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Date: 06.06.2014
From: Julie

Subject: Colin's meds

Colin how are you doing with your new meds? Hope everything is okay.
Julie
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Date: 06.06.2014
From: bsk

Subject: Re: Colin's meds

Yes, Colin. How are you?
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Date: 07.06.2014
From: Colin W

Subject: Re: Colin's meds

thanks for asking , got next infusion on monday & dont know the results from my blood test yet but joints been playing up & both hands are blown up like a balloons & pretty much every other joints is playing up including my hip which think gonna be left with

early last month my father-in-law died aged 80 , he been ill for a long time but any sudden death is still a shock , think the stress & of dealing with this is not helping & making my RA worse ,

its like the last infusion did nothing & still on high levels of pred (30mg) had managed to get it down to 20mg but my hands are so painful I had to increase the steriod back up , sort of wondering if this drug is going to work , no side effects but maybe they should have given me the drug rhona is on but the consultant said it would take to long to work , hoping this infusion will make a differance
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Date: 07.06.2014
From: marlene

Subject: Re: Colin's meds

Hi Colin, Firstly may I say sorry to hear about your father-in-law it is always a sad stressful time no matter what age bless him!!!

Sorry you are in trouble with all your joints this weather doesn't help at all. Fingers crossed that the infusion will work for you. We just have to do our best to keep our chins up and soldier on. I wish you well.

My regards to Mrs. Colin on the loss of her Dad.

xxxxxx
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Date: 07.06.2014
From: rhona

Subject: Re: Colin's meds

Hi Colin,

Sorry to hear about your father-in-law, you are right, stress does make the RA worse.

I am sorry to hear that you are still suffering despite having the infusions. Steroids are great at the time but it can be a problem reducing them, as you know.

Did they say how long it usually takes for your infusion to work? I do hope it starts helping you soon. You are right, the rituximab can take a while to work, I had to have regular steroid injections while waiting on it kicking in and I really was in a bad state, it took four months for it to work and I had just about given up on it but I can honestly say it really has made a big difference. It's maybe early days yet for your infusions, let's hope it kicks in soon. xx
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Date: 07.06.2014
From: bsk

Subject: Re: Colin's meds

Commiserations to you and your family on your recent bereavement. It's a very difficult time for everyone and probably doesn't help.

I am currently reliant on steroids too, Colin, so I know how frustrating things can be. Hold your nerve and hope the infusion does it's stuff. xx
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Date: 07.06.2014
From: Julie

Subject: Re: Colin's meds

so sorry Colin to hear things are not going well for you, maybe it will kick in soon. This awful illness makes it hard to deal with normal everyday things but having to deal with a bereavement is so hard.

Just remember that we are all thinking of you, and that you are missed when we don't see your name on forum.

Condolences to you both on your loss.
xx
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Date: 07.06.2014
From: Colin W

Subject: Re: Colin's meds

thanks guys , it will we four weeks tomorrow , so much to do & sort out , its been hard on my wife & her mother , we all live in the same large house since 1985 but have everything seperate , so many things to sort out

bsk , sorry you are stuck on steriods as well , I who its hard getting off them & normaly end up having a huge flare afterwards , just hoping I can get on a lower dose soon , dont expect to come off them but be happy if can get down to a maintenance dose
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Date: 07.06.2014
From: Julie

Subject: Re: Colin's meds

You will get there:) Just take your time and not try to do too much altogether. Four years on and I still have some of my mums things packed in boxes in loft will sort them when I can.

I am off steroids altogether, been about two weeks now, not sure if this is to blame for my pain because last week my g.p. decided to take me off anti inflammatory aswell so at moment I feel as if I want to chop my hands off. I have taken anti-inflammatory this morning and it is a bit easier today, how he thinks I can cope without the steroids and the anti's I don't know - well I do he doesn't feel the pain does he. At rheumy next Tuesday so will see what she says.
xx
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Date: 07.06.2014
From: bsk

Subject: Re: Colin's meds

My GP stays right out of my arthritis stuff, she doesn't change my meds, Julie. They should be guided by your rheumy. You could get them to write to GP and tell him to butt out, politely.

Take your time sorting stuff out, Colin.
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Date: 08.06.2014
From: Julie

Subject: to bsk re meds

don't your doctors ever change your meds? mine are always butting in, not with the big ones like mtx, sulpha and plaquenil, he even said I only needed to take 1 folic acid a week - bloody fool!!!

He stopped my diclofenac but has added Alendronic acid, one of the common side effects are joint/muscle pain, thankyou very much g.p. that's just what I need. He gave them because bone scan said that I was low-moderate risk of osteo cos of steroids, which I am not taking now. I don't want to take these so am going to ask rheumy about them aswell.

How are you at moment?
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Date: 08.06.2014
From: Julie

Subject: Re: Colin's meds

SORRY I meant to start new message but its now mingled in with Colins meds, need to wake up I think!!!!!
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Date: 08.06.2014
From: Colin W

Subject: Re: Colin's meds

lol Julie , no problem , your GP sounds a pain & they should stick to what the consultant says , no idea why he gave you Alendronic acid
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Date: 08.06.2014
From: Julie

Subject: Re: Colin's meds

yep your right there Colin, he also said that because my Lyme test came back negative I haven't got it, but he also said Lyme disease is not in UK - well when I told Lyme disease association what he had said they weren't very happy and gave me some paperwork to give him to read because they are working closely with NHS to get the message across about Lyme being endemic in UK.

I was also told by LDA that because Im on immune drugs that my test would have come back negative anyway and that Lyme Disease does show up RF in your blood - so Im still fighting for confirmation as to whether I have it or not, its a long hard road.

The Alendronic acid is because my bone scan says I have a low to moderate chance of developing osteo, now if it had said moderate to high then maybe there was a need but Im not sure there is at moment.

Not taken any medication today yet and I have no pain, my hands feel fine. AT THE MOMENT!!!! don't know how long meds stay in system for but will see how I feel tomorrow, can you tell I am fed up of it all lol.
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Date: 09.06.2014
From: Colin W

Subject: Re: Colin's meds

quick update , had infusion today , every thing went well & no side effects but ..........

my CRP from last weeks blood test is up to 55 from 2.1 so part of the reason I been feeling pretty crap & with the infusion my consultant side they base the amount given to you by your weight with max 800mg for someone 18 stone & that is what I should be getting but today was given only half that so phone call to rheumy nurse to ask few questions

Julie , I dont take any pain killers & cant take nasid's because everyone one of them cause asthma , the painkillers is a personal thing & prefer to use TENS m/c & gels & note to myself dont tell any consultant thier painkillers dont work , they dont like it
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Date: 09.06.2014
From: marlene

Subject: Re: Colin's meds

Hi Colin I love your last comment when I last spoke to my GP she didn't like it when I mentioned PA and being tested. I am not going away!!!! As she will find out each time I go back I will mention it.

I hope the infusion works for you. I don't claim to know much about the CRP but I am learning and I hope yours sorts it self out soon. Take care Colin xx
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Date: 10.06.2014
From: Julie

Subject: Re: Colin's meds

Im learning too that they don't like us to suggest anything!!! I have rheumy appointment this afternoon just wait till she hears what I have been told to say to her from Lyme association - I will not be silenced, they will listen to me - now I can say that while I am at home but in front of her it will be a different story. lol

Colin your crp is around what mine has been through year, apart from couple of times it was 220 and 225, unless I have course of antibiotics and it drops to 20. I hope you are keeping a daily record of how you feel I cant recommend it strongly enough to anybody. Cant think why a lesser dose would work better do you? Suppose they are the experts but bet you know more than them!!!!!
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