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Date: 10.02.2015
From: Julie

Subject: ups and downs of RA

Hi everybody. As a lot of friends know I have been on toc trial for a while now, everything going okay my crp is down to 0.55, when I was told that on Monday morning by my research nurse I felt on top of the world.

Same day I had to have a blood test done at g.p.s because I had gone in with a slight chest infection last week, for which he put me on antibiotics. The blood test was done at 12.00 didn't think any more of it, but at 9.30pm phone rang it was a doctor from Hull Royal telling me that he was very very concerned because my neutrophils were 0.8. Blood test exactly a week before with my trial appointment it was just below the limit they like it to be (this was the reason I was taken off Mtx and plauenil to allow them to go up I think)and they were monitoring me.

After his phone call I felt sick, I was shaking, my heart was pounding and I was so frightened I couldn't sleep. The worse thing is no one else can see my tests because I am on a trial, so to him I hadn't had a blood test done since last October (IF ONLY!!)he cant see any of my results because of me being on a trial, he told me to go to my g.p's and that in his opinion I should not be on this drug trial!!!!

I made appointment to go see g.p. again and tell him of my phone call, luckily I got in at 9.00 this morning and he said he wasn't too worried at this stage but I had another blood test done there and then. I am now so worried about whether they have dropped even further I just want to sit and cry, if they ring up again from the hospital tonight I don't know what I will do.

I wouldn't mind but I have been really well and feel great, even decorating and doing other normal things, might have known something would go wrong.
Has anyone else had to go through this with their neutrophils.
Sorry to rabble on an on but I know this is where I will get some comfort and put my mind at rest. Any advice will be really appreciated.
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Date: 10.02.2015
From: Colin W

Subject: Re: ups and downs of RA

hi Julie , got to feel for you , if you are doing well on Toc & need to stop MTX ect thats not a bad thing , Toc been around for some time & its just the injections that are being trialed & expect they would give you infusions if it stopped .

this is the range they like Neutrophils 2.0-7.5 , btw mine went in the other direction along with my white cell which was 18 last time ,
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Date: 10.02.2015
From: Julie

Subject: Re: ups and downs of RA

Hi Colin, how are you doing? Have you started a new drug yet?
The lowest the hospital like us to be is 1.96, last week I was 1.90 so that's why mtx was stopped and they were going to monitor it.

I was told by one of our nurses that other people on the trial were showing drops in their neutrophils aswell, not as much as mine though:(

So many blood samples being taken that my veins are not very big now and sometimes it hurts, got to go again on Friday for bloods but at hospital and another chest xray.

I am so scared that I go back to being in so much pain and not being able to do simple things like brush my teeth, its like God has shown me how good it can be again but then its "sorry that's not going to last so back you go"

Like so many of us its an endless journey with so many ups and downs and I have only been on this journey for 2 years, hope I have the strength to keep going.
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Date: 10.02.2015
From: Colin W

Subject: Re: ups and downs of RA

not started the new drug , hope its within next few weeks , things are still realy bad for me , realy desperate to start this new drug

2 years is not time for RA , been here since 95/96 , the last 13 months have been realy hard , on high dose steriods , MTX + Sulpha have stopped working & consultant dont like the fact I been on MTS since 1998 , says can cause liver damage

you must not worry , you know there is a drug that works for you , sure they will work something out
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Date: 11.02.2015
From: Julie

Subject: Re: ups and downs of RA

Colin you are so supportive of other people although you have had so much to deal with yourself. I would say you are so brave but then again what choice have you got but to keep going and trying other drugs. You should write your own online record of how things started and what you have learnt, you probably know more about RA than the doctors who are treating you. Me I am just a wimp, get scared of least little thing (by the way neutrophils went up from 0.8 to 0.84 so will have a party!!!)

I have my grandson from school and I am having to wear a mask, he just told me his glands hurt - so good job got mask on!!

Take care Colin and thank you for being there Did you get your roof fixed by the way?
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Date: 11.02.2015
From: Colin W

Subject: Re: ups and downs of RA

the roof was leaking while I was in hospital , its a slate roof & about 120 years old , we got the house in 1985 & it needed alot of work at the time

I was trying to sort it out in the spring when my father-in-law died , just cant believe how unhelpful the DSS are , so quick to stop peoples money but left my elderly Mother-in-Law with just 63 a week for two months & expsensive funeral to pay for ,

any way after we got things settled we then had the roof done in September , old houses are very expensive . as for writing things up , not sure , me & words dont go well together , I was the best one at maths in our school but one of the worst at English , they never gave help to people years ago

Julie , I stay hopeful that this new drug will give me some of my life back , taking 40mg steriods a day is not good but nothing else helps at moment , try to stay positive
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Date: 11.02.2015
From: Melon

Subject: Re: ups and downs of RA

Colin, Churchill was pants at English and look what he went on to do. You should be proud in the fact that you help so many people that come on to this site.
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Date: 14.02.2015
From: Colin W

Subject: Re: ups and downs of RA

thanks for the kind words , did not know that about Churchill , know several top business like Richard Branson are the same

anyway had some good news myself , my hospital had a cancellation & I am going to start my new biologic rituximab next tuesday , so looking forward to having something that might work
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Date: 14.02.2015
From: Julie

Subject: Re: ups and downs of RA

that's really good Colin, how long have they said it takes to get into system?
I have been taken off toc until they get another blood test done, which will be next Wednesday, hopefully my neutrophils will have gone up a bit more.
Let us know how you get on with Rituximab.
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