Forum Replies Created
July 8, 2020 at 5:00 pm #465880
I think you’re wise to consider changing things up. If I may ask, what was the terrible advice and treatment you received from your last AP doc? If you prefer, you can PM me with this info. It may be important to add this to the doc notes for others.
The description you gave re: mino sounds a bit like microbial hypersensitivity – too much die-off. Minocycline is prescribed to help asthma so I’m wondering if you started experiencing mino-induced pneumonitis? What sort of investigations did your doc do? Did he run any DILE labs or do a pulmonary scan? It would be good to get some confirmation on these things as you might want to discuss switching to a diff abx class altogether.
That said, some people do use mino and mtx together successfully. A lady in the new RBF FB page just shared she is in med-free remission after being on this combo for a year plus LDN and the autoimmune paleo diet. She’s in remission in both labs and symptoms!
If you look on drugs.com interactions checker, there is a moderate interaction with these two that just requires monitoring.
As for when to take them, it shouldn’t be an issue as oral methotrexate is usually taken once a week and you pulse low dose mino. Folic acid is a necessity when on methotrexate as it interferes with folic-acid producing microbes in the gut. Hopefully your doc mentioned this? Can you share what dose you’re taking?
Alternatively, have you discussed hydroxychloroquine with the rheumy? It might be less likely to cause blood count anomalies as you’ve had this issue before with the low platelets. I didn’t tolerate methotrexate well – was on it for 16 months (15mg) but felt bone-tired all the time, reflux, elevated alkaline phosphatase, very low lymphocytes and other reduced blood counts (it suppresses bone marrow), and worse swelling. I switched to hydroxychloroquine and it worked like a miracle in combo with tetracycline.
Hope you find some relief, Niteowl. It’s a journey to find what works for one’s self. Everyone is different and what works for one may not work for another…including which generic Minocycline may be more effective than another.July 8, 2020 at 2:59 pm #465879
Have you considered talking with your prescriber about rotating to a different tetracycline for a while? Also do you take daily ascorbic acid/Vitamin C?July 1, 2020 at 7:45 pm #465872
Thanks, Phil – interesting, but not surprising. 🙄June 24, 2020 at 11:40 am #465847
Hi Lucy – just sent to you in PM.June 24, 2020 at 11:39 am #465846
Just sent you “most experienced” AP doc list that includes Dr. F. In CA.June 23, 2020 at 3:33 pm #465841
Dr. W. is in NYC and he notified the foundation a week or so ago that none of his colleagues at his hospital were willing to prescribe AP and asked us for doc lists for NY and surrounding states for his patients. This rheumy is retiring in one month and Vincente will no doubt share how they made an exception and he got squeezed in as this doc is no longer accepting new patients.
There is another very experienced AP rheumy in Riverside, CA, however, if you’d like his contact info?June 21, 2020 at 10:11 am #465838
Hi Lucy – no problem! Just sent the lists to your private message box. You should get an automated email notification to just click on to find your PM, but you can also find your PM box in your user Profile.
All the best in your search!June 20, 2020 at 11:03 pm #465836
Which states would you like lists for?June 2, 2020 at 12:39 pm #465792
Yup, you’re right, Linda. Voltaren is a brand name for diclofenac.June 1, 2020 at 10:38 pm #465789
My rheumy prescribed it so I just had the co-pay. Orthopedists sometimes have free samples in their office. Have to be careful not to use more than prescribed (nor combine it with oral anti-inflammatories, like Mobic or ibuprophen). I find it’s been helpful as an adjunct to have on hand as it’s quickly absorbed topically to help with joint pain. Not a miracle cure, but saves swallowing a ton of ibuprofen. Volteran gel is similar. Best to check with rheumy and ask if it would be okay to try.June 1, 2020 at 3:23 pm #465787
The usual suspects are herxing and rebounding around here when starting or restarting AP (or switching/adding antibiotics) and tapering off pred.
Have you tried topical pain relief gel, like diclofenac?May 29, 2020 at 10:28 am #465777
Some research-physicians are also questioning the possibility of a re-activation, from viral immune suppression, of a co-existent coinfection, such as chlamydia pneumoniae, known to exist in a chronic cryptic (dormant) form in the human body and causing multi-systemic inflammatory symptoms.May 29, 2020 at 9:11 am #465775
Not in Italy!
Italian scientist says she discovered main mechanism behind COVID-19 By MAAYAN JAFFE-HOFFMAN MAY 3, 2020
“The Italian Society of Rheumatology interviewed 1,200 rheumatologists throughout Italy to collect statistics on contagions. Out of an audience of 65000 chronic lupus and rheumatoid arthritis patients who systematically take hydroxychloroquine, only 20 tested positive for the virus. “Nobody died, nobody is intensive care, according to the data collected so far,” Chiosulo said.”
The issue with Hydroxychloroquine and Covid-19 is that patients were told not to go to hospital unless they were unable to breathe. Many Covid patients are hypoxic by that stage with blood oxygen levels dangerously low, putting terrible strain on the cardiovascular system and other organs. Studies on Covid-19 are taking place in hospitals and hydroxychloroquine was being used on the sickest of sick patients about to be or on ventilators when prognosis is very poor. These studies were doomed to fail.
It’s very interesting that in 7 decades of hydroxychloroquine use, not one cardiology society has weighed in on the cardiac dangers of this med! It’s safety track record as one of the safest DMARDs for use in RA and lupus is pretty exemplary. Clearly it shouldn’t be used in very sick hypoxic patients with blood clots in their circulatory system but the retrospective Italian study on RA and lupus patients, a country that was hit very hard by the virus, it seems hard to deny that this patient population was afforded some protection taking it as a DMARD.May 28, 2020 at 9:46 pm #465772
Hawk, sorry you’re having trouble. I sent the AZ list in a private message on the forum system. If you place your cursor over where it says “Hello Hawk8686” on this page (bottom right), a pop up menu will appear. Select Messages and then Inbox, and then you should find your message. Let me know if you still can’t find it and will send via email from your forum account.May 28, 2020 at 9:45 pm #465771
Hawk, sorry you’re having trouble. I sent the AZ list in a private message on the forum system. If you place your cursor over where it says “Hello Hawk8686” on this page (bottom right), a pop up menu will appear. Select Messages and Inbox, and then you should find your message. Let me know if you still can’t find it and will send via email from your forum account.