Spoke with my rheumy assistant today and described my increasing foot/knee pain and greater frequency of flares. He said that I obviously need a “bridge” while waiting for the Humira to kick in. He invited me to an appointment with him for a 160 mg butt injection of Depo Medrol. He said it would likely bring me relief for 4-6 weeks and hopefully the Humira will start to work. In these days of Covid, am I needlessly increasing my health risks? Should I just tough out the pain and hobbling around or go for the potential holiday from pain?
I remember in first year after diagnosis bridging medications before methotrexate and finally biologic kicked in proper were a big help in fighting the pain, looking back it helped me turn around from pain and suffering to function. I probably would in your place, interested to hear Sybil, Stoney and Poos opinion.
I hear you, the idea of another med doesn’t feel. But you’re clearly miserable, so it’s probably not a bad idea.
The other alternative might be an NSAID for a stretch, but that depends on your tolerance for them. It wouldn’t lower your immunity in the same way, but it probably won’t give you the same dramatic relief either.
I’d go for it. I don’t believe you’re worsening your health Covid wise that much by taking it since you’re already taking Humira. Both are meddling with your immune system. They think that’s an issue Covid wise but don’t seem to now analyse why really, given it’s now nearly a year into this pandemic and that was their first rather panicked thought process. Certainly the research out of Italy doesn’t show bioloics make things that much worse Covid wise now. Both types of meds as in biologics and steroids are part and parcel of Covid treatment anyway. I don’t believe with us biologics ‘lower’ our immune system, rather they normalise it. Steroids on the other hand dampen things down considerably. I’d up your Covid awareness and care as in stay away from too many people for a week or two after getting the injection but I’d go for it, rather than not take it just due to Covid issues.
Now for the bad news depo shots don’t work for everyone. They don’t for me. I react as expected to steroids by tablets (feeling incredibly marvellous) but the depo shot did absolutely nothing for me. No change either good or bad. I also reacted well to a steroid shot into a bursa sac. All this associated hip pain vanished never to be seen again it seems. So hopefully it will help you as your rheumy hopes but be aware there are several of us for whom it does diddly squat.
Don’t you anyway also take a decent NSAID?
How long is your rheumy going to wait to see if Humira works for you? That and Enbrel really didn’t work for me but Cosentyx certainly does work incredibly well and it might be useful to keep that in mind too. Not all of us do well on the first tier of biologics either, sadly.
I’m guessing you really need the chance of break though @Amos, you’re a long time waiting for things to turn around some.
If these were addictive, which fortunately they’re not, I’d be hooked.
Steroid injections in the backside helped me enormously ‘at the beginning’. There’s a long foot bridge over a road in Liverpool … straight after diagnosis, and just a few days after the first steroid shot, we went for a short break in the city. I’d spent many months unable to walk more than a few paces unaided and even with help, progress was slow and painful. Thanks to that first shot I made it from one side of the bridge to a restaurant on the other side, with my husband’s help but without stopping and I had an appetite & ate a whole Pizza. I keep meaning to go back there - felt like an historic moment!
The effect of later shots wasn’t as dramatic because I wasn’t so unwell. They just made life much better. As they aid movement there can be a feedback loop due to strengthening of underused muscles.
I’d say give it a go. Although we’re all different, these shots have a generally good rep. I don’t know about the lowering of immunity … hmm, that is a little tricky. I’d probably rely heavily on rheumy’s advice.
Thanks all for the input. My first reaction to another med is usually, “you must be off your rocker!” But then after a good ponder I trust the rheumy. I have this picture of my immune system of having a few too may bricks. The mtx takes a few away but not enough, then the Sulfasalazine takes away one more bringing me a bit closer to normal but the PsA adds more bricks. So we add Humira, the big gun, to erode more bricks. Celebrex is taken as needed but the PsA is sneaky and never announces that more bricks are on the way and the PsA gets good at dodging the Celebrex after 10 days anyway and pain comes back. (Sheesh, you probably nodded off by now.). Taking an nsaid “as needed” doesn’t make sense as it is too slow to help and I never know if the flare just settled on its own or the nsaid helped.
While symptomatic but undiagnosed, it was a spinal injection for a herniated disc that first gave me a degree of whole body relief. 6 months later, knee injections with steroids had the same effect. My quick response to the steroids was part of the diagnosis of PsA.
Both my GP and rheumy said they prefer that I get the elephant dose of backside injection over continued nsaid hit and miss approach.
Rheumy said that he would continue Humira at least four months as he has seen rapid results in some around that time. I got my first Humira Sept. 9. Also, he changed my frequency of Humira injection from every two weeks to every 10 days.
The care I am getting since changing rheumy is fantastic. One email saying that I am miserable and I get a phone call within 24 hours and he listens to me for 20 minutes, unhurried.
I take Humira every week now. Doc bumped it up because I can’t take NSAIDs or MTX. I had read that some docs were doing this for people that couldn’t take NSAIDs or MTX. I was off the Humira from March to September due to COVID, but I am back on it now. Starting over with it and waiting for full affects. Feet, knees, and hands got really bad so I decided to start it again.
Pred help me a lot at 5mg a day, but I get TERRIBLE back pain from pred, so I had to get off it.
That is always the main thing. Like you I trust my rheumy and know I can always properly discuss things.
For me that’s the only way forward with the conundrum that is PsA.
Here’s hoping for you…
Update: I went to pick up the prescribed depo medrol for the doc to inject and, well, I jammed out! I was only 6 days from my first colonoscopy and I was nervous about one more med in my body. It’s still sitting at the pharmacy so I can still get it. But in the last few days I have had a bit of a remission so pain is down to 4 out of 10 instead of 8. I’m content to wait for the Humira…for now.
When I was in Mexico a couple years ago I had a bad flare and the Rheumy I saw there prescribed Depo…I had to give myself the shot - but let me tell you, I fell incredible almost immediately and had no pain/issues for along time afterwards…I say go for it!
Are you on biologics? What has been your PsA journey for the last few years? Thanks
Amos - I hope I am not answering for someone else - I assume your question was for me?? And sorry for the delay. I have had some good years and some bad years. This past year has been bad - so I just started on Simponi…had my first shot two weeks ago. I had to do the methotrexate for three months first before I could get approved for biologics. I hated that drug! I also take hydroxychloroquine. It has worked very well for me in terms of treating my morning stiffness and fatigue. I suffer mostly from tendonitis/enthesitis in various parts of my body. Am hoping to get stabilized now that I am on biologics, though I find it all a bit scary given the covid thing…
Good to hear Corrie and we all would appreciate you keeping us up to date as to how your biologics is working. The shared experiences on this site are marvellous!
Hi all, thought I would update you. I stopped the Simponi after three months as it was having no effect. Since then I have been on a drug break to get my covid shot and some lense replacement surgery. Unfortunately, the opthamologist would not do the surgery as he said it was too risky given signs of toxicity in my eyes from long term use of Plaquenil (11 years on it). So now I am off that too. In the meantime I have landed in hospital with anacute case of diverticulitis, and unrelated (I think), I have blood in my urine…so off to see a urologist, and until my infection clears up, I cannot start on any new biologic. As soon as I came off the hydroxychloriquine my morning stiffnes, foot pain, and shoulder pain returned with a vengence…but because of the GI infection, I cannot even take NSAIDS for pain…so kind of suffering on a few fronts here.
Any thoughts on whther or not the diverticulitis could have started because of immune suppression while taking the Simponi?
It’s certainly possible that there was some role for Simponi for infection, but… everyone I know who has had diverticulitis is not on any form of immune modulation, and are otherwise very healthy.
I tend to think of the biologics as modulators, because for me there has not been an increase in infections whilst on them - they bring my immune system back into line, but don’t seem to suppress it. Having said that, it seems there is a small proportion of people who do get lots/repeated/severe infections whilst on them. Have you had any other infections whilst on Simponi that would suggest it’s a problem?
Very much doubt it as @Jen75 said. For us lot the meds don’t ‘suppress’ they ‘normalise’ so mostly we find we get less infections not more.
Did I hear Diverticultis? believe it or not Its likley inflammation from PsA which can pop up anywhere. Remember PsA is a systemic disease, not joint disease.
Well, I had 3 CT scans and had developed 2 abcesses where the diverticula perforated…so diverticulitis was the correct diagnoses. Having said that, people who have been on long term NSAIDS - which I have (meloxicam for about 10 years), are at higher risk of developing diverticulosis.
You are preaching to the choir about NSAIDS. (says this Metamucil addict trying to control his own Diverticulitis) I am convinced NOTHING does more damage (long term) to our population than NSAIDs and I’m nit excluding the PsA itself to some degree
So I finally saw my Rheumy today and she definately agreed that biologics would be risky in my case. SHe is suggesting Otezla…any thoughts on this?