On to the next drug, I guess.

mamadeesix

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?

Airwave!

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.

dreamdaisy

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

stickywicket

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

dreamdaisy

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! DD

mamadeesix

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.

mamadeesix

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.

stickywicket

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.

mamadeesix

Ah, makes sense. Thank you!

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

We shall see.

dreamdaisy

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

stickywicket

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 ) 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.

mamadeesix

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.

stickywicket

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?

mamadeesix

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.

daffy2

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!

dreamdaisy

It's been said that coming to terms with a life-changing situation such as ours involves a process which can be likened to the various stages of grief: denial and anger are two factors which repeatedly crop up on here, especially from those who have been blessed with a reasonably good life health-wise. Kathy Lette once wrote that love prepares one for marriage like lace-making does for round-the-world yachting; good health prepares one for arthritis in a similar way.

It's easy for me to say don't dwell on what you have lost, be thankful for once having it, but these are early days for you and it is all very raw. Of course you will brood over what was, that's what people do; getting to grips with what is is never easy but it gets easier the longer the dross rolls on - and roll on it will. DD

stickywicket

I try to make a point of taking up something new and interesting for every cherished activity I have to abandon. It's taken me into places I'd never, otherwise, have been. For the ultra-important things it can be a matter not of 'I can't' but 'how can I?' A bit of flexibility and ingenuity will solve many problems.

mamadeesix

Thank you, guys. Your lasts posts brought tears to my eyes. I am not, by nature, a "take a leisurely walk and notice the flowers" kind of person. I always joke that I have six kids for a reason....I sort of thrive on chaos, business, and multi-tasking. And then there is the competitive nature in me of 5k's, mud runs, lifting weights. There are probably good things to come of all this.....slowing down, taking one day at a time, accepting help instead of doing it all, etc. It's a major shift and I think I'm past denial, but shifting from anger and sadness....but a new thing starting. And that's resolve. Call it my stubborness, lol. Resolve to not let this beat me. I'll get there.

Yesterday my 9 year old wanted to plant a garden. She pulled weeds by hand for DAYS and cleared a plot. She begged for plants and mulch and help to do it. I kept vaguely putting her off. But then, I made a decision to go forth and pay the consequences. So I bought mulch, loaded the bags in my car, helped her plant a dozen or so plants, unloaded the mulch, helped her spread it. It didn't feel great, but was totally worth it. I didn't feel beaten because it all hurt when I was working, I felt resolved to get through it and beat the pain. Today, my hips and elbows and feet hurt a lot!!! But instead of feeling sorry for myself that I am walking like I am 30 years older than I am.....I am proud that I did it and am content to take some acetaminophin and ibuprofen to get through the next couple days.

Now comes the hard part of taking it easy for a couple of days. That, mentally, is much harder for me. That's when I tend to mope and feel sorry for myself. I appreciate everyone's help. You have given me motivation for this part, too.

daffy2

But instead of feeling sorry for myself that I am walking like I am 30 years older than I am.....I am proud that I did it and am content to take some acetaminophin and ibuprofen to get through the next couple days.

Attagirl! You've got a happy child, a reason for hurting, and something that with luck will give both of you pleasure for months.
Over time you'll get better attuned to how much you can push things without excessive payback, and how to factor it in without too much disruption.
I'm a keen gardener - and it's my anti-depressant - so the impact of OA has been hard. However I've decided that as my fingers(the most tiresome of the joints affected) will hurt to a greater or lesser extent whatever I do I might just as well get on with it(within reason) as it doesn't seem to make things worse, and the effect on my emotional well-being far outweighs any payback that might occur.

Now comes the hard part of taking it easy for a couple of days. That, mentally, is much harder for me.

It'll come. The mental/emotional side of something like arthritis is often much harder to deal with than the physical.
Are there quiet activities you can share with your children? They might appreciate the time spent with you and it would help distract from your enforced rest. They might also be willing to help with chores(if they don't already) once they understand the reason why you're not as full of get up and go as they're used to.

catherine2510

Hi Guys, i am new on here i have suffered for 18 months with arthritis in the neck and shoulders, i purchased a cream about 10 days ago and i cannot believe the difference. I have been on every drug, numerous injections and nothing would ease my pain. i have slept for the first time in nearly 2 years i am over the moon. Finally light at the end of the tunnel yipeeeee

stickywicket

Hello and welcome, Catherine. That sounds, I must confess, extremely unlikely but I'm pleased you've found something that works for you.

stickywicket

Mamadeesix, how's it going?

mamadeesix

I started the Lyrica/Cymbalta combo. OMG......after a week, it was awful. It was like I was drunk and on drugs at the same time. And sooooo tired. I felt terrible. Dizzy, spacey. And NO pain relief. I called the doc after 2 weeks and they said stop Cymbalta. Stay with Lyrica only.

A week later, most of the worst side effects went away. I am still more tired than I was (like I needed that side effect) and a bit spacey but much better.

So....am giving the Lyrica a bit more of a fighting change to do something other than give me side effects. After being on it for a month, I feel like it should have done something for me. Basically, I am riding out the last week or two until I can quit. I don't expect it magically to help with anything at this point.

Basically prednisone was wonderful. But short lived, obviously, due to it's terribleness for you!

Cymbalta made me feel crazy and like a zombie. Did nothing good for me.

Lyrica side effects are less worrisome, but still bothersome. I guess maybe tolerable if it helped with pain, which it does not.

So now what I don't know. I go back to the doctor on June 11.
Have no idea where I go from here.

Going back to my no sugar, no white stuff, someowhat keto ish diet. I know it's not a cure, but it can't hurt. And it makes me feel like I'm doing something to help. If even a little.

stickywicket

I don't know if Lyrica is supposed to build up in the system so that it takes a while to work. If not, frankly, I'd see no point in taking it and would ask to come off it.

I understand the thing about tinkering with the diet in an effort to feel you are doing something positive. Giving up sugar will harm no-one though it must be rather difficult. Arthritis Care just advocates a broad Mediterranean type of diet.

Good luck for 11th.

dreamdaisy

Medication often brings more troubles rather than solutions. We live in an age where lovely little pills are supposed to deal effectively with one thing (sometimes there's more than one thing so more than one pill is supposedly required) but all meds affect the whole body and can interact with each other, they are anything but targeted. One of my friends has his psoriatic arthritis beautifully controlled with just one medication, a luxury I have never known, and never will. DD

mamadeesix

Thanks, yes....medications come with a lot of side effects that make things harder. I guess if the benefit outweighs the side effects, that's what you go for.

I called the doc and said the Lyrica wasn't helping pain. But the side effects were at a reasonable level now. I thought she would say to just stop it.

She didn't. She said although I have been on it since May 4th, 150 mg is a very small dose, so increase it. Nooooooo!!!

So now I am back to dizzy, spacey, tired, eye floaters, and a general feeling of tired drunkenness.

But if I don't ride out this drug, I won't know. I just hope this round of side effects tapers off soon.

And who knows, maybe the increased dose will help something. I doubt it, but I guess I have to go through all this to find out.