I’m scared and need advice….Please help!

[jlynne]

I have not been officially diagnosed for RA but my labs sure indicate that I have it. I got them back last week and have been reading and reading until my eyes hurt. I ordered and just received today Dr. Scammels book and have drastically changed the way I eat. I basically cut out all junk, sugar, wheat and dairy. I have to say my hands are not as swollen and I haven’t had the horrid pain in my wrists since I did this.

Here’s my dilemma: From everything I have read on here, I know that minocycline seems the way I want to go. I went to my doctor this morning and told her that I wanted a prescription for mino and why. I gave her printouts from this website. She wrote me a prescription for 2 months worth of minocycline 100mg to be taken 2 times per day. I also made an appointment with a doctor who is familiar with AP. My appt isn’t until January 25th. The lady who scheduled my appointment said to come prepared for a full physical and blood work would be taken.

After that, I read the side effects of the minocycline and am scared out of my wits to take it. Also I am not sure if I should begin to take it because of the bloodwork to be taken on January 25th. I don’t want to skew the results as I have read that the bloodwork tends to get worse if one is herxing.

Is this normal to feel this way or am I being a big chicken? I’m just so unsure and I really want to be doing the right thing concerning this.

Should I wait for my appointment or should I start the minocycline? I know it’s really up to me to decide but I really need some input from people with experience with this protocol.

[chrysalis]

Hi I know that you will get some great help from the experienced members of this forum soon and I remember that scared feeling so well. Sometimes the doctors and specialist give you such a fear based outlook that it sounds like if you don’t decide to take Methotrexate today like a sensible person you are going to go down in screaming agony within days. I took two weeks to decide against it even though I was equally scared of the AP. What helped me was how little sense it made to suppress the immune system(the good guy in the equation), anything had to be better than that. My physical state at the time was varied, I would wake up in the night with screaming pain in the hands, get up in the morning and find I could not walk,get ready for work and find my elbow had seized and could not drive. I did all the natural remedies and diet for about 8 months before I took the information from this site to my specialist.
You are not a big chicken just vulnerable and still doing all the right things, reading the book and taking control and doing everything you can to help yourself. It is a scarey disease but manageable with AP. I took it as soon as I could get hold of it and do not regret it at all. On one bad day I was crying after a shower trying to figure out how to dry myself when neither of my arms would work that was over a year ago and I have not had an experience like that since. Just wanted to reassure you that you are doing great and being scared is a perfectly rational response to your body becoming alien to you.
Best wishes to you chrysalis

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[Cheryl F]

Jlynne:

I don’t really have an answer to your question of should you wait or should you start the minocycline. It is just a personal choice. I know some doctors who really want the bloodwork done prior to beginning the therapy, but I know that they will “deal” with it if the patient comes in after they began the minocycline. It happens most of the time. Because AP doctors are few and far between, it is common for the patient to have obtained an RX from another non-AP doctor and to have begun taking the medicine. I agree it is not optimal for the lab work, but, if it is gonna work, I personally would want to get started.

I have two family members who have done AP therapy successfully reaching remission relatively quickly. My daughter has systemic scleroderma, we had to wait about two weeks for her first appointment with an AP doctor. Those two weeks drove me nuts and I was trying everything I could to get another doctor to prescribe. But alas, I had to wait. She started seeing improvements within a few days, so while I guess two weeks is not too long to wait, I wish we would not have lost that time. But the final outcome was good, she has been in stable remission for over five years, the doctor that diagnosed her said she only had about 2 years left to live based on the scleroderma lung involvment.

A couple years after my daughter began AP, my husband began to get RA symptoms, it happened very quickly, but this time I did have access to the minocycline prior to his first appointment. The AP rheumy that we use was booked out six weeks and there was no way I was going to let my husband continue that way for another six weeks. As a self employed businessman that could have meant financial devastation for our family. So he started minocycline at about day 5 from the onset of his symptoms. He stayed stable with maybe a tiny bit of improvement for the six week wait to see the AP doc rheumy. The AP doctor added two other antibiotics (Flagyl and Zith) and my hubby was symptom free within a month. (results not typical).

So, I am a very impatient person, and this way my personal decision and my reasons for my decision. I hope reading my story helps you to decide what you want to do.

Regarding the side effects. I have been a member of this forum for over five years now and I do know some people who have experienced the side effects of minocycline. But I also know, that barring minocycline induced lupus, all of the side effects are quite manageable. If a patient faces MIL, that too is manageable as the side effects abate after the drug is discontinued and other antibiotics can be used in place of the minocycline. Our RBF volunteer Maz has personal experience with this situation and she can share her experience if a patient faces that situation. My best advice regarding the potential side effects is to be confident that it is completely manageable and that you can get help and support from your physician and from your fellow patients who have “been there” IF and WHEN the situation arises. Face the battle you have in front of you now, deal with others when they arise.

This forum and the people here can help you to have confidence in your own decisions, they can share what they have used and what has worked.

Good luck!

Cheryl

[DragonSlayer]

Hi, jlynne:

I have to echo some of the other responses here, but also point out that very few adverse reactions have happened with these drugs, however, even anaphylaxis can occur in a sensitive person. You can conduct allergy testing on Your own; it is a simple patch test where the skin is disturbed. The wrong drug at the wrong time can be devastating. I saw some episode where a woman took one dose of tetracycline and all her skin peeled off! It CAN happen but just usually does not, but I also believe in the personal intuition (my wife has this something fierce), so better to be cautious with drugs You have not taken before and as a minimum pre-test for allergic reaction.

I have AS which at one time was severe enough that I did not care about drug side effects or extreme physical risks; again it is a matter of choices and risk versus reward.

HEALTH,
John

[Author]

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