Currently flaring good & proper. I'm managing to keep going but at a snail's pace. There's a lot of joints complaining loudly but it's my legs that are bugging me most, they feel weak all over and moving slowly is (I think) more to do with this and generalised stiffness & tightness too rather than to individual joints. I feel as if I SHOULD be able to walk faster but I just can't.
I have PsA which does affect the tendon attachment points so this could well be the source of the tight feeling. In addition I also have a yukky, soft gluey feeling pretty much all over though I think that emanates from joints. I have only had one flare, though that was a biggy, and that was more of a classic, with large swollen joints that were extremely painful. Plus, to be honest, it was so long ago that I can't exactly remember what it was like.
Has anyone here experienced something similar? I have an appointment with a new rheumy next Tuesday so am going to be alternating rest with gentle exercise till then in case the weakness I'm experiencing is just down to over-doing things. I want to make sure I turn up at the appointment with a better angle on what's happening to me than I currently have.
I have sjogrens and i went through phases where i was flaring every couple of weeks , sometimes ending up in bed for acouple of days. I had a rituximab infusion in april and the flares have settled in the last 8 weeks. When i flared i felt like i was hit by a bus total exhaustion and throbbing pain all over. Its hard to get going after a bad one but i think you are doing the right thing by activety and then rest until you feel better again. Hope all goes well with rheumy 😀
very glad to hear that your flares have now settled down. Thanks so much for replying, it helps to know that someone else with a similar condition (somewhat similar anyway) has experienced the 'all over' pain. I'm used to pain spreading outwards from joints but when it's so extensive I get a bit concerned.
I don't know if you remember but I have PsA as well, and have now missed 2 doses of mtx (sick of side effects and had a dummy spit) and now I'm really feeling awful.
My legs are also painful with pain from my bum (feels more muscular?) going down my legs. Haven't really had this before. Neck and back also stiff, and my throat is very sore. I feel like I've been run over.
From what I've read this disease can be so variable, and if you haven't been overdoing it then it's probably the PsA.
(I've got GP appt this week and I know I'll have to start mtx again as this is worse than the SE. )
Btw, it tags prostate cancer, as psa is also a hormone that has something to do with that too.,
Hi Jefflin. I do indeed remember that you have PsA!
PsA is very variable & I've had it long enough that really I should know that. I try. I think I have had a feeling of weakness in my legs before but the context is very different now in that a few weeks ago I was so very well. The contrast kind of beggars belief but you're right ... that's *%$£@ PsA!
There again, some things have been making a regular appearance over the last 6 months I suppose, in between me feeling like I could conquer the world. So although I have most definitely been overdoing it, I reckon this flare has been coming a long while. One of those 'things' is bum pain. I'd pinpoint under right buttock but the pain is deep inside, it's extreme, it can radiate down the leg. Brought on by protracted sitting especially long car journeys.
I wonder what your rheumy will say. Is the protocol where you are 'failing two DMARDs = being considered for biologics'? Because if so maybe you'd be better off trying another DMARD (assuming Mtx is your first).
Thanks for your really helpful reply. And I'd be interested to hear how your appt. goes.
Thanks. Yes the protocol is failed 2 x dmards = possible biologic but you have to qualify with bloods (ESR over 25 or CRP over 15) and swollen joints too. 20 small or 4 large. At present I do qualify (apart from the length of time on second dmard.
I've been on mtx for 4 months and arava for 2. I saw Rhuemy last week and that's when he said he will "see how it goes" over next 2 months, but he's expecting me to continue improving. (Last blood tests show gradual improvement and I was feeling about 20 % better - bloods showed 30 %)
My problem is that I limp badly due to ankle and foot pain. And even another 20 per cent improvement isn't going to cut it for me, if there's a chance of a better result with bio.
So now I have increasing sore throat (which has been ongoing for months but has ramped up) so I'm off to gp tomorrow. He might by now have the letter from rheumy so might know more about what he's thinking ongoing treatment.
Rhuemy office told me to stop mtx this week (even though I'd already stopped!) until I have seen GP.
Hope you get some answers next week. It's such a horrid disease. The buttock pain I can identify with, as its a new thing for me. It's not so painful as yours but it's certainly there.
I think sitting is the worst, I just seize up and look like I'm about 100 years old when I start walking. It's so awful as everyone notices then I've got to do the old oh yes I've hurt my foot. Unless they "know" about me, in which case I get the pitying look!
Oh yes, sorry, it's all flooding back to me! Some might say Mtx & Leflunomide is a tough combination though I have heard of people doing really well on both drugs together. Sounds like you're inching forward with that rheumy but the wait & see approach is maddening unless you've got A LOT of confidence in the treatment.
I don't think I'd like this percentage approach. I thought the key point of treatment was to prevent irreversible joint damage and anyway who'd be content with limping 10% less or whatever! And since when did mobility issues improve quite so mathematically? It'll be interesting to know what that letter says.
I know you're not in the UK but did you ever see Julie Walter's 'Mrs Overall' sketch? 'Cos that's how I saw myself every time I got out of the car at a service station in the years before diagnosis. And at the moment, come to think of it.
Thanks for your reply!
• in reply to
Possibly I was thinking of Julie Walter's 'Elderly Waitress':
On reflection I'm not quite as amused by this as I was years ago .... I look at people of any age with mobility issues rather differently now. But then it is Julie Walters, so ......
I think that's the key - confidence in the treatment. I just don't have that. After reading about all the people who get damage on inadequate treatment , even without pain I'm becoming less inclined to take the chance.
Hi, I have a pain starting at the top of my leg and is very painful. I have a problem getting up from the couch and the toilet. My son had to get a raised toilet seat it was so difficult for me to get up. I sit with a pillow on the couch and I walk with a stick since I had a fall last December. My legs still feel weak even though I have had my first infusion. I know it takes 4 infusions before it gets into system fully. I am hoping things will improve. Take care Sue
I'm not overly worried but my Mum had MS & rheumatology are meant to be keeping an eye on how I handle Humira, just in case. And at the moment I'm between rheumatologists. So again it's reassuring to know that the weakness is not uncommon with rheumatic diseases, thank you so much for that. I hope things do improve for you, and soon, good luck.
Ouch, at least when you get the swollen joints it reminds people you have this awful disease, because many think thats all it is and when we dont have that we are fine. If only.
That's so true! And for some rheumys, (I exaggerate, I'm thinking of one scoundrel), 'swollen' means the size of a small mountain, nothing else will do. But a good one would probably see quite a few of my joints as swollen. Anyway they're certainly tender, I'm getting ready for some melodramatic yelling!
When I had PMR it was my legs I had pain in and could hardly put one foot infront of the other plus terrible headaches. I think the steroids then masked the start of my RA. With PMR the muscle weakness and pain was overwhelming initially. I hope yours eases soon and good luck for next week xx
That's interesting Cagsie. I do kind of wonder whether I've gone & got a new thing on top of PsA, it happens. But that's for the new rheumy to think about & meanwhile it's just reassuring that to hear that another rheumatic disease has caused weakness, makes me think this probably is just PsA being a swine.
oh yes - i was diagnosed with pmr in '99 but 40g prednisolone daily sorted it lol. nowadays they start u on 10mg... however in 2015 when i'd complained to gp for 4-5 yrs about extreme fatigue i collapsed and ra diagnosed . altho down to7. 5mg daily pred. by that stage the rheumy thought that the ra had been on the go for much longer but pain had been masked by the steroids. luckily no osteoporosis despite 15 years steroids and no bone scans. now back 2 square one w/out my mtx and he has gone 2buy w/chair. xx
Oh my, it's such an absolute ..... don't know what word to use without swearing ..... when these things happen. There seem to be endless reasons why RA etc. can go undiagnosed for ages. But it is fortunate that you do not have osteoporosis. I so hope the wheelchair is comfortable and that you soon master it and can whizz around.
Just seen my new rheumy for the first time & had depo shot in my backside. She seems absolutely great, very thorough and proactive. Funny how knowing that a good doctor has things covered is a kind of medicine in itself, my mood has lifted already!
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Pain on another level.
RA agony, debilitation, biologic not working, pain out of control
Officially one year since symptoms began...
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