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KatieB?s AP Personal History : RA
This is an awfully long saga, but unfortunately I feel it is typical of what anyone in the ?conservative? UK is likely to experience if they have a rheumatic disease, and find out about AP and want to try it. Admittedly I have been extremely lucky so far. But I am putting in most of the detail mainly for anyone else in the UK who is in a similar situation, to show that it can be done if you are just determined enough.
1996-2007 : Twingey knees lasting 1-2 weeks, from time to time. Always went away.
2005-2007 : Strange odd sore knuckles lasting 2-3 weeks. Felt like I had bashed knuckle on something but couldn?t remember doing so. Remember going to Dr at one point about thumb joint pain (it was ?nothing?). These always went away eventually.
Oct 2007 : Balls of both feet started hurting. I was doing a fair bit of running and had been having problems with some shoes, which I thought had bruised my feet. (Metatarsalgia). Forked outJust received the results from my February blood test. I was so excited I was jumping all around the nurse's office – she thought I was crazy. But she'd never heard of minocycline for RA – I don't think she'll forget it now. Hopefully she will spread the word. Here are the results :
ESR 19 (down from a max of 35) – normal range is 2-16
CRP 10 (down from a max of 73) – normal range is 0-7Full blood count, and thyroid function test : all normal
So from my blood looks like I am getting better. But I still have pain- mostly in shoulders and left elbow, and 3 fingers which still seize up every night. Taking arcoxia every other day now, and turmeric on the in-between days. Sunday is consistently the worst day of the week, so almost certainly herxing (Taking the mino M thru F, but not at weekends). Tuesday/Wednesday is usually absolutely brilliant (80-85% normal).
Knees are so great – right knee was never so bad & pretty much bends 100% now, but left one is so improved – bends about 90%. It clicks a lot though 😯
Seeing Dr H next Thurdsay (Feb 17th), so will ask him when the pain will go away ! Will also try to find out about IV AP studies done in London.
Landmark of the week : able to cut fingernails on left hand !
MSM : Cut back to 5gm twice a day after last post, and building up by just 2gm per week. Now on 8gm twice a day. Think it may have helped bring those inflammation markers down so fast, but like I say, it hasn't got rid of the pain yet. But I do have heaps of energy.
Quick update from my visit to Dr H. The VERY good news is that he is not planning to retire in the foreseeable future !
I think he is very pleased with my progress – I just have to stay on the same dosage for now. He thinks the pain ought to go away in a few weeks if the inflammation stays down, so we'll see !!
He asked if I'd ever been bitten by an insect, so evidently we haven't discussed Lyme before, so I told him I sure have been bitten by ticks several times but never seen a rash. He must think Lyme is a possibility, but wouldn't change any meds now as I am doing so well. So I expect I will just have to keep guessing !
He is thinking of branching out into MP if any of you in the UK are interested in that.
Well I got my March blood test results the beginning of last week. As I might have expected, but hardly dared to, the trajectory of the ESR & CRP stayed exactly on course, which has taken them both down into NORMAL RANGE !! 😎
ESR now 7 and CRP 3, both well inside the normal range !!!!!!
The CRP has gone down in practically a dead straight line since December, and ESR not much different. I am just gobsmacked ! I can hardly believe how well the protocol seems to have worked for me.
As for the usual blood count figures, RBC and Haematocrit, which were both below normal in November, are both climbing and are at the low end of normal.
The only abnormal one this time is Lymphocyte count which has dropped below normal. My daughter who is studying for her A-level Biology immediately piped up that my immune system must be being suppressed (clever little thing – always top of the class) – so I guess that is possible as Mino is meant to have a slight immunosuppressive effect. Thank goodness I'm not on anything more immunosuppressive than that ! I'll not worry about it !
I only get RF tested every 6 months, so don't know how that is going. Would like to get an anti-CCP next time, for interest, as everyone else seems to know theirs.
BUT…How do I actually feel ? This is the important thing as Dr H keeps telling me. Well I don't feel completely normal, though there is certainly a gradual improvement in pain levels and I am tons better than last summer. But if you think that normal CRP & ESR suddenly means there is no pain this is not the case either. My fingers are still stiff and 'triggering' every morning, and my shoulders still hurt when getting clothes on & off (but less than they did). And my left elbow is still stiff to bend.
I guess the main difference is that the pain isn't sufficient to make me feel I need the anti-inflammatories any more. I just take the occasional one now, as I do still seem to have quite a bad day most weeks (perhaps still herxing), but am mostly OK without.
MSM now up to 24g per day. Not planning to increase this any further now but will stick at that level for a while. Just ordered the 'Miracle of MSM' book as I figure it would be quite good to know a bit more about what it ought to do for me. I'm taking teh MSM right now simply on trust of the testimonies of the lovely people on this BB !!
At present I am assuming (hoping) that the symptoms will just gradually subside if the inflammation stays down, and I'm not looking for any alternative causes at the moment.
However I quite strongly suspecting that I have Candida as I have just dreadful bloating. Am trying to get rid of this with diet & supplements, but have been feeling so good recently I've been succumbing to temptations of bits of cake etc – oh dear !
Just a few asides now about the rest of life.
As I have said, my left knee recovered sufficiently for me to start jogging again, and it's been great, apart from the clicking. Unfortunately this clicking sometimes gets very persistent when I am out with the dog (for 30 mins plus), – actually worse when just walking than when jogging, and on occasions I've wondered whether I'm going to make it home. So I splashed out to see a brilliant private physiotherapist. She decided that the problem was probably the knee cartilage, and not directly related to the RA, but more to the fact that I'd been running for years, then stopped for a year, and now suddenly started again. So back to the GP to book in for an MRI scan to checkout what's really going on in there. Have to wait a horrendous 8-12 WEEKS for that appointment. So much for the NHS….. The good news is that the clicking doesn't happen every time I go out. The GP said to do more swimming & cycling, which is not a bad thing. So I went swimming today & managed 600metres in 1/2 hour & felt really great for it. I only do breast stroke.
I am beginning to feel bad about talking about my almost normal lifestyle now, and feel like I hardly had this disease before I got better. I read about all the terrible health problems that so many of the people on this board are still suffering, and I feel so sorry and wonder why I have been so lucky. I am very very grateful for this, and for the help given to me by so many people on the BB when I was feeling dreadful, and wish & pray for the same recovery for everyone else.
One last interesting point. I'd been rather worried about my next rheumy appointment coming up in May. Well this week I received a letter telling me the appointment had been cancelled, and they couldn't re-make it at present. I thought – crumbs was I really that awful 😯 but just to make sure it wasn't anything personal I phoned the secretary, who told me that the rheumy is moving on to do further research at the University of Manchester. I think I will write to her & suggest what direction her research ought to take !!! :roll-laugh: Anyway, means I will eventually be allocated a new rheumy – perhaps he/she will be more open-minded. He/she can hardly fail to be impressed by my graph !!
All for this month. God bless and be well to everyone who reads this. 😀
I'm a bit late posting my April blood test results, as I'm due my May test this week !
Anyway, the ESR has stayed the same on 7, and the CRP gone up a wee bit from 3 to 5 but still in normal range (0-7). :roll-laugh: And all other bloods in normal range this month too.
However, I thought perhaps I had been getting a bit too lax with my diet, as I'd rather not see that thing creeping up, :doh: so as I don't know yet which foods I really should be avoiding, I've gone back to avoiding everything ie gluten, cows milk, sugar and nightshade veg.
Decided to try to get some help with the food issues, so booked in to see a good holistic practitioner, who specialises in Candida. That will be later this week so I'll report back after I see her.
Last month I reported about my rheumy leaving the hospital, and wondering if I was really that bad. Well eventually I have received a new appointment with a new rheumy – and that is going to happen TOMORROW morning :shock:. So I am going armed with a few choice pieces of paper, one of which shows my ever-descending ESR & CRP, and I'll see what sort of reception I get. More news on that later in the week too !
Glad to say my clicking knee stopped clicking, so decided not to bother with the MRI scan. I don't really want to know if all my cartiledge has gone – as long as I feel OK (head in the sand approach I guess !).
As far as how I feel goes, well it is much the same as last month. I am in that place where if I take an NSAID I can feel truly GREAT and about 99%, for perhaps 48 hours, then I can feel it wearing off, and my hands and feet will start to hurt again, plus that silly stiff left elbow. But once or twice I have resisted taking one and found that the next day I can feel better without taking anything, which is encouraging. I am trying just to take them if the discomfort (probably pain is too strong a word these days) gets to about a 4 rather than 1-2.
Anyway, now the stuff about my mad hobby of orienteering. One of the biggest competitions of the year always takes place over the Easter weekend, which was just after my blood test, so off we went up to Northumberland, which is about as far as you can go up the East coast of England before you get to Scotland. We stayed in a caravan (English type – if you don't know what that is check out Rosey's post about McDonalds Carpark !!!). It was lovely weather, but went down to almost freezing overnight, and that caravan was not much better than a tent – Brrr !!
So I was still competing in the 'short' course for my age group, which I have been ever since my knee swelled up a year ago. On the Saturday I set off (this is an individual sport, navigating with map & compass to very precise points as fast as you can), got the 1st control point fine, but having gone from the open area into the woods, looking for a crag, and finding one, I failed to notice that the code on it showed this was not point no. 2 but point no. 3. So I then set off looking for point 3 which I couldn't find because I had already found it, if that makes any sense at all. 15 minutes later I finally realised what had happened, went & found no 2, then back to no 3 (you have to get them in the right order), and so on round the course without further mishap.
But really the point I am trying to make is that, although I had lost 15 minutes I was still only 3.5 minutes behind the eventual winner. So I knew that if I held it together on Sunday I could win overall. So that is what I did, which meant I was up there on the podium & got some lovely prizes. :blush:
BUT I really felt that this meant the time had come to admit that I am recovering so well from the RA, thanks to AP & everyone on here as always, that I have my life & my hobby back to such an extent that I really should go back to running the 'Long' course for may age group as I always used to do, and stop depriving all the genuinely sick people of their podium places. And many of these 55+ women do have various health problems – I just met one this weekend who is doing Short because she is on chemo, so I always spare a thought and a prayer for them.
Fast forward to this weekend. Went & did it – ran a 2-day Long course. Saturday was very rough underfoot and more of a stagger than a run, and ended up with a lot of bramble scratches ! Sunday, however, was a more important race and took place in a beautiful leaf-strewn woodland, which made you (I mean ME) want to just run through it for joy. It was one of those sort of 'mind over matter' occasions when I just forgot how my body felt and just blasted round it. It was wonderful !
But OH DEAR afterwards I seized up something awful (that was yesterday). This morning I wasn't much better – took the dogs for a nice gentle walk, but after that decided I would just have to take an NSAID as I could barely move. So now that the anti-inflammatory effect is kicking in and I can move a bit again.
The thing is now, it is hard to say how much of the stiffness is due to unaccustomed exercise, and how much due to the residual RA. I feel sure it is a bit of each and I am probably very foolhardy to go & do such strenuous exercise like that ! I perhaps won't mention that to the rheumy tomorrow !
TICKS : What I didn't say above is that after the Easter weekend I found 3 ticks embedded in various parts of my body. Despite having a bath & tick-check straight after, I hadn't found these, as they were in odd, inconspicuous places, and found them 2 days later when they started to itch and pulled them out pronto and threw them away. It was a couple of days later I saw some posts on here about keeping the tick & getting it tested. Next time I WILL do that – though I may have to send it to the USA !! I haven't developed a rash round any of the bites, but I did get a mini-flare in my left hand just afterwards, with one finger and knuckle swollen up. It made me wonder what the effect of re-infection with Lyme bacteria would be if you were already on the AP. Anyway the pain of the mini-flare has subsided, and the knuckle improved but that finger is still a bit of a sausage.
It's beacuse ticks are a known hazard of orienteering that I have suspected that Lyme might have been a trigger of my RA. But chances are I will never know for sure, and as the AP is working it doesn't matter too much anyway.
That's it for this month. Next week I'll report on my May blood test, my new rheumy and my nutritionist visit.
And I promise that now I will SHUT UP about orienteering !!
Health and Hope to everyone. 😀
Well I went to the new rheumy last week. He turned out to be just a locum, so not sure if I'll see him next time or have another new one !! I hope it will be him as he was actually very OK. From Eastern Europe somewhere, with an unpronounceable name. I showed him my graph and told him I'd never taken the mtx. He looked a bit bemused, but definitely interested. Said he had heard of the Minocycline treatment but had no personal experience of it. He said they would have to continue to monitor me. I said I was more than happy to be monitored. He was going to say come back in 6 months, but you could see his brain going tick tick and he decided 3 months would be better. I chuckled and asked if he didn't believe it would keep working. He just said he knew what this disease could be like. And I think that is really a fair enough assessment as none of us can really say when some unexpected flare-up is going to occur. So I said fine. And he said could he keep the graph for my records. So I think that was a pretty excellent result. He didn't treat me like a naughty child at all :roll-laugh:
Today I received the results of my May bloodwork. Gobsmackingly good – embarrassingly so in fact. But a real validation for AP. The ESR & CRP are much the same (8 and 2 now), but it's the RF which is amazing. I just get that every 6 months, and it is down in the nomal range now. Result said less than 20 when normal is less than 40. So I guess that means remission does it ?? But I still feel more or less the same as I posted last month. But I am going to be tough see how I go on without any NSAIDs now, as evidently I ought to be able to !! When I think back to when I first got symptoms, about 18 months ago (long before my diagnosis), what I feel now is very similar (painful hands and feet) – almost as though the symptoms have 'rolled back' to then, as oddly there was a period in the middle of all this when my feet didn't hurt at all. And I do still have a swollen index finger, which I also recall having early on. Most intriguing.
I am very interested in Susan & Maz's recent posts on 'Want Proof AP Works' about how if you have Lyme the AP will drive the RF right down as the bugs hide away in cyctic form, but as soon as you stop antibiotics the nasty cysts can burst out again.
Anyway I decided to tackle any Candida issues first, by going to the nutritionist. She thought that the fact that I was hospitalised for pneumonia at 5 years old after measles, and then had a tonsilectomy at 8 meant I had probably had quite a few antibiotics at a young age. Also I started getting the bloating pains intermittently in my teens. Anyway I am now on a slightly modified set of supplements (concentrated oregano for anti-fungal instead of the caprylic acid, high potency liquid fish ('Eskimo') oil instead of the capsules I was taking, and a different probiotic containing specifically lactobacillus rhaminosus plus others – much the same but better quality, and a new detox formula containing milk thistle, dandelion, sasparilla etc.) My diet is also even more strict than before in that I have to completely avoid yeast. It is all getting a bit silly, and very hard to stick to constantly. But the idea is that after a few weeks I can reintroduce some of the foods to see whether there is any adverse effect. Perhaps I don't actually need to avoid wheat/gluten for instance. That would be very nice.
By the way I am still taking the MSM and recently made some MSM gel to rub into problem areas. The recipe for this can be found on http://www.a1msm.co.uk
Wishing good health and success with AP to everyone. 🙂
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