I googled the Lyrica data sheet. Listed side effect:
Joint and muscle pain
FFS.
I had to look up FFS, that's added to my knowledge!
So hopefully this is indeed a side effect and one that will be short-lived. But one thing that occurred to me is that 'joint and muscle pain' seems to be listed as a side effect on almost everything. I guess the key thing if it does continue is how bad the joint & muscle pain is ....
Irishchick said:
I googled the Lyrica data sheet. Listed side effect:
Joint and muscle pain
FFS.
I'm not going to take anymore of them.
I got the report back from my hip arthrogram:
Findings: The left hip joint is distended with dilute contrast.
There are two subchondral cysts in acetabular roof measuring 3mm and 4 mm in diameter respectively.
Not sure what that means for me
OK, Irishchick. Wow, Iām impressed with the speed at which you got that back. And Iām assuming your GP will have received it as well, right?
You probably googled just like I did. The first line is just describing what they did with your hip ā they pumped some stuff in so that they could see. Subchondral Cysts on your acetabular roof, well those sound like blisters on your hip socket. Ouch. The question, of course, is why you would have those.
When I looked up the possible causes (like you probably did) it read to me like āwe need to look at this more closelyā. Didnāt notice any mention of fibromyalgia, though. 
If you were eighty-two, that would be one thing. But someone with hip issues visible on an x-ray (and plenty of other systemic symptoms) at twenty-eight ā¦ yup, I may not be a medic, but I think somethingās going on that needs a specialist opinion. Iām guessing (and hoping) that your GP will send you through to someone who can figure this out and sort you out. You already know my choice.
Try not to worry: you now have more evidence that you are not imagining this or over-reacting. Iām so glad that you have a good GP who is on your side. In a strange way, itās good news, in the same way that having my PsA specialists tell me (after being blown off by assorted doctors for years) that my PsA was severe, and that I had a lot of damage. That was a turning point, after which things got very much better for me. This may be a turning point for you as well. Letās hope.
And FWIW, thank you for expanding Sybilās knowledge of internet acronyms.
Hahaha your welcome!
Up until now my rheumy hasn't been very interested in my hip, he has left it to the ortho guys. Not sure if that changes this.
Seenie said:
OK, Irishchick. Wow, I'm impressed with the speed at which you got that back. And I'm assuming your GP will have received it as well, right?
You probably googled just like I did. The first line is just describing what they did with your hip -- they pumped some stuff in so that they could see. Subchondral Cysts on your acetabular roof, well those sound like blisters on your hip socket. Ouch. The question, of course, is why you would have those.
When I looked up the possible causes (like you probably did) it read to me like "we need to look at this more closely". Didn't notice any mention of fibromyalgia, though. ;-) If you were eighty-two, that would be one thing. But someone with hip issues visible on an x-ray (and plenty of other systemic symptoms) at twenty-eight ... yup, I may not be a medic, but I think something's going on that needs a specialist opinion. I'm guessing (and hoping) that your GP will send you through to someone who can figure this out and sort you out. You already know my choice.
Try not to worry: you now have more evidence that you are not imagining this or over-reacting. I'm so glad that you have a good GP who is on your side. In a strange way, it's good news, in the same way that having my PsA specialists tell me (after being blown off for years) that my diseasw was severe. That was a turning point, after which things got very much better for me. This may be a turning point for you as well. Let's hope.
And FWIW, thank you for expanding Sybil's knowledge of internet acronyms. ;-)
I recall something tntlamb said to the effect that a lot of things happen in joints that are affected by PsA. It was in a discussion of how PsA can cause osteoarthritis in joints. I have bursitis in my hip .... or I did, I think it might have resolved itself. I think you can get bursitis without inflammatory arthritis but I'm pretty sure mine was due to PsA. By the same token, I wouldn't mind betting that subchondral cysts can also be caused by PsA regardless of whether they can happen independently.
The blisteringly annoying thing is that if you have 'stuff' going on in joints that stops short of typical PsA erosions (which hardly ever seem to get picked up on anyway, as far as I can tell) then you are often shunted off to orthopaedics or wherever. A diagnosis of inflammatory arthritis joins a lot of dots. They can go on diagnosing the individual dots ad infinitum, but it's the diagnosis of systemic disease that changes the whole approach.
I have bursitis in my hips and knees too. I just really wish they would start joining those dots.
Sybil said:
I recall something tntlamb said to the effect that a lot of things happen in joints that are affected by PsA. It was in a discussion of how PsA can cause osteoarthritis in joints. I have bursitis in my hip .... or I did, I think it might have resolved itself. I think you can get bursitis without inflammatory arthritis but I'm pretty sure mine was due to PsA. By the same token, I wouldn't mind betting that subchondral cysts can also be caused by PsA regardless of whether they can happen independently.
The blisteringly annoying thing is that if you have 'stuff' going on in joints that stops short of typical PsA erosions (which hardly ever seem to get picked up on anyway, as far as I can tell) then you are often shunted off to orthopaedics or wherever. A diagnosis of inflammatory arthritis joins a lot of dots. They can go on diagnosing the individual dots ad infinitum, but it's the diagnosis of systemic disease that changes the whole approach.
And along with the various bursitis that I've had, the soft tissues in both my knees are damaged ... meniscal tears. Even my GP, who admits he knows next to nothing about PsA (except what I've taught him - ha ha!) thinks this is beyond believable that I could have this almost identical damage in both knees simultaneously for any reason except PsA. tntlamb described it to me like over-inflating a balloon until it blows up in your face!
And I had to look FFS up as well. I think it's likely to get regular use from here on ........
Iām proud to have introduced FFS to you all. Use it well!
I just wish this damn bone scan was over I canāt stop thinking about it. Hoping it will show something but not too
Sure that it will.
Bone scan day! Didn't sleep much last night. I am just hoping that something shows!
Good luck, thinking of you - keep us posted!
I'm home. The technician said there wasn't much on it :'( A tiny bit of uptake on the ankle which they xrayed but he said it was barley enough to warrant an xray.
I just know that's the end of the road for me now. I'll be slapped with a fibro diagnosis and that'll be that. :'(
I'm really upset I was just hoping so much for an answer. My fingers are so sore I was sure they'd show something but no.
Sybil said:
Good luck, thinking of you - keep us posted!
No way! Why the heck should a diagnosis of inflammatory arthritis rely on evidence of damage?? Others will tell me if I'm wrong, but I can't see that. The whole idea is to diagnose the damn thing before damage occurs.
You will be distraught right now I expect. You could, as an outside bet to my mind, have fibromyalgia and that could be treated effectively and you could get a whole lot better. But while you even suspect PsA please, please, when you've recovered from this setback, steel yourself to get a referral to the rheumy who has the best reputation in Ireland.
We're here, right? Many of us have experienced despair .... and unexpected turn arounds in terms of great medical care and considerable improvement. Don't give up now.
Irishchick said:
I'm home. The technician said there wasn't much on it :'( A tiny bit of uptake on the ankle which they xrayed but he said it was barley enough to warrant an xray.
I just know that's the end of the road for me now. I'll be slapped with a fibro diagnosis and that'll be that. :'(
I'm really upset I was just hoping so much for an answer. My fingers are so sore I was sure they'd show something but no.
Sybil said:Good luck, thinking of you - keep us posted!
I have an appointment with the rhematologist on Wednesday to discuss the results. I don't know if that bit of uptake on the ankle will be enough?
I am going to ask him though if the redness and swelling in my dip joints could be related in anyway to something else. I showed the pics to my GP and he said you don't get swelling and redness like that with fibro.
I just think I have too many other symptoms to rule out something else. If he really thinks I have fibro ( I still dont think I do unless fibro people can get pain solely in the joints?) then fine but there is also something else going on.
Sybil said:
No way! Why the heck should a diagnosis of inflammatory arthritis rely on evidence of damage?? Others will tell me if I'm wrong, but I can't see that. The whole idea is to diagnose the damn thing before damage occurs.
You will be distraught right now I expect. You could, as an outside bet to my mind, have fibromyalgia and that could be treated effectively and you could get a whole lot better. But while you even suspect PsA please, please, when you've recovered from this setback, steel yourself to get a referral to the rheumy who has the best reputation in Ireland.
We're here, right? Many of us have experienced despair .... and unexpected turn arounds in terms of great medical care and considerable improvement. Don't give up now.
Irishchick said:I'm home. The technician said there wasn't much on it :'( A tiny bit of uptake on the ankle which they xrayed but he said it was barley enough to warrant an xray.
I just know that's the end of the road for me now. I'll be slapped with a fibro diagnosis and that'll be that. :'(
I'm really upset I was just hoping so much for an answer. My fingers are so sore I was sure they'd show something but no.
Sybil said:Good luck, thinking of you - keep us posted!
And you can of course have fibro alongside PsA, that's not unusual. Any movement on referral to Dr Fitzgerald? Glad to hear you sounding determined!
No that will take over a year. To me they're throwing out fibro because they don't know whats wrong. I don't have any muscle pain, no tender points, no headache and no brain fog.
Sybil said:
And you can of course have fibro alongside PsA, that's not unusual. Any movement on referral to Dr Fitzgerald? Glad to hear you sounding determined!
Over a year to get to see Dr F? I don't know what to say. There's got to be a plan B. Beg that rheumy for a re-think ... or at least that's what I'd do & the best I can come up with right now. I guess you do tell your rheumy what you've said here? Sounds like a patronising question, but frankly I struggle to be as forthright with docs as I can be when amongst friends here.
Irishchick said:
No that will take over a year. To me they're throwing out fibro because they don't know whats wrong. I don't have any muscle pain, no tender points, no headache and no brain fog.
Sybil said:And you can of course have fibro alongside PsA, that's not unusual. Any movement on referral to Dr Fitzgerald? Glad to hear you sounding determined!
A year is best case scenario. Worst would be closer to two.
Iām going to just lay it all on the line. I have swelling, redness, joint pain, fatigue, no muscle pain, no brain fog and no problem sleeping.
Iāve been in pain for two years and itās getting steadily worse. Now I canāt drive my car and some days I rely on my mother to make my bed and cook for me because I canāt walk or lift my shoulders.
I feel worse when I forget to take my plaquenil and solazopyrin and NSAIDs help to take the edge off. I also respond to steroids.
Surely that alone is enough to just try something. I know these drugs come with risks but anything would be better than this. I have no life now
That sounds really clear & to the point.
Are you still on plaquenil and sulfasalazine? Because, I mean, they are for inflammatory arthritis .... many with a firm diagnosis of PsA will be on Sulfasalazine. You could ask to try a different DMARD such as Methotrexate. Had you been diagnosed with PsA today you would probably still be on DMARDs for a fair old while (assuming clinical practice in Ireland is similar to that in England) before getting a chance to try biologics.
So best case scenario if you do have inflammatory arthritis would be rheumy agreeing with you and planning more aggressive treatment as soon as is possible. Next best could be rheumy hedging his bets and putting you on a new DMARD that hopefully would help more. I guess improvement on a DMARD alongside the fact that you've responded to steroids would strengthen a tentative diagnosis.
Irishchick said:
A year is best case scenario. Worst would be closer to two.
I'm going to just lay it all on the line. I have swelling, redness, joint pain, fatigue, no muscle pain, no brain fog and no problem sleeping.
I've been in pain for two years and it's getting steadily worse. Now I can't drive my car and some days I rely on my mother to make my bed and cook for me because I can't walk or lift my shoulders.
I feel worse when I forget to take my plaquenil and solazopyrin and NSAIDs help to take the edge off. I also respond to steroids.
Surely that alone is enough to just try something. I know these drugs come with risks but anything would be better than this. I have no life now