No change since antibiotics started

[anewday]

My husband has been on the antibiotic protocol under an AP doc since August. So far, no changes have resulted either way – not worse, not better. At this point we expected to see something.

Should we be asking the doctor to change the protocol (maybe change the antibiotic or dose)? When the doctor tested for the mycoplasmas, they all came back negative. We're wondering if these things may mean his RA is not caused by nasty critters????

Am I way off? Do we just need more patience?

[orchid]

I've heard it can take up to 6 months, although you may in fact need to increase the dose a bit. What dose/med/days is he on now? Obviously, talk with your doctor first.

[anewday]

[user=515]orchid[/user] wrote:

I've heard it can take up to 6 months, although you may in fact need to increase the dose a bit. What dose/med/days is he on now? Obviously, talk with your doctor first.

I believe it's a pretty low dose – every other day. 

We're checking with the doctor today, but just wondered if it was typical that it would take that long. I easily forget AP info :blush: .

[JeffN]

Well perhaps if he has stopped getting worse things have started to improve. In my view the first part of getting better is to stop getting worse. I have SD so I have no experience with RA and AP but with SD it is not an overnight thing. I did see some improvement two months in – my digital unlcers had started to heal and I felt I had some more energy than previously but all my improvement was small steps. I did not go backward much, my progress slow but steady. I was about nine months in before I really began even THINKING that I might beat the SD.

As orchid said maybe check with your doc to tweak the dose.

[JOJO19551]

After 4 months I noticed some change.  My dosage is 100 mg mino 2x per day.  Hang in there a few months, Jo Ann

[richie]

Hi
Patience patience patience –things usually take longer than that –it really is the rarity when folks start feeling better after a month or so
richie

[Sierra]

My rheumy said at least 6 months.

S.

[anewday]

Thanks everyone!

This is such a long road, but we are hopeful. 🙂

[JBJBJB]

I have been on AP since April 22nd. It's almost 6 months. During the first couple of months, like your husband, I did not feel any improvement. I did have some pain. I was still on 400 plaquenil which controlled my inflammation. I weaned it off in July and August. My pain was very severe and I had ESR up from 19 to 40 without plaquenil .

Recently I retested my ESR, it came down to 25. This means I do not have other medicine, only minocycline.

I have to add that in August, the doctor also found I have low function of thyroid, so I am on thyroid medicine. That could be one of the variables which made me feel better in addition to AP

I do feel a little better, not huge improvement, but a little better. I sleep better, my mood is a little better and I have more energy.

I still have some “froozen joints” from time to time.

JB

 

[SilviaM]

I started AP in July, first a 5 day course of IV clinda, then mino 100mg MWF.  When I attempted to increase the mino to 100 mg x2 MWF, my affected joint became much more swollen and painful, I'm assuming a herx. I cut back to the original dose, was put on a 2 week course of prednisone which worked very well (now finished), the swelling and pain came back.  So presently I'm worse that I was before I started AP.  I keep thinking I'm still in the throes of a herx, and it will pass and eventually get better.  In the meantime, I've also started taking MSM, which also has to be increased slowly, as not to have detox type symptoms.  My husband keeps asking me how much time will I give AP until I decide whether it's working or not and I say 2 years.  Most people seem to show some improvement in the 6 month-1 year time frame.  Good luck (to all of us!)   Silvia

[Betty S]

I started 100 mg Doxy 1xday in early August.  I'm also still on methotrexate and plaqenil for inflammation.  To date I have only gotten worse.  Every joint that was originally affected when I first came down with RA back in Dec. 07 as flared up and some others where the disease must have spread under the cloak of the anti-rheumatic drugs I first started with.  I think I have hit bottom with how bad it will get — now I am also waiting for it to get better.

[lynnie_sydney]

Sylvia – good for you that you are prepared to keep at it, but sorry that you are still feeling worse than when you started AP. If you search the old Board, have a look at the posts of Jennhere. You will see the agonising that she went through – not just physically – but over whether to wait and trust that AP would do anything for her. In a now famous line, in one of her latter posts, delighted with her progress, she called her previous self 'the biggest baby in the RA playground' . I know she wont mind me quoting that. It's a fascinating read in terms of a journal of the fear and the pain and the wondering if this is all a pipedream…..something so many people go through. Hang in there! Lynnie 

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[SilviaM]

thanks very much Lynnie for your encouraging words.  over this past weekend I've been suffering a great deal, can't sleep, can't find a comfortable position.  My husband is suggesting I should add Humira to the AP, as he's afraid the erosions are progressing and the AP hasn't kicked in yet.  I keep telling him that none of the conventional meds I've tried, including Enbrel and MTX have worked, and the disease has slowly progressed, so I don't think Humira will work either, as it's a variation on a theme of biologics.  I think the pain and inflammation are the herx, not progression of the disease.  I believe you responded to me some time ago saying your herx lasted 6 weeks.  I think I'm at about six weeks now, but I know, everyone is different.  I would have expected that when I lowered the dose back to 100mg MWF, the herx would subside, I guess my body has other ideas.  This weekend I ate a lot of rich food (it is Canadian Thanksgiving) and I suspect it aggravates the symptoms.  Is there a recommended RA diet?  I know a lot of people suggest the no nightshade plants, and a mostly vegetarian diet.  Do some AP docs give specific diet recommedations and others feel that diet is not as important an issue?  Also, how do you know if you have leaky gut, and is it an RA problem or mostly SD?  Thanks very much for your wise advice!   Silvia

[SilviaM]

one more quick question, how do you search the old board?

[Jo]

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