring out which ones to use is challenging.

do you have a good AP doc or LLMD?

after trying to figure all this stuff out myself and failing, I started seeing an AP doc on the east coast and I have an apt with Dr F in Cali at the end of July.

Autoimmune: ANA positive speckled. Probable MCTD with SD overlap. Hashimoto's. Possible Erlos Danlos. Mold Illness.
Infections: Bartonella, toxoplasmosis, mycoplasma, EBV
Meds: minocycline (Zydus generic) 100mg 1x daily,
Supps: digestive enzymes, Monolaurin, Betaine hydrochloric acid, iron, quercetin, biocidin

[rawarrior]

Thank you for your response, Pinkmoth. I’m sorry you’re having to deal with this as well. The manufacturer for my Minocycline is Torrent. I just see a regular rheumatologist for now but she has been amazing and supportive of my decision to try AP even though that is not her typical form of treatment. So that being said she will more than likely not have much of a solution for my setback other than to try stronger meds.

Unfortunately, I live in the south where most dr’s believe that it’s impossible to get Lyme disease from a tick in this area so there are no LLMD’s in the state of GA. There are very few Dr’s in my state that are even on the list of using AP. Only one, in fact, that is close enough to me but they don’t accept insurance so I have to navigate through this on my own since I don’t bring in an income.
I was going to a holistic dr there for a while that was helping but it got to be quite costly, so I tried to go back to work to cover the costs but the stress of the environment I was in caused me a huge setback. I’m stuck in a rut. Can’t get well enough to work unless I pay big bucks for a good dr, can’t afford a good dr unless I go back to work.
How did you find out it was your thyroid and other infections that caused you to relapse? I’ve often wondered if it was actually due to my thyroid or other hormones that have caused a spike in my RA activity.

Diagnosed with:
- Hypothyroidism in 2001
- Hashimoto’s in 2011
- RA in 2013
- Adrenal Fatigue 2015
- Secondary Raynaud’s & Sjogern’s
Lab results show past Mycoplasma, Lyme, EBV, Coxsackie infections. Also have 2 heterozygous MTHFR gene mutations
Current Medication:
- NP Thyroid 120mg/day
- Sulfasalazine - 2000mg/day for last 3yrs
- Minocycline - 100mg 2x a day
- magnesium - 500mg in evenings
- probiotics - taken daily (amount varies)
- Ibuprofen - 800mg as needed
- Celebrex - 200mg (

[PhilC]

When this kind of thing happens to me, I ask myself this question: “What has changed?” In other words, what’s different, or what I am doing now that I wasn’t doing previously. Reflecting on that question often (eventually) provides me with an answer.

Once, years ago, my knees started bothering me, which seemed rather odd because my joints hadn’t really bothered me much for a long time. Although it took me some time to figure it out, I eventually realized that the reason my knees were bothering was because I had switched to buying a store brand of mayonnaise. Shortly after I switched back to the name brand mayonnaise I’d been buying previously, my knees stopped bothering me. That store brand of mayonnaise contains paprika (a nightshade), and the name brand mayonnaise does not.

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[niteowl]

Just curious if you have seasonal allergies?

– Niteowl

Diagnosed with RA in 2012
Fifth Disease in '03
Lyme? in 2000?
Had radioactive ablation of hyperactive thyroid in 1997
autoimmune thrombocytopenia resolved
Anemia resolved with treatment of RA with Minocycline
Blood type: B neg

Meds:
Minocycline 50mg once a week
Levothyroxine .88mg
Liothyronine 5mg
Methotrexate 20 mg once a week

Folic acid
B12
B6
Vit D
Biotin
Biosil
Cbd balm
Flexaril as needed
Aspirin
Benedryl
Ventolin inhaler
Lactibiane probiotic

[rawarrior]

Thank you for responding, PhilC and Niteowl. I do my best to try to think of things that maybe I have done differently that could be causing the new onset of flares, but it can be quite challenging. Living in GA, I have to say I am very much fortunate that I do not suffer from seasonal allergies like most do around here. Perhaps because I have an overactive immune system, the pollen doesn’t stand a chance? Hearing from all of you helps me to navigate through the possibilities much better. Currently, this is what I’m thinking might be playing a factor:

During the time that I was doing my best with my RA on the AP, I was taking the thyroid rx called Nature-throid. After trying several different rx’s for my thyroid over the last 2 decades, this rx has helped me the most. However, anyone else who has been taking Nature-throid knows that over the last year or so, the company who makes this rx has had difficulties with their production which has caused a major back order. None of the pharmacies in my area could get their hands on any. Due to that my Dr had to switch me to NP Thyroid (which is generic for Armour) and I just haven’t felt as great on it ever since. Since they aren’t dosed exactly the same I’ve had to take a different amount of thyroid meds than usual. I feel that maybe over the course of this past year it has slowly caused these setbacks in my RA to increase…or at least been a contributing factor. On top of that I had recently been trying CBD oil which I’ve since learned can mess with how you metabolize your medicines so I stoped that for now. I just don’t know how long it takes after for your body to re-regulate and go back to normal. Surely it would’ve by now?
I also noticed recently I had accidentally taken a thyroid Med out of an old bottle that was almost half the dosage of what I’m suppose to be taking. How many times did I accidentally take that dose, I don’t know…but it was only a few times at the most & could’ve been enough to cause the intense spike of pain I’ve been dealing with on top of the increased pain I’ve been having over the last year.
One other thing that has changed in the last year was that I had successfully weaned off my long term use of 5mg’s of prednisone by last Oct. It took 8months to wean off of that small amount, but I was very happy I did. I’d hate to think that I may have to go back on it, but that may just be the case. My Dr said that she’d rather me try Methotrexate than to have me on Predinsone again though because she feels it is safer. I do have to note that I broke down and took my emergency methylpredisolone pack this week to hopefully stop the flares. It was starting to move to & affect my shoulder and I just needed it to come to a hault. My RA will either go back to sleep for me after I finish the round of prednisone or come back with a vengeance but I had to take that chance. We shall see.
I apologize for the long explanations but having all of you reply & message me with your thoughts and questions that I may have not thought of yet really and truly helps me think of all the possibilities. I feel that the more detailed I can be with my responses may just help someone else. Thanks everyone!

Diagnosed with:
- Hypothyroidism in 2001
- Hashimoto’s in 2011
- RA in 2013
- Adrenal Fatigue 2015
- Secondary Raynaud’s & Sjogern’s
Lab results show past Mycoplasma, Lyme, EBV, Coxsackie infections. Also have 2 heterozygous MTHFR gene mutations
Current Medication:
- NP Thyroid 120mg/day
- Sulfasalazine - 2000mg/day for last 3yrs
- Minocycline - 100mg 2x a day
- magnesium - 500mg in evenings
- probiotics - taken daily (amount varies)
- Ibuprofen - 800mg as needed
- Celebrex - 200mg (

[Pinkmoth]

I was on naturethroid all last year as well and that’s when I had my longest stretch of feeling good. I was still on it though when I started to decline in Jan. a lot of other people on naturethroid reported that it wasn’t working for them anymore at the end of 2018. the theory is that due to shortages of source material for the drug, they changed the source or formula. not sure what but SOMETHING about it changed because so many peoples thyroid labs all of a sudden went out of whack on the same dose. happened to me too.
switched to NP thyroid as well but found I was now reacting poorly to thyroid meds (hyper symptoms) possibly because my cortisol is so high (possibly due to infections taking hold again) or because my iron is low.
I just don’t know.
have you tried armour thyroid?

Autoimmune: ANA positive speckled. Probable MCTD with SD overlap. Hashimoto's. Possible Erlos Danlos. Mold Illness.
Infections: Bartonella, toxoplasmosis, mycoplasma, EBV
Meds: minocycline (Zydus generic) 100mg 1x daily,
Supps: digestive enzymes, Monolaurin, Betaine hydrochloric acid, iron, quercetin, biocidin

[Maz]

Hi rawarrior,

rawarrior wrote:

Unfortunately, I live in the south where most dr’s believe that it’s impossible to get Lyme disease from a tick in this area so there are no LLMD’s in the state of GA. There are very few Dr’s in my state that are even on the list of using AP. Only one, in fact, that is close enough to me but they don’t accept insurance so I have to navigate through this on my own since I don’t bring in an income.
.

Don’t know if this will help but there are a couple of very good LLMD options now in GA! If you can’t access them on the automated doc search system, I’d be happy to send them to you as potential options. Ticks are nature’s dirty needles and pass more than Lyme – I was surprised recently to find I’ve had bartonella henselae, which is highly inflammatory snd correlated in recent scientific literature with rheumatic disease. Where one abx doesn’t work, there are alternatives that may help, so in this type of situation, seeing a LLMD for a comprehensive infection workup can provide insight on how to proceed with the therapy when roadblocks are hit.

Do you have recent thyroid labs to share? Do you get labs drawn before taking your thyroid meds?

Has your rheumy screened you for DILE?

[PhilC]

rawarrior wrote:

I started an evening pulse dose of antibiotics MWF back in 2018 when I began experiencing some mild but slightly increased issues but so far it doesn’t seem to be helping. Should I try upping my antibiotics to every morning and night to see if that helps?

I think you should seriously consider doing exactly that. What dose of mino did your rheumatologist prescribe? Most rheumatologists, it seems, prescribe the full, standard dose (i.e., 100 mg bid). Ask your doctor if you’re not sure.

Increasing your dose of mino makes more sense than adding methotrexate. If taking the normal, full dose of mino helps you avoid going on methotrexate, then it seems like a “no brainer” to me.

I agree with Maz that getting your rheumy to try to rule out the possibility of DILE is a good idea.

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[rawarrior]

Thank you Pinkmoth, Maz, & PhilC.

Pinkmoth:
That’s disappointing to hear that Naturethroid doesn’t seem to work as well as it used to. From what I understand, NP Thyroid is the generic for Armour. I was prescribed Armour originally but it was going to be more expensive to go that route so I opted for generic. Something that I find strange about NP Thyroid though, it smells absolutely horrendous! I’ve always just assumed that was normal for that rx, but maybe not?

Maz:
Wow, I don’t know that I ever would’ve thought about DILE being a possibility. After reading up on it a little more I learned that both Sulfasalazine & Mino (although both considered a “low” probability) can cause DILE. Perhaps the combination of taking both increases that probability. I’ve noticed that my Raynaud’s had gotten really bad this past winter which is another symptom as well. That being said it would be a good idea for me to rule it out with my Dr. If that were the cause, I’ve read the solution would be to stop taking the rx causing the DILE. I’m ok with switching the sulfa rx to something like hydroxychloriquine as I have taken it in the past and have done well on it, but how does one move forward with the mino? Would I have to stop taking it for a while, or would reducing my mino dose work, or would I have to switch to a different antibiotic until the DILE resolves itself?
Thank you for letting me know about the list of LLMD’s in GA. I have received the list and will look into this. As for my thyroid labs, I can share my results, but I’m not sure how to do that. Would I send through a private message?

PhilC:
Each Minocycline dose is 100mg. So I take one every morning & pulsed another dose on MWF in the evening. I was under the impression that the max dose of Mino is 200mg a day. I agree that it would make since to increase Mino to 2x every day before trying Methotrexate, but I also agree with both you and Maz that I should probably rule out DILE first.

Thanks again for all your input!

Diagnosed with:
- Hypothyroidism in 2001
- Hashimoto’s in 2011
- RA in 2013
- Adrenal Fatigue 2015
- Secondary Raynaud’s & Sjogern’s
Lab results show past Mycoplasma, Lyme, EBV, Coxsackie infections. Also have 2 heterozygous MTHFR gene mutations
Current Medication:
- NP Thyroid 120mg/day
- Sulfasalazine - 2000mg/day for last 3yrs
- Minocycline - 100mg 2x a day
- magnesium - 500mg in evenings
- probiotics - taken daily (amount varies)
- Ibuprofen - 800mg as needed
- Celebrex - 200mg (

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