December 15, 2017 at 10:49 am #461224
As you know I have been diagnosed with 4 conditions.
1. Seronegative Spondalytitis
2. Polymyositis with a positive PM/SCL – 100 with negative ANA.
3. High BP
4. Chronic Heart Palpation (Tachycardia )
All that after start of rheumatic disease.
The doctor is not sure how to proceed and does not want to with any TNF drugs until I get a muscle biopsy done.
I have recently been informed by my co-workers how my posture is changing. With this in mind I feel I need to do something to slow down this monster.
I am currently on two Abx protocol and doxy is keeping things in check. For instance, my weakness in the forearm is not bad while i’m on doxy but if I am not on doxy then i feel really really weak.
I do not take any prednisone / TNF blocker at the moment.
However, I am thinking if anyone here has done both to slow / stop the progression of spine fusing.
Yes – Richie – I have seen the best of best. I have seen all the specialist at Penn – none of them really could be much help full other than telling me I should be taking humira, enbrel or some sort of drug.
My current Abx protocol is done by my infection disease doc. He thinks that if we can eliminate the pathogen then perhaps hope is there for arthritis. We have try so many drugs and either they work in the beg or stop working after a month.
Next drug to try is zyvox.
ThanksDecember 15, 2017 at 3:05 pm #461227richieParticipant
Hi I hope you are taking med to control your blood pressure as well as palpitations –someone in my family takes SECTRAL for BP as well as extra beet –you have to tend to these issues —Taking a TNF is not a terrible thing -I know mant folks with rheumatic conditions who have gbeen helped by them —Face it –you have been limping along for over a year now taking all kninds of antibotics without result –I would think you would be a good candidate for TNF meds —good luck -richie
TBDecember 15, 2017 at 4:25 pm #461228
yes , taking valsartan for bp and metoprolol for palpitations daily.
this is b.s., I’m only 34.December 15, 2017 at 4:31 pm #461229
it’s like this
I go to large research hospital urologist will say hi bud you have pelvic muscle prostate, take nsaid and drink water. then u go infection doc he says bud u got post reactocr arthritis you need to see a rehum. you go to rehum and they say who u have post arthritis u need tnf.
it’s a big f****** (ADMIN EDIT) circle. no one wants to look at u as whole and treat u. they keep passing u around.
so I stick to my mom pop is, at least he willing to try abx.
large hospitals doc do not regardless if they research.
RBFV Reminder: Using inflammatory language (expletives) that other forum users may find offensive is not tolerated on this forum as per forum guidelines and this post has been moderated to remove the language in question.December 17, 2017 at 2:35 pm #461232Red LizzyParticipant
Has your Infectious DD tried the combination of Zosyn/Vancomycin? This is what was used on me to put Sjogren’s and Limited Sclero into remission. If not you should have him consider it, the ABX you stated he wants to use, Zyvox, is not even close, this one hits the full spectrum, aerobic and anaerobic. Hope this helps.
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