AP in the UK

[JohnR]

Hi, I?m new to the forum and am looking for advice on how to go about getting AP treatment in the UK.  In particular how to handle my existing Rheumatologist and GP.

I?ve been diagnosed with Reactive Arthritis although other arthritic diseases have been considered at different points.  To cut a long story short I have arthritis in some of my fingers, metatarsals, toes, ankle, shoulders, jaw and possibly my back.  In general these are not symmetrical (although they?re starting to get that way now;)).  These have slowly mounted up over the last 4 years.  I?ve spent most of that time on NSAIDs and had to start on Lansoprazole when I got stomach erosions.  I?ve also had some cortisone by joint injection and IV ? this only helped for days to weeks. Oral steroids were fantastic but a one-off.

My Rheumatologist is now suggesting that I go on Methotrexate, but having read Henry Scammell?s book, and looked at this forum I want to try AP (and he didn?t rule it out).  Maz has suggested I try Breakspear for testing.  Can anyone tell me how to go about this and what to expect?  Do I need a referral from my rheumy or GP ? should I tell them?  Do I need to get any tests done beforehand?  Who do I talk to first?  Will Breakspear suggest treatment my doctors can continue or do I have to keep going there?

Sorry, lots of questions…can anyone help?

Thanks

 

[katieb]

Hi John, Sorry to hear about your joint problems !

Just a quick (?) reply to your query, as I am also in Cheshire ! I haven't been posting much recently as I am doing well, but try to keep reading the posts. There are more and more of us in the UK wanting AP these days !

Breakspear is essentially a private hospital. You don't need a GP referral to get an appointment there. I have just been looking at their website and it seems that, after the initial consultation, which most people fork out for (unless you have a private health scheme which will pay for it) they will write to your GP and try for NHS funding. This has to be approved BEFORE you incur any further costs, and they say that only 10% of their patients are successful in getting funding. I am not sure about the GP continuing the treatment – Spacehoppa may be able to help you more there as she is currently receiving Breakspear treatment. You can look at all her previous posts on here.

I am hoping to get some Lyme disease testing there for my 'Christmas present' !!!

If you aren't so bothered about the testing but would like to get on AP anyway, then you can either ask your rheumy, who sounds supportive, and try to persuade them to let you skip the methotrexate. But you don't actually need a rheumy to prescribe AP – a GP can prescribe it for you. If you have a look at my progress thread here :

http://www.rbfbb.org/view_topic.php?id=1975&forum_id=3

you can see how I managed to go down this route.

Failing that you can go to Dr H in Guildford, who is himself just a GP, but also an AP specialist, and you can see him privately without a referral, although he does require you to have a positive diagnosis from a rheumy (which it sounds as though you have) before he will see you. He doesn't do testing, but he can do IV antibiotics as well as oral. This will cost you a lot less that Breakspear. I can PM (private message) you Dr H's contact details if you wish.

Best of luck. Hope this will help you to decide which route to take !

Katie 🙂

[JohnR]

Hi Katie, Thanks for your reply.  I have read through your history and it makes me even more determined to get onto AP.  I hope things continue to work out so well for you.

Although I?ve been diagnosed with reactive arthritis I don?t feel that enough effort was made to track down the source of the infection and whether it was still present.  My old GP (who I left a few months ago) really wasn?t interested in finding out anything and my rheumy didn?t do tests for infections.  I think I?ll go to Breakspear and try and get a full suite of tests done.  At present my ESR is 23mm/hr (should be <10) but I was told my RF was ?negative? (but since my old GP lost the results I?m taking this on trust ? I ask for printouts now).  Bloodtest results I don?t really understand, but worried my rheumy are gamma GT 156 (7-75 normal) and alkaline phosphatase 129 (30-130 normal).  I was told to stop drinking (I don?t drink much anyway) and I had an ultrasound of my liver ? which I was told looked normal by the sonographer.  After a month without drinking my gamma GT was 111 and alkaline phosphatase 118 ? still pretty high.  I do wonder if they are linked to my NSAIDs and PPI.

I have my next rheumy appointment on Monday.  I?m going to take ?the New Arthritis Breakthrough? and some printouts of clinical trials and AP protocol with me.  I?m hoping he?ll work with me and support me going for tests and treatment.  Fingers crossed.

Thanks again for your reply,

John

[Maz]

[user=1798]JohnR[/user] wrote:

I have my next rheumy appointment on Monday.  I?m going to take ?the New Arthritis Breakthrough? and some printouts of clinical trials and AP protocol with me.  I?m hoping he?ll work with me and support me going for tests and treatment.  Fingers crossed.

Hi John,

Glad you found us here and hopefully Spacehoppa will pop by to add her experience of Breakspear for you! Katie is also a great support, having made a fantastic recovery very quickly. Although AP resources are thin on the ground for UKers, it can be done!

Just thought to add this link for you, as there may be some helpful info here to add weight to your decision to try AP when you speak with your rheumy on Monday. There are some commonly used arguments against the use of AP and some helpful info on how to respond.

https://www.roadback.org/index.cfm/fuseaction/education.display/display_id/88.html

Also, in case this helps, milk thistle is a fantastic supplement to help reduce liver enzymes and to support liver function. Supporting the liver while on AP is very important and eating a liver-friendly (good fats) diet is also helpful. The lemon and olive oil detox drink many of use here is also great as a slow liver cleanser when taken daily. I usually drink this an hour before bedtime, as the liver does its toxin dumping at night.

Here is the recipe to try:

Lemon & Olive Oil Detox Drink

1 whole lemon including skin (washed with stamps and stickers removed)

1 or 2 tablespoons first cold pressed virgin olive oil

2 cups water

Blend together in electric blender and then seive pulp with metal strainer. Honey or stevia sweetner can be added for taste. I also add a hunk of ginger into the blender with some ice cubes. Makes a lovely refreshing lemon drink that has both anti-oxidative and anti-inflam properties, as well as being nicely alkaline for the gut and stimulating bile flow.

Another supplement to check out is NAC, or N-Acetyl Cysteine. This supplement is a precursor to glutathione, which is a master detoxifying agent in the body.

The reason it's so important to maintain healthy liver function while on AP is because when infectious organisms are dying off, they release antigenic substances which can increase inflammation (called the Jarisch-herxheimer effect or “herx” for short). These toxic substances flood the body and, while a herx is seen as a good sign that the antibiotic is hitting the target, doing things to support the body to release these toxins quickly speeds recovery.

Nice to see you, John, and a warm welcome! 🙂

Peace, Maz

 

[spacehoppa]

Hi John,

Sorry to be so late in replying. I am just very pushed for time at the moment, looking after my baby and 3 year old.

I have had very positive experience of being diagnosed with Lyme disease and treated for it at the Breakspear Clinic. I went to see Dr D there, a rheumatologist with over 30 years experience and a very nice man to boot.

I agree that you should try and get to the bottom of your reactive arthritis, as it will certainly be treatable with antibiotics.

They'll present you with a list of possible tests you might want done and leave it with you to decide which, if any, you want to go ahead with. It is expensive, especially if you have a lot of tests done, but thoroughly worth it in my opinion, to get you on the right treatment track.

I have been on the antibiotic protocol for Lyme disease now for just over two months and my CRP (like ESR) has come down from 136 to 69! Plus, I've been able to drop my steroids by 6mg in that time, and I also feel like a million dollars in comparison to how I felt before (apart from the intermittent herxing, which puts me in bed for a few hours at a time).

I'm so sorry not to be able to add more right now as George needs my attention once again!

Please ask me any questions you like, and I'll happily fill in the gaps.

Best wishes

ruth

[JohnR]

Hi Maz,

Thanks for the link and the drink!  I've been trying to stay off citrus fruit for the past few weeks as I read this could (in some cases) make arthritic inflamation worse.  It hasn't seemed to have made a difference so I think I'll try the detox drink anyway.

Thanks,

John

[JohnR]

Hi Ruth,

Thanks for your reply.  It's good to know that Breakspear have been able to help you.  I gave them a ring today and they said I could probably get an appointment with Dr D in December.  I see my rheumy on Monday and I'm going to try to get him to support me going on AP.  If he's prepared to start straight away do you think I should do this or wait until I've been to Breakspear.  I'm just wondering if starting treatment might mask some of the causes?  Did you carry on being treated by Breakspear following you initial consultations or do you get prescriptions via your GP or local rheumy?

Thanks,

 

John

[spacehoppa]

Hi John,

No, I wouldn't start the antibiotics until after you've had some blood drawn at the Breakspear Hospital if I were you, in case it interferes with the results.

And yes, you should be able to get the antibiotics prescribed by your GP on the NHS. I am doing. It helps to point out to your GP that Dr D is a Professor with 30 years' NHS experience, and not some fly-by-night quack!

Sorry for the short responses… It's the kid's bedtime now! TGIF!

[JohnR]

Hi Ruth,

Thanks for the advice.  I'm feeling a bit more confident about the way forward now.  Hopefully I can get a cancellation at Breakspear before December.

Have a good weekend,

John

[JohnR]

Hi,

I saw my rheumy today and talked to him about AP.  He was aware of it but not personally familiar with its practice (I think).  He said that there's no guarantee that it will work but I pointed out that this was the case with long term methotrexate, but with far fewer nasty side effects. I told him I have made an appoinmtent with Dr D at Breakspear as I wanted a consulation with someone experienced in practicing AP.  He was OK with this and told me he wouldn't want to stop me trying something I thought might work.  I pointed out that if it didn't work the methotrexate was still there.  He agreed but told me to give the AP a good amount of time to work.  That was interesting:D.  Anyway we parted on good terms with me feeling like I hadn't burnt any bridges – which was nice as we've always got on pretty well.

Fingers crossed for my Breakspear appointment in December!

John

[katieb]

Hi John,

That sounds good and positive ! He sounds like a nice open-minded rheumy. Do let us know how you go on down at Breakspear in December – or perhaps even earlier ! The thing is, if you turn out to have an infection, then you CAN almost say there is, perhaps not an actual guarantee, but a very good chance that antibiotics will work.

I am hoping to make an appointment myself for January – when I get around to it !

Best wishes, Katie 🙂

[Maz]

John, so pleased to know your rheumy is on board with you and you have him as back-up, if needed. Great job and can't wait to hear about your upcoming Breakspear experience (all thanks to Katie for putting us on to this wonderful clinic)! Well done!

Peace, Maz

[katieb]

Hi Maz,

My pleasure – but I think they should start paying me commission !!! 😉

Katie 😀

[Maz]

[user=467]katieb[/user] wrote:

My pleasure – but I think they should start paying me commission !!! 😉

Yea, I agree with you there…often think it would be nice if all these docs contributed a bit to Road Back for all the hundreds of referrals they get from the foundation, too!!! Great to hear you're thinking of going for a work-up at Breakspear, as well, Katie. Please come back and let us know how it goes for you. What a great resource this clinic is turning out to be, eh? Fabulous find on your part…you're such a treasure. 🙂

Peace, Maz

[katieb]

More likely I just spend too many hours on the internet ha ha !! :roll-laugh:

But thanks for those kind words Maz.

That would be a very good idea for the docs to make a contribution !! Hope some of them are reading this 😎

Katie

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