Just a quick question. I’m on month 4 of taltz and absolutely no improvement yet. In fact I’ve been off work with severe back pain accompanied by both hips, pelvis, shoulder,knee -you get it.
I have 3 back to back flights in a couple of weeks and then an active snorkelling trip. Just don’t know how I’m going to do it.
Basically steroid shots in the bum work brilliantly for me but I’ve had so many now and have worked really hard the get the weight off. Is it worth asking for a prednisone taper for a couple of weeks and if so are the side effects less severe?
In the UK where you are, we are supposed to be limited to three lots of steroids of any type per every 12 months. The main reason for that is try and stop patients developing osteoporosis and adrenal gland deficiency, both exceptionally serious as you can imagine.
As a life long asthma sufferer I had many lots of steroids as you can imagine. Then when PsA hit me back came the steroids again. So for the first 4 years of having PsA I also suffered 7 unexplained fractures. My PsA wasn’t controlled then either. That is not something I would wish on anyone. Also don’t forget steroids increase the growth of cataracts in your eyes too.
Steroid tablets are stronger that the steroid shot in the bum, so you will feel more fizzed and indeed if you put on weight with steroids you will put weight on faster with tablets too.
Hi Flin, perhaps you have enough time to get into a “groove” of effective inflammation help with something like Celebrex or Naproxen. Your doctor can prescribe doses that are effective, I’ve used both. Celebrex for 20 years off and on…mostly on, before PsA set in. I have 3 herniated discs which are no longer a problem. The celebrex trashed my gut for a while so I switched to Naproxen…low dose for preventative and 440 mg twice per day when things are really bad. They really take the pain edge off on the days I’m in a flare. I’ve been on Taltz for over a year. It got going quicker than Humira, Simponi or Rinvoq, but I feel it sort of levelled off…working but nothing to be too excited about. Both the oral and injection steroid work well for me. I am scared of the stuff, wonder drug but I have had a few bad experiences with the oral. It’s great that you remain so active, keep going! Know your limits.
Steroids are indeed a Wonder drug and I am in fact going to start a dose pack of them later today. I just started a new biologic a month ago and I am not doing great.
It sounds like you do have enough time to see some improvement with heavy duty anti-inflammatories so I would definitely encourage the non-steroidal anti-inflammatories. I usually reserve the steroids for when the anti-inflammatories haven’t been working for me, but right now they’re not an option for me. So it is steroids or dust
I’d suggest that you keep a list of all your accomplishments while on the steroids. As you move into super hero status, all sorts of projects suddenly seem attainable! Make lists just so you have things to cross off, it’s therapeutic! Hummm…I think I might be jealous.
The thing is it doesn’t get you on a even keel. It works so long as you’re taking it and then it stops working when the taper dose is over. Four months on Talz might not be long enough yet. It’s first review for the smallest of sustained improvements is 16 weeks so it’s never expected to have worked brilliantly by this time period. If it’s a med that is going to work for you, like all IL17a biologics it should kick from month 6 onwards. I was on Cosentyx and it kicked in marvellously at the end of month 8 and lasted for a good four years. Cosentyx and Talz are sister meds.
The better bet is to get decent NSAID and pain relief prescribed by your GP. I take Etoricoxib as a NSAID, with omeprazole as the necessary stomach protector. Along with that I have Tramadol to take which can be enhanced with paracetemol. So that helps bridge the kind of gaps you’re going through.
As for me I’m now on my 5th biologic - Tremfya which hits IL23 only. It takes two years (rather than the more normal year) to reach full efficacy. I’m 9 months in now, it’s still a see saw ride but at least I’m getting the good stuff too. Next rheumy review is in the October or November so we’ll see what she thinks then.
Thanks so much for your replies. Honestly what we all have to go through. It’s crazy isn’t it. You can go from feeling pretty normal to completely floored. I find the strong nsaids give me terrible gut problems even with omeprazole unfortunately.
My main concern is this holiday in a couple of weeks and the total 6 flights (long) including seaplanes and getting up and down a ladder on the boats. At the moment I’m struggling to get my swimwear on.
Being called tomorrow by rheumatologist nurse to give GP go ahead to prescribe steroid burst. At this moment I’ll take anything to get me in a ‘fit’ state.
Been off work 3 weeks as can’t sit or stand for very long. Anyone else have to take time out of work?
Well, @Flin, I’m pretty sure that with a doctor’s note you don’t have to wear any swimwear. PsA has its perks and people will KNOW that you have something wrong with you! I hope you can come to a good solution and peace of mind.
So sad to hear what everyone’s going through. Everyone has their own story.
I’ve been given 20 prednisolone starting at 20mg for 5 days and tapering. No one really seemed to be able to tell me when to start them so I figure that as I want to be at my best I’ll probably start about 4 days before I fly and that should see me through. Had several different ideas on start date from each health care provider I spoke to ranging from starting today and waiting until I get there (in over 2 weeks)
Now the next battle with the GP to set me up with a letter for the consulate as a lot of our drugs are banned and have to produce docs for transit
Make lists just so you have things to cross off, it’s therapeutic! Hummm…I think I might be jealous.