I went for my US yesterday and he was only able to do upper body, so he did hands and wrists. He did find a lot of inflammation but more on the left fingers and hand. And seemed to think that the fact that I have bursitis in both hips and now also in my shoulder (along with tendon damage) is not to be excluded in the RA diagnosis.
He said I should definitely start with immunosuppressants ASAP! I was upset but I guess relieved to have an answer. I'm going back next week to do lower body, feet, etc.
I'm feeling so unwell. I'm also seeing my Rheumatologist after the scan so that she can start me on the treatment.
I'm terrified of the side-effects but hope I'll be ok...
I know this is crazy... but I now look at my hands every day as my index fingers have changed shape; and I just saw a new thing the middle finger has a growth (like a very small bone under the skin: nodule I guess!) and I also noticed one on one of my toe over a week ago and it's red and small. But I didn't have any of these until a month ago!
I'm scared... my body is visibly changing. I know it's only small things but they literally have just appeared overnight. So maybe it's a sign that the disease is developing fast... and in an aggressive manner.
Anyway, I guess I Should be pleased that my scans did not show damage to cartilage or bone; so I should consider myself lucky and calm down. I guess it's still a scary thing.
xx
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regina79
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It’s a double edged sword. You know your not well . Then they tell you it’s not good and fear sets in but at the same time your just relieved that there’s hope. Good luck
Hi, I was diagnosed this January and started on MTX. I have developed knobbly index and middle fingers since then too! They are tender and late evenings they look red and a bit puffy too. I've taken photos for my next rheumy appointment next week.
You should be delighted that there was no sign of damage! It means that there’s a very good chance that you can get completely back to normal.🍾🥂. I was amazed that my completely useless hands returned to a reasonable condition - I really didn’t believe that would be possible.
I did have minor side effects when starting the drugs, but they didn't last long. Apart from liking an extra hour in bed after MTX night I no longer have any side effects ar all. I put it doen to having a healthy lifestyle, so look after yourself well.
So yes, it’s miserable that it’s looking pretty certain about the diagnosis. But try not to be scared about it. You can live perfectly well and normally with this disease.
All these forums and internet sites are pretty unrepresentative as people who do well rarely post. We only tend to do so when things aren't going so well, so it seems as if the majority of people have problems with the drugs. I asked my rheumy nurse (who has been a rheumy nurse for 17 years) and she told me that she feels that 75% of people have no problems at all after getting adjusted to the drugs. And 5% of people have dreadful problems. So believe that you’ll be in the 75% and don’t worry yourself into have a nocebo effect.
I have had nodules popping up all over my hands in the past 6months and though I try not to worry it is part of the course I feel for some. I will be relieved when I start treatment 'proper' than this patching me up' system by my local GP till I have first Consultant visit.
I feel I have nodules on elbows too and think a couple of toes but will need the xrays etc to see what is happening.
When they have 'hot days' I put Vicks on them for some reason for me it seems to calm them. Plus ice packs too on itchy achy days.
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