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Date: 18.04.2014
From: linda Bradley

Subject: New meds

Hi folks,
Finally been put on another med.... Sulfasalazine... fingers crossed this one will work. Without me feeling dreadful.. ;-)
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Date: 18.04.2014
From: marlene

Subject: Re: New meds

good luck Linda hope it goes well for you!!!!!
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Date: 19.04.2014
From: bsk

Subject: Re: New meds

I hope it helps, Linda.
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Date: 19.04.2014
From: Linda Bradley

Subject: Re: New meds

Thanks Marlene and bsk :-)
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Date: 20.04.2014
From: Julie

Subject: Re: New meds

Hope it makes things better for you. What other meds are you on? I take sulpha aswell, used to be two a day now its 6, 3 at breakfast and 3 at tea, I don't know about anybody else's sulpha but mine are massive and make my wee really orange!!
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Date: 20.04.2014
From: helen

Subject: Re: New meds

Hello Linda. Sorry not been around lately feeling pretty rubbish. Iv been on sulph. As long as you have your check ups things should be fine. I had awful side effects but tbh that's me I also couldn't take mtx and leflumimide so now on nothing but not thru choice. Will you be continuing with mtx injections or have they finished aswel. How are you feeling is work any easier for you now.
Take care
Helen. Xx
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Date: 20.04.2014
From: Willis

Subject: Re: New meds

Hi Linda, hope you getting results with sulf and are keeping well x
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Date: 21.04.2014
From: linda Bradley

Subject: Re: New meds

Hi Julie, I'm only on Lansoprazole... for my stomach reflux. Just started on one tablet and working my way up.. have such a dodgy stomache! They said it would make my pee orange lol. I've found I have a headache... hope the side affects dont last long.

Thanks willis, early days yet, but not too bad thanks. x

Hi Helen, god youre still suffering?.. poor you.
I'm not on mtx injections now, couldnt tollerate em!
Work is still busy and nothing has changed... still waiting to go in office, can see it being June or July at earliest ;-(
Why arent you on anything? is everthing making you ill?
Really feel for you xx

Thanks for all the replies
Linda xx
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Date: 21.04.2014
From: helen

Subject: Re: New meds

Hello Linda. My wee was orange with sulpa I take omoprazole for my reflux. I don't seem to tolerate most tablets Dr saying maybe a fibromylargia symptom as there's many with no answers why. Consultant thinks I need a rest on treatment and concentrate on this fibro thing. Not happy and not got appt until sept. I also remember him saying iv tried the normal ones and the other will cost so in other words don't wanna pay.
Hope you get on well with the new drug but keep getting your bloods checked.
Helen. Xx
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Date: 22.04.2014
From: Linda Bradley

Subject: Re: New meds

Hi Helen, Thats awful not wanting to offer you the expensive drug, different matter if it were him! and as for wailting till Sept.. its ridiculus. It sounds like all rhuemy clinics are the same.. understaffed, underfunded, its so fustrating.
Did you take folic acid when on sulfa? she didnt tell me, and I'm trying to get hold of her! The slightest thing seems to make me sick... sick of it.
Sorry you're not feeling great, take care
Linda xx
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Date: 22.04.2014
From: helen

Subject: Re: New meds

Hello Linda. No I didn't take folic acid with sulpha only with mtx.I did find iI was yucky and icky when they was getting into me. I think I remember you go up daily or wkly On sulpha. How many different drugs have you been on now Linda. Iv taken three now. Hope you manage this tablet its about time you felt a little better.
Good luck. Helen. Xx
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Date: 22.04.2014
From: Linda Bradley

Subject: Re: New meds

Hi Helen, I've only been on mtx tabs and injections. I've to take Sulfa one a day for 2wks, then 2. Taking it slowly cos of my stomach. You seem to be struggling a long time.you must feel rock bottom.
Linda.. xx
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Date: 26.05.2014
From: helen

Subject: Re: New meds

Hello Linda. How are you doing are you feeling any results on the
Sulpha? Iv Started hydro physio only managed one 20 mins as not been good. Have had flare up with fibro and arthritis. Feet are horrid and pain going from heal up the calf feet swollen knees huge with the osteo and painful back is the usual bad. The handsÊareÊhuge then iv got sore muscles and feeling of bruising over body with the fibro. Fatigue is playing a big part as slept the weekend away. Nobody seems to wanna know. Iv weaned myself of pregabalin as put on so much weight and consultant said its not good for joints. Anyway off them now but as they are nerve ending tablets have awful neuropathy pain in leg and foot. Thinking of asking for some steroids but face has just slimmed down!! Anyway that's my news not very exciting is it. Very fed up.Love to you and all
Helen. Xx
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Date: 27.05.2014
From: Linda Bradley

Subject: Re: New meds

Hi Helen, you are having an awful time aren't you. Hope the hydro physio works for you. You must be fed up. I've not noticed any improvement as yet, working my way up to 4 tablets. As for work I'm still waiting, they have someone for my job, but the boss has been off. Hopefully I'll fine out 2morro, seeing my rhuemy nurse in 2wks, my esr has gone way up. So my news isn't exciting either.
Anyway, take care
Linda xx
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Date: 05.06.2014
From: helen

Subject: Re: New meds

Hello Linda how are you doing on the new drug hope no nasty side effects. I'm having awful down time. Not sleeping just making an hr at night then I'm cat napping. Can getoutta bed at 10am and be asleep again by 11.30am sleep then awake then doze have no energy awful joint pain. So today I phoned the support nurses explained that I'm not on any drugs for arthritis but feeling bad any chance of a course of steroids that usually picks me up. She's unsure so gonna try and SPK to consultant try and get me a sooner appt than Oct to see him. She will also ask about steroids and get back in touch by next Thursday. No wonder I can't be bothered in asking for help. I'm sure fibro is playing a part with my ache but its my joints which are in pain. I know the physio has called me a complex case but surely there's worse people than me. Feeling sad tearful fed up tired and why do I bother asking for help for now not next WK or myths down the line.
Have you heard anymore from your job change. I'm sure your Bonn feel better for it.
Helen.xx
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Date: 08.06.2014
From: linda bradley

Subject: Re: New meds

Hi Helen, sorry not answered sooner, got a new laptop and just getting used to it lol
Oh dear sorry you're not feeling any better. No wonder you're tearful etc. I hope they sort you out, Oct is so far away and you can't carry on like you are. It really is disgraceful the way you've been treated.
As for me, I'm tolerating the sulfy, just my feet and hands have been bad this last week, I'm blaming the weather! Have to see the nurse in 2wks again to see if my esr has come down. On the work front, its still the same.. but hopefully things will start moving in the next few weeks, the lady from occy health has been on holls. Red tape you know!
Anyway good luck for thur's
Will be in touch
Linda xx
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Date: 13.06.2014
From: helen

Subject: Re: New meds

Hello Linda. Had a phone call today to say my crp has gone up since April. Nurses going back to ask the registrar what the next step is. Steroids or some sort of treatment. Iv had sulpha, Mtx and another which I can't remember now. Hope its not steroids as only just lost my moon bright red face that was from February. Iv also come of pregabalin which is for nerve pain but put on so much weight so decided to wean myself off with the help of the Dr. Iv lost nearly a stone in just over the month but my pain levels have increased just can't win can we. Next episode when they get back to me. It just shows we know our own bodies and new it just wasn't fibromylargia. Take care
Helen. X
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Date: 15.06.2014
From: linda bradley

Subject: Re: New meds

Hi Helen, at least they are taking notice of you, think thats half the battle. Is shows how these meds affect you. Hopefully I'm starting my new job on the 1st July... at last! I see mu rhuemy nurse again tomorrow, see if my esr has come down.
Hope they sort you out soon
take care
Linda xx
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Date: 01.07.2014
From: linda bradley

Subject: Re: New meds

Hi Helen, how are you doing?
I am starting my new hours at long last. Not going in the office tho, but doin what I'm doing now..(suport worker in x-ray) but only working mornings. and only doin 16 hrs, which is brill.
Hope you are getting sorted
Take care
Linda xx
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Date: 05.07.2014
From: helen

Subject: Re: New meds

Hello Linda. That's good news about your job I'm pleased for you. Life is gonna be better for you. How did your rheumy appt go has your levels reduced with the sulpha? Iv not got anywhere with my latest increased levels. Had a shitty telephone call from the rhuemy nurses saying the clinic nurses will see me but doubt they will treat me as I might be in more pain and levels increased but they might think its not enuff. So I cancelled. I had physio/hydro last week who is connected with the rhuemy clinic so I confided in him how I feel how they make me feel and don't feel strong snuff to put up with their remarks. I'm suffering but also with fibro and neuropathy in my right foot. I'm so fed up completely. Iv been attending hydro but he can only fit me in fortnightly so don't feel its helping ATM. I'm trying to walk the dog daily even if its up the road and back. I'm very slow but that's from back and knees causing it thru pain.
Anyway if I hear anything from the physio about my complaint I will send a post.
Take care I'm pleased your work has been sorted at long last. Forgot to ask do you feel better from taking sulpha.
Helen. Xx
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Date: 07.07.2014
From: linda bradley

Subject: Re: New meds

Hi Helen. Sorry to hear you are still suffering. Its crazy they arent doing anything for you, you must be feeling very low. Wish I could help you.
My esr is coming down slowly, not feeling any benifit yet. got to see her again in 2wks. Also got an appt for podiatry.. but feel better in myself. No headaches and nausea, which is brilliant
Hope they do sort you soon
Take care
Linda xx
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Date: 31.07.2014
From: helen

Subject: Re: New meds

Hello Linda. Sorry not replayed sooner. Not too good in body and mind. So fed up with the rheumy clinic iv not contacted them andthey not me. My next appt is oct now was sept. So before I go I shall have bloods done so they can see what's going on. Iv also had problems with my teeth and jaw so dentist sending out to the hospital for xrays and extractions she's thinking arthritis in the jaw. Have your heard anything like this before??
Hope your OKish. Be good if this new drug helps you be good to sort your feet out. Mine are still painful and also swell but have been told its a fibromylargia related symptom so maybe iv a bit of both. Hope your enjoying the lovely hot weather.
Take care
Helen. Xx
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Date: 04.08.2014
From: Linda Bradley

Subject: Re: New meds

Hi Helen, oh god, you are having a tough time. :-( I've not heard of this before, although my jaw aches.. right by my ear! To be honest I think they lose interest (clinics). I've got new insoles for my feet, but it's not helping. The joint on my right foot (little toe) is really painful. But my new hours help, my appt with the rhuemy clinc has been cancelled again! Not good is it? Can you not ring up and ask for a cancellation? Anyway take
care
"
Linda xx
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