Still lurking here but wanted to throw out a question about nasty SI joint pain - I’m talking about life altering pain. It’s been just over two weeks since this started and I’m going a little crazy. Typically issues happen and start to taper off by this point, not neccessarily go away but at least reduce.
Fortunately I have a rheumatologist appointment in 2 weeks.
I can’t bend, I can’t sit for long, I can’t lift anything - my left SI joint is a zinger if I move the wrong way or stay too long in one position. It radiates across my low back and hips area. If I accidentally twist, ugh. Getting up from sitting or bed in the morning has me hobbling. Getting dressed/undressed, putting on shoes…geez, this is ridiculous. I can walk a bit or ride my bike - seems to loosen things a bit. Haven’t touched weights in 2 weeks either of course (usually gym 2x a week).
This is on top of a swollen foot for off & on since January (plantar fasciitis, achilles, top of foot all randomly alternating). This makes walking off the SI joint pain hard. So - yeah I think my Rinvoq/methotrexate has stopped working.
Anyway - really just wanted to ask if anyone has done any of those injections or ablations in their SI joints or what they have done to help alleviate this, its so bloody painful. Celebrex helped a little but my GI tract and NSAIDS aren’t so compatible so I’m not taking it around the clock. Hoping my rheumie can help, maybe change meds ? Maybe a scan ? Everything takes so long to happen.
Maybe this is more of a rant but any advice is greatly appreciated !
Yikes! You are putting up with a lot of pain. The only quick imaging that you will get is an x-ray…which can be very helpful seeing if there are structural issues. Also from Canada, I understand the long waiting process. A good physio can help with doing the right sort of movements but unless you have insurance, count on $100/visit…and they usually want you back often. I have a family member going through similar SI joint pain. x-ray showed considerable bone deterioration but at least the physio knows what she is working with and sticking to her exercise routine has helped. Go vote for whoever will dig us out of the health care crises we are in!
I’ve always had SI type pain. Not quite as intense as yours but it was always there.To a lesser degree when Cosentyx was working well for me but it remained a niggle which I complained about vocally.
I started Tremfya in December and for the past 8 weeks I rarely have back pain. It’s only now that it’s gone and reduced so significantly can I see how much it was bothering me. I had a review of Tremfya a couple of weeks ago and whilst stupid things can flare up for a day or two still, overall I’ve had significant improvement. Mind you I flared really badly with the first two (loading doses) of Tremfya but once I got on to the 8 week gaps between injections, everything has calmed down lots, the SI joint pain most of all. So that should give you a little hope if nothing else.
I would think it’s really clear your present med regime isn’t no longer working for you.
You do take a stomach protector like omeprazole with your Celebrex don’t you? You really can’t take any NSAID without one.
LOL I voted and with the results I’m not sure if anything health care wise is gonna get any help.
I will definitely be asking my rheumie about a GOOD physiotherapist. My GP recommended one over a year ago when my other foot was swelling and he was pretty useless. He kept saying I should go get more blood tests for RA and that he didn’t know what exactly was going on, all the while saying this was going to take several visits. If you don’t know what you’re doing, say so and don’t waste my time…I never went back.
Yes I will definitely be asking about a drug change - adding the methotrexate a little while ago certainly hasn’t made any difference, it’s almost like it made things worse.
Funny how the absence/reduction of pain clues one in to just how much pain they were in…quite the tolerance we can build.
I do take pantaprazole - I have probably been on it too long. My bone density is not very good and my rheumie was applying for me to be on a 12 month monthyly injectible drug to help build it up. Apparently being on pataprazole isn’t good for bone denisty (I know it’s not the only cause my issues) but I have tried to stop it and the gastritis just won’t stay away.
Sadly once on a PPI like pantaprazole or omeprazole - getting off them is difficult. You should probably change the brand to another one.
I had significant bone density issues, life long asthmatic so lots of steroids on occasion, spent the first year of PsA on low dose steroids very stupidly too. So I spent the first three years of PsA having a total of 7 unexplained fractures all from low bone density. My PsA wasn’t at all well controlled then so it was very grim. However I was given a monthly tablet called ibandromic acid to take for 5 years. That is the normal way to treat bone density issues as the treatment last five years. I had another DEXA scan at the two year mark and my bone density was miraculously back to normal. I haven’t fractured anything since I took the first tablet too. For me it was an amazingly easy way to fix this. It also helped to just then focus on PsA treatment and optimising that. One of the factures to a rib happened in a MRI machine if you can believe it! The rest of the fractures were in my lumbar spine and pelvis.
I have used the stomach inhibitor but it didn’t help the Celebrex issue. But once off Celebrex my gut issues cleared up. I’m using low dose coated naproxen without the stomach med and so far am doing ok. Still trying to figure out nasty headaches that come randomly and stay all day. Always situated around behind my eyes…terrible pressure. Seem somewhat related to barometric pressure but not always. There are some studies that say PsA can definitely cause pressure headaches but rheumy says it doesn’t happen.
Ouch - that’s quite a few breaks - so glad your bone density built back up ! I didn’t realize the drugs could be so effective.
I’m a candidate for this newer treatment because I haven’t tried any of the others. It’s called romosozumab (EVENITY). I broke 3 ribs in 2019 crashing my bike and falling on it, and have cracked them again 2 more times since just by leaning on something…which lead to a the DEXA scan. Lots of family history of osteoporosis and osteoarthritis so add in the PsA and well, gotta do something.
It’s really too bad steroids are so hard on the bones - I would love to take them when I flare.
On the bright side - I whined to my rheumatologist’s office yesterday and managed to move my appointment up to Friday - 2 days from now instead of 2 weeks.
Yikes! So sorry you’re having such an issue with your SI. I’ve had quite a lot of SI pain (plus spinal pain in general) and it is awful and debilitating! I’ve had Epidural Steroid Injections in the past which helped to a degree. But it wasn’t until I was finally on Humira that I was able to untangle what pain was PsA from what was stenosis or disk herniation/disintegration or scoliosis or something else. Fortunately Humira has kicked quite a bit of the spine pain down to almost nothing and now we’re thinking the SI/leg pain/numbness can be addressed with another ESI. Hopefully with the PsA now dialed down it will be much more effective much longer. I’m not crazy about steroids but at least the injections are localized rather than full body systemic. So in my case used very judiciously I should be OK. I don’t know if an ESI is feasible for you but it may be worth discussing with your dr.
All the best to you!
Since Cosentyx stopped working for me last summer and up to February this year - I took a few three day steroid hits as prescribed as I simply had to. Rheumy was happy nothing untoward would happen fracture wise. She was right. But I’m guessing that’s because my bone density is now treated.
Now that Tremfya is kicking in for me - amazingly quickly for this med too, I’m so relieved - there is no need for steroids right now. But I keep forgetting to pace properly as I feel too good.
Well…were do I start…went for a bike ride yesterday, like I did two times last week. Starting feeling some weird leg pain at the end of it and when I got off my bike - INTENSE pain left side lower back around to the front. Went in and lied down on my bed, propped with pillows, so much pain. Walked into the kitchen for some water, left foot started tingling. Back to bed, couldn’t get comfortable. Decided to shower since I might have to see someone - foot tingling again.
Six miserable hours in emergency to find out I probably pinched a nerve somewhere, SI joint or sciatic. Three hours before I saw the doc, then shot of Toradol, and inconclusive xray, and an opiod for pain. I am on a (hopefully) fast track MRI list. Never had opiods before but I did sleep pretty good, though I had to take another in the middle of the night. So - continue the Celebrex and rest for now.
Honestly, I think I’d rather give birth to another kid than repeat yesterday. This morning still foot tingling and most of the pain is on the outer hip if I find the right position to prop myself up in a recliner. A little scared of opiods but I’ll take half a pill later if I need too.
I guess this is more of a vent - you read about things like this happening to folks but holy cow, you take it I guess because you have no choice.
Mom_Cat - love the name and my cat seems to know I’m suffering as she’s overly affectionate at the moment. I see my rheumie tomorrow - will definitely ask about ESI.
I take Tramadol daily. Less of it now than when Cosentyx failed me. But it keeps me ahead of issues. And I also take Arcoxia a similar NSAID to Celebrex. Both of these are rheumy prescribed. She’s of the view staying ahead rather than chasing pain is better. As sadly the type of issue you experienced is always around the corner.
Outer hip pain is better than inner groin pain and the latter usually indicated hip joint issues. Outer hip pain can indicate bursitis but since it was your foot that hurt, it’s likely all those outer hip tendons are presently unhappy with whatever nerve you pinched in your back or SI joint.
I’m always amazed how you guys don’t take regular pain relief across the Atlantic. As most of us in the UK would be prescribed something and it is heavily monitored. We do live with pain from a chronic condition, in most cases pain relief of some regularity is helpful consequently.
I do hope you get that MRI soon. We can buy them privately here for around £300 per body part scanned. As you’re not radiated by it there are lots of private providers. I ended up buying one a couple of years ago as I was hobbling from what I believed was hip bursitis but given my fracture history rheumy said get an MRI. With rheumy I would have to wait at least 8 weeks and through my GP it was at least 3 months. So I went and bought one. The result was acute bursitis as I thought, so got a steroid injection into the right bursa sac also privately and within 5 days of the MRI scan I was walking normally again at a cost of about £800 but it was worth it rather than waiting months. I couldn’t afford that often mind, but I was going away for a weekend and I wanted to be able to walk.
Don’t forget ice and heat and swapping from one to the other every five minutes is good for bringing down inflammation. The sudden change in temp reduces things.
I’ve had Epidural Steroid Injections in the past which helped to a degree. But it wasn’t until I was finally on Humira that I was able to untangle what pain was PsA from what was stenosis or disk herniation/disintegration or scoliosis or something else. Fortunately Humira has kicked quite a bit of the spine pain down to almost nothing and now we’re thinking the SI/leg pain/numbness can be addressed with another ESI. Hopefully with the PsA now dialed down it will be much more effective much longer. I’m not crazy about steroids but at least the injections are localized rather than full body systemic. So in my case used very judiciously I should be OK. I don’t know if an ESI is feasible for you but it may be worth discussing with your dr.