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Having a few bad days - can you describe your pain? Options
Paul Barrett
#1 Posted : Monday, September 23, 2013 5:47:46 PM Quote
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Pain, pain, pain. Pills, pills, pills.

I am having a rough few days here with pain. I think the pain I get with my form of RA (it's called enthesitis) presents differently from what the majority of you may rxperience. Enthesitis doesn't attack joints. Instead it attacks the insertion points of ligaments and tendons into the skeleton, causing inflammation and calcification. My joints look perfectly normal - to look at them you'd never believe I was an RA sufferer. The pain is linear if you know what I mean. It shoots along the line of the tendon or bone and has a hot spot at one end (presumably the insertion point). Like a shooting a star except instead of 'Ooh!' and 'Ah!' it's 'Ouch' and 'Aargh!'. I can get pain that starts in my index finger tip and extends nearly all the way up to my elbow. And it shoots off all over the place so, within a few minutes, I can get these shooting pains in my feet knees, hands, hips. All that said, I do have a persistent burning sensation in my left hip which I imagine may be what you guys get

How does that compare with what mainstream RA feels like? I'm interested to learn.

As for my flare, I give in. I am phoning the rheumy nurse tomorrow to discuss meds. We have been reducing the steroid dose (from 60mg in April down to 15mg today.) But there's this tipping point we keep hitting at about 15 mg where things start to light up. I just can't get below 15mg, which is a shame since it's masking whatever effect the Azathioprine may be having so we can't assess the efficacy of that drug.
Paul Barrett

Hexham - Northumberland - Loads of spectacular walks - all I need now are the joints to go with them! :)

Enthesitis (2012)
Ulcerative Colitis (1990)
Angiecha
#2 Posted : Tuesday, September 24, 2013 12:52:53 PM Quote
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Location: Lowestoft, Suffolk
Oh dear - sorry to hear you're in a rotten flare.

I think I understand the explanation you have given for the pain, I've experienced something similar. It sort of makes you jump and want to run away from it (as if you could). Definitely wouldn't want that on a regular basis.

The burning sensation you describe is what I get with Fibromyalgia, weirdly it mostly prefers to play in a single thigh, very occasionally having a travel around to see if it likes another place. It is accompanied on bad days, with a feeling like that of someone with a burning hot knife is sitting plunging it into my thigh.

The RA pain I get is like toothache, multiplied and relentless around all the joints. I do get shooting pains in fingers and toes to add a little variety if I get bored. And of course fatigue.

It's such a strange condition RA, hits people differently to different levels and often has secondary conditions.

Think you are right to have identified your tipping point and allowing the drugs to control its progress. It's all we have.

Hope you get some relief soon.

Angie Sad
Be yourself - everyone else is taken. XX
Paul Barrett
#3 Posted : Tuesday, September 24, 2013 6:08:41 PM Quote
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Seeing the rheumy nurse Thursday. My bet is we'll be upping the prednisolone dose again
Paul Barrett

Hexham - Northumberland - Loads of spectacular walks - all I need now are the joints to go with them! :)

Enthesitis (2012)
Ulcerative Colitis (1990)
suzanne_p
#4 Posted : Tuesday, September 24, 2013 6:57:33 PM Quote
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hi Paul,

sorry to hear how much pain you're in .. very difficult to describe pain isn't it,

but it sounds very different from my experience.

i have joint pain in my left wrist my worst affected joint that make's me flinch or yelp or if turn a tap on wrongly and that joint is swollen, i also have pain in both knee's from Osteo and that is a nagging pain if i stand for long .. walking far is beyond me now, but again it's more of a deep pain in the knee itself. again both knee's are probably double the size they should be.

i get a light pain in my shoulders which was what alerted me to going to my GP in the first place, which in turn run down my arms to my elbows .. but once i went for my initial Rheumy consultation and was given cortisone injection in both shoulders some 3 and a half years ago now the pain subsided a lot, now just get a dull ache which is manageable.

sorry to hear you are in a flare, i hope the Rheumy Nurse can help on Thursday, do you have depo steroid injections? i know you are on oral steroids, but the depo works really well most of the time.

let's know how you get on,

Suzanne
Paul Barrett
#5 Posted : Tuesday, September 24, 2013 10:15:52 PM Quote
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suzanne_p wrote:
hi Paul,

... do you have depo steroid injections? i know you are on oral steroids, but the depo works really well most of the time.


Suzanne


No my steroids are all oral. I had one injection about 7 or 8 months ago. Can't say it had much effect. Still, who knows what they might suggest on Thursday?
Paul Barrett

Hexham - Northumberland - Loads of spectacular walks - all I need now are the joints to go with them! :)

Enthesitis (2012)
Ulcerative Colitis (1990)
Paul Barrett
#6 Posted : Thursday, September 26, 2013 3:17:04 PM Quote
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Well, as expected. the rheumy nurse (having had a quick chat with a consultant) suggested raising the prednisolone dose to 20mg a day (up from 15mg). But they still want to wean me off it - but at a likely rate of 1mg step reduction every 2 weeks. If it works that nmeans I am in for a long haul - 40 weeks - before they are able to scan my back for the inflammatory indicators required for an anti TNF.

I have a consultant appointment in about 3 weeks so let's see what they haver to say. If nothimg else we'll be able to assess progress on 20 mg.

The nurse was thining about othetr DMARDS I could try. Sulfasalazine is the best for polyenthesitis but I had respiratory issues when I tried it last year. MTX was also a no no that put me in hospital with a violent reaction. So we are scratching our heads somewhat. Confused
Paul Barrett

Hexham - Northumberland - Loads of spectacular walks - all I need now are the joints to go with them! :)

Enthesitis (2012)
Ulcerative Colitis (1990)
suzanne_p
#7 Posted : Friday, October 04, 2013 2:39:28 PM Quote
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hi Paul,

have you increased the prednisolone yet, am wondering if it has made any difference,

this is going to be a long haul for you i can see.

have you tried Hydroxycholoroquine it is one of the weaker drugs ( i am just about weaned off it now after 3 months ) am thinking that might be gentle on your system while you are in this state of limbo regarding Anti-TFN.

getting the right meds is definately a long haul.

Suzanne
Paul Barrett
#8 Posted : Friday, October 04, 2013 4:57:04 PM Quote
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Yes I am back up to 20 mg of Prednisolone. Problem is that even at that high dose I am still suffering a lot of pain so may have to go even higher, which will prolong the weaning. I see the consultant in under 2 weeks time so will discuss it with her to see what we can do to resolve this stalemate. Makes no sense to me be told that they must have a zero steroid view of my lower back if I can't get that low due to pain. If it's painful at 20mg it will be horrendous at zero
Paul Barrett

Hexham - Northumberland - Loads of spectacular walks - all I need now are the joints to go with them! :)

Enthesitis (2012)
Ulcerative Colitis (1990)
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