Date: 17.03.2012
From: Em
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Subject: Flare up!
Hi fellow sufferers, had RA for years and just when you think all the damage is done you get another flare up and told to increase steroids. That's fine for a while but I don't like to take that many of them. Knees are swollen, wrist, kneck and shoulders, just feel as if the whole body has ceased up. Told to increase Methatrexate to 15mg, but don't feel any different. The damage to my fingers and feet in particular is dramatic and I did'nt think they could get worse but another finger is off in another direction. Sh.. I am unburdening all my frustration out in this message. Sorry, but it's a particularly bad time. Plus I know you all can identify with my feelings. Thanks for listening. x
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Date: 17.03.2012
From: Colin
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Subject: Re: Flare up!
hi Em always found methatrexate worked petty well , on 20mg with 6 folic acid a week as for steriods , dont like them myself , they realy never helped much with RA but life saver with asthma realy think you should ask about trying one of the newer drugs like unti Tnf (enbrel or similar) , they can make huge differance to RA
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Date: 17.03.2012
From: Em
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Subject: Re: Flare up!
Hello, Thanks for replying, even the fact that you have makes me feel brighter. I have been told I can't have those as I have a lot of bronchial problems and take a lot of antibiotics. I have had Methatrexate for years and it's just the last 18 months that I feel it doesn't work for me any more. Tried Leflunomide for a few weeks but gave me high b. pressure and did not agree in general. I sometimes feel a nuisance when I tell the professionals that things are'nt working, but I feel at a dead end at the moment. Em
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Date: 17.03.2012
From: rhona
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Subject: Re: Flare up!
Hi Em, I agree they are not the answer long term, i am on a small dose at the moment but hope to get off them soon, it can take a wee while for the MTRX to work and they usually now use a combination of drugs to try and stop or slow down the joint destruction,I would speak to the hospital and find out what else they can give you other than steroids. Hope you feel better soon.
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Date: 17.03.2012
From: Em
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Subject: Re: Flare up!
Hi Rhona, I am always on 4mg of prednisalone along with MTRX, and as I said it worked well for a long time. But for some reason, not for a lot of months now. I had almost forgotten how painful flare-ups were, and even thought I was'nt gonna get any more damage. So am taking it badly, but we have to battle on. I wish there was something new to take that did not increase the chances of infections. We will all have to put our faith in the scientists and hope for miracles. x
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Date: 17.03.2012
From: rhona
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Subject: Re: Flare up!
Hi Em, I agree, i hope they find something like that soon. I have had R/A for over 11 years now, i take 20mg MTRX, Sulphasalazine, plaquenil and enbrel injections that i started 10 weeks ago and recently steroids as i am in lots of pain and my walking is pretty bad now, i had hoped the enbrel would be the answer but i dont know that it is helping much as my hands are now swollen. I just hope like yourself that they discover something soon that helps us all and doesn't have bad side affects. Take care x.
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Date: 17.03.2012
From: bsk
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Subject: Re: Flare up!
Hi Em, I am suffering with oral thrush from prednisalone and antibiotics. It's really horrible but I need the pred until RA under control with other drugs. Excuse the briefness of my post but feeling rotten.
Hope you feel better soon.
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Date: 18.03.2012
From: Em
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Subject: Re: Flare up!
Hi bsk, Sorry to hear you are suffering too. It really is mind boggling, you take something for one ailment and end up with 1 or 2 more to deal with. Best wishes with it all x
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Date: 18.03.2012
From: Em
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Subject: Re: Flare up!
I am glad I discovered this forum as it helps to get it all out of your system, sharing it with people that understand. Sometimes you think family and friends get sick of hearing it.
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Date: 21.03.2012
From: Em
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Subject: Re: Flare up!
Hi everyone, I have had the 3rd session of acupuncture for a really stiff neck,back left side,and my left shoulder is very damaged. It does not seem to be helping and the physio said she will refer me to a physio who specialises in arthritis, she said this will probably be exercises in a hydrotherapy pool. Has anyone tried this therapy and does it help. Em x
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Date: 22.03.2012
From: davina
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Subject: Re: Flare up!
hi em i have found that steroids do help me but need to be at least 15mgs really and like you i don't like to take them as they make me put on weight and i'm big enough already.
i agree i can't compalin to much to family as they don't understand what its like alday and then you come on here and find people that see all the pain with you xx bsk hope your feeling a little better it just seams as all people on the new anti-ntfs are just fighting infections at the mo, my love is with you xx
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Date: 22.03.2012
From: marlene
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Subject: Re: Flare up!
Hi Em, hydrotherapy is great for us as the warm water helps to let us excercise with ease. The down side is just when you feeling all the benefits it stops. Once a week for six weeks is what is usually offered.Take the oppurtunity. Wish you luck take care.
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Date: 23.03.2012
From: bsk
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Subject: Re: Flare up!
Thanks Davina, sweet of you to mention that.
Aren't you starting on Cimzia?
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Date: 23.03.2012
From: davina
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Subject: Re: Flare up!
bsk i did start on it had 3 doses since jan 18th due to the worse infections i have ever had.
in jan i got broncitis for 3 weeks and then end of feb 2 weeks of chest infection and now 10 days in to broncitis, ear and eye infection and layerngitis. i've had my appointment with my rheumy brought forward a month so will be end of april but really i have now decided i'm going to get pregnant instead. i have tried many meds in 2 1/2 yrs and now i'm tied of jumping from med to med to please the hospital i always wanted my children close but when i do have another child my son will be about 4 and i don't want it to be much longer. xx
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Date: 23.03.2012
From: bsk
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Subject: Re: Flare up!
Good decision. Maybe by the time you've had your second child there will be something better on the market. The infections really get you down I know, had so many myself. Can't imagine what it is like to have to look after children as well.
take care. xx
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Date: 23.03.2012
From: davina
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Subject: Re: Flare up!
bsk these infections have been so bad that i can't take any more thats why i decided enought is enough, like you said hopefully in a years time they will have different treatment. xx
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Date: 24.03.2012
From: Deborah
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Subject: Re: Flare up!
Hi Em,
Just wanted to let you know i have been having a flare up my hips hands back feet and left knee and wrists are really hurting at the minute but it is not a real bad flare up were you are in bed for week but did have to go to bed on monday as i knew that if i did'nt i would end up worse i am on 25mg mtx injection and have been on mtx for nine years but the larger dose i have been on for 5 months and to honest at the start when i started mtx it worked very well and as the dose increased each time i took a flare-up it did really help and i never have had any side effects never sick not even a cold sore and felt really well on 20mg was on it for about 2 yrs. but since i have started the 25mg dose it just makes me sick and has not really helped the pains much so i now know i need a change of drug.
Hope you are feeling a bit better and if they want you to increase your drugs i would as i know without being on these drugs i would be sitting completly crippled now were as I am still on my feet and the specialists cannot believe how well my joints have been preserved. although i have psa not Ra although i know they are both inflammatory diseases and hope this info has helped you and you get sorted and feel better shortly. Deborah xx
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Date: 24.03.2012
From: Em
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Subject: Re: Flare up!
Hi and thanks to everyone who has replied to me. I so identify with a lot you have all written about arthritis. The battle to get the medication right, the pain and the frustration of it all. I was annoyed I could'nt try the 'biologicals' cause I have bronchiectasis which means I already get a lot of chest infections and antibiotics. After reading a lot of what has been posted on here by a lot of you, I think the doctors are right and I should'nt take them. So thanks, I have a better understanding of them now Hope all are feeling 'good' today. Em x
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