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Date: 17.04.2013
From: ScaryFeet

Subject: Chronic pain

Please see my earlier post below - I only had a couple of replies and wonder if it was due t the subject looking a bit 'odd'. I'd really appreciate your help.
Thanks Lisa


"I thought that might get your attention! It is however a serious question - do any of you suffer from pains in the sit bones (Ischial Tuberosity)? I have steriod injections for pains in my coccyx but have now developed deep pains 'inside' my bottom bones although I can't locate the pain if I try and probe. They are worse when sitting or when trying to straighten up from picking things off the floor or standing up from sitting.
I have PA, take leflunomide and enbrel injections.
I've notice my elbows, knees and feet are especially sore at the moment too so this may be a new type of flare?
I appreciate any help you can offer.
Thanks
Lisa"
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Date: 17.04.2013
From: rhona

Subject: Re: Chronic pain

Hi Lisa, I had pain in the coccyx last year and it was horrible. At the time i was on enbrel but it didn't help me at all and i am now on rituximab and the pain has now gone.

It may be that you are needing to get your medication reviewed if you are having flares.

How long have you been on enbrel? has it helped you? x
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Date: 17.04.2013
From: Lisa

Subject: Re: Chronic pain

Hi Rhona
I've been on Enbrel for 2 years in July and I think it must have helped as I'm not in as much pain as I used to be and my flares are less frequent. My main area has been elbows and coccyx until these pains in the bones of my bottom started and an old running injury in my foot has come back with a vengeance and left me feeling crippled. I am seeing my RA at the end of the month although Im tempted to ask to see her earlier for an injection to try and get rid of this pain, it is so exhausting.
So you are happy on rituximab? Is this weekly self-injections?
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Date: 17.04.2013
From: rhona

Subject: Re: Chronic pain

Hi Lisa,

You should phone and ask to get an injection, that's what i would do as it's no fun being in pain and it is exhausting.

Rituximab is an infusion that you get at the hospital, it takes around 6 hours to get it and you get another infusion 2 weeks after the first and then that should last at least 6 months. I was in last friday getting an infusion and the last course was 10 months ago. It has made a great difference, this time last year i could hardly walk. I just hope it keeps being effective for a while and at the moment i am very happy with it.

I hope you get some relief soon,

Take care xx
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Date: 18.04.2013
From: Lisa

Subject: Re: Chronic pain

Thanks Rhona - I think you're right and I've emailed my Nurse to see if I can get in before our appointment on the 25th and when I see her I'll ask about the possibility of Rituximab.

I haven't heard of it before. I tried Infliximab infusion but that made me even more psychotic than I normally am so we changed it to Enbrel.

I'll let you know what she has to say.
Thanks again
Lisa xx
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