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Date: 09.04.2009
From: Angela

Subject: New to Forum

Hello everyone,
I am 53 and in December 2008 was diagnosed with sero negative arthritis which I am told is r.a. without the factor.
Mine started in February last year with a swollen wrist. Then it hit my shoulder, then my knee swollen up as well.
By October I was off work laid up and very poorly, and by December diagnosed.
This has hit me like a ton of bricks.I started sulfasalizine last week after a 4 month wait to see the med nurse in which time things have got worse because of the delay.
I now rely on a imobility buggy to get around and need a stick all the time.
Although I have been taking prescribed painkillers and ibrofen, my ESR keeps rising and rising, and it will not go down. The last reading was 101 anyone got any advice please?
I have also tried celedrin tablets and cream.
I have to say I thought the cream seem to instantly relieve my swollen knee of discomfort, I do tend to keep it permanently strapped now to keep the swelling down which I think helps also.
It is the ESR that really worries me more than anything it has a mind of its own, and it makes me feel I might have something else, that they haven't found.
Another question does anyone think being my age when things start to change could make ESR worse??
Kind Regards
Angela
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Date: 10.04.2009
From: Jo

Subject: Re: New to Forum

Hi Angela. My name's Jo and I am 40 and I have had it approx 8 years. Similar to you I started off in an extreme amount of pain. It seems like they are starting you on the gentlest medication like they do at the start. Sometimes it takes 3 months for the drugs to kick in! I started off with Sulfasalizine and Methotrexate but they didnt agree with me so I went onto Lefluonomide. It really is touch and go at the beginning and they are trying to find the medication which suits your body. DONT GIVE UP - it will get better! My knees were really swollen at the beginning and I could hardly walk. I went back to my Consultant and asked for a stair lift and he said 'I'm not giving up on you yet!' He drained both my knees of the fluid and injected them with a steroid injection and since then (touch wood) I havent had any problem with my knees since. I am now on an infusion of Retuximab once a year, I take daily prednisolone 5mg and Lefluonomide and a few ibuprofen a day and a lot of people wouldnt even notice I had an illness. OK, yes we are all individual and the disease strikes us all in different ways but try and keep positive because they will get your medication right in the end and hopefully you will live a half normal life again.

ESR is the amount of inflammation in your system so it indicates how active the RA is.

Keep positive.

Jo x
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Date: 10.04.2009
From: Angela

Subject: Reply to Jo

Thanks for your reply Jo. I might ask about getting my knee drained, didnt know about that one.
Thanks for your support I do try very hard to be positive.
It is good to hear there is light at the end of the tunnel. Stay well.
Take Care
Angelax
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Date: 11.04.2009
From: yesmeducky

Subject: Re: New to Forum

Hi Angela,
Welcome to the forum. Sorry to hear you're having a difficult time. I'm new to RA, was diagnosed 5 weeks ago and on week 5 of the sulfa meds which i do believe have started to take effect. The stiffness i was having especially in the morning has greatly improved in the last couple of days. I haven't experienced the knee problems you speak of so can't help there. I hope the sulfa works for you too with little side effects. Best wishes and keep us updated. Heidi
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Date: 11.04.2009
From: Angela

Subject: Reply to Heidi

Thanks for your reply Heidi.
I am so glad the sulfa med is taking effect for you, I am counting the days for mine to start.
It is refreshing to hear you are improving.
I sincerely hope it carries on.
I will keep everyone updated, and I hope you do to.
Take Care
Angela
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Date: 13.04.2009
From: christine

Subject: Re: New to Forum

hi angela, my name is christine im 49, and was diagnosed 3yrs ago, ive tryed all the standard drugs mex, sulve, you name it ive had it, i ended up in hospital 3 times last year, ive had both knees drained 3 times,my esr was 121, its now 42, im on anty tnf drug called embrel, im much better, i have to inject every week, the day before my injection, i can feel my self starting to flare,i cant understand why they cant just give every one this drug, its not fare because what it comes down to is money, but we have to suffer in the mean time, good luck and stand your ground, dont suffer. christine
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Date: 14.04.2009
From: Angela

Subject: Reply to Christine

Esr 121 OUCH! Poor You, I thought mine was bad.
I am going to ask for my knee to be drained on thursday when I see the Specialist and for an injection as Jo above did.
Thank goodness you have found medication that finally suits you, it sounds like you have really suffered.
Thanks for letting me know about Embrel that is another option I am now aware of, and will ask about it if need be.
Thanks for your reply and good advice.
Stay well
Angela
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Date: 03.05.2009
From: Angela

Subject: Re: Update on taking Sulfasalizine from 9/4

Hi every one, I have been taking sulfa for 5 weeks now, and I have had my knee aspirated, and injected with steroid, and also my wrist was done. This was 2 weeks ago.
I am pain free at last and walking without even a limp hooray!!!
My ESR has come down from 105 to 42. Doc says that I am pumped up with steroids thats the main reason I feel so good, but I think the medication is working to. I have had steroid injections before and my ESR still stayed high, and I was also very stiff and uncomfortable.
Anyway dont care feel good today thats the main thing.
I have had no uncomfortable side affects either, apart from a bit of a grumpy tum now and then.
Hope my good news gives hope to someone.
Angela
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Date: 08.05.2009
From: Jill

Subject: Re: New to Forum

Hi again Angela, that is fAB news, pleased for u....I guess the Sulfa is workinmg for u, as u have noticed the difference in your Bod! Im not having a goood day today, woke up with pain in Neck(usual pain tho) shouldrs, thoracid spine, Knees, hands and feet today, think im in a Mini flare up... they dont last as long now im on the Enbrell injections weekly, so this shldnt last more than a ffew days.... heres hoping tho, things change with me rapidly...oh well, been well for a goood few weeks apart from my absesses lol....anyway weel done,

Jill x
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Date: 08.05.2009
From: Jill

Subject: Re: New to Forum

Hi Christine

when did u start Enbrel? im on that, and i must say, since i started that(year ago) ive been a lot better, less flare ups etc(altho in a little flare up at mo) i take it with the Mtx, do U? glad yu a lot better on it

btw that enbrel drug apparently costs the NHS ten grand a year! but hey, we deserve it, the prob is, they cant give it to everyone that isnt as bad as some of us, becos its very Toxic on the Liver, they truly have to justify anyone that goes on it, becos of the side effects, thats y we are carefully looked after, bloods done monthly etc


take care

Jill
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Date: 12.05.2009
From: christine

Subject: Re: New to Forum

hi jill sorry im late getting back to you, i was on humeria first that was for 6wk, but had to stop it because the injecton site was a mess, im on my 9th embrel injection and i think the same thing is going to happen with this, got to inject tomorrow, and go to the nurse at the hospital on friday, to show her whats happening, after i inject the injection site swells and is very hot and itchy, but its not as bad as what the humeria was doing, got a feeling im going to end up on the intrervinal drug, where you go in hospital for the day,im on a little flare at the moment as well, my wrist swelled and hot, and my left knee filling up, sick of haveing them drained,no i dont take the mex it makes me sick and my joints actually swell with it,i know jill its 10 grand a year, but its not fair you have to fail the standard drugs first, hope your well jill. christine.x
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Date: 13.05.2009
From: Angela Callaghan

Subject: Re: New to Forum

Hi Jill, Sorry for the delayed response, but just thought I would give myself a week or so to see if there is any changes.
I have noticed a big improvemnet in my bod, the stiffness has almost gone.
I am however getting a feeling that my knees (both this time) are filling up,and also my ankles feel swollen but noe are at the mo.
I am still walking okay although not to far, because if I do I feel a bit of a limp coming on, but apart from that I cant complain.
How are you feeling this week?
Ang
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Date: 13.05.2009
From: Angela Callaghan

Subject: Re: New to Forum

Hi Heidi, As you can see from my response to Jill I am much better. I was wondering though,as you are on sulfa to, I am fine taking it 3times a day but when I try to take 2 tablets twice a day I feel awful. I get a rapid heart beat and my digestion goes to cock. So much so that I have had to just keep at 3 a day.
Have you had this trouble at all? Ang
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Date: 14.05.2009
From: Jill

Subject: Re: New to Forum

((((((hugs for Christine and angela))))))Sulfa did that to me Angela...had to be taken off it, they the n put me on Enbrell with meth...much better......Christine, i think that would be the best option for u, my m8 who has R.A. is having that done soon.....I wld def take that option if i suffered how u do after each injection.... take a book, mite c some gorjus Doctors at the hospital LOLOL

Love Jill xxx
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Date: 14.05.2009
From: christine

Subject: Re: New to Forum

hi jill thanks for your reply, hope your well, i injected yesterday, and guess what its swelled and very itchy, i will go to the hospital tomorrow to show it them, i was feeling alot better on this as well, o never mind get it right soon hopefully, that david wasnt he cheeky wat he posted, they shouldnt be aload to talk to people with RA,cheeky bugger saying were all over weight and need to exercise, i was fumeing, may be if he had our pain for a day, he would under stand. christine.x
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Date: 16.05.2009
From: Jill

Subject: Re: New to Forum

lol so true there, funny how when u try and ask him something, he doesnt reply, jsut whinges on about what HE thinks!!...quack me finks LOl

Love to u xx
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Date: 21.05.2009
From: Angela Callaghan

Subject: Re: New to Forum

Hi there once again,
well it looks like I spoke to soon. For the last day or two my walking has gone down hill again. Obviously the steroids have worn off. I feel so peed off I was even thinking of going back to work (i have been off for 8 months) as I felt so me again and to add to that my statuatary sick pay has now come to an end, and my finances are taking hell of a knock, but at this rate I doubt I will ever get back and to be honest I dont think I want to now I am to scared of taking on the responsibility again then having to let people down if I get a flare up.
Any advice on how to tackle this problem please? If you have any confidential advice then my email address is leclure@aol.com
Look forward to hearing from you, take care everyone.
Ang
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Date: 23.05.2009
From: J

Subject: Re: New to Forum

(((((hugs to u Angela))) dont know what to say, but i do understand how u r, i want to go back, but as soon as I feel I can, another thing happens, just as u describe....wish i cld help, but I truly dont know what to say, accept stay positive

Take care

Jill x
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Date: 25.05.2009
From: Angela Callaghan

Subject: Re: New to Forum

Thanks Jill, I think this RA just takes some adjusting to, trouble is as we both know it has a mind of its own.
I do try to stay positive, and I know there is always some one worse off than me.
Oh well moan over.
Hugs back
Take Care
Angxx
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Date: 26.05.2009
From: jILL

Subject: Re: New to Forum

(((((hugs for u)))) I can see your the strong type tho...just like me LOL....dont stop me from moaning on here tho, I get so friggging angry i could...wait for it......SCREAMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMM!!!!!!! YEP DEF FEEL BETTER
XXXXX
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