- This topic has 16 replies, 5 voices, and was last updated 16 years ago by
.
-
Posts
-
Hi, Hope someone has a similiar situation and can share. My husband was diagnosed with RA 2 years ago after a foot injury that ended with cellulitis. This has been an up and down time- mostly down. He is taking the minocycline and also has started Remicade after Humera and Embrel. I thought we were on a path with a solid MD but she has lost interest in his case so its back to the internet. We have been to the top docs in the Delaware Valley and they are stumped. Prior to an attack his cheeks flush and he runs a low grade fever. Anyone have anything like this and can share what they are doing? Hille
I've also been on Enbrel, Remicade and Humira. I stopped the Humira for 1.5 yrs while on AP. Due to stomach irritation I'm not currently on AP, so I'm back on Remicad. This time, tho, I'm also taking methotrexate since it is supposed to stop antibodies from forming against the Remicade, which makes it ineffective.
There is a list of AP doctors here that you can ask for to help you find a physician. Good luck,
linda
Ahhh, little lost here.
I'm Palindromic and on AP only and have been weaning off my other meds (like pain pills, protonix, etc). AP fixed me pretty quick – it's the nature of Palindromic.
So, why is he on all the other meds? Not trying to diss your choices – but PRA peeps bodies are designed (my opinion only) to fight this off. We're the only AI disease with a 50% natural remission rate. That's a remission without meds.
My suggestion – if your doc isn't doing what you want, find another. I had to fly out of state to get help and it was the best things I ever did.
Hugs,
Pip
Could you possibly let me know exactly what you are taking? We are on Dr 5. Appreciate any help. It has been a rough two years. Hille
Hi Hille,
In case you haven't done so already, you can go to this link and make a request for an antibiotic protocol doctor (AP doctor):
http://www.rbfbb.org/view_topic.php?id=54&forum_id=1
Have you read “The New Arthritis Breakthrough” by Henry Scammel? This is a terrific book, outlining the work of Dr McPhearson Brown who treated over 10,000 rheumatoid patients in his 50 years of practice with antibiotic therapy very successfully. I've found it to be an invaluable reference book, as I've progressed on antibiotic therapy. In it, you will find information about signs/symptoms, including the low grade fevers you mentioned (bearing in mind that when on immunosuppressants, like the biologics, your husband may also be more prone to infections).
Do hope you find some answers soon and wishing your husband well. Having a supportive partner like you is a true gift. 😀
Peace, Maz
Hi.:)
Are you sure it's palindromic? That's what I think I have. I'm doing great on A.P. The flushed cheeks and fever are odd. Could it be a cyclical fifth's disease flare?
Jenn
Hi, How would fifths disease fit in? My husband has some strange symtoms. Bone pain and joint pain – generally independently of eachother. Today he is fine. Looking for any new ideas. Many thanks for the input. He has had every test known to man and the only thing that has come up is RA. Hille
Hi, He is currently in a flare. We are going to start back on the AP over the break and make some drastic diet changes. We live in NJ so if anyone has any ideas please let me know MD wise. I thought we had a great MD 2 docs ago and he was doing all these alternative tests that were not covered that added nothing to the mix. He also was talking about chelatin therapy. So onward. Hille ( longest time w/o a flare is 20 days)
I had fifth's and it went on for a long time… or it was this palindromic ra or it triggered it or whatever. All I know is the fifth's came and went for a few months and it all got pretty confusing. I think it's fair to say, I don't have fifth's now. I know I did at one point- and I learned that fifth's in an adult can wax and wane for months if not years with the little virus coming and going. It sucks and it hurts and I don't see why they can't figure out all R.A. comes from bugs when they've identified enough problems that are joint/bug related.
Jenn
Thanks for the reply. I am looking at the nutritional aspect of fifths and see if I can find any documentation. Have a peaceful Friday. Hille
You mention starting up AP again… you know, it takes months for a lot of people to even kick in and start to offer relief. Were you guys aware of that? If you just start ap this weekend, don't expect to be cured by the dosing anytime soon.
Jenn:)
Hi, Bob is having a bad flare. His rheumitoligist is out until 4/1/08. We are really going crazy. He has been taking the minocycline in addition to Remicade and other drugs/ Pain is a huge issue. In my google research I wonder about the butterfly of redness on his face during a flare. I have only found this symtom in reference to Lupus and Fifths disease. Ideas greatly appreciated. Hille***Remicade infusion on Monday
Hille – this may or may not be the case, but it's worth noting that there have been reported incidences of mino-induced lupus symptoms with the use of minocycline. These are rare, but do occur in those susceptible.
The question with mino-induced lupus is whether or not it is a herx-related symptom…that is, bringing to the surface what may be sub-clinical lupus that would likely have erupted later down the line or whether it is a side-effect of the drug, itself. The immediate question being whether to continue with mino or not.
If your husband's symptoms are becoming unbearable, it may not hurt to try doxycycline as an alternative for a few months just to see if this resolves. If it does, it will answer this question and, if it doesn't, nothing is lost and he could resume the mino.
Peace, Maz
I just want to be sure you know AP doesn't work like a pain killer right when you begin taking it. If he's in pain and you just start taking it, it doesn't take the pain straight away.
Jenn
Length of flare – In looking at Bobs current situation ( not good) I am wondering about length of flare anyones had. He is on day 15 with very little let up. Have hopes of getting doxy this week. He is on the minocycline now. This is very discouraging for us. I have boosted his B vitamins from my reading. The pharmicist said it could not hurt. Peace Hille
The topic ‘ RA – roadblocks’ is closed to new replies.