Tuesday 27th October 2009.  :headbang:

Having restarted AP yesterday with 50mg Minocycline planned for MWF,  I had stomach pain again last night and this morning.  Went to see my doctor who thinks it's a reaction to the Mino and advised me to discontinue for a month.  Apparently in some people it causes stomach problems.  This is really bad news.  Anybody had a similar experience with minocycline and if so what did you do?  I queried changing to Doxycycline but the doc says that if a person has a sensitivity to one form of Tetracycline antibiotic, then they usually have the same problem with other forms.

Steve

This is a blog I originally posted on the IPRS site to track my progress with AP.  Having been introduced to the Road Back site I though I'd post here as well and hopefully get a wider feedback.  I'll also post the second blog to follow this one.

I've probably been developing PR for around seven years but it was only diagnosed in November 2007.  Previous medication  :Arcoxia 90mg daily:  Methotrexate 20mg weekly:  Sulfazalazine 4g daily.

I saw my Rheumy on 24th September and he didn't have anything to offer me after my having tried Methotrexate and then Sulfazalazine without any beneficial results. I suggested AP and was amazed when he said OK. This doesn't mean that he agrees it's likely to work, in fact he said that he'd no evidence of it working but as nothing else works, then why not!!
As an aside, I also asked him for a test for Lyme disease as I have been involved in country sports for most of my adult life but he wasn't supportive, saying that European Lyme was different from American Lyme and was therefor unlikely to be a contributor to my condition. I'm not 100% convinced and wonder what thoughts others might have???

I'm taking 100mg Minocycline every day, (although the prescribed dose is 200mg per day) and I certainly need some encouragement at the moment as I'm now having bad day after bad day. This may be my “welcome to the world of herx” as a friend said. However,is this herx or is it just a series of bad flares and no different from what I was experiencing before starting AP??? I'm considering doing what Noel did and increasing the dose, just to see what happens, although I'm not sure how much more of this I want to experience!!! (none actually!!)

The other thing I'm looking at is changing my medication frequency and starting pulsing, taking the Mino Mon Wed Fri, which seems to be the recommended procedure. Today I've changed to taking the 100mg in two doses, 50mg morning and evening, rather than the full 100mg in the morning, to see if this has any effect.

Here's my diary since starting AP: The score out of 10 is a rough measure of how much it hurts!!!

27/9 Started AP. OK today
28/9 Sternum 2/10
29/9 OK
30/9 top of both arms 2/10 L knee and ankle 8/10
1/10 R knee R wrist 8/10
2/10 both knees 6/10
3/10 OK
4/10 OK
5/10 OK
6/10 L groin L knee L ankle 9/10
7/10 both shoulders, R knee 7/10
8/10 inside L elbow, below R shoulder blade 6/10
9/10 R neck and side of head 8/10
10/10 OK
11/10 L neck and side of head,8/10 R shoulder 6/10 R knee 6/10, R fingers 5/10
12/10 Fingers both hands 4/10 L jaw 2/10 both knees 4/10

A pretty depressing record eh?

I have noticed that I'm usually worse at night rather than in the morning, although I have “hangovers” where yesterday's flare is still there the following day and takes that day to subside. I mentioned to my Rheumy that I was usually worse at night and he seemed surprised!!! It seems logical to me as there is more strain on the body as the day progresses so that by evening something has usually given in!! Do other people experience any similar pattern?

I'm also now firmly of the opinion that my flares are more likey to be in soft tissue than in a joint and that this isn't really a joint problem as in RA. When I had the pain in my groin it felt like it was deep inside, sort of like in the ligament or tendons rather than in the joint itself?????????????? My Rheumy maintains that it is in the joint which is no doubt why he thinks that it is associated with RA. His description of PR is that it's RA trying to start up and failing repeatedly!!!

I'm awaiting Amazon sending me a copy of “The New Arthritis Breakthrough” which they say will be despatched on 21st October. I'm looking forward to reading it and hopefully this will give me a lot more information and evidence that I am doing the right things.

I'm greatly encouraged by the experience of others who have found benefit in AP and it's good to be a part of this group for the positive messages and shared experiences. You are all greatly appreciated!! Please let me have your thoughts.

Watch this space for another thrilling episode!! (lol)

Steve

October 21st 2009 
I think I've got some side effects from the mino. Apart from a very significant loss of appetite, (no bad thing for someone who could do with losing some weight!!), I've developed a lump in my throat when I swallow and a pain in my oesophagous, behind the sternum. This feels like something's stuck there and is quite painful. I've spoken to my GP friend and he says that all could be side effects of mino, although the oesophagous problem is classed as rare.

He says that I could have a hiatus hernia recently developed and nothing to do with the mino, or that it could be an ulcer in the esophagous which has arisen from taking the second 50mg mino dose just before going to bed. (the recommendation is to take the mino whilst standing or sitting and with plenty of water or food, which is not what I've been doing!) Has anyone experienced anything similar with mino?

He suggests that I stop taking the mino for a week to allow any ulcer to heal and that I pinch some of my wife's medication (she does have a small hiatus hernia) and take that for the week I'm off the mino. Then, he suggests that I recommence the mino taking a full 100mg dose in the morning and also continue with her medication for another week to see what happens.

So-ooooooo, I'm really upset!!! This has all been complicated by the fact that I've been running a temp of 101 and waking up at night ringing wet through!! So-oooo, the bad throat could be caused by a dose of flu (of the porcine form!!) and nothing at all to do with the mino. (Although the pain in the oesophagous isn't associated with swine flu -it could be a co-incidence – but not likely!!)

So-oooo I'm having to start over again which upsets me greatly as I was expecting to be moving into the time frame of maybe seeing some improvements. Anyway, I may well cut to the chase when I restart and try pulsing. Pulsing does mean that I would only be taking 300mg per week rather than the 700mg I've been on to date, which might help address any side effect issues!!! Whether I'll split the dose into two and make sure I take the second dose early evening, I haven't yet decided.

Anyway, there we are! Back to square one.

It will be interesting to see what happens flare wise during the next week now that I'm not taking the mino. Maybe the mycoplasmas will behave themselves but I rather expect them to call partytime now the mino has been removed!!!!