Its ages since I've posted anything as been going through so much pain and fatigue. Today's the day i should get the phone call to be accepted or declined, for the third time, for anti TNF!! It should have happened two weeks ago, but my notes had been sent to another dept and my case couldn't be discussed.
I was feeling so negative about the whole thing and wondering how my life was going to go on with constant pain.
So there's a lot hanging on this decision.
My rheumy has done DAS score on my feet, which is a bit different to the norm. The RA has effected my feet badly and has been a lot of change in them the past year, was took off Gold two years ago!
I went to have them scanned with ultra sound for extra evidence to support my case. The woman doing the scan was amazed at the amount of inflammation present, mainly all around the top of foot, navicular area. It took on exactly the same pattern in the other foot. I have to say i was pleased that the inflammation showed and she was able to take extra images as evidence to be shown. Then a couple of days after, the awful realization hit home about the damage done!
I really don't want any more surgery as had a fusion done to foot, the post- op was the worst, 12 long weeks in plaster and 6 of them non weight bearing, hopping on a zimmer frame!! So i hope to get something like yesterday, to slow down this process.
Been on all the usual drugs, methotrexate, leflunomide etc, so only been on pain killlers with no anti inflammatories, due to the usual stomach probs.
Just needed to share this and i hope you all are as pain free as can be.
Vonnie x
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Vonnie55
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Hi Vonnie, I really hope you get the news you are waiting for very soon.....I know what it's like having been through almost the same scenario a few months ago.....I'd been fighting for a year almost to get onto ant-TNF but kept getting pushed back because of the cost....made me very angry and upset!! I've just started Cimzia so it was worth fighting for.
Can you take Prednisolone? I was basically living on it until Cimzia. Its so horrible all this pain isn't it....sometimes I wonder how we all manage!
I shall be praying now for the phone to ring for you with good news. Take care & gentle hugs. xx
Hi Luthien, nice to hear from you. So pleased you finally fought your way to getting your Cimzia.... as if we've not got enough to fight for having this RA!
I have only taken Prednisolone a couple of times and it seemed to help a little, but I'm forever having various joints injected with steroid, maybe its worth thinking about, taking it orally in future.
I do hope you are getting some good relief from the new drug and it hasn't had too many side effects.
The phone has not rang yet!! May not of course, i think they are supposed to let you know on the same day, i will post and let you all know the decision.
Nice to hear from you Scouser, still haven't herd anything yet, nothing worse than waiting for a phone call!
Interesting that your consultant is going down the foot route for your DAS scoring. I think they should take the feet into consideration, apparently they used to include feet in the DAS score.
I always think that the pain is so difficult to deal with in my feet, as weight bearing obviously makes things worse.... not as if you can put your foot in a sling etc!
Good to hear there is somebody else like me, obviously not good for you, but i hope you know what i mean!
Good news hopefully im hoping you get the phone call!. why taken of gold ??. I came of in January as it stopped working it stopped gradually from oct through to jan( crisis in dec/ jan).. It was ok for me while it worked but gave blood in urine always on dip tests..
Hi summer, i was taken off the Gold two years ago prior to my surgery on foot. It worked well as i was on it for two years, then stopped working slowly. It was the only dmard that brought my ESR levels down, were methotrexate and leflunomide didn't work. My urine checks were always ok.
Interestingly, my consultant feels that my symptoms have got much worse now as the gold stays in the body for around two years!
I hop you get the medication that you are waiting for. i struggled to get my anti TNF was told I would get it at the end of Oct but then all of a sudden I did not qualify then in the February after was told I could. Not sure if it is down to cost and I just missed out the first time. I am also having problems with my feet and should have had surgery to remove bunion and pin big toe and toe next to it but was too unwell to have operation due to massive flair up and felt I could not cope with surgery as well! I noticed that you had a fusion and was wondering on your experience on this. I am worried about movement in my foot and what type of shoe I would be wearing - as this would be for life! I know foot pain is bad and so restricted on what footwear you can have. The nice weather I have a selection of open toe sandals and in winter I live in uggs now. On occasions nice shoes that get kicked off under the table as soon as I can.
I wish you well and a speedy decision with your Meds
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