Was on Arava for 18 months but been off for 1 year due to hospitalisation for infection, also had bad gastrointestinal probs when on so was looking at coming off beforehand. My Rheumy thinks my symptoms don't 'match' my path results recently (been on pred for years)
I am in a lot of pain shoulders hands hips. See him again on Tuesday but feel like I'm going to get the same response. I was diagnosed PMR 16 years ago or so, was on Pred. high doses but tapered on and off but never been able to completely get off. Also diagnosed Rheum Arth. just after, and was on Methotrexate which relieved the RA but liver and other path after a year very bad and had to have fibroscan. Then the Leflunamide
I am wondering if anyone else has experienced the pain with Path results that seem to be out of context with the symptoms? I don't think I have a low pain threshold as had 2 knee replacements and 2 laminectomies and managed ok.
Last appointment he said the Leflunamide had been working well and go back on, but the gastro side effects were making it difficult for me to go out.
Just feel like a bit of a whinger when I see him, as I know so many others are so much worse and I don't think he wants to put me on biologics etc. as thinks I'm managing.
Feel better putting pen to paper, all the best to everyone xD
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AussiePolyDee
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I had polymyalgia back in 2011, and was put on steroids, they helped, but still had intense pain in buttocks and back. Seen another rheumatologist, who suspected I had an overlap with another condition. I had X-rays of my sacroiliac joints, which were shown to have used. I was diagnosed with ankylosing spondylitis in 2016. My bloods are usually always normal, but the charity quote they 50% of AS patients always have normal bloods, even in a flare. I was also diagnosed with severe adrenal insufficiency, due to being on steroids so long. It was picked up when I had a severe stroke as a result of an adrenal crisis. If you are on 5mg or less of pred, they can test if your adrenal glands are still producing their own cortisol. If not you would need to see an endocrinologist and be given an emergency injection to carry. 🤗
Not everyone’s blood results match their actual inflammation and he should know that. I think you should write down everything you have told us and tell him you are not coping. Be firm, have a look on the NRAS website for some information to back up what you’re saying too. Sometimes you have to push your medical team as it’s your body and you know it best. Good luck.
Hi, my bloods are usually only slightly raised when I have a flare but I was still put on Biologics. My joints were red and swollen though.
My shoulders used to be really bad and at times I couldn’t even dress myself. I’ve been okay with the Biologics.
I tend not to take steroids as I’m a little wary of them. I hope that you are listened to properly at your next appointment and they help you more this time.
Your not "whinging" you need to tell him your not well. If certain meds don't suit tell them that doesn't work for you. There are lots of things to try and you don't have to just suffer. It's really important that you be honest and don't just put up with things to make the consultants life easier. It's his job to help you be the best you can and he's well paid to do it.
I find making a list of issues helps me remember when im with the consultant what I need to tell him.
Start keeping a diary of symptoms so you are armed for your next appointment .If you can photos of any red swollen joints.It does sound like you need to take charge of your care.Ask for xrays , scans of you think something else is going on.
Good luck and let us all know how you get on, be brave.
Over the years the various drugs pretty much ruined my guts and changing over to methotrexate (by injection) biologics (ditto) and occasional steroid shots in the bum were absolute game changers. Prior to the change I had
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having a catch up day :)
