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Date: 03.12.2010
From: kazzie

Subject: hi again

after sppending another 3 days in hospital with a bad flare up and stomach bleeding they are now decideing if qualify for a pen like injection does any one else have this and any side effects
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Date: 04.12.2010
From: dolly

Subject: Re: hi again

hi kazzie. yes i'm on this pen like injection. it's called humira. i'm also on 10mg of prednisone a day and a pain killer called hydromorphone. i've been on humira for about 4 or 5yrs. i've been on prednisone for 30yrs. the painkiller is really new, only about a week. i'm doing what i call pretty good alot better than a bad day. it takes about 2 months for the humira to kick in but be patient as for most of ra drugs take that long. good luck and take care.
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Date: 04.12.2010
From: KayJay

Subject: Re: hi again

kazzie hope you are feeling better - did Diclofenac/ anti inflammatory make your stomach bleed ? really they should have given you a PPI [ like Lansoprazole or similar ] to take with Diclofenac to proctect your stomach also do they do regular blood tests for anaemia ?

Well hello Dolly [ lol ] very sad to read you have had to struggle with your illness for such a long time but like you say we sort of get used to the pain and have to discover new ways of getting round things !!

I'm 56 but thank god this only came on in the last 10 years or so with me. I am so lucky to have been able to enjoy my 3 kids without this pain when they were little.

I've been on Hydroxy [ Plaquenil ] for about 9 months but the Rheumie Nurse told me to come off it after XRays and blood tests so I'm a bit confused at the mo about it all. Got to see her next month. Managed to get out yesterday for the 1st time this week with all the snow. The city centre was like a skating ring and all the trams were jam packed . Won;t be doing that again in a hurry !!

Hope you are all having a no/low pain day ;0)
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Date: 04.12.2010
From: kazzie

Subject: Re: hi again

hi yeah kayjay am on lanspozole but they tried me with sulperzine and it happened this is the second time so they put it down to that .so thats why there goin try new treatments and have tried all quite a few anti inflamt and they do the same but they said am goin have to try again with acoxio .i know its trail and error but boy does it get you down
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Date: 04.12.2010
From: dolly

Subject: Re: hi again

hi kayjay. thanks for reading my post and replying with concern. i was telling my husband that it doesn't seem like anyone is reading any of my posts. he just goes " hon give them time, after they see you've had RA for 41yrs they'll reply with lots of questions" i just said o.k. so again thank you, talk soon.
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Date: 04.12.2010
From: KayJay

Subject: Re: hi again

You are very welcome dolly :0)

Kazzie perhaps they should have increased your Lansoprazole dose ? I was on 15mg but they increased that to 30mg when they found I was anaemic.
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Date: 04.12.2010
From: kazzie

Subject: Re: hi again

yeap am on 30 was at first the 40 emprozole but they put me back on 30 lanz i think its me i have a dodgy stomah to add the orther problems
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Date: 04.12.2010
From: kazzie

Subject: Re: hi again

hi dolly sorry i didnt reply am also forget ful i think thats what there thinkin of puttin me on the pen one as well as mxtoject again am so scared of all this am thinkin at moment should i just not have anything and give my body a rest but the pain is gettin worse .but am so scared of having the sickness again .did you ever try anything else before that any side effects thanks
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Date: 04.12.2010
From: dolly

Subject: Re: hi again

hi kazzie, no problem. yes i've been on many RA meds. it takes awhile to find meds that will work for you. from experience i can tell you do not try to go without because belive you will "flare up" big time if you stay off meds altogether. RA is an auto immune deficiency. your auto immune system attacks your body wherever there is anything not right. you need anti-inflamatories to keep the inflamation away. back when i first diagnosed with RA they didn't have the meds they do today. i ended up with deformed hands and feet. i've had 30 surgeries. all this can be prevented [surgeries] by meds that work for you. so don't give up or ever stop your meds. RA patients do not have a choice. you're damned if you do and damned if you don't. there are side effects to all meds. the doc will find the right meds for you, so hang in there. feel free to reply and ask whatever. there is so much i could tell you. take care now. dolly
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Date: 04.12.2010
From: KayJay

Subject: Re: hi again

kazzie hope they can give you the pen as it sounds like your stomach dosn't like the meds - 40 mg phew!! - anyway hope it all works for you having an upset stomach really brings you down. I've got gallstones and they moved the other week and I was sooo fed up and in a lot of pain. Good Luck ;0)
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Date: 04.12.2010
From: dolly

Subject: Re: hi again

kayjay, do you have a health food store where you live. a place wheren you can buy vitamins, etc. my neice had gallstones and was scheduled for surgery. i sent her to our health food store and told her to buy these pills that i heard about, and they worked. she didn't need surgery. they scanned her and they were all gone. they are called "devils claw". they're in a orange box.[last time i looked the box was orange] what i was told from the person that told me about them was these pills dissolve the stones. you take them for a couple of months. they don't interfere with other drugs because they come from a natural plant. you can give it a try. they won't hurt you. take care now. dolly
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Date: 04.12.2010
From: KayJay

Subject: Re: hi again

Thanks dolly will google it and see what it says !! I've asked the GP about some salts that supposed to ' dissolve ' them but he said that they just come back and the stones have to be made of the right stuff to work [ I think they can be cholestrol or calcium or something like that ? ] and not to worry if they move and don't cause continued pain. It's just a pain [ literally ] when they do move. I remember my old Grandma showing me hers years ago after her emergency op . She kept them in an old glass jar after she had them out . Urghhhh ....... She was right proud of them !!
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Date: 04.12.2010
From: KayJay

Subject: Re: hi again

Dolly just Googled Devil's Claw and guess what ? It's recommended for all types of Arthritis !!

Check this link :

http://www.pmshealthcare.co.uk/Devils-Claw
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Date: 05.12.2010
From: dolly

Subject: Re: hi again

hi kayjay. glad you found that info helpful. i also heard that devils claw is good for alot of things. hope you do try it. keep in touch. talk soon. dolly
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Date: 05.12.2010
From: kazzie

Subject: Re: hi again

hi dolly again i have ra just over about year and half but its gettin worse and the pain ive been in this week is makin me think yes i need meds so goin have totry again ,but someone told me that they have arthritis and tried evrydrug and now all they take is cod liver oil capsules .have you ever tried theses i am veggie so would find it hard to take theses just wonderin if you have thanks
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Date: 05.12.2010
From: dolly

Subject: Re: hi again

hi kazzie. the first thing i would do is ask this person if they have RA and for how long. if it's a long time they would know that long time ago they did not have the drugs that they have today. i strongly suggest that you do not stop your RA meds. you can have withdrawal symptoms. RA patients need RA meds. you need anti-inflamatory drugs to keep the inflamation away as the inflamation with no drugs will contribute to deterioration. after having RA for 41 yrs my hands and feet have deformed because of no helpful anti-inflamatories[for me anyway] way back when i was first diagnosed. your RA is at a very early stage. you can get meds to stop it from getting worse and believe me it can get worse, i've had 30 surgeries, i know. it usually takes a "cocktail" [more than one med at a time} and takes awhile to find the right one to work for you. i take humira, prednisone, and hydromorphone[painkiller] for my "cocktail" and it works enough for me to have less "flare ups". so kazzie i will strongly suggest again do not stop your RA meds. hope i've been helpful. talk soon, dolly
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Date: 05.12.2010
From: kazzie

Subject: Re: hi again

hi well am starting mxtject again tomoz and axcoxio tonight as well as amytriplyine at night to helpn sleep with pain and then in 2 to 4 weeks the new drug then take para every 4 hours to try help with pain just hate takin all tablets but pain is really bad at mo i have only had it year and half ,how do you cope with it after 41 years .did it happen quite quick with you ?and have you ever had a bone scan ?thanks
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Date: 05.12.2010
From: dolly

Subject: Re: hi again

hi again kazzie. wish we didn't live so far apart cause i know i can help somewhat, if we could sit together over tea and talk. i live in B.C. Canada on Vancouver Island, very damp place, but beautiful. people call it "God's country" you hang in there, like i say it takes time to find the right "cocktail". before i had my son at 23 [my only child] my pains were "tolerable" with just tylenol. after i had my son WELL, i did suddenly felt like i got beaten with a bat or something. i started to deteriorate fast which lead to so many surgeries. yes i've had a few bone scans and they do tell alot more than xrays. once i had to insist on having one done on my knee which resulted in a knee replacement and did not show much on the xray. kazzie please keep replying as much as you feel like cause i really do want to help you as much as i can in your early stage of RA. talk soon, concerned , dolly.
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Date: 05.12.2010
From: kazzie

Subject: Re: hi again

hi thanks for that it be great to sit and chat but am uk lol a bit far to go .i have had a bone scan last week and it shows at this stage my hips were bad with wear and tear whatever that means .but my shoulders and back feel like i have been beaten up on tues when the sickness came i couldnt even move my partner had to lift me on and off the loo believe me with pain it felt like evry bone was broke in my body ,even my hands wouldnt work .but i couldnt get out of bed this morn body was all stiff ect .good job my partner is here or god knows what would happen .am 36 and have 2 kids one 16 orther 4 . did you ever suffer with sickness .would be great to talk another way do you have facebook or can give ya my email as i dont always get to get on here but have mail on my phone and really appreciate your help x
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Date: 05.12.2010
From: dolly

Subject: Re: hi again

hi again kazzie [for third time] lol, i'm still learning about this computer stuff so please bear with me. you sound like me after i had my son. before my son i could manage with just tylenol. after my son it was like i got beaten with a bat or something. it took awhile for the docs to find the right "cocktail". i know it's horrible kazzie but be patient your doc will find the right one for you. i did get sick from alot of the RA meds and the doc just kept changing them till we found the right ones. i'm on prednisone and i increase the dose for a day or two when i have a "flare up". i'm also on humira and hydromorphone[painkiller] sorry it's taking so long to reply, i don't know what i did to lose the other messages. my email is dollathome@hotmail.ca and what's yours. talk soon.
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Date: 06.12.2010
From: dolly

Subject: Re: hi again

hi kazzie . i forgot to answer your question about having a bone scan. yes i've had a few bone scans done. one time i had to insist on a bone scan on my knee. the xray on my knee didn't show much but the scan showed i had a torn ligament away from the joint and the knee cap had a chip in it. i ended up getting a knee replacement after the swelling in my knee would not go down. it was swollen for 4 months and i couldn't bend it. scans are better than xrays. they show alot more than xrays. talk soon and take care.
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Date: 06.12.2010
From: kazzie

Subject: Re: hi again

hi dolly i have sent a email to you if i put it right .i had a terrible night for one my son has been up all night with bad cough he had to get in bad with his dad and i had to get in his cause i am tryin not to catchn it and as he was coughin so much he kept bein sick .so not only has my partner to see to joel he had to undress me as my shoulders or so sore at moment and legs that i can hardly move i couldnt sleep as once in bed i cant turn over cause in to much pain .i honestly never thought id feel like this i try and beat it but when you cant even pull the covers overyour self cause hands dont work its so depressing ,but am starting metoject today so am hopin that works till can get the orther and lso started axcoxio again for inflamtion .as for the bone scan it only showed my hips were bad my mail is kaz140674@aol.com
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Date: 06.12.2010
From: dolly

Subject: Re: hi again

hi kazzie i got your email and have replied. talk soon.
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