Hi all, had my first ever rheumatologist appt yesterday which was a bit of a rush cause it turned out they squeezed me into an injection clinic appt as soon as they could cause my swelling and pain was accelerating so much. It was a lot to take in within such a short appt but she was so nice and helpful. Obviously I'm no expert but the rheumatologist is leaning more towards psoriatic than rheumatoid because it's mostly big joints (not in fingers or toes yet) and my sister had psoriasis when she was wee. Looking at the leaflet there are a fair amount of other symptoms I don't have. Is this common not fitting in to all symptoms for a particular arthritis?
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I would not worry too much about a label as 'rheumatology' covers a wide range of conditions and everybody presents differently and no two people are the same and further symptoms can develop over the years. Some of the drugs work better on some types than others but again there is no guarantee which will be the one for you. There is not a precise science for this disease and it is trial and error to find the right treatment. Keep your own notes on drugs you are given and any side effects as over time this can be useful as a quick reminder as our doctors and nurses change and it can be quicker if you know your own history and we forget. Farm
I have been told I have anti-ccp positive RA but I get pain in my finger tips which they say I shouldn't get and all sorts of other things they say don't match RA but I have them
Thanks Gretchy, sorry to hear about your pain sounds like we're all totally unique. If only unique could always be pain-free.
I have psoriatic arthritis but don't have all the symptoms that are typically listed. I'm sure this is true for many of us.
Quite honestly I'd rather like a rheumy who leant towards PsA on the grounds that it can be quite a difficult one to get diagnosed, sounds as if she's 'PsA aware'. So if you do turn out to have it, at least you won't have had to go all round the houses to get it recognised, if you see what I mean!
Have you ever had any skin rashes or 'dodgy' nails? Not everyone with PsA has psoriasis and by the time I was diagnosed with PsA I'd pretty much forgotten the rash in my armpits, even though it had lasted for 20 years! Diagnosis of that had been so hit and miss, psoriasis had been one diagnosis amongst many & anyway I'd got used to it and it had cleared up before PsA hit hard.
I've never had 'sausage digits' and they would seem to be classic signs of PsA. Are there any particular symptoms you've read about that you don't have?
Yep, I'd rather have a rheumy who gets their thinking cap on and considers different possibilities from day one.
Hi postle2, that's a really good way of thinking on it thanks. I've never had the skin condition but others in my family have - it was one of the first things I was asked. Based on the leaflet I was given: No nail issues, no sore neck or spine, no sausage fingers. Diagnosis seems to be based on the fact it's really going for my tendons and is causing pain/swelling in the big joints rather than the wee ones (so far). Did you get good physio advice? I'm just going on instinct as to how much I should move vs rest but I've been referred to a physio.
Hi there, I haven't had spinal issues either, though slightly concerned that may be changing. That's over 5 years on from diagnosis though. And while my nails did help with diagnosis, they're okay now.
Tendon involvement is a biggie with PsA so I can see where your rheumy is coming from. PsA causes enthesitis which is inflammation of the tiny (but surprisingly painful and numerous) points at which the tendon attach to bones.
I had some physio advice in the beginning but didn't take much notice of it because almost any movement was so painful. I know better now! When you go from being very active to being told to raise and lower legs 50 times a day it seems an incredibly boring and soul-destroying activity, especially when it hurts like hell. But I got pretty bad muscle wasting around my knees from being so sedentary. I think keeping moving, as much as possible really, is an excellent idea with PsA but also with other forms of inflammatory arthritis. If your knees are involved it's important to avoid twisting movements such as are used in swimming breaststroke. As I understand it, exercise has a beneficial effect on the body at a chemical level as well as strengthening the muscles and tendons which support joints and therefore help to limit joint damage.
Hi, that's such good advice thanks. Hope things pan out ok with your back. I'm the same, pain puts me off exercise and also cause I don't have an awareness yet of what damages tendons or joints. I've noticed gentle movement benefits my knees so I end up sort of marching on the spot when I'm standing and moving them a bit when resting. Twisting is the worst with my wrists just now, it catches me out doing the simplest of things and all of a sudden it feels like the insides of my wrists are rattling and jarring. My first steroid shot seems to have made slight improvements. It makes such a difference sharing experiences but obviously I wish no one has to go through this at all.
It's very common for the rheumies to change their diagnosis. HelixHelix once wrote on one of my post something like "...inflammatory arthritis is like a citus fruit. Doctors once thought it was an orange, then they thought it was a lime, now it's a grapefruit.. Don't worry." Such an odd message, but one that means alot to me.
I have PsA. Main symptoms sausage fingers. Recently had isotope body scan which confirmed main area of inflammation are my thumb joints and 3 fingers. 1 was swollen for 8 years and only got diagnosed as PSa last year. I have lots of other area of pain but at least I know this is OA. Have had 2 types of DMARDS now starting on Otezla a new drug. Have a very tiny patch of psoriasis on my elbow and that S It! We are all different. At least your has been disgnosed
Oh bless you suffering that for 8 years, an isotope scan sounds fascinating although obviously we would rather not need these procedures at all. Sounds like you're on the right track now. Sometimes it seems odd to have a 'like' button for us all sharing our pain but I'm so glad we're all here to help each other. Aye, we're all totally different with symptoms.
I don't think they do the isotopes often. It was really to confirm inflammation before starting on Otezla which is very expensive. Involves injection of radioactive stuff then having immediate scan to see results in hands and feet
. Returned 4 hours later and had whole body scan. I was in agony after doing a bit of walking round shops in between and then lying flat for 30 mins. Worth it though
Isotope was no problem. Cannula yo i next m&s radioactive substance in body. Immediate scans of feet and hands. 3 hour wait then laid down for whole body scan. The worst but was 3 hour wait as I did a bit of shopping in between and wore myself out!!
I was diagnosed with RF and anti CCP positive RA but I also have sausage fingers (associated with PsA) and widespread enthesitis (associated with ankylosing spondylitis). I think there is a lot of cross over.
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