What negatives have people experienced?

[littlerocky1]

Hi all

My mom will be starting AP therapy with Dr. S at the end of January and is very excited. She was wondering what negative side effects people have experienced. If you all could respond and what you did,we would appreciate it!!

Thanks and Happy New Year!

Little rocky

RBFV Edit to remove AP Physician’s full name as per forum guidelines. Thanks for your understanding. 🙂

[fastspinW]

Dear Little Rocky,

Just a thought, but I’d shy away from focusing too much on the “possible” negative side effects of AP. Years ago whenever my doctor would prescribe a new medication I’d whip out my copy of the Physcians Desk Reference and look up the possible side effects of the drug he’d prescribed. Over time I noticed that almost without fail I would “experience” at least one or two of these side effects. Realizing only too well the power of the human mind I began to wonder whether or not I’d have developed these side effects had I not known of their existence. A researcher by nature I decided I’d conduct an experiment and thus stopped looking up the new drug until I’d been using it for awhile. Lo and behold, I remained blissfully side effect free for some months.

This isn’t in any way to indicate that you and your Mom not play an active role in the treatment of her illness. Far from it, the more the both of you know about AP the higher the chances that you will experience success! At the same time, it’s often better to focus, at least initially on the positive aspects of a plan of action.

In that vein I will relate to you a bit of my own personal experience with AP. Eight years ago when I first visited Dr. T in Boston to inquire about AP I had been suffering from RA for more than 35 years. While there were times when I did not suffer terrible pain every single day for most of that time I was in pain of some sort almost 100% of the time. Hands, knees, wrists, forearms, and shoulders alternately or sometimes simultaneously left me with at least a very lessened quality of life. On the day that I took the train into Boston to visit Dr. T, however, the pain was so bad that I was almost unable to walk the 3-4 blocks to his office. And it had been this bad for several months.

After examining me Dr. T told my wife and I that he felt confident that AP would help but that it might well take 6 months or a year before it’s full benefit was experienced.

After my return to Maine I began taking Minocin and…drum roll please…twenty-six days later I was riding my mountain bike 10-12 miles a day! From that point until about 3 months ago I was virtually symptom free. At that point I began experiencing some of the old stiffness and pain and I’m currently in the process of fine tuning my meds in hopes of obtaining remission once again.

While I don’t know Dr.S if he’s who I think he is you have the added advantage of being in the care of a very skilled and experienced AP doctor. My guess is that your Mom is about to embark upon a road she will never cease to celebrate!

All my best,
Winston

[SS]

Hi Winston:

I am on minocin 100mg x 1 on alterative days for the past 10 years. I was also going to Dr. T. I did feel good but not without pain.

What dose were you taking for a remission and how long were you on Minocin?

When you are experiencing old stiffness and pain how do you tune the medication and to what dose? Please let me know .

Thanks

Regards
ss

[fastspinW]

Dear SS,

This is really kind of off topic so I’ll be brief. I was taking 100mg x2 x7 for around 6 years and then had to switch off Minocin because of muscle cramps. Dr. T “knew” it wasn’t Minocin giving me the cramps but as soon as I stopped taking it the cramps vanished. And as soon as I began taking it again they came back. I’ve spent 33 years as a professional naturalist/eagle researcher and long ago accepted the fact that “theory” must always give way to “result” so I am confident that it was Minocin causing the cramps although nobody seems to know why.

Since stopping Minocin I’ve been on Doxy 100mg x 2 x7 initially with good results. Alas Doxy really sensitizes me to the sun and I am out in the sun 7 days a week all summer long due to my job as a boat captain. So for two summers I cut back to 100×2 on MWF. the first time this worked O’K, the second it did not. When I went back on the 2 x 7 routine this fall I experienced a flare which I’ve had some luck in combatting but which is still ongoing. Not sure what the solution will be but I am hard at work so stayed tuned.

All best,
Winston

[SS]

Hi Winston:

Thank you for the reply.
Well doxy did not work for me and i did not get good lab results so went back to minocin under Dr. T supervision.
Each one of us are different i guess.
Thank you for the information

Regards
ss

[JeffN]

Little Rocky what is your mothers diagnosis?

[littlerocky1]

Hi.

My mom’s diagnoses is RA. She has had it for six years. Her feet and knees have really been affected lately. She is nirmally very active. She misses walking the beach!!!

She has been on many of the conventional mess with not very good results. It has been frustrating taking those meds knowing they are just masking the symptoms. So she is excited and hopeful about this journey!

Littlerocky

[JeffN]

Sorry Rocky I am an SD person and am not very conversant in RA. I am sure there are many here who can help you out though. For me I will just say that mino was well worth the trip.

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