Knees injected for cruise

[Rosey UK]

Hi I'm back from our 3 week cruise. I saw my new rheumy just befor I went (I refused to see the last one because of his sheer arrogance with abx).

He asked what meds I was on I told him he said why do you take doxycycline?( I thought here we go), but he said he'd heard about it and said he doesn't know why we in the UK don't use this treatment he said we are too conservative in uk. I felt great. However he did ask me why I wasn't on methatextrate, I said because there bad for your lungs and my chest not good, he said thats true.

He injected both knees so that I could walk round the ship. I't was like giving me a new lease of life, fantastic. Been back 2 weeks now knees as bad as ever and unfortunatly so is everything else maybe the damp weather in the north of England.

I have decided to not have any more gold injections just the doxy, I don't want my health compromised any further, I already can't do much with my hands they're curled up so they can't say that the gold is doing anything.

Thank you and be well

Rosemary

 

[Maz]

[user=115]Rosey UK[/user] wrote:

He asked what meds I was on I told him he said why do you take doxycycline?( I thought here we go), but he said he'd heard about it and said he doesn't know why we in the UK don't use this treatment he said we are too conservative in uk. I felt great.  

Rosemary, that's wonderful news! Sounds like you've found a doctor who is open-minded and willing to treat you as you wish to be treated! 😀  So glad you had some knee relief for your cruise, brief as it was, so you could at least enjoy your vacation.

Was there a reason you chose doxy over minocycline? If memory serves, I think I read just recently that Wyeth brand name Minocin was now available in the UK.

Peace, Maz

 

[Rosey UK]

Hi Maz

Thanks for your reply. I take doxy because of lupus, unfortunately minicin or minicyclyn can exacerbate lupus. I wonder myself if they ever will work.

I'm wondering if I should take them every day as lots of others do?

I am worried because I can't sleep with pain it's practically all over my body, and paracetamol do nothing. I  do not want to take any other demards.

Thanks Maz

Rosemary :headbang:

[Maz]

Hi Rosemary….you have a collection of diagnoses there. Is there any way you could manage a trip to the US to see Dr S in Iowa to get an IV jumpstart? If not, have you thought about possibly calling him for a consult? Would be a shame if you were floundering around over the UK not knowing how to adjust your dose when he might be able to provide you with some valuable insight. It's great that you have a doc willing to prescribe doxy, but might be good if Dr S could fill that out for you just to reassure you. I know when I've been floundering, just to hear the sound voice of reason from someone more knowledgeable has been all it took to get me back on path.

If you need Dr S's phone #, just drop a line to apdoctors@roadback.org  and be sure to ask for “phone consult hours/days.”

Wishing you all the very best, Rosemary!

Peace, Maz

[linda]

Hi Rosemay,

I'm sorry to hear that your pain is bad right now. Have you considered any alternative pain therapies? I understand you not wanting to take DMARDS, but there are things like massage therapy, acupuncture, warm water therapy, etc that have worked well for me and some others on this board. They tend to take a few weeks to really kick in and work, but they have the advantage of not being harmful or addictive. The disadvantage here in the states is that they often are not covered by insurance, but I have no idea how much alternative therapies are covered in the UK.

For me, the acupuncture was the most effective, probably because it releases endorphins- the same thing that pain meds do. I hope you start finding relief soon. Are you taking any NSAIDS for inflammation in addition to the gold? You do need to control the inflammation somehow for the doxy to be able to reach the joints and be effective. Maybe Mobic or naprosyn (naprosyn is hard on the gut).

I can relate to not being able to sleep, insomnia is bad enough on its own, but when we're lying awake and in pain, wanting to sleep just to get a break from the pain, its so much worse. Wishing you better days,

linda

[spacehoppa]

Hi Rosemary,

Sorry to hear you are in a lot of pain right now. My GP lets me use low dose morphine patches which helps a lot as I can't tolerate NSAIDS whilst my stomach heals (or possibly ever again!). Can you tolerate NSAIDS? I believe Dr Brown allowed them on the protocol whilst waiting for the doxy to work. Correct me if I'm wrong anyone?

I have another question for you. I too live in Cheshire in the UK. I only managed to wangle minocin out of my rheumatologist by him happening to misdiagnose petichiae on my arm as folliculitis. Had it not been for that, I wouldn't be allowed this treatment. So, could you possibly send me a personal message with your doctor's name and hospital? My own rheumie retires this month and I'm worried that my next one might stop the minocin.

If you ever want to talk, do contact me. I'd be happy to meet up if you want a Real Life meeting with someone else on the AP!

Take care,

Ruth

[Rosey UK]

Hi Ruth

I can't believe you're in Cheshire thats great! I'm in Carrbrook, Stalybridge. The hospital is Tameside, but i'ts my GP who agreed to let me have doxy. I'm sure you're GP will let you continue with your AP.

My phone number is 01457 83 2468. I'm away until Tuesday 10th June. If you let me have your number I'll phone you when a good time for you.

Looking forward to hearing from you

Rosemary XX :roll-laugh:

[spacehoppa]

Thanks so much for the reply Rosemary. As a web designer I'm a bit leery of putting my phone number on a forum, so I've sent it to you in a private message.

I live in Sandbach by the way. That's quite a bit south of you. I live about 2 minutes from J17 of the M6, though, so dead easy to find if we ever did meet up. Wow, do you live right up in the hills then? I used to live in South and West Yorkshire (and Derbyshire actually) a few years ago, and I love, love, love the Peak District. I imagine you're quite high up in Stalybridge – am I right? Lucky you! Sandbach is flat as a pancake.

Must go as my tea is ready. Looking forward to speaking to you. Most times are good for me as I am looking after my toddler son most of the week.

Have a lovely holiday!

[Author]

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