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 Post subject: On to the next drug, I guess.
 Post Posted: 02 May 2018 23:46 
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Talked with my dr. today. She said that my dramatic response to prednisone shows a lot of inflammation is going on. Although, the only actual erosions I have are in my feet. Hips and big toes mostly show OA type damage. So she said I could go on a low dose of pred. -5 mg a day- to help with the joint pain.

And she also wants me to start the Lyrica. I assume this is to rule out Fibromyalgia, since this is a nerve pain med used to treat fibro?

I declined the low dose pred. at the moment, much as I would love to feel some relief. One, because I want to see my response to the Lyrica without anything else. Two......honestly when I tapered down the pred. in the first place, by the time I got to 10 mg, all my joint pain was back. Not sure what good 5 mg. will do me. Three, I have osteopenia....not thrilled about a steroid longer term.

So the journey of trying to figure this out continues. If the Lyrica does not help, not sure where we are. I have some bone erosion in my feet, but also OA other places. And I obviously have a lot of inflammation going on. But all bloodwork is normal. So the puzzle continues to be a puzzle.

Anyone else been in this boat?


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 Post subject: Re: On to the next drug, I guess.
 Post Posted: 03 May 2018 09:34 
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I'm in a similar boat, NSAIDs and the like are a no-no with osteoporosis and its usually arther that causes the most problems? I've been on Prolia injections for a while now and haven't broken anything since.


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 Post subject: Re: On to the next drug, I guess.
 Post Posted: 03 May 2018 11:13 
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Crossover medications (where the same drug can be used to treat a number of conditions, often by varying the dosage) is an interesting world: the Lyrica is not to rule something out but to try and give you further relief. In the past I have been offered amytryptaline to help me sleep (it is also an ant-depressant and used in treating nerve pain). One of the drugs I take for my psoriatic arthritis is used in massive doses in the treatment of various cancers, my piddly little dosage is nothing in comparison. I was enthralled to learn from a vet friend that one of my early meds, sulphasalazine, is also given to arthritic pigs.

You are wise to try the Lyrica without the background interference of the pred, that's a tough call: yes, pred makes things feel sooooo much better but it is not tackling the underlying problem and will ultimately only make things worse. I took a year to come off completely but the rewards were the moon-face went (I returned to my usual ugly) and my bone density increased.

Please let us know how you get on, I hope it helps. DD


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 Post subject: Re: On to the next drug, I guess.
 Post Posted: 03 May 2018 13:31 
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As ever, I've pushed for time so please excuse the bluntness.

Your post puzzles me on several levels:

1. " the only actual erosions I have are in my feet".
"X-rays will show any damage caused to your joints by the inflammation in rheumatoid arthritis. The changes often show up in x-rays of your feet before they appear in other joints, so your doctor may want to x-ray your feet even if they’re not causing you any problems." https://tinyurl.com/y73owtw4

2. I quite agree about the pred. I can't see that 5mgs will do much good and it would be a trade-off between that and potential damage to the osteopaenia.

3. "she also wants me to start the Lyrica. I assume this is to rule out Fibromyalgia, since this is a nerve pain med used to treat fibro?" Lyrica (Pregabalin as it's known over here) seems to be used mainly by those with OA in their spine. Try entering it in the search engine above. I don't think I've ever heard of it in relation to fibro.

4. " all bloodwork is normal!". Check out Rachael's reply on Helplines to someone who asked about inflammation re RA and OA. It might help. I certainly learned something.

Sorry, gotta go :)

_________________
'If you don’t find quantum mechanics baffling then you haven’t understood it.' (Niels Bohr)


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 Post subject: Re: On to the next drug, I guess.
 Post Posted: 03 May 2018 14:31 
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I wonder if there is a nationality issue here when it comes to drug usage. Am I right in thinking, mama, that you are American? It could be that your docs have a different approach to the use of some meds in treatments than our docs over here in the UK.

Most people have a 'dramatic response' when given prednisolone, TBH that's no great surprise to me but I daresay it is to you as this is all so new. I ticked over very comfortably on 5mgs for a couple of years which is why it took me so long to get down to zero. Take a drug that helped? That made me feel better and more like my old self? What was I thinking? :roll: Oh yeah, that it was helping: D'OH! :lol: DD


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 Post subject: Re: On to the next drug, I guess.
 Post Posted: 03 May 2018 15:55 
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Joined: 23 Mar 2018 12:06
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stickywicket,

I looked up Lyrica, and it seems that it is not actually approved for treating OA. That's not to say it isn't prescribed off-label for that sometimes. Most everything I see says it's for nerve pain, not bone pain. Even the official Lyrica site has the first use listed as Fibro.

I agree about the erosions. Although looking at my x-ray report....it says possible erosion.

"fall defects at distal metatarsal of fourth and fifth digits bilaterally which could be early erosion"

whatever that really means.

And thanks for the inflammation post. It is interesting....unfortunately, it muddies the water even more. If all my inflammation doesn't point to RA or something like it, I'm at square one.


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 Post subject: Re: On to the next drug, I guess.
 Post Posted: 03 May 2018 16:03 
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Joined: 23 Mar 2018 12:06
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dreamdaisy,

Yes, I am an American. I guess docs in different countries have different approaches. Heck, doctors in this country have different approaches. lol.

And if almost everyone has a dramatic response to pred., then what does my 2 week trial even tell me?

I'm just as confused as ever.

Let me ask another question......I know I have OA in my left knee and big toes. Had that for years. But.....since last fall, all this other stuff started. Both hips, in January both elbows, more recently lower back, neck and heel pain. (last two come and go)

The OA stuff I knew about has progressed slowly. Been there a long time, and hurts more when I overdo.

All the other stuff has happened in a short amount of time and is always there. Worse in the morning, better throughout day or with light activity, and worse at night, or too heavy activity. And the fatigue. Ugh.

So...here's the question finally. lol. Can OA come on more quickly like that and behave that way also?

There seems so much overlap in the 2 conditions. And without bloodwork, it's just hard to know for sure.


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 Post subject: Re: On to the next drug, I guess.
 Post Posted: 03 May 2018 18:23 
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Re Lyrica / Pregabalin. - I didn't mean to imply it was used for OA. What I meant to say was that those on here who take it seem to have it prescribed because their spinal OA has caused nerve damage or maybe trapped nerves- certainly something neurological.

_________________
'If you don’t find quantum mechanics baffling then you haven’t understood it.' (Niels Bohr)


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 Post subject: Re: On to the next drug, I guess.
 Post Posted: 03 May 2018 23:50 
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Joined: 23 Mar 2018 12:06
Posts: 52
Ah, makes sense. Thank you!

So I guess if it helps my pain overall, that might indicate something like fibro.

We shall see.


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 Post subject: Re: On to the next drug, I guess.
 Post Posted: 04 May 2018 09:29 
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I was idly wondering last night whether a super-fit human such as a triathlete would feel the benefit of oral steroids - what would they have to improve? My conclusion was yes, they probably would. All drugs affect the whole body probably regardless of how fit or otherwise it might be. I know TV ads give the impression that they 'target' specific areas but they don't: it's amazing how many fall for that nonsense.

You are at the stage of ruling stuff out rather than in. Every doc has a personal take on what's what and what to do because they are human - I expect you are / were the same in your work or profession, you have your way of doing things. I've often said on here that we, the mere patient, are at the mercy of professionals' opinions and that, so far in my experience anyway, they live with the with theory of disease: we have the reality. I have yet to meet a doc who was visibly affected by asthma, eczema, psoriasis, arthritis or fibro but they are all willing to give me advice on what I should be doing: that's their job but the irony is not lost on me. I would happily bet on a fair few being affected with depression, especially with the excellent diagnoses provided by Dr Google and patients demanding certain treatments.

I have no idea how slow or quick these things can develop, I can only relate to my own issues and from reading other people's stories on here. I know that RA can take one from active to chair-bound in a year but there again it may not. I know that people have aches, twinges and gawd knows what else for years before they discover that something is actually amiss. I didn't know I had OA because it was hidden by the other, you may have only become recently aware of what is happening because you were so used to the OA you had these new events stand out. I am not a doc but one doesn't have to be to understand that each human body works to its own timetable, in its own way, at its own pace and whims and that we are not the masters of our health destiny. We demand answers and regular miracles from those who sometimes cannot give them but from whom we expect so much. DD


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 Post subject: Re: On to the next drug, I guess.
 Post Posted: 04 May 2018 10:50 
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Joined: 21 Oct 2010 16:03
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I'm a believer in getting all info that I can as the truth will be in there somewhere even if it's hard to tweeze out.

This is what our trusted NHS says about pregabalin https://tinyurl.com/y9hm7c7p .

And this is what our 'sister organisation', Arthritis Research UK, says about fibro https://tinyurl.com/y92w8r9c .

And this (bear with me :wink: ) is what the same organisation says about the causes of fibro https://tinyurl.com/y76q29gy .

What I'm wondering, having read the above pages, is if your fall could have messed up some neurological stuff and set off fibro. If so, the Lyrica might be the answer to a maiden's prayer. I do hope so.

_________________
'If you don’t find quantum mechanics baffling then you haven’t understood it.' (Niels Bohr)


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 Post subject: Re: On to the next drug, I guess.
 Post Posted: 04 May 2018 13:09 
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Joined: 23 Mar 2018 12:06
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stickywidget,

what "fall" are you referring to? The x-ray reading that said "fall defects"?

I was hoping someone here could tell me what "fall defects" meant. lol. I have googled that term to death and could find nothing.

I didn't have a fall, like in falling down. :D


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 Post subject: Re: On to the next drug, I guess.
 Post Posted: 04 May 2018 13:57 
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Whoops! I could have sworn you mentioned a fall so I looked back at this thread and read..... "since last fall, all this other stuff started" :roll: We really are 'two countries divided by a single language' aren't we? And I visit US every year, occasionally in the fall / autumn :oops:

Well, if we're talking about the other kind of fall I have nothing much to say. It doesn't make any kind of sense to me but, hey, if the Lyrica works, who cares?

P.S. I, too, looked up 'fall defects' as I've never heard of them. I. too, came up with a blank. It couldn't be a misprint or misreading, could it? Is it worth ringing up for clarification?

_________________
'If you don’t find quantum mechanics baffling then you haven’t understood it.' (Niels Bohr)


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 Post subject: Re: On to the next drug, I guess.
 Post Posted: 04 May 2018 16:10 
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Joined: 23 Mar 2018 12:06
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Yeah, I don't know. It's in the x-ray report. I can call them Mon. and ask. lol.

I started the Lyrica last night. So far, all I feel is slightly woozy. But I'm sure it takes awhile. I'm building up over 2-3 weeks.

I started this journey thinking an actual diagnosis would make me feel better about things. As I get farther into it, I see how muddied things can get and I care less about that. Although, don't get me wrong, I would still like to know.

But now I just want some relief. I am getting better at ignoring the pain, but it saddens me to think of the things I used to do and can't now.


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 Post subject: Re: On to the next drug, I guess.
 Post Posted: 04 May 2018 18:01 
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Joined: 17 Oct 2012 15:50
Posts: 1443
Quote:
I am getting better at ignoring the pain, but it saddens me to think of the things I used to do and can't now.
That's very understandable but try not to dwell on what you can't do. There is still a lot you can do, and there will be other things that, with a bit of a work-around, may still be possible, and then there are the new things you might find yourself doing as alternative ways to use your time and energy (when you have surplus available!)
Something many of us learn to do or just gradually find ourselves doing is living more for the moment and on a smaller scale - we were doing it before it became flavour of the month! I don't know what your weather is like, but in the UK we learn to appreciate the sun showing its face, or a bit of warmth. Noticing and enjoying bits of nature as you go about your day - a flower or a bird - exchanging a smile and greeting with someone, and random acts of kindness from strangers - doors held open, something picked up for you. Getting through the day in one piece, or being able to tick off an important task rather than thinking about major goals you aren't achieving or, even worse, beating yourself up with the 'I should be able to' stick.
A lot has happened and is happening to you and it will take time to assimilate it all and find some way through that suits - however imperfectly!


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