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Hi all,
I am looking for some advice on what my next step should be. I was diagnosed in December 15 based on anti-ccp result on a blood test but I wasn’t presenting many symptoms really… I had some issues in my fingers which got worse and then over time, I felt it in my wrists/shoulders etc.
I started on AP in Jan 16 – 200mg M/W/F and I also added LDN and a supplement program… Had a horrendous Feb where I initially felt worse but by March/April I could feel myself getting better, got energy back, didn’t feel down, hardly any pain on waking. MY feeling good continued until the end of the summer when in around October time (I hadn’t changed anything in treatment plan) I was suddenly hit with loads of pain again… I thought it was just a flare-up but it’s been 6/7 months now and I continue to feel worse… It can’t be any kind of herx because I haven’t increased dose and it’s lasting too long… I have what feels like burning pain in my arms and my wrists are visibly swollen… I can’t even lift my arms above my head to get dressed/wash my hair without it hurting a lot!
I have tried cutting out various things in my diet – did a whole month cold turkey (alcohol, sugar, gluten, caffeine) and didn’t feel one single scrap better… I have had my bloods done every 3 months since diagnosis and nothing changes – CRP normal, ESR normal, RF normal – anti-ccp elevated… I don’t know what to do next – do I have to admit this isn’t working for me and go back to a rheumatologist to try some of the awful toxic drugs, do I increase my mino dose higher as I’ve been on low dose for 15 months now? Any advice appreciated….
Thanks all!
I’m sorry that you’re feeling worse. It sounds to me as though you are not working with an experienced AP doc, which can be difficult to find/afford. I wonder if you might benefit from writing to Dr. S in Iowa for guidance. There may be tests that he would recommend. If you’d like his contact information, send me a private message and I’ll get it to you. He is semi-retired, so sometimes it takes awhile for him to get back to you, but he is kind and will discuss treatment with patients over the phone or via email.
Hi,
do I increase my mino dose higher as I’ve been on low dose for 15 months now? Any advice appreciated….
That might help, but it could also make things worse, depending on the reason for your flare. I think it’s important that you get tested to make sure that it’s not drug-induced lupus erythematosus (DILE). Hopefully Maz sees this message. Maz developed DILE from taking mino, so she knows quite a bit about this topic.
Phil
"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einsteinhi rushnik,
No idea about what can help you – just informing that your blood tests are exactly as mine, and I also tried diet changes and so on, and no success at all.
Have you checked your ANA (anti nuclear antibodies)? Just curious if you have them also positive.
P.S.
Yesterday I have started so called “anti-amoebic treatment” (Metronidazole <USA name “Flagyl”> + Allopurionol) – no success so far.P.S.2
I feel a bit better after quiting sugar, but it is like 15-20% better only. By “quiting sugar” I mean no fruit yoghurt, no sugar into tea/cofee, no processed flakes for breakfast, no cakes, no ice-cream, no sweet-soda etc. It all has sugar addition.March 2016:
31 y.o. male, Poland, Europe.
Diagnosed with RA (started as palindromic rheumatism) at age 28 (SED negative, RF negative, CRP negative, Lyme negative, Chlamydia negative, ANA highly positive, aCCP/ACPA higly positive.
Treated with sulfasalazine - no success. Chloroquine - no success. NSAID - no success.
Treated with MTX injections (10mg->15mg->20mg->15mg->12,5mg->10mg->5mg) for 2years. Almost total remission. 3 months after MTX quit - got RA again with trippled strength.Hello Nikki,
Firstly I must apologise for not getting back to you. I saw that you sent me a PM months ago, for some reason it went into my junk file and I didn’t see it.
Anyway , sorry to hear that you are not improving & feeling awful.
As we both know from experience,both being in the UK , there isn’t an abundance of AP doctors. Having said that , would you consider trying IV treatment at the Surrey clinic ? Or even reducing the dose to 100mg Minocin M/W/F ?
From what you said before, you are being treated by your GP ? Maybe , just possibly , Dr E could throw some light onto why you aren’t improving.
Of course DILE should be ruled out and you could always switch to doxycycline.
I think if I was in your shoes, I would stop the AP for a week or two ( a washout I believe its called) & then get some advice from Dr E or even try the Hertfordshire clinic.
I know you have a very high ranking and stressful career , but as I keep saying , you need to take time out to heal !
I believe my recovery was due to stopping work and being sloth like. Sleep , good nutritious food, avoiding my husband & other annoying people as much as possible….
Promise to reply if you message me again and you can always call if you need a chat.
Nancy xHi Lemons,
Thanks for reply! I only just saw this but I had already e-mailed you this morning so we must have crossed!
I actually mis-typed my dose – I do only take 100mg M/W/F – I incorrectly type 200mg….
I don’t feel like it is DILE because it started after a reasonably short amount of time on AP and hasn’t got dramatically worse and I haven’t felt the other more serious symptoms of that. That being said, it might be an idea to stop for a couple of weeks to see if that makes any difference…I did to go to see Dr E again at start of year but he didn’t have any real advice apart from considering to increase to 100mg M/T/W/T/F which I didn’t do…
Maybe some IV would help me.. If only I could get somewhere quicker than the 1 hour it takes me to get to Dr E’s office… Yes I do have a stressful career which means it’s not easy to take that time-out without saying goodbye to it… So difficult… I would love a year off to focus on this…
Haha re avoiding your husband – you always make me laugh!
Hi Rushnik
From your post, it would seem that it might be Jan 2015 that you started AP (not 2016). Is that correct? If yes, it seems that your symptoms started worsening 9/10 months after starting AP, after starting to feel better after around 3 months. That suggests something else is going on and it would be great if you could see someone who is at least “open” to things other than the conventional approach to investigate and to try to work to find out what that ‘something else’ is.I think Lemons has given you some sage advice re trying a week’s wash-out to see what effect that might have.
I’d also consider getting tested for Lyme Disease. Think Infectolab in Germany is generally thought the best lab for your part of the world.
Hope you find some relief soon!
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)Hi Lynnie,
Yes you are correct (second mistake of my original post)… I started AP in Jan 15!
I feel like something else is going on too.. Just need to find a way to find out…
Nikki.
Hi Rushnik – I wrote in an earlier post that I was simply struggling along doing very badly from Sept. 2014 to Feb. 2015 on 100 mg. MWF. I took a chance in late Feb. 2015 and upped my dose to 100 mg. 2 x a day MWF and by March 2015 I was improving rapidly. It’s worth a try. It worked for me. I just needed more antibiotic, but I know that doesn’t work for everyone so my suggestion is made with the greatest humility as many here know much more than me.
Hi CMS12,
Thanks for the reply – that’s so interesting… When you upped your dose, did you have any initial worsening of symptoms before feeling better? How are you feeling now?
Hi,
I don’t feel like it is DILE because it started after a reasonably short amount of time on AP and hasn’t got dramatically worse and I haven’t felt the other more serious symptoms of that.
A person can develop DILE as soon as 5 to 6 months after starting mino. And autoimmune reactions to minocycline can manifest in different ways, so I wouldn’t be too quick to dismiss the possibility that mino may be responsible for your worsened condition.
That being said, it might be an idea to stop for a couple of weeks to see if that makes any difference…
I disagree with the washout suggestion. If you were a month or two into your treatment then I would tend to agree, but you’ve been on mino for well over a year. If you stop taking it and start feeling better you will not know why. Get tested for DILE so you aren’t playing guessing games — that’s my recommendation.
I did to go to see Dr E again at start of year but he didn’t have any real advice apart from considering to increase to 100mg M/T/W/T/F which I didn’t do…
He gave you good advice. I happen to think that 100 mg every day would be even better (as long as you don’t have DILE or another autoimmune reaction to mino).
Phil
"Unthinking respect for authority is the greatest enemy of truth."
- Albert EinsteinWhen I was on AP under Dr Es care, he would always make a point about what to with DILE.
He stipulated very clearly, that if there was any suspicion or indication that the condition had developed , I was to stop taking the Minocin immediately and contact the clinic.
At one appointment with him, I mentioned that I had a sore throat & he was so concerned I had drug induced lupus he was reluctant to give me a repeat prescription. Only when I explained that everyone in the family had the same virus , he agreed to write the script.
Whatever you choose to do Nikki , I , like everyone else that’s replied to your post , am not a Doctor. In this situation I really think you need to get some expert medical advice.
N x
Hi Nikki – My symptoms improved dramatically in just the first week. I was really shocked but I’d been on Minocin low dose (100 MG. 3 x week) for 6 months at that point so not sure I would have had such rapid improvement without that. I had been on Minocin for 5 years before that and in remission until I was switched from brand to generic.
Unfortunately I lost access to Minocin again last fall and went to generic again which just didn’t work for me so I’m not doing so well right now. I had been back to about 75-80 percent improvement before that though. I have gotten brand Minocin again but it’s only been two months. I believe I’m herxing right now though.
No one has mentioned to you the possibility of generic vs. brand here but then I know you aren’t in the US so maybe that isn’t an issue for you.
Anyway, as everyone has said it’s best to be sure this isn’t DILE. If not then your doc has already recommended you up your dose so it’s worth a try. Good luck.
Cindy.
Hi Cindy,
I wrote in an earlier post that I was simply struggling along doing very badly from Sept. 2014 to Feb. 2015 on 100 mg. MWF. I took a chance in late Feb. 2015 and upped my dose to 100 mg. 2 x a day MWF and by March 2015 I was improving rapidly. It’s worth a try. It worked for me.
You’re not the only one. There are several people who have recently reported that their condition improved considerably after increasing their dose of mino. Also, I have corresponded with a few people in the past who told me that they wrote to Dr. S. for advice, and he told them to increase their dose of minocycline to 100 mg twice a day, every day. For those who don’t know it, Dr. S. is a very experienced AP doctor.
Phil
"Unthinking respect for authority is the greatest enemy of truth."
- Albert EinsteinI just came across this article and thought I’d pass it along since it appears that the info is likely to be helpful:
Minocycline‐induced lupus: clinical features and response to rechallenge
Phil
"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein
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