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Date: 29.04.2014
From: julie

Subject: For Colin

just wondered how you are Colin with the new meds? Not seen you post for a while was a bit worried.
Julie
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Date: 29.04.2014
From: Colin W

Subject: Re: For Colin

hi Julie , think tocilizumab is working a bit & having second infusion on the 9th of may so expect will have more improvement , dropped the steriods from 40mg to 30mg/day but not sure about dropping any more before next infusion because some joints are playing up , mostly good days now with fewer bad ones

have you had any luck getting on tocilizumab , realy think it would help you alot , I would push for it & try get your rheumy nurse to help if you need it ,
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Date: 29.04.2014
From: Julie

Subject: Re: For Colin

that's good news Colin, lets hope it gets better as the weeks go on, have you any side effects? Good to drop steroids but its hard, I went down to 5mg, it wasn't good so I put myself back up to 7.5 which is better.

I go on 6th May to discuss going on tocilizumab, but first (tomorrow actually) I am being tested for Lymes Disease, to my shock and delight my g.p. agreed straight away.

This is mainly because during the six months prior to being diagnosed with RA I had a terrible rash which wouldn't go, it was from a bite on the front of my leg,(we were always walking on Moors or in Lake District) then I got migrating pains starting in right groin lasted 24 hours then went down to my right knee, again for 24 hours, then to my right knuckles, next it did same but on the left hand side, each time lasting 24 hours. I also had a huge red line going from my top arm muscle to my elbow, like a vein full of red blood!! nobody commented on any of this, just said to take anti inflammatory. I was left bedridden for days, without any strength in my muscles, even my hubby had to lift me to stand up to get out of bed, this all cleared up with 2 week course of antibiotic but by then I was attending rheumatology clinic where they said it was RA. The rest is history.

My g.p. did say last week that he never thought in a million years that I would have been diagnosed as having RA.

But I need to be sure for my own peace of mind, I don't want to be frightened of going onto this trial taking medication fearing I might have some kind of bacterial infection going on which could be dangerous.

I hope its not Lymes but don't want RA either lol, don't know which is worse!! Lymes does mimic RA, it also flares. Plus I know that each time I have been on antibiotics, the same that are used for Lymes, I feel good, no symptoms of anything which I find strange. But hey that's me, probably people will say I am still in denial but I must get this fear out of my head.

Keep us all informed of how you are doing it does give us hope to hear someone is feeling better.
take care Colin
xx
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Date: 02.05.2014
From: Colin W

Subject: Re: For Colin

hi julie , had to look up Lymes Disease, had no idea what it was , were you positive for rheumatiod factor , know not everyone that is positive has RA but if you have joint problems then there is a good chance it is ,

as for myself , had realy bad day wednesday , could hardly walk but getting bit better now , & going for second infusion next friday , want to get my steriods down but still on 30mg & think may have to wait for couple weeks before dropping it down , the problem is that steriods will boast the white cell count & stop drugs like methotrexate working

hope you get some answers soon with the test
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Date: 03.05.2014
From: Julie

Subject: Re: For Colin

Hi Colin, Sorry your feeling a bit rough, I am aswell my hands are sooooo painful could saw them off!!! Why do they give us steroids if it stops mtx working whats the point???? well apart from the pain relief:)

Well after all the news the last couple of days about Lymes they will almost certainly think I am a hypochondriac (spelling?) but I have been thinking this now for a long time.

First time I went to see a rheumy I went private, I was already seeing a private consultant about my symptoms which at first I thought were thyroid related, he asked if I would go see a colleague of his, more money!! anyway went to see the rheumy consultant and he immediately said I had RA, he didn't look at any blood tests I had done a few days before because when you go private they cant access NHS records, so he referred me to his NHS clinic, obviously I had bloods done there, but nobody has ever said to me about rheumatoid factor, only ever say yes you have RA. Which is fair enough but I have again got a staphycocous infection, 4th in a year, I had this when I went to see private man I was on antibiotics then when I had first blood test. This is why I am worried about going onto Tocil in case its still there, I am at clinic on Tuesday so will be able to ask more questions.

My daughter rang me yesterday and asked if I heard about Septic arthritis which is caused by staphlycocous bacteria, this is something else that all my symptoms in beginning were like. I just want to know 100% what is wrong with me and just get on with being treated.

I am so fed up at minute and can cry at the slightest thing everything is too much, house is on market but I don't want to move, cant stand listening to prospective buyers saying what they are going to change, cant find anything as nice to move to, ohhhh I am in such a mess with myself. Cant even play on xbox I hurt too much.

Don't listen to me Colin it will drag you down, you keep getting better you have gone through enough.
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Date: 03.05.2014
From: Colin W

Subject: Re: For Colin

Julie , I would ask your GP to do rheumatiod factor & a new test for rheumatoid arthritis that measures levels of antibodies that bind citrulline modified proteins (anti-CCP) both can come back negitive but still have RA , there is about 200 different arthritis but with being treated for RA allows us to have drugs like tocilizumab & not available for other forms of arthritis

on BBC breakfast they were talking about Lymes this morning but cant find any link to post , was talking about ticks causing it , as kids our family had horses but never had one bit me , those used to burn them off with a fag stubb at the time

btw understand about your house , we got ours in mid 80s but its large late victorian house but always need loads of repairs , at the moment we need to have the roof off & renailed , all the old nails are rotten had slates move over the winter , the idea of selling & moving to somewhere smaller & cheaper to look after sounds good but the thought of moving would put me off
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Date: 03.05.2014
From: Julie

Subject: Re: For Colin

Hi, I did watch the programme it was interesting, but it didn't give any info that I hadn't known about and didn't give any reassurance about NHS knowledge on it, I suppose at least I am seeing rheumatologist and they are the ones who you would be referred to. Like the person interviewed, we were always hiking either on Dartmoor, Lake District of near where we live the Yorkshire Moors, in fact my son in law said this morning he remembers removing a tick from himself last time when we were in Lakes, horrible little critters they are (tics I mean not my children)

I have written down the tests to ask for cant do any harm asking.

Like yourselves we got this house in 80's so been here long time, got gorgeous views of open countryside which will break my heart to leave but a bungalow would make life easier, my hubby is finding this one a bit too big as he has to do most of garden now. we'll see what turns up.

thanks for advice Colin and for not saying I am in denial cos that's what they are going to say to me, I can hear it now - but I will be well prepared I have my daily diary from 2012 for backup. they will lock me up lol. Right Im going to try to push lawn mower its lovely outside might cheer me up a bit.
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