Pain/Stiffness Cycle

Yes Bobby! I totally get it! I follow a very similar cycle, but go back and forth between joint injections, whole body steroids like you, and taper doses of the pills. It always seems like as soon as the steroids wear off, I'm worse off than I was before. Like you, I also have a lot of concerns over the side effects and potential long term issues. I've been on several biologics as well, hoping to find something that works. Are you currently taking any other meds for PsA? -Leanne, Community Moderator

Hey Lianne,
I have just finished Stelara biological, I think the next one is Inflixumab infusions.
I see my rheumy this week but also pray I get another steroid injection, climbing the walls at the minute especially during the night and morning time too.
I just feel so tired,sore and useless at present.

Ps I am trying CBD oils and paste at present, difficult to say if is helping although initially my hands did feel a little better.

Ah well back to the drawing board.
Hope you get some joy with your meds, gave you found anything that has helped with the exception of steroids?

All the best.
Bobby

Hey Bobby 😀

I know what you mean about climbing the walls at night and in the morning...it seems with as tired as I feel I should be able to sleep no problem, alas that is not the case. The pain seems to keep me up all hours of the night these days. I'm on Simponi Aria infusions and Arava (lefleunomide). I've been on Inflixumab infusions...I had some success with it, but I kept having reactions so I had to stop it and try something else. I do know a lot of people that have had a lot of luck with it. My rheumy seems to really like it because it is really flexible...you can easily change the strength of the dosage as well as the frequency to get exactly what works for you. So that's good 😉

I also use CBD oil...I take a few drops under my tongue morning and night, then if it is really bad I also use the vape oil. I've been doing it for a few weeks now... I've noticed it helps a lot with my back, and to be honest, my anxiety that I've developed living with PsA as well. I'm still working on getting my hands and feet feeling at least a little better too....

I hate feeling so useless too...
Sending gentle hugs 😀
Leanne, Community Moderator

Ah well the cycle starts once more.
Steroid injection yesterday (120ml depo medrone)
What a difference a day makes, no need for horrible morphine pain killers, pain reducing and stiffness reducing, appetite returning mood etc
What I don't get is the amount of steroids I will be offered during flare periods.
For instance
All I seemed to be allowed by all rhuemy I have had is approx 120ml/mg x 5 = 600 ml/mg even at that dose they would like a max of 4 =480ml/mg per year.
I have read of people being on tablet form steroid prednisilone up to 10mg per day, taking this over a year = 3650mg.
This equates to me anyway that some people can have 6 times what I am offered.
I put this to my rhuemy yesterday and got a bit of a fob off saying other countries work differently from the uk.

I do understand the serious side effects of these wonder drugs but surely the patient should have much more say.
Anyone know why there should be so much difference in quantities given.

Anyway, feeling good at the minute that steroid works so quickly on me.

Best wishes all.
Bobby