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Date: 24.01.2014
From: colin w

Subject: boody anti_tnf drugs

my gp decide i need a holiday ,my hip gone mad + cant do anything my crp is 235 and about 200 highzr than its ever been , all because this drug has let some infection set up in my hip .
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Date: 24.01.2014
From: bsk

Subject: Re: boody anti_tnf drugs

Oh Colin, so sorry to hear that. That's the downside of these drugs for some people. I hope you recover soon. xx
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Date: 24.01.2014
From: colin w

Subject: Re: boody anti_tnf drugs

why did you have to come off enbrel ,these screans in this hospital are realy bad to use 5 quid a day to watch tv. 3 pounds to park for couple hours, the surgeons not got a good thing to say about these biologics because all the damage they do ,as for me no rheumy drugs ,just another 3 opps in next week on hip + weeks in hospital
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Date: 25.01.2014
From: bsk

Subject: Re: boody anti_tnf drugs

Colin, I didn't realise you were in hospital. That's terrible. What are the ops on your hip for? Is it the infection?

I had to stop Enbrel because I got neurological symptoms but I stopped Cimzia because of serious chest infections. I'm on a drug holiday myself which is a relief to be honest but not sure what is going to happen in the long term.

I sincerely hope things go well for you. Keep in touch with us here won't you? Take care.
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Date: 25.01.2014
From: colin w

Subject: Re: boody anti_tnf drugs

yes my hip developed monday and within 12 hours was taken to hosital , the infection will distroy the cartlege if not totaly cleaned out and that is why it needs so many opps , they split the hip and wash out everything
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Date: 25.01.2014
From: Bsk

Subject: Re: boody anti_tnf drugs

I'm so sorry to hear about that. I hope they get on top of it quickly. You must be in a lot of pain.
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Date: 25.01.2014
From: Sandy

Subject: Re: boody anti_tnf drugs

hope you're ok Colin and out of hospital soon x
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Date: 26.01.2014
From: Chris

Subject: Re: boody anti_tnf drugs

All the best Colin. Hope your recovering and out and about soon.
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Date: 26.01.2014
From: marlene

Subject: Re: boody anti_tnf drugs

Colin, all the best keep your chin up. HUGS xx
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Date: 26.01.2014
From: willis

Subject: Re: boody anti_tnf drugs

hope all is well in hospital land Colin and they are looking after you well x
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Date: 26.01.2014
From: Emm

Subject: Re: boody anti_tnf drugs

Wishing you well Colin, I hope all goes well for you.
Let's hope it gets sorted very quickly.

Regards Emm x
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Date: 26.01.2014
From: Linda Bradley

Subject: Re: boody anti_tnf drugs

Sorry Colin, didn't know you were in hospital. Hope your on the mend soon. Take care
Linda x
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Date: 26.01.2014
From: Suz

Subject: Re: boody anti_tnf drugs

so sorry to hear this colin. Your trying to do right by taking these drugs but when it gives a negative impact like this it really puts me off. I hope you get better soon!
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Date: 26.01.2014
From: helen

Subject: Re: boody anti_tnf drugs

Hope the treatment works quickly for you. Yes the TV radio internet is a rip off as is the carparks for visitors. Best wishes.
Helen.xx
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Date: 29.01.2014
From: colin w

Subject: Re: boody anti_tnf drugs

thanks guys , had opp again monday to clean up hip , crp went up to over 300 and now droped bad a bit , pumping me full of antibiotics and no ra drugs , but my ra seems to be only my hands and shoulders .
Any some improvement but waiting mri scan and crp to reduce a lot before going home next week
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Date: 29.01.2014
From: Emm

Subject: Re: boody anti_tnf drugs

Pleased you are on the way with your treatment Colin.
Try to keep cheerful and positive.

Going home next week sounds good!!

We are all thinking of you and wishing you the best. X
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Date: 29.01.2014
From: Willis

Subject: Re: boody anti_tnf drugs

Colin just as emm says, glad you on the mend
X
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Date: 30.01.2014
From: marlene

Subject: Re: boody anti_tnf drugs

Hi Colin, you sound very positive. I hope you are home next week as planned. Make the most of the rest and I am glad to hear your RA is not too bad!!
Keep your chin up a little hug on its way xx
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Date: 30.01.2014
From: Bsk

Subject: Re: boody anti_tnf drugs

Hi Colin, pleased to hear things are improving. What's the food like? When I was in hospital for 10 days I found it terribly repetitive and not enough carbs or fruit for me. I invariably had tests around lunch time so used to come back to cold plates of food! I hope you are faring better!

Look forward to seeing you back on here regularly!
XX
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Date: 31.01.2014
From: colin w

Subject: Re: boody anti_tnf drugs

starting to be able to move a bit , got to be able to use stairs before let home ,
Crp was at 339 at one point and today its 110 ,will need to drop to below 50 before i can go home

Bsk the food here is pretty good in truro hospisital
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Date: 31.01.2014
From: julie

Subject: Re: boody anti_tnf drugs

Hi Colin, so glad your feeling a bit better, wow that crp was high bet you felt rubbish, well at least you know it is dropping now and things will hopefully get easier each day. I would say enjoy the rest but who wants to rest in hospital! I had my pneumonia jab a few days ago and do you know its the worst injection I have ever had, my arm is so stiff, not swollen or red just hurts, good job it lasts for 20 years I wont be around for the next one!!!
Take care and hope you are home soon.
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Date: 31.01.2014
From: marlene

Subject: Re: boody anti_tnf drugs

Hi Colin keep up the good work. So good to hear things are improving for you. Hugs x
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Date: 31.01.2014
From: Emm

Subject: Re: boody anti_tnf drugs

Colin, it seems all is going well for you, I am delighted and hope your recovery continues quickly so you can soon get home.
Look forward to your next post of more improvement.

Hugs for you. X
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Date: 02.02.2014
From: colin w

Subject: Re: boody anti_tnf drugs

quick update , still on my hols , very small room with views of a hospital , my ra seems to be ok and just playing up a bit , the infection , my crp went up from 110 tO 140 plus having problems with my kidneys so they cant give one of the antobiotics i need , feeling pretty good in myself just a bit bisapointed i wont be home in next couple of days , and they were talking of pulling me back on that bloody drug
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Date: 02.02.2014
From: rhona

Subject: Re: boody anti_tnf drugs

Oh poor you Colin, that is terrible. I do hope they get you sorted out soon and the infection clears up quickly. The drugs are a worry, especially when they cause problems but what can we do, it is a vicious circle.

Take care and I hope the nurses are looking after you well. xx
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Date: 02.02.2014
From: marlene

Subject: Re: boody anti_tnf drugs

Hi Colin, fingers crossed they get you all sorted soon. Keep you chin up Colin. Best wishes x
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Date: 03.02.2014
From: Emm

Subject: Re: boody anti_tnf drugs

Hi Colin, how are you today? Hope things are getting sorted.

Keep your chin up.

Regards Emm x
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Date: 03.02.2014
From: bsk

Subject: Re: boody anti_tnf drugs

hope you are dong a bit better today Colin. xx
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Date: 04.02.2014
From: colin w

Subject: Re: boody anti_tnf drugs

thanks guys for the wishes , my crp has droped back a bit to 121 so is heading in the right direction ,

My ra is niggling with both elbows/wrist/knees and few other joints in on the act , only got voltarol gel to help , being pumped full of antibiotics 5 times a day via drip dont seem to stop it

Rhona , i have no idea what is right or wrong for us ra suffers , know these drugs work for some but the risk is what i would question
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Date: 04.02.2014
From: marlene

Subject: Re: boody anti_tnf drugs

Hi Colin, pleased to hear things are going in the right direction for you.
You are right Colin I have just taken myself off of my new cocktail and am returning to the Drs on the 13th.
I also worry about the risk I am taking with constant pain meds and try this and try that along with all the others. Amytripline no good for me. Oh well less of me. Colin I wish you a speedy recovery take care and make the most of the rest lol.

XX
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Date: 04.02.2014
From: Willis

Subject: Re: boody anti_tnf drugs

Hi Colin
Just to say keep going n lots of strength being sent to you
X
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Date: 05.02.2014
From: Bsk

Subject: Re: boody anti_tnf drugs

Pleased your crp heading in the right direction, Colin. I know what you mean about the risk of these drugs. I am beginning to feel the same way, having failed yet another dmard which gave me elevated liver results. I had a good quality of life on Enbrel, until the side effects kicked in.
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Date: 05.02.2014
From: rhona

Subject: Re: boody anti_tnf drugs

Hi Colin, I hope you are feeling a bit better this morning and it won't be too long until you get home. I don't know what is right or wrong either Colin when it comes to these drugs, I have found the rituximab to be a big help to me but I still worry about the side effects. Take care and we are all thinking of you. x
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Date: 05.02.2014
From: colin w

Subject: Re: boody anti_tnf drugs

thanks guys , last night and first thing this morning my RA came back with a bump , was totaly stiff with just about every joint involved , they gave me morphane and can move a bit , dressings taken off wounds and thats all looking ok so waiting for crp to come down which it slowly is

Even manage to talk to one of the rhummy docs and she said they will start with only one of my drugs and told her l dont want to go back on the anti tnf
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Date: 05.02.2014
From: Emm

Subject: Re: boody anti_tnf drugs

Just a 'thinking of you post' Colin.
I have had a really stiff day and I am taking a boost of oral steroids. They usually make me feel marvellous but not this time.

It is good your wound is nice and clean!

Good luck with everything Colin. I keep looking for your posts to see how you are progressing.

Regards Emm x
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Date: 05.02.2014
From: marlene

Subject: Re: boody anti_tnf drugs

Hi Colin, good sign the wound is healing nicely.

It must be difficult for you to decide what to do next with your drugs. I wish you luck and hope they come up with a plan you are happy with.

Stay strong and chin up best wishes xx
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Date: 07.02.2014
From: Julie

Subject: Re: boody anti_tnf drugs

hope things are a bit better for you Colin and you are not in too much pain. Fingers crossed (ouch maybe not) you will be home soon and they get you sorted on drugs that will help rather than make you worse. Keep smiling and keep us all informed as to how you are feeling.
regards Julie xx
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Date: 07.02.2014
From: colin w

Subject: Re: boody anti_tnf drugs

yesterday felt realy crap , so stiff and joints not easing and in afternoon they was thinking of opening my hip up again even though i had full movement in it , today seen specialiest for hip and he was totaly happy with it , so seen rheumatologist and being put back on mtx and sulpha + high level steriod tablet becauce he thinks this is mostly RA related and revewed next monday and home if things work

Btw sorry for the spelling but not got spell checker
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Date: 07.02.2014
From: rhona

Subject: Re: boody anti_tnf drugs

You really are having your time of it Colin. I'm pleased to hear that they didn't open your hip again, you can do without that. That's good though, that the specialist is happy with it. Once you are back on your feet you can have a good think about what drugs is best for you but in the meantime the steroids will probably help sort you out.

I suppose the only consolation for you is that you are missing all the cold weather but I do hope you get home next week.

Take care and get better soon. xx
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Date: 07.02.2014
From: colin w

Subject: Re: boody anti_tnf drugs

back on 25mg mtx and sulpha + 60mg of steriod tablets , been on that strenght before and a good idea what the side effects are , they stopped all the antibiotics so atleast they should know whats causing my high crp
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Date: 07.02.2014
From: rhona

Subject: Re: boody anti_tnf drugs

Oh that is a high dose Colin. Will they just keep you on that dose for a short time before reducing it? My CRP was over 200 a while ago due to the inflammation and it made me feel pretty CRaP so I have an idea how you must be feeling. Hopefully you will start feeling better soon. Make the most of the rest. xx
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Date: 07.02.2014
From: colin w

Subject: Re: boody anti_tnf drugs

they kept tell me high crp over 50 must because some sort of infection and cant be RA , well think this will be kill or cured which is a lot better than left in limbo , think the steriods will review in three days
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Date: 07.02.2014
From: rhona

Subject: Re: boody anti_tnf drugs

I was taken into hospital Colin because it was so high and I felt so bad and they thought I must have some sort of infection and they did every blood test they could think of and nothing showed up so they finally agreed it was the RA. If it's just a short course of steroids then hopefully you won't get any side effects.
Take care x
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Date: 07.02.2014
From: Bsk

Subject: Re: boody anti_tnf drugs

Hi Colin, if that lot doesn't get you up and out of hospital, I don't know what will! I hope you feel a lot better soon. xx
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Date: 09.02.2014
From: colin w

Subject: Re: boody anti_tnf drugs

another quick update , yesterday was feeling realy good for most the day , until the evening when had heart burn and high blood pressure , started to get very stiff with most joints involed , did not help the nures taking away my air bed for something realy bad matrest with no support .

Over night had litte sleep and starting to worry it because the doctors got it wrong in stopping all my antibiotics ,5 infusions a day which seem such extreme change to make , but this afternoon joints feeling alot better and think a medicine a nurse gave me last night was in the cause of the problem with my ra .

There was four of us on this ward but one elderly gent was very ill but at peace now but its just bring back everything I went through last august .
Just hope tomorrow I am heading home
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Date: 10.02.2014
From: rhona

Subject: Re: boody anti_tnf drugs

It is always so sad when that happens Colin. Good to hear that your joints are feeling better today and I hope they release you tomorrow.

Take care x
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Date: 10.02.2014
From: colin w

Subject: Re: boody anti_tnf drugs

hi rhona , its seems like I am having something very similar to what you went through , crp friday was 174 and saterday 140 , they done it again today but dont know results , yesterday could walk pretty well until late and seemed like the effects from steriods worn off and this morning could not move

What I was wondering is how did they sort out your attack , so of accecpt going to have to have another biologic at some point , one thing strange is even on 60mg steriods I dont seem to be having any side effects which I dont get
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Date: 10.02.2014
From: rhona

Subject: Re: boody anti_tnf drugs

I was given steroids until I started the rituximab Colin. As I had been on Enbrel I had to wait a few months before I could go onto the rituximab. I would hate to go back to feeling like that again. Would you not give the rituximab a try? At the time I would have taken anything to help and it has helped me. x
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Date: 11.02.2014
From: colim w

Subject: Re: boody anti_tnf drugs

well today still very stiff in very joint first thing until given steriods , strange that I am getting no side effects from them , my crp before starting them friday was 170 and yesterday was down to 57 so know this is working at last

Rhona , I got no idea why golimumab has not worked and seemed to make myself worse , to consultant mentioned trying Tocilizmab as he said they can have monthly injection instead of monthly infusion , yes I would try anything and think the b cell treatment was what I would always end up on , some ways pleased its not the anti tnf causing all my problems and got a lot of simpithy what you and everyone like us go through in massive ra flare

Now only problem is getting out of here but working on that
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Date: 11.02.2014
From: marlene

Subject: Re: boody anti_tnf drugs

Hi Colin, good to hear from you. Things seem on the up.
I bet you are working very hard to get home fingers crossed it won't be too long now.
Take care and best wishes x
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Date: 11.02.2014
From: colin w

Subject: Re: boody anti_tnf drugs

thanks marelene , looks like i am home tonight , brother is coming to pick me up in an hour , just waiting for them to sort the meds out which does seem to take a long time , any way the docs are happy and my three weeks stay is almost over , need to workout how to do happy face on this mobile ooops
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Date: 11.02.2014
From: rhona

Subject: Re: boody anti_tnf drugs

Oh that's good that you are getting home Colin, just take things easy and don't be trying to do too much too soon. At least you will have your own bed tonight. Take care x
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Date: 11.02.2014
From: marlene

Subject: Re: boody anti_tnf drugs

Great news Colin. Back in your home and your own bed. Just what you need. As Rhona said take it easy.
Best wishes x
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Date: 12.02.2014
From: marlene

Subject: Re: boody anti_tnf drugs

Colin hope you got home ok. Take care and continue with that rest. X
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Date: 12.02.2014
From: willis

Subject: Re: boody anti_tnf drugs

glad to hear they let you home colin. as marlene says i hope you are still resting
take good care of yourself
x
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Date: 12.02.2014
From: Colin W

Subject: Re: boody anti_tnf drugs

thanks guys , so pleased to be home , got 6 weeks of steriods & told the strange CRP results some people get is the anti-tnf drugs , but anyway going to take it easy for several days as been through the wars
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Date: 12.02.2014
From: Emm

Subject: Re: boody anti_tnf drugs

Colin, pleased you are home. What an ordeal you have had!!!

Best wishes and here's to no more complications. Emm x
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Date: 12.02.2014
From: marlene

Subject: Re: boody anti_tnf drugs

YEEEEAAAAHHHHH. Take care Colin best wishes x
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Date: 13.02.2014
From: Colin W

Subject: Re: boody anti_tnf drugs

well been home 48 hours now & been awaking in the middle of the night wondering where I am , all seems very strange , still in alot of pain but resting as cant do stairs much & most joints still hurting & pretty much every tendon/muscle hurts as well but they never care about any connective tissue problem

the Docs have told me that my problems is caused by these Anti-tnf drugs giving out a very high CRP reading & I seem to have had the same problem as Rhona did ,

6 weeks of steriods & then they will decide what to treat me with , I am worried about going on another biologic & cant find any mention on the net about the strange side effects hese drugs got
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Date: 13.02.2014
From: rhona

Subject: Re: boody anti_tnf drugs

Hi Colin, Sorry to hear that you're still suffering. Perhaps it will take a wee while for the steroids to work. I have never heard of that happening with the anti-tnf drugs the whole purpose I thought was to reduce the crp but like yourself mine got higher and higher when I was on Enbrel so that is very interesting and perhaps a bit disturbing. I do wish they knew more about the long term effect of these drugs. I also had a basal cell while on Enbrel, they said they thought it was probably the sun that caused it but I also read that can be a side effect. So probably a good idea to report anything suspicious right away when we take these drugs.
I hope you get some relief soon Colin and find something that helps you lots. x
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Date: 14.02.2014
From: bsk

Subject: Re: boody anti_tnf drugs

I think the anti-tnf causes it purely by lowering your immune system and and allowing infection to develop. I don't think it is a mystery. It was clear you had an infection in your hip and your crp is going down along with the antibiotics. Unless I've missed something?

I did really well on Enbrel and miss it, however, I don't miss the scary side effects but my rheumy is talking about giving me another one at some point. I don't think I'm going there, not without a very good explanation as to why it is worth the risk.

The problem for me is the pain is so bad ,and the risk of damage with the arthritis, you end up agreeing with anything in order to feel better. You obviously have to make your own decision, Colin, and what's good for one person isn't always the answer for another. At least you have a bit of time to think about it. I'm really in a similar place to you and having had a couple of months off drugs, apart from recent steroid jab, and finding myself grinding to a halt, I'm not sure what to do anymore.

All the best with your recovery. xx
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Date: 14.02.2014
From: rhona

Subject: Re: boody anti_tnf drugs

Hi Bsk, Yes, that is what I think but in my case I didn't have any infection, they did every blood test they could think of and the conclusion was it was the RA that caused the crp to go so high. The funny thing was, my crp got even higher while I was on Enbrel so perhaps there is something in what Colin's doctors have said. If the drug didn't agree with me then perhaps my body produced more inflammation to try and get rid of it (who knows) or it may just have been the RA was getting out of hand. I wish we knew all the answers to this very complex disease. xx
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Date: 14.02.2014
From: Colin W

Subject: Re: boody anti_tnf drugs

bsk , when I went into hospital they told me that any crp reading over 50 would not be RA & had to be an infection , I pressented them with my left hip in a huge amount of pain that I was unable to move or walk & needed gas & air to get me into hospital .

I am the same as rhona & they done everything to find a infection like three opps on my hip , the last two include opening the joint out & washing out the cartilage which would have ben distroyed if there was an infection , the do blood cultures to find infections , when I went into hospital my crp was around 220 - 240 but the opperations on my hip would increase that anyway but not sure why but the highest was 339

the antibiotics did reduce my condition alot as they were pumpimg me full of 5 intravenous antibiotics a day , dont totaly understand the relationship with antibiotics & RA but all antibiotics lower the immune system

I dont blame anyone in the hospital looking for an infection as these drugs are well known for doing this & infection are the biggest killers in hospitals but the conclusion in the end was that that there never was a infection & its the anti-tnf drugs causing a massive RA flare , pretty more will show up over time

I realy hope you find something that helps you , I hate taking steriods but got no choice at moment & the thought of another anti-tnf is very sacry thought
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Date: 14.02.2014
From: bsk

Subject: Re: boody anti_tnf drugs

Ah, I misunderstood. Apologies.
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Date: 14.02.2014
From: Colin W

Subject: Re: boody anti_tnf drugs

dont apologies , dont think the docs can believe it let along us , its just rhona story & mine are very similar ,

myself I just want to get better & a little improvement today but still along way to go , we are all in the same position hoping that maybe we can get some kind of our life back & end up searching for the answers
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Date: 14.02.2014
From: Bsk

Subject: Re: boody anti_tnf drugs

It's tough. You are damned if you do and damned if you don't. I find this forum very helpful in knowing I am not on my own.
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Date: 15.02.2014
From: marlene

Subject: Re: boody anti_tnf drugs

Morning Colin, so glad you are improving just take you time. I read your post to Bsk with great interest. I learn something new on this forum everyday.
Take care and remember one day at a time X
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Date: 15.02.2014
From: Colin W

Subject: Re: boody anti_tnf drugs

thanks marlene , think we all are learning & she is right if your damned if you do or dont , myself I am still having problems & think its because this anti-tnf I took was monthly so will take some time to clear the system

I dont look often in the other thread where you talk , but you mentioned you have psoriasis , & with all the ostoarthritis you have I just wonder if you have Psoriatic arthritis & your joint problems are linked , have they ever checked it
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Date: 15.02.2014
From: Emm

Subject: Re: boody anti_tnf drugs

Just giving you my best wishes and am following your posts with interest.
I cannot have bio's because of chest probs and used to think oh I wish I could try them as my friend had such good results, but she gets constant sinus infections now.

So after reading you experiences and my friends I do not want any.

This is where this forum helps us. Comparing our experiences helps us make decisions.

So thanks Colin and I wish you a speedy recovery. Emm x
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Date: 15.02.2014
From: marlene

Subject: Re: boody anti_tnf drugs

Hi Colin, to be honest I was having this thought as since taking the two lots of antibiotics and steroids I have only taken one dose of painkillers and that was on the first day!! I was checked for RA do they check for PA at the same time? They said no RA.
I have to see the Dr at my surgery for OA so I will be asking the question. I have luckily only two small patches of psoriasis.
I have researched PA a little and some of the pointers have made me a little suspicious that maybe it has been missed.
Take care Colin I will post and let you know what GP has to say.
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Date: 18.02.2014
From: rhona

Subject: Re: boody anti_tnf drugs

Hi Colin, How are you doing? I hope you are recovering well. Take care x
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Date: 19.02.2014
From: Colin W

Subject: Re: boody anti_tnf drugs

rhona , how long did your problems last , when I was enbrel the injection site problems lasted about 2 1/2 weeks so thinking if that is how long the drug last in our systems , mine I took monthly & think it will be towards end of march before its out my system & think I will be having problems until then .

yesterday & today I am very sore & stiff , down to 50mg steriods but that is still very high , its like evey part of my arms/hands & legs hurt & yesterday hurt my hip doing the exercises which is the same as hip replacement , thought at time I may end back in hospital

blood test tomorrow & will be pleased to find out what my CRP is doing but expect it to be pretty high , still got half bottle of morphine which is very tempting , like very ,
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Date: 19.02.2014
From: bsk

Subject: Re: boody anti_tnf drugs

Hi Colin, I'm sorry to hear you are still in pain. 50mg is high but hope you will be off them soon.

Regarding drugs in the system, they all have different a half-life. Enbrel has the shortest, which is why I had it (prone to chest infections which don't clear up quickly). Others are longer.
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Date: 19.02.2014
From: Emm

Subject: Re: boody anti_tnf drugs

Sorry to hear you are still having problems Colin, hope you are sorted soon.
B....y relentless disease. X
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Date: 19.02.2014
From: rhona

Subject: Re: boody anti_tnf drugs

Hi Colin, I was told by the rheumatologist to wait around 3 months after stopping enbrel before going onto the rituximab. He said it's better to wait a bit after stopping one before going onto another. I was at the hospital today and I saw a new rheumatologist and when he looked back on my records he said, you must have felt awful before you went onto the rituximab as my crp and esr were so high. I really would hate to feel like that again so I can understand how you must be feeling Colin. I went a long time probably around a year or so feeling so bad, at first I thought it was a flare but it was obviously the ra going uncontrolled and when the Enbrel didn't work it was disappointing, I had to have monthly steroid injections but that didn't do too much either and then I was given some oral steroids but only 10mg and they didn't make a lot of difference. I just hope the rituximab continues to keep me mobile, I still have pain and have to watch what I do but compared to what I was it really has been a miracle although I don't feel too good today. I hope you feel better soon and get something that helps you. Take care. x
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Date: 20.02.2014
From: Colin W

Subject: Re: boody anti_tnf drugs

thanks guys , having a better day , still stiff in morning but easing up with steriods & gel ,

sun been shining here in Cornwall for a change so decided take my car to car wash ( drive through one ) started raining going to car & sunny all time driving & raining again when I headed home , off to blood test in hour & told I can take boss & mother-in-law to Tesco's tomorrow , just think I gonna have very bad day tomorrow
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Date: 20.02.2014
From: rhona

Subject: Re: boody anti_tnf drugs

That's good you're feeling better Colin. Try and send some of that Cornish Sun up to Scotland, it's very wet here today. Perhaps if you behave you will be allowed to sit in Tesco's cafe and read your newspaper, I see a lot of men do that while the woman do the shopping. lol. x
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Date: 20.02.2014
From: marlene

Subject: Re: boody anti_tnf drugs

Hi Colin, so glad you are feeling better.
LOL about your visit to Tesco's. Took my hubby to the same venue yesterday!!!!!
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Date: 24.02.2014
From: Colin W

Subject: Re: boody anti_tnf drugs

quick update , tesco's did not go well , sort of wiped out afterwards , went today again but this time went & have a drink in cafe & felt so much better

this morning woke up very stiff , the steriods been keeping me awake a bit so thought would take them all first thing yesterday so gone back to spliting them up , down to 8 tablets/40mg tomorrow & check my CRP from last week & its 7.8 so very pleased , just a shame the RA still playing up , got hydro starting next wednesday (5th) & Rheumy nurse day afterwards

one thing I mentioned about the food at Royal Cornwall Hospital was pretty good , there was a programe on BBC at 9.15 Operation Hospital Food with James Martin & its one of the hospitals they helped in earlier series which I did not know before today
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Date: 24.02.2014
From: marlene

Subject: Re: boody anti_tnf drugs

Hi Colin, good for you take time out a coffee at Tesco's sounds good. Tesco shopping absolutely wipes me out went today couldn't get out of there quick enough. I was just about concentrating and walking round like a wet week-end.
The Hydro-pool was my saviour just couldn't cope with dry physio so much easier in the pool. Good luck.
That will be why the food was good I have watched Operation hospital food brilliant!!!

Take care Colin just take it easy. X
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Date: 24.02.2014
From: rhona

Subject: Re: boody anti_tnf drugs

Steroids keep me awake as well Colin. Hope the stiffness eases soon but good that the CRP is down. Hope you enjoy the hydro-pool and it helps you. x
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Date: 28.02.2014
From: marlene

Subject: Re: boody anti_tnf drugs

Hi Colin, hope you are still progressing. This rain is so boring now LOL.
I am paying the price today for a day out yesterday for my birthday. So a lazy day will be had well sort of have to do the usual housework chores.
Take care and keep your chin X
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Date: 28.02.2014
From: Colin W

Subject: Re: boody anti_tnf drugs

hi marlene , sort of getting there very slowly , down to 30mg steriods next week but some of my joints still playing up , shoulders/knees + the normal stuff which is the rest , think that drug is still in my system & maybe for another month

think alot of us if we plan to do something rest up before & afterwards , dont think we have much choice , myself been TESCO's or bloody Tesco's , no kids but why do people when they us it as a social event then they got to take up a whole isle talking & worst thing is men with shopping trolleys , they need to teach them at school how to opperate a trolley with crashing into someone or being stuck in a middle of isle with no idea what to do , if only I was allowed to go to the cafe !!!!!
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Date: 28.02.2014
From: Emm

Subject: Re: boody anti_tnf drugs

Hi Colin, good to hear you can get out and about, slow progress for you but hopefully you will get there soon!

I agree with you bout men in supermarkets, blocking the aisle while they wait for the women to choose items or chatter and disregard the trolley!!! Its good that you as a man see that it is a problem!! I think you should be allowed to go to the cafe! Invite all the other men too!
Sorry Mrs Colin, you probably want him to assist!

Keep well Colin x

I
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Date: 28.02.2014
From: rhona

Subject: Re: boody anti_tnf drugs

Hi Colin, If they won't allow you to go to the cafe I would tell them to order online lol. I have actually used this service and it was great the delivery man even carried the shopping into my kitchen for me. Oh and I got a discount for the first online shop. There is an offer I see online for a 15.00 discount off first online shop. Although I bet you really enjoy it. x
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Date: 21.03.2014
From: Colin W

Subject: Re: boody anti_tnf drugs

quick update , still on 30mg steriods as still having problems & very very stiff for hours in the mornings & had blood test on thursday & my CRP is 116

been told got to wait 4 months before starting new biologic ( Tocilizmab ) so still 6 - 8 weeks to go , thought last saterday thought would end up back in hospital
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Date: 21.03.2014
From: marlene

Subject: Re: boody anti_tnf drugs

Hi Colin, sorry to hear you are suffering in the mornings. I totally understand at the moment I am trying to cope on Co-Dydramol or Paracetamol not doing very well so back to Gp April 4th trying another Gp just to see if they have any fresh ideas (working my way through them all).

6-8 weeks is a long while to wait. I hope you can stay away from being an inpatient again.
Rest up Colin and stay away from the dreaded Tesco's apart from the coffee shop that is LOL.
Take care X
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Date: 21.03.2014
From: Julie

Subject: Re: boody anti_tnf drugs

Agree with rhona Colin, online shopping is a lot easier, only thing is it takes me longer to pick the items than it does in the shop!! I always get somebody sneezing over me when I go in supermarkets and you know how much of a drama queen I am about catching anything :) I even sterilise my hands after pushing the trolley. At least I know its my own fingers that's been on my keyboard when I order.

Its a long time to wait for your new drugs are you happy with what they are putting you on?
For my pain I find only tramadol is any good and it makes me relax which helps the stiffness a bit, paracetamol doesn't do anything for me.
Take care Colin and fingers crossed you wont go back in hospital.
xx
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Date: 21.03.2014
From: rhona

Subject: Re: boody anti_tnf drugs

That's not so good Colin. At least this time you will know why the CRP is up. It seems a lot of steroids to be on and still to be so stiff, I think the sooner you get onto the tocilizmab the better.

Perhaps the better weather will help a bit. Take care and I hope the stiffness subsides soon. x
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Date: 22.03.2014
From: bsk

Subject: Re: boody anti_tnf drugs

Sorry to hear things are still bad, Colin. I don't know what to suggest, apart from taking yourself back to hospital if things don't improve or are too difficult to bear. Best of luck. xx
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Date: 22.03.2014
From: Colin W

Subject: Re: boody anti_tnf drugs

thanks guys , upped steriods to 40mg & felling a bit better today , was ok when first woke up but then started to stiffen & dont know why but should be other way around , gonna phone rheumy nurse monday & got to see doctor later in week about the discharge letter from hospital 6 weeks ago

waiting for someone from the surgery or hospital to tell me my bloods are bad but think I would have to wait a long time
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Date: 01.04.2014
From: Colin W

Subject: Re: boody anti_tnf drugs

quick update , seen new consultant today as the old one I had seeing since 1996 has retired last month , still dont totaly understand what went wrong but its something to do with the biologic & being on high dose

my das28 score is 7.07 & they are going to start Tocilizmab infusions within a couple of weeks & later this year will change it to injection pens

he claims they have over 100 people on the drug in Cornwall with no side effects , still on 40mg steriods & need to check bloods later this week & maybe reduce it 5 or 10mg a day

hope this new drug works as well as he says & thinks maybe could reduce MTX at some point and get off the steriods ,
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Date: 01.04.2014
From: Julie

Subject: Re: boody anti_tnf drugs

Hi Colin, you know what the say new brush sweeps clean, did you like your new rheumy?

I have never had a das28 score done, but I seeing consultant next Tuesday so will ask. Do they do special test to get it? Or rather should they be doing it anyway?

Hope the new drug works for you at least you might be able to reduce your steroids down and your mtx, I am reducing slowly from 10mg a day, got down to 5 but felt not very good so upped them for couple of days, will reduce again when I feel bit better. Or it could be coming of mtx injections and going back onto tablets, maybe it was a wrong move.
Take care and
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Date: 01.04.2014
From: rhona

Subject: Re: boody anti_tnf drugs

That is good news that you are going onto the tocilizmab soon, Colin. I really hope it makes a difference to you. When I go in for my rituximab infusions there are always a few in getting the tocilizmab infusions and they all seem to be doing well on it and the infusions don't take as long as mine, they are in and out in a couple of hours. x
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Date: 02.04.2014
From: Deborah

Subject: Re: boody anti_tnf drugs

Hi Colin,
I have been reading your posts on the message board.
I was sorry to read of your experience over the last month's how horrible.These inflamatory form's of arthritis and the drug's used to treat them never cease to amaze me.
I know we were all told of the possible side-effects and side-effects not yet known but we alway's hope that we can avoid them and after all what are we supposed to do.
I do hope this different drug will help you and so glad that you are on the way to getting better.
Just wanted to let you know that I was thinking of you and wish you well on this different drug.
Also it is great to get everyone's experience on these drug's.
All the best Deborah.
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Date: 03.04.2014
From: bsk

Subject: Re: boody anti_tnf drugs

Hi Colin, I hope you will get some relief from the tociilzmab and that you can get your steroids down. I'm much happier now I'm off them but in more pain generally. They masked a lot of disease activity.
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Date: 09.05.2014
From: Colin W

Subject: Re: boody anti_tnf drugs

quick update , just had my second infusion , CRP2.1 & ESR 2 after one infusion , the drug seems to work very quick with little side effects , bit light headed for first hour after infusion but able to drive home afterwards

joints still playing up & on 25mg steriods but reducing them down , hoping to get bit more mobile soon
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Date: 10.05.2014
From: marlene

Subject: Re: boody anti_tnf drugs

Hi Colin, so glad things seem to be going well for you. You have had a long haul hopefully you will feel better for the second infusion.

I think we are lacking in sunshine for our joints lol.
Take care Colin good to hear from you X
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Date: 10.05.2014
From: rhona

Subject: Re: boody anti_tnf drugs

Hi Colin, That's great that the CRP & ESR have went down so low. Perhaps this is the one that will work wonders for you, I really hope so. Take care and keep well. x
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Date: 10.05.2014
From: willis

Subject: Re: boody anti_tnf drugs

hi colin
glad to hear things are going in the right direction. hope you are jumping hurdles soon :)
have a good weekend
x
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Date: 10.05.2014
From: Julie

Subject: Re: boody anti_tnf drugs

brilliant news Colin, I am sure things will keep on improving for you, plus it gives others hope as well. Keep us all updated.

take care, don't do any marathons yet!!

xx
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Date: 10.05.2014
From: margaret

Subject: Re: boody anti_tnf drugs

Hey Colin hang on in there who else can we all moan to if your laid up. Best of luck keep in touch we are all thinking of you as messages prove I think.
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Date: 11.05.2014
From: Emm

Subject: Re: boody anti_tnf drugs

Glad to hear things are improving Colin. It has been a long haul for you. Best wishes x
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