My rheumatologist said yes!

[katieb]

Well said Lynnie !! I can only say DITTO to that !! :dude::dude::dude::dude:

Good luck with the new meds Ruth- you so deserve it !

Katie x

[Rosey UK]

Hi Ruth

Nice to hear from you hope your baby and little boy are really well!

I'm furious reading your message all the drugs your on and them wanting you to have more. Thats my whole point whats the point of these anti- tnfs like humira if they want you to take everything else on the market available. The're all off their heads. And why don't you have a record book for all your blood tests as everyone else does at the hospital they belong? even my GP when they started to take my bloods gave me my own record book. I carry it in my bag.

sorry you have Lyme now as well but at least you know what you're treating. If you had'nt found out yourself the hospital or GPs here would'nt bother.

take care!

Rosemary x

 

[katieb]

Hi Rosey & Ruth,

That is a really good point about the record book Rosey – even I have one of those though I've never actually used it – the GP's practice nurse fills the books in for the previous month for everyone on mtx, each time they go for their next monthly blood test – that's why they need a 10-minute appointment instead of just 5 minutes.

I just have to phone up and ask for a printout of my results, and they are always very obliging and have never refused. I don't think they're actually allowed to refuse are they ?

Best of luck !!

Katie 😀

[Maz]

Ruth, I second everything Lynnie has said. It's always been so clear the kind of strength and fortitude you carry within you and I have a very good feeling that if anyone can do it, you will find a way around all these obstacles, one at a time, and you'll get there. 😀 

Peace, Maz

[spacehoppa]

Thanks so much guys! You make me all happy and teary… Mind you, I'm on my period and I've just been to a wedding today, so I've been a bit over-emotional all day long 😉 .

I did used to have a blood test book like you describe Rosey and Katie, when I was taking MTX. This was to make sure my GP surgery got my results each month before re-prescribing the mtx. It was a right pain to get the results faxed over in time each month though and often meant several trips to the surgery to get my meds.

But now I'm not on mtx any more, we're back to them thinking it's none of my business again. Crazy I know. I'll work on them don't worry. If I'm going to be taking these abx, then I definitely want to know what's going on with my bloodwork on a regular basis. It might be the only thing that keeps me going when the going gets tough.

But first there's the GP appointment to get past. I am sooo not looking forward to going in there and saying 'er, now I have Lyme disease as well and want buckloads of abx please' :roll-laugh: . I'll let you know how I get on. The appt is on Sept 3rd, so 10 days or so away yet. I am so ready to get started now.

[Parisa]

Ruth,

I don't know what amount of prednisone you are on now but when you get to 10 mg look into taking it every other day (ie. 20 mg every two days).  That helps to wake up the adrenals and tell them they need to start working again.  When your body adjusts (wait at least 10 days), you can reduce again.  This method worked really well for my husband.

[Christina V]

Hi Ruth just wanted to say thanks for posting all your information, I find it a real inspiration. (Brain is obviously not working still – because I just replied on another post to you “it will work”- thought I was on this post) !! 

My apologies to you Simon, my reply is also on the other post.  Again – congrats to you, definately rewarded for you tenacity.

Cheers, Chritina

[Christina V]

Thanks for the reminders in this post Lynie – it is just what the doctor ordered!!!

kind regards, Christina

[spacehoppa]

Hi Christina,

Yes, I can't count the number of times I've begun to flare and wondered why and then realised, eventually, that a knee steroid injection is wearing off, or I've forgotten to take my prednisone that day! It's very confusing isn't it, but we'll both get there in the end. I think you can't reduce too slowly, from my own experience. I'm thinking about buying a pill cutter to help me do this. It might be the only way! Best wishes to you.

Parisa – Thanks for the suggestion! 20mg every other day scares me rather. I understand the theory, and indeed my own rheumatologist has advised me to do it this way in the past, but maybe at a lower dose than this. I'm just terribly afraid of having days when I feel like death and have no energy at all, especially looking after a baby and three year old. I just can't afford to be out of action. But I'll bear it in mind as I'm trying to wean. I may try this at a lower dose. Thanks again!

[Christina V]

Hi Ruth,

I can definately recommend the pill cutter, it is so much easier – when fingers are not working particulary well – to use on those small prednisilone tablets!!

All the best to you and yours, Christina

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