Arthritis - anyone any experiences? - Page 2

Piggymon · 16-12-2008, 22:17

Awww poor ickle Daisy

Hopefully the docs will be able to find out exactly what's wrong, get the right treatment for her and get her all back to full health soon

You know where we are if you need anything x

Matblack · 16-12-2008, 22:33

Mum is the regional rep for the RA society, she would be a good person to speak to if its RA, but its more likely to be some sort of JIA I would have thought.

I won't kid you some types of Arthritis are very painful but they are controllable if not curable. I'm more than happy to put you in touch with Mum she has been drawn in to the support network and if she doesn't know about JIA she will know someone who does, maybe not locally but they will know a support network in your area.

Here is a link to a pdf about JIA and other childhood presentations

http://www.arc.org.uk/arthinfo/documents/6054.pdf

http://www.arc.org.uk/

http://www.rheumatoid.org.uk/ - These guys are excellent and the people Mum are involved with and they have buddy system and loads of other support systems.

0800 2987650 - Helpline (Mum says this is really good)

If I can be of help then just let me know and give the Minx my best wishes

MB

Matblack · 16-12-2008, 23:01

Mum says you must let the school know as they will make lots practical arrangements to help such as storing books and making adjustments to uniform, also mum finds these useful

http://www.posturite.co.uk/Posturite...&cookie_test=1

Bloody hell she just phoned me back and told me a load of other stuff, she says to let you have her number and she'll help but that the guys at the NRAS helpline are excellent

Checking that site NRAS are heavily involved in JIA too so http://www.rheumatoid.org.uk/ is a good starting point. Mum is off to lecture doctors at the local hospital next month and they are a very active very supportive organisation.

MB

Haly · 16-12-2008, 23:21

3 cheers for MB's Mum

Mark · 16-12-2008, 23:45

Abso-bloody-lutely. Thanks MB's Mum.

Garp · 16-12-2008, 23:52

My Bro-in-law's twin had a form of arthritis, struck him in his early to mid 20s, and slowly debilitated him over several years, stopped him from being able to work etc. etc. All of a sudden he got so pissed off with the whole thing that he decided to see what he could do for himself. After a month or so of internet research he discovered loads of examples of diet control for his specific type of arthritis.
After okaying it with his GP ("It can't harm, diet looks reasonable") he switched to the diet and 6 months later he joined us for my bro-in-laws Stag do, climbing mountains in Ireland, which he tackled with great vigor, not even a tiny hint of discomfort.

semi-pro waster · 17-12-2008, 00:32

I'm afraid I can't offer any constructive help but I hope it isn't as serious as it first appears. All the best to you and your family.

Kell_ee001 · 17-12-2008, 00:38

Poor Daisy

My Mum has rheumatoid arthritis as well, had lots of treatments and been in e few medical trials to try and help, so I can see how horrible it is to see someone you love in pain

Looks like MB to the rescue so to speak though as he's been able to offer more than I ever could!

Hope you're holding up ok and we're all here for you *hugs*

Pheebs · 17-12-2008, 09:33

Oh dear lordy

Poor poor bubba

I don't know much on the topic myself but big big big huge hugs to you and the lil lady herself. MBs Ma sounds like a star

I hope you're able to find something quickly to help her muchos xx

Big big hugs and love xx

Matblack · 17-12-2008, 09:54

A little research shows that the 'poly' you mention is a fancy way of saying 'effects more than two joints' and all juvenile onset is JIA, the main variants being systemic and specific, systemic can have some other side effects but if the pain is localised andd she doesn't have any other symptoms then it is unlikely to be that.

RA and its variants are auto-immune related and there is a lot off research into auto-immune at the moment, with the recent emergence of Anti-TNF which has been cleared for use in the UK. At the moment the usual route for medicine is NSAIDs (Non Steriodal Anti Inflamatorys) and then Methotraxate (My mother is on Metho) and then possibly on to Anti TNF but as trials progress Anti-TNF may become the drug of choice. In addition to this it is possible to get steriod injections at critical times, mother recently had to come off Metho for a while whilst she had an operation (Non RA related) and they gave her steriods which made her feel 100% better for about a month, unfortunately steriods of this nature are not a long term solution as they have side effects. But they can be used as a stop gap.

In addition to drug therepy you'll have access to lots of physio and occupational therepy and there are lots and lots of resources to help make things as comfortable as possible which you'll be given on prescription, Mum usually comes away with a bag full of toys when she goes for a visit.

When she was diagnosed we expected Mum to be house bound within a few years possibly in a wheelchair (I used to joke about tying the poodles to it like a chariot) as you've mmet her you have seen that her quality of life is very very high, she does get pain, she does have some side effects from the Metho but she still travel around the world, still has a very active life, if she wanted to she could still work. Therepy has come a very long way with RA and its still a strong focal point for research with the possibility of a cure very much in the target of drug companies. As for the time being despite what is said about the UK health system its one of the best in the world and with some recent fighting from NRAS all the treatments are available for RA and JIA on the NHS.

MB

16-12-2008, 22:17	#11
Piggymon Lara Croft Join Date: Jun 2006 Location: PigmoPad - Braintree Essex Posts: 8,604	Awww poor ickle Daisy Hopefully the docs will be able to find out exactly what's wrong, get the right treatment for her and get her all back to full health soon You know where we are if you need anything x __________________ BF% 28/08/08 - 21%

16-12-2008, 22:33	#12
Matblack Baby Bore Join Date: Jun 2006 Location: Svalbard Posts: 9,770	Mum is the regional rep for the RA society, she would be a good person to speak to if its RA, but its more likely to be some sort of JIA I would have thought. I won't kid you some types of Arthritis are very painful but they are controllable if not curable. I'm more than happy to put you in touch with Mum she has been drawn in to the support network and if she doesn't know about JIA she will know someone who does, maybe not locally but they will know a support network in your area. Here is a link to a pdf about JIA and other childhood presentations http://www.arc.org.uk/arthinfo/documents/6054.pdf http://www.arc.org.uk/ http://www.rheumatoid.org.uk/ - These guys are excellent and the people Mum are involved with and they have buddy system and loads of other support systems. 0800 2987650 - Helpline (Mum says this is really good) If I can be of help then just let me know and give the Minx my best wishes MB __________________ "we had roots that grew towards each other underground, and when all the pretty blossom had fallen from our branches we found that we were one tree and not two"

16-12-2008, 23:01	#13
Matblack Baby Bore Join Date: Jun 2006 Location: Svalbard Posts: 9,770	Mum says you must let the school know as they will make lots practical arrangements to help such as storing books and making adjustments to uniform, also mum finds these useful http://www.posturite.co.uk/Posturite...&cookie_test=1 Bloody hell she just phoned me back and told me a load of other stuff, she says to let you have her number and she'll help but that the guys at the NRAS helpline are excellent Checking that site NRAS are heavily involved in JIA too so http://www.rheumatoid.org.uk/ is a good starting point. Mum is off to lecture doctors at the local hospital next month and they are a very active very supportive organisation. MB __________________ "we had roots that grew towards each other underground, and when all the pretty blossom had fallen from our branches we found that we were one tree and not two"

16-12-2008, 23:21	#14
Haly Do you want to hide in my box? Join Date: Jun 2006 Posts: 14,941	3 cheers for MB's Mum __________________ Halycopter

16-12-2008, 23:52	#16
Garp Preparing more tumbleweed Join Date: Jun 2006 Location: Hawaii Posts: 6,038	My Bro-in-law's twin had a form of arthritis, struck him in his early to mid 20s, and slowly debilitated him over several years, stopped him from being able to work etc. etc. All of a sudden he got so pissed off with the whole thing that he decided to see what he could do for himself. After a month or so of internet research he discovered loads of examples of diet control for his specific type of arthritis. After okaying it with his GP ("It can't harm, diet looks reasonable") he switched to the diet and 6 months later he joined us for my bro-in-laws Stag do, climbing mountains in Ireland, which he tackled with great vigor, not even a tiny hint of discomfort. __________________ Mal: Define "interesting"? Wash: "Oh, God, oh, God, we're all gonna die"?

16-12-2008, 23:45	#15
Mark Screaming Orgasm Join Date: Jul 2006 Location: Newbury Posts: 15,194	Abso-bloody-lutely. Thanks MB's Mum.

17-12-2008, 00:32	#17
semi-pro waster Provider of sensible advice about homosexuals Join Date: Oct 2006 Location: London Posts: 2,615	I'm afraid I can't offer any constructive help but I hope it isn't as serious as it first appears. All the best to you and your family. __________________ "Your friend is the man that knows all about you, and still likes you." - Elbert Hubbard

17-12-2008, 00:38	#18
Kell_ee001 Wants Big Meat Join Date: Jul 2006 Location: Newcastle Posts: 6,478	Poor Daisy My Mum has rheumatoid arthritis as well, had lots of treatments and been in e few medical trials to try and help, so I can see how horrible it is to see someone you love in pain Looks like MB to the rescue so to speak though as he's been able to offer more than I ever could! Hope you're holding up ok and we're all here for you hugs __________________

17-12-2008, 09:33	#19
Pheebs Deep Throat Join Date: Jul 2006 Posts: 6,512	Oh dear lordy Poor poor bubba I don't know much on the topic myself but big big big huge hugs to you and the lil lady herself. MBs Ma sounds like a star I hope you're able to find something quickly to help her muchos xx Big big hugs and love xx __________________ http://www.spiffingdesigns.co.uk

17-12-2008, 09:54	#20
Matblack Baby Bore Join Date: Jun 2006 Location: Svalbard Posts: 9,770	A little research shows that the 'poly' you mention is a fancy way of saying 'effects more than two joints' and all juvenile onset is JIA, the main variants being systemic and specific, systemic can have some other side effects but if the pain is localised andd she doesn't have any other symptoms then it is unlikely to be that. RA and its variants are auto-immune related and there is a lot off research into auto-immune at the moment, with the recent emergence of Anti-TNF which has been cleared for use in the UK. At the moment the usual route for medicine is NSAIDs (Non Steriodal Anti Inflamatorys) and then Methotraxate (My mother is on Metho) and then possibly on to Anti TNF but as trials progress Anti-TNF may become the drug of choice. In addition to this it is possible to get steriod injections at critical times, mother recently had to come off Metho for a while whilst she had an operation (Non RA related) and they gave her steriods which made her feel 100% better for about a month, unfortunately steriods of this nature are not a long term solution as they have side effects. But they can be used as a stop gap. In addition to drug therepy you'll have access to lots of physio and occupational therepy and there are lots and lots of resources to help make things as comfortable as possible which you'll be given on prescription, Mum usually comes away with a bag full of toys when she goes for a visit. When she was diagnosed we expected Mum to be house bound within a few years possibly in a wheelchair (I used to joke about tying the poodles to it like a chariot) as you've mmet her you have seen that her quality of life is very very high, she does get pain, she does have some side effects from the Metho but she still travel around the world, still has a very active life, if she wanted to she could still work. Therepy has come a very long way with RA and its still a strong focal point for research with the possibility of a cure very much in the target of drug companies. As for the time being despite what is said about the UK health system its one of the best in the world and with some recent fighting from NRAS all the treatments are available for RA and JIA on the NHS. MB __________________ "we had roots that grew towards each other underground, and when all the pretty blossom had fallen from our branches we found that we were one tree and not two"

Thread Tools
Show Printable Version Email this Page
Display Modes
Linear Mode Switch to Hybrid Mode Switch to Threaded Mode