1st appointment….I need advice!

[jlynne]

So I had my first Rheumatologist appointment today. I cried the whole way home.

I got my official diagnosis of RA yesterday. She poked and prodded all my joints. We talked about the various treatments. I suggested antibiotic therapy. She said she had heard of it but didn’t believe it would work. She suggested MTX and pred. I said no to both. After some more talking, she was willing to prescribe me the mino only with use of MTX. I feel like I am being made to use the MTX. I do not have any of my lab numbers. New blood work was drawn yesterday along with a tests for mycroplasma and lymes. I’m not sure how long it will be before I get these results.

I am not able to use the MTX until my bloodwork comes back clearing me of hepatitis. Apparently if you have hepatitis you can’t use MTX. Which is fine with me…I really don’t want to start the injections.

I have to go get my prescriptions today. I’m not feeling well at all today. This neck pain has reached a higher level and now my right foot is flaring. Is this due to the stress of yesterday or just RA rearing its ugly head coaxing me to use the MTX? I’ve been careful of my diet so I know it’s nothing I have eaten.

I absolutely hate the thought of putting MTX in my body. I need help…I need advice….I need to know what you would do in my situation. I need someone else’s point of view so I can make a decision. Will it help or hinder my progress? I’m so confused, so torn, and already fed up with having RA!

[Parisa]

Jlynne,

When you say you got your prescription, you meant a prescription for minocycline? Well, you’re on your way. How much did she give you? Any refills? You don’t have to do methotrexate. Now that you know her stance and that you don’t agree with it, you can broaden your search to find someone whose philosophy and treatment protocol meshes more with what you want. Sometimes it takes a while to find the right practitioner(s).

[Krys]

You can take Mino and herbal anti-inflammatories.
Curcumin (Turmeric extract) is quite potent. So are plain enzymes, systemic enzymes even more so. Employing various detoxifying measures will greatly help!
There have been many threads in the past devoted to detox and inflammation. If you search the forum (the search window above General Discussion) a lot will come up. You may have to go many posts back, some great posts and threads were posted a while ago.
I hope you find many solutions that will resonate with you and that will greatly help you. Never give up! There are always solutions, we only need to find them and employ them.
Speedy and smooth recovery, Krys

[mary77]

I am sorry you are feeling so poorly. The stress of the illness plus the stress of being “pushed” to take MTX is not helping you. Do not forget that you have every right to choose your path and your doctor.

My personal experience with MTX was a dramatic increase in pain and arthritis. Others seem to benefit with its’ use. We are all different in our responses to meds, so it does take time to find an appropriate protocol.

I hope you are able to read as much as you can on this forum. There is a lot of information and some very good advice here, as well as hope.

I wish you the best in this journey…

Mary

[jlynne]

Parisa, yes she did write the script for minocycline 100 mg taken twice per day, a 90 day supply, with one refill. They are capsules. I have read on here where it is better to pulse dose and that 100mg twice per day may be too strong at first so I will go slow and do 1 capsule at night on M-W-F with the first dose to be taken tonight.

I have decided not to take the MTX….at least for now. I will give the mino a chance to work and make a decision regarding MTX at my next appt which is March 9th.

I do take tumeric, ginger, and aleve. I have changed to an anti-inflammatory diet. I have been feeling great up until a couple of weeks ago when this neck pain started. Interestingly, my rheumy said that RA can affect any joint, muscle in the body and my neck pain is certainly the cause of RA. I believe it because my neck feels exactly the way my wrist does when it is flaring.

She also said that she will only give me a 6 month supply of mino because if I haven’t seen any results by then it will not work for my RA. My hope is that I will respond well and prove to her that mino works and she may be more linient with the refills. I like my rheumy, she is very down to earth and easy to talk to, so I will stick with her for now and see how it goes. However if I have lymes, I will definitely be looking for an llmd.

[Parisa]

Jlynne,

Sounds like you have a plan in place and are feeling a little better now that the dust is settling from your first appointment. Medical appointments can be so draining when there is something serious going on in the body. Hopefully, you will be a fast responder to the mino. Having cleaned up your diet will definitely help you alot.

[marg]

HI jllynne,
Stress plays a big part in increasing symptoms, in my experience with my adult daughter. it’s easy to say try to avoid stress, not easy to do!! Try to be good to yourself, do relaxing kinds of things, take time for yourself.

I’m glad you will not start on the large prescribed dose of minocin. Starting lower and pulsing seems to help quite a few patients. About the MTX- I’m not saying take it or don’t, but my daughter took it for 3 months before she got her minocin and it did help reduce the severe inflammation she had. After sorting out her doasage of minocin, she had amazing good results, much more quickly than is typical. We have wondered if the short course of MTX actually helped the minocin reach the cells and be effective.

Good luck as you start off on your journey!

[PhilC]

Hi,

Taking methotrexate (MTX) with minocycline increases the risk of MTX toxicity. Because of that, more careful monitoring is advisable, and reducing the dose of MTX may be necessary.

Keep in mind that the antibiotic protocol doesn’t mean using only antibiotics. Dr. Brown also used NSAIDs and even low-dose prednisone (less than 5 mg/day). Perhaps you could talk your doctor into giving you a prescription for 4 mg of prednisone and a prescription for an NSAID– preferably celecoxib (Celebrex), etodolac (Lodine) or nabumetone (Relafen). I should point out that celecoxib is still under patent, and therefore may be expensive. If you don’t have good prescription coverage you may want to try one of the other NSAIDs listed instead.

Note: People who are allergic to sulfa (sulfonamide) drugs should avoid taking celecoxib.

I noticed that you are taking Aleve. That’s naproxen sodium. Although it will work, it tends to be hard on the stomach.

Don’t let the potential side effects of prednisone scare you. Many people (understandably) don’t want to take prednisone, but there is a big difference between low-dose prednisone taken on a short-term basis, or ocassionally (as needed), and higher doses taken for an extended period of time.

Be careful about combining herbs with drugs. Many act as blood thinners and may cause problems when taken with drugs that also have blood thinning properties. NSAIDs fall into that category.

Phil

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

[fastspinW]

Jlynne,

Just a thought, but have you checked to see if there is an experienced AP doc in your area? I don’t know about you but given a choice I would prefer to work with someone who has used the AP approach before. This, sadly, is not always possible but there are docs around the country with the sort of experience that will make you introduction to AP a great deal easier.You don’t say where you live but if you would like a list of experienced AP docs to check out just ask and Maz or one of the other volunteers will probably be happy to send you a list.

All best,
Winston

[sandy]

“Taking methotrexate (MTX) with minocycline increases the risk of MTX toxicity. Because of that, more careful monitoring is advisable, and reducing the dose of MTX may be necessary. (this is alarming to me as most of the RA docs have been pushing me to try LD mtx with my minocin!)

Keep in mind that the antibiotic protocol doesn’t mean using only antibiotics. Dr. Brown also used NSAIDs and even low-dose prednisone (less than 5 mg/day). Perhaps you could talk your doctor into giving you a prescription for 4 mg of prednisone and a prescription for an NSAID– preferably celecoxib (Celebrex), etodolac (Lodine) or nabumetone (Relafen). I should point out that celecoxib is still under patent, and therefore may be expensive. If you don’t have good prescription coverage you may want to try one of the other NSAIDs listed instead.”

Phil, just seeking a clarification as to your knowledge of nsaids. I heard not so good things about celebrex, heart attacks etc. You had once mentioned flurbiprofen as an anti-inflammatory and I wondered what you’ve heard of this. I’m also wanting to consider what else to add to mino that could help with inflammation and less joint destruction.

[PhilC]

Hi Sandy,
@sandy wrote:

Phil, just seeking a clarification as to your knowledge of nsaids. I heard not so good things about celebrex, heart attacks etc. You had once mentioned flurbiprofen as an anti-inflammatory and I wondered what you’ve heard of this. I’m also wanting to consider what else to add to mino that could help with inflammation and less joint destruction.

Sorry for the delay in getting back to you. I did not see your message until now.

As for celecoxib (Celebrex), I have seen research indicating an increased risk of myocardial infarction
(i.e., a heart attack) when taking it, and I have seen research indicating no increased risk of myocardial infarction, so the truth is not so clear.

As for flurbiprofen, I only mentioned it because it is the NSAID that was used in one specific animal study. Why the researchers chose it is unknown. As far as I know, there is no reason to prefer flurbiprofen over any other NSAID, especially since it is not one of the safer NSAIDs.

I have been on a quest to find the “best” NSAIDs. As of this moment, my preference is for nabumetone since it appears to be one of the safest NSAIDs.

Phil

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

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