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My son has become so sick. It happened so fast. He goes to school in Savannah. He had hyperpigmentation in his legs from minocycline a few months ago, so I have been watching him. Here’s the scenario:
A few weeks ago he called saying he got freckles on his face. I told him to hold off on the mino until he sees a dermatologist. He has enough to deal with without having his face discolor.
At that time it got cold in Savannah. Being from Florida it was more than he was used to.
Right at that time he started to flare. Then he got a little better, then he flared again.
He came home for his break a week ago and his entire body has been taken over by the arthritis. It is in his jaw, up into his ear and then the pain shoots down to his throat. Too may places to list – down to his toes.
Now it may be a coincidence that this happened when he stopped the mino, but could the mino really have been keeping it that much in check? I don’t think so.
I know cold can stir mycoplasma, but….
Anyway, his traditional rheumatologist is putting him on Humira. I don’t know what else to do. I can’t let him lay in bed suffering and I can’t risk his joints.
I don’t know what to ask and I don’t know what else to do. Maybe we will scrap AP for now, stabilize him with Humira (if it works) and go see Dr. F one more time when we can. I prayed so hard to be one of the success stories on this board.
@MLTelfer wrote:
Now it may be a coincidence that this happened when he stopped the mino, but could the mino really have been keeping it that much in check? I don’t think so.
Anyway, his traditional rheumatologist is putting him on Humira. I don’t know what else to do. I can’t let him lay in bed suffering and I can’t risk his joints.
I don’t know what to ask and I don’t know what else to do. Maybe we will scrap AP for now, stabilize him with Humira (if it works) and go see Dr. F one more time when we can. I prayed so hard to be one of the success stories on this board.
Why not do both Humira and a different tetra, like doxy along with a macrolide, if hyperpigmentation is a concern?
Seems like a pretty strange coincidence that he flared so badly after stopping the mino…maybe not coincidence, at all? Any chance he’s picked up some acute infection that has set things off? Any recent labs?
Sounds like a good plan to get him to see Dr. F. again for a full work-up and see what is going on. Dr. F. will be able to advise on both AP and whether or not a biologic or DMARD will be his optimal course. In some cases, it can be nigh impossible to self-manage treatment course without the oversight of an experienced doc and, in some instances, help with another drug is needed for quality of life. It doesn’t have to be an either/or situation, however.
It’s sad to think he’s been struggling and you must be very worried. We usually tell folks to “go back to the drawing board” after about 6 to 8 months if they’re not seeing some signs of improvement in labs/symptoms. It can also be extremely difficult for younger folks to do what it takes to support the treatment. You mustn’t blame yourself. It’s clear you’re a parent who cares deeply about their child and wants to help him feel well and live a normal life. I have a feeling you’re going to do what it takes, no matter what. Hang in there!
PS. I am just adding this note, because I noted you had posted in Oct., saying your son had done really well on AP after being on it for two years. This is pretty interesting in light of the fact that when he came off his mino, things got much worse again. Another thought is that mino is not immunosuppressive and flares can and do occur until full, sustained remission is achieved. You mentioned that your son was at college…could stress and less care over eating habits be factors in his flaring if he’s in the midst of finals?
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