Hi guys saw the rheumy yesterday and he says he wont prescribe anything else until I have a scan done - stick with methotrexate and steroids for now. I've already failed on sulfa and leflunomide. It's 31 weeks waiting time here for a scan so I'm less than impressed!
He's now saying I may have Fibromyalgia too is this common to have both?
He told me if the scan shows significant damage they will offer biologics but if not "life becomes more difficult" now just what does that mean? Anyone??? Cheers M x
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marie66
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Thank you, I'm seeing an alternative nutritionist and she feels I have a virus or some sort causing some of my symptoms. I haven't heard of a mycoplasma infection, thank you.
I have both, fibromyalgia came in 2010. Tried the suggested meds to no avail, too many bad reactions! I am currently not on any meds for it, I am trying to get my inflammation under control from the RD first. My cousin has had fibromyalgia for 20 years now, and she is well controlled with Lyrica.
It does seem relatively common to have both conditions. There are many theories about the cause of fibromyalgia, and my bet is that eventually researcher says will work out that it is due to a combination of factors, from genetics, infections, other environmental triggers and psychological stressors.
As for what your doctor meant, it's basically that if you don't qualify for biologics then the treatment choices available to him will be limited. So life will be more difficult for you.... however there are new drugs appearing like the JAK inhibitors that might become more available, so don't despair.
I kinda thought that was what he meant as I'd already failed on sulfa and leflunomide - got the impression from him, there's now not much more left except biologics. M x
I'm a little bit cynical about the fibromyalgia being tacked on. This was slapped on my differential without even being seen! I was in fact experiencing side effects from sulfasalaxine at the time.
I'm sure some folks do also have fibromyalgia, however, it can also be used as an excuse for all symptoms if you're not careful.
Sorry to be a cynic. Just my experience. And I'm no saying fibromyalgia isn't unpleasant, and horribly painful (my friend has it). It's just that an awful lot can be blamed on fibromyalgia.
Hi, I was told I may have fibro as well but the treatment would not change even if I did so it would make no difference if I have or have not. For me the symptoms cant be related to meds as wasnt on any other than steroids (which id had before due to asthma chest infection on and off throughout my life) at the time, now Im on all sorts but not in remission yet.
Hope scan can be speeded through as you are feeling so unwell.
Thanks. I don't think my symptoms are drug related either as things got way bad before I even started any! I was just concerned he may revise the diagnosis and I'd been injecting methotrexate for nearly 2 yes for no good reason!
Think that's unlikely to be the case as he agreed you don't get massive swelling like I've had with fibro so either I don't have fibro or I have both! Typicallying me! M x
No. I wasn't saying your symptoms were caused by side effects. I was trying to show how easy it is to be misdiagnosed. You may or may not have fibromyalgia, however it does seem to be a diagnosis that is bandied about a fair bit (usually women). Then often folks are told there's not much to be done about it.
Yes that's kinda my worry Netta, as with some others, i get the impression it's an easy way out, a kinda get out clause where they don't need to give you the more expensive Rheumatoid drugs. Does this happen?
If with fibro, you don't get swelling like I had to begin with and still some wrist fingers and ankle swelling now, a fibro diagnosis won't fly with me and if it comes to it, I shall just tell him so! My rheummy is not very anything really, i haven't connected with him but I shall do my best to stick up for myself - you lot here have taught me that much! ((hugs)) M x
My old doc tried to stick me with multiple diagnoses like TMJ, migraines, depression, irritable bowel and interstitial cystitis to substantiate the fibro diagnosis --ALL FALSE! I currently fall in the UCTD arena with a trusted new rheumatologist. Biologics have been my biggest help. Stick up for yourself! You know your body better than anyone!
I was diagnosed with anti-ccp positive RA last year. I failed on four dmards and couldn't show enough damage for biologics. The it gets difficult but is they then say there is nothing they can treat you with and you are left to cope on pain killers. At this point they tried to say they thought I had fibromyalgia too and finally they said I don't have RA and they think they got the diagnosis wrong. Meanwhile I can't move my joints and the pain continues.
Thanks for that. I'm hoping they won't do that as methotrexate has helped a lot -I just can't tolerate a higher dose,it was the same with sulfate and leflunomide was working good until I developed bad skin discolouration and had to stop.
I don't think they'll remove methotrexate injections as it's the one that's helped most but Hey ho in the end who knows! M x
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If not RA then what is it?
Hi! I am brand new to this site. Just found you today. I have RA, fibro, and polymy. rhuematica.
RA
AS and RA
