Time for an update.

[katieb]

Hi Everyone,
 
            I haven?t posted for a few weeks, and a lot has been happening. Going back to 28^th July, I finally got my diagnosis of RA from the rheumy, who wanted me to start on methotrexate as soon as possible. I told her I was already taking mino, and she just sighed and said it wouldn?t work fast enough (note she didn?t say it wouldn?t work ? I do believe many of them now accept that it can work). She offered me an intramuscular cortisone shot to make me feel more comfortable for my upcoming holiday (ie vacation !!), which I accepted. I was wimping out to some extent but I also felt it might enable my mino to penetrate better, as the oral prednisone does. I?d been herxing quite a lot and considering whether to cut my dose to 50mg just twice a week, but this enabled me to keep it at the MWF dose.
 
            We had a really great week away in Wales ? the cortisone didn?t exactly take all the pain away, but it certainly made everything less noticeable. Certainly used my legs a lot during the week !:D
 
            Problem then was I really wasn?t sure how long the injection would last ? I thought the rheumy said about 6 weeks (anyone help me here ?). It?s now 3 weeks and I?m pretty certain it has largely worn off as I?m now feeling more like before (stiff and painful !!) and am a bit apprehensive about what I?ll feel like when it?s completely worn off ? hopefully not worse than before !!
 
            Anyway, I had to decide about the mtx (but not too soon ? I?m still waiting for the appointment for the chest x-ray I need before I can take it anyway !) ? and many people on this bb were really great in helping me to make the decision. However, as I now had my RA diagnosis, I was able to visit Dr H (the only AP Dr in the whole of the UK in the roadback list) ? he needed the RA diagnosis from a rheumy first. So I really felt that talking to an experienced AP Dr in person would help me a lot. Also my GP finally finished reading ?The New Arthritis Breakthrough? so I am now avidly re-reading it ? and that?s reminding me why I was so convinced in the first place !!:roll-laugh:
 
            So yesterday hubby & I set off for Surrey to see Dr H ! For reference to the other UK Roadbackers, Dr H is a lovely man and actually went out to the US to learn about the protocol before the death of Tom Brown ! so has treated quite a lot of patients since then, with some good successes, and needless to say people have travelled great distances to visit him ? even from Greece ! Our journey was only 4 hours, so we went there and back in the day. Luckily he is only about 1 hr from my mum, so I can combine future visits with a visit to her also.
 
            This is what he recommends : I go straight back to the 100mg MWF (apparently my mino is minocycline rather than minocin, but this is the best we can do in the UK as present), and stop wimping out on the herxing ! This goes on for 3 months then I up the dose to 100mg M-F and have the weekends off (he equates this more or less to 200mg MWF). Depending on how this goes, I can then opt to have IVs, which start off with 5 consecutive days, followed by once every 2 weeks. He thinks from my bloods that my disease is quite acute 😕 (no-one else has dared say that to me so far!) so I?d be a good candidate for the IVs. Hopefully if I go that route I can get a local nurse to administer them at home to save the travelling ? although there was a lady there yesterday who travels up from Cornwall every 2 weeks, and that?s quite a trip ! We are going to monitor ESR & CRP monthly.
 
            I should say that after all this I now know that I?m going to refuse the mtx at this stage ? and I?m clear in my mind exactly why. (I must say the thread on here ?So discouraged and dissapointed? was really really helpful !!:cool:)
 
            Tomorrow I go for an ultrasound scan of my wrists to check for erosions ? so fingers crossed !!
 
            Finally, my Lyme test ELISA & Immunoblot tests came back negative, so even though I am in a high risk group I am assuming I don?t have Lyme, for now.
 
            Many thanks for all the wonderful informative and comforting posts you have all put on here. It makes this whole situation so much more bearable !!:dude:
 
            God bless.
 
Katie
 
 
 
 
 

[lynnie_sydney]

Wonderful Katie! It must feel really good to know now that you have a path and to have reminded yourself why you're on it, as well as connecting well with Doctor H. I'm so glad you posted a few details about his approach. I am from the UK and still have lots of contacts there, but have not (till your post) had any real fedback I can use re DR H if and when people ask. You sound determined and focused – always a great way to be when following this path. The very best with it. Lynnie 

P.S. Funnily enough my oldest friend there a few years ago asked me about AP because she has an acquaintance who is a concert pianist living overseas and he was losing the use of his fingers. I sent her all the info I had and I found out he was very pro seeking out the treatment………and he lives in GREECE. I wonder if this is the patient Dr H mentioned!  

P.P.S. Minocin IS minocycline(which is the name of the drug itself). It is the brand name in the U.S. Its advantage over the brands available in other countries is that it is pelleted (slow release for us) which gives it a greater efficacy in doing its job, over time. 

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)

[katieb]

Hi Lynnie,

Yes I wonder if that's the person !! I'll ask Dr H next time if he was a pianist.

Thanks,  Katie

[kimberly_studio]

Hi, I'm just wondering why he needed a diagnosis first…because i'm still not diagnosed and i'm going to be going to a ap doctor…??

[katieb]

Hi Kimberly,

I'm not sure of the exact reason, but he makes a big thing about just being an 'ordinary GP', and not a rheumatologist, so wouldn't want to be put in the position of diagnosing somebody himself, and just prefers it to come from a consultant rheumy, and be sure it's one of the diseases that AP is known to work for. I myself was quite certain I had RA a couple of months before July 28th, but that was not sufficient. I guess it's just a personal thing.

The lovely thing about AP is that an 'ordinary GP' is perfectly entitled to prescribe it !

I expect your Dr will have seen a lot more cases than mine and will be confident to prescribe for you whatever your illness. Hope your visit goes really well !

Katie

[Maz]

Katie, that is just wonderful to hear your news! Thanks for sharing it all – you must be feeling some relief, too, to get that final dx, long journey and consult done…but also to know that Dr H is such a wonderful doctor and will be able to take of you in the way you choose.

Like Lynnie, I have friends and familial connections with England and this is really important info you have shared. I wasn't aware that Dr H trained under Doc Brown and to know he also prescribes IVs is a real bonus! Sounds like you have a gem of a physician there to help you on your road back. 😀 So happy for you and thank you again for so generously sharing!!!

Peace, Maz

[suera]

So happy for you to have found such a good/caring doctor…..not an easy task!

I had a cortisone shot and I would say I was lucky to get about 8 weeks out of it.

Sue

[superperroRA]

Everybody is different in this game. I recently tried Mobic and Celebrex. Mobic has zero effect on me, and Celebrex works really well. Make sure you try both, before accepting to take roach poison (= methotraxate or arava)
Bob

[lynnie_sydney]

Superperro – you still need to be cautious with Celebrex. It's basically the same content as Vioxx which has been withdrawn from the market. 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)

[Patti D]

Hey Katie,

I was wondering how you are doing? So glad you got a doctor you can work with. I am on the minocycline too not minocin and I am thinking it works pretty good. I have nothing to compare it too but I am progressing:):) today, herxing, but I have been trying to cut out a little of the minocycline as I am on 200 mg bid and I think it may be too much:? Keep us posted as to your progress. I love to hear when people are doing well:blush: It gives us all hope!!

 

Happy days!

Patti

 

[katieb]

Thanks everybody for your kind responses !

I must say I feel quite OK right now after taking 1 dose of 100mg yesterday – no herxing yet !! However, if you got 8 weeks relief from your cortisone shot Sue, I'd better not get too excited for about the next month until I'm sure it's worn off !

It is GCSE results day here in the UK (that's the 11th grade exams before they go on to A levels), and as my twins are out in Norway enjoying themselves, we have to go & pick up their results this morning, and then text them over to Norway. The suspense is killing me !

Is Celebrex a COX 2 inhibitor ? If so it may be similar to the Arcoxia I'm taking at the moment (90mg once a day). Dr H isn't keen on that so wants me to try to phase it out & just use paracetamol if possible (is the man a sadist or what??)

I am really happy at present & optimistic (that because I caught this at a very early stage I will get quick results) and will feed back any good news you can be sure.

Take care everyone and get well soon.

Katie

[lynnie_sydney]

Yes Katie it is a cox-2 inhibitor. I'd say your doc is pretty up on its downsides. If you can wean off it and get away with paracetemol you'll body will thank you for it. 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)

[Rosey UK]

Hi Katie

You saw the AP doc and he explained the dosage m-w-f etc, then if they are slow to work will start you on IV's?

I do know because you've caught yours early you will do well with protocol. I've had it about 5/6 years. I feel if I had the IV's it would make all the difference, because I'm just the same stiff and unwell. I was given prednisolone tablets a few weeks ago. 20mg for 2 weeks then tapering off one each 2 weeks , I'm down to 5 mg now and they do nothing. But when I had 20mg I became a normal person, emotionally, physically (well almost) and spiritually. I don't have any of that without them as I am now back .

I'm so glad for you getting help so early from the fantastic Roadback.

Good luck

Rosemary

[lynnie_sydney]

Rosey – I am sure it seems like a lifetime, but 5/6 years is not too long in the overall scheme of things. Many people have had really good results on AP after much longer (myself included). It IS, however, long enough for you to have some problems caused by the longer term use of some of the meds you have been on. Given Katie's glowing report, is there any chance you can get to see Dr H? 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)

[katieb]

Hi Rosey,

Are you getting your mino from a rheumy, or a GP ? Whoever, they don't seem to be doing you many favours. It's good that you're down to 5mg prednisolone, but not good that you're feeling so poorly.

If you think perhaps IVs would help, maybe it would be worth the long trip down to see Dr H. His contact details are available here on this site. He's willing to send the IV medicine etc to you if you can find someone to administer it at home.

Good luck, and I do hope you will begin to feel better soon !

God bless,  Katie

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