prednisone taper, what to expect

[SLCR]

I originally started with this PMR as my diagnosis was presumed PMR. I have since been diagnosed with Sjorgens with a side of RA, not the erosive type RA. I basically have mild Sjorgens symptoms with shoulder pain and costochondroitis type pain. I’m 3 months into Plaquenil and am having some relief. I tried to add Methotrexate and then Arava, failed both due to GI upset. Next up, Imuran, but I talked my doctor into letting me give Plaquenil a full 6 months while I taper prednisone. I started 20 mg prednisone in April and I’m down to 13 mg. I know the Plaquenil still needs time but I’m doing a slow taper on prednisone. My question is this, as I taper prednisone is it ok to feel a little pain? My doctor told me my end goal is to imagine feeling no pain and stiffness, then with excellent control with whatever meds I end up on I’ll expect to feel 20% off my no pain days. I tend to be stoic and put up with pain so as I taper I want to know if most people would feel a little pain creep back while allowing the Plaquenil to build up. I hope this makes sense and thank you! Im not wanting the Imuran and want to get off prednisone. My dream is that Plaquenil takes care of it. Thank you as always.

Stephanie

[PMRpro Ambassador]

Is this where you meant to post this question - PMRGCAuk? I only ask because very very few patients with PMR are put onto Plaquenil/hydroxychloroquine so there won't be much experience of it here. It isn't a good steroid sparing approach in PMR.

In the case of PMR, I would say that if you have any pain while reducing you have to be watchful - if it remains steady that is one thing, if it starts to increase that is another, But if you don't have PMR, it is a whole different story again. Is the Plaquenil for the Sjoegrens or the non-erosive RA? You may get more help on the lupus or the NRAS forums.

[SLCR in reply to PMRpro]

The doctor says no PMR, so yes the taper off prednisone is to try the Plaquenil for the Sjorgens and non-erosive RA. I hadn’t even thought about the taper off prednisone for PMR versus my condition might be different. I know so many here are knowledgeable with the prednisone taper so I started here. I appreciate your response, I’ll try the NRAS. Thank you!

Stephanie

[PMRpro Ambassador in reply to SLCR]

Right - if you are just to taper off the pred as he is sure it isn't PMR, the pain aspect probably doesn't matter too much. There will probably be some discomfort as you reduce - pred helps other things too - but the usual cavils don't apply if all you are doing is stopping the pred as it is regarded as surplus to requirements.

It will depend on how long you have been on pred - you should be able to reduce to about 8mg or so fairly quickly anyway but then you come into the realms of returning adrenal function to top up the dose of pred to the level of corticosteroid the body needs to function well. From 8mg you may need to go a bit slower but since you have only been on pred since April your adrenal function should return fairly well.

Good luck - I'm sure it won't be too bad and I hope the new regimen works well.

[SLCR in reply to PMRpro]

Thank you very much, I’m so hopeful for “just plaquenil”, I knew the expert prednisone tapering folks were here!!!

[Wallysma]

hi SLCR I was diagnosed with Sjogrens in the 90's and immedistely put on placquenil to keep it under control. It worked well with no side effects. You know to go to the eye foc every 6 months..right? Thst is so important. Anyway...I developed new pain in 2015 which got so bad I couldn't use my hands. I spent 3 months trying to improve things and/or find out what was going on. My rheumy finally diagnosed me with RA...confirmed by blood tests. We tried methotrexate but I could not tolerate it. Got 2 infections before 1st week was up and felt like I couldn't breathe. So we doubled my dose of plaquenil and added 5 mgs of pred. Reduced that to 3. Fast forward to May of this year I developed a lot of pain in new places but my hands were a nightmare. I had been feeling really sick with horrible fatigue. I had been through a move to new state so figured it was that. Finally saw rheumy who was pretty sure it was PMR and she said IF I responded to pred quickly then that was confirmation. My labs supported the dianosis as well. Started 20 mgs and within 3 days my hands wete better. Her pushing me off the pred dose has forced me off the rails but I kepy trying new doses to get a handle on things. I will say the one thing that you talked about waiting for placquenil to build up...not my experience. It worked pretty quickly. So.....I think you might want to look at that. And pls. if your doc didn't tell you about the eye doc appts pls read up on the side effects. I imagine they did but just to make sure I wanted to share this with you. Do you have the sicca symptoms from Sjogrens? Those lead to my diagnosis. Ok take good care. Good luck and happy healing.

[SLCR in reply to Wallysma]

Thank you for all the information! I am 3 months into Plaquenil and feeling better that’s why I just want to try and give it a chance without adding another medication since I failed methotrexate and Arava due to stomach issues. I had my first eye exam last week and all is well. I have had sicca symptoms for years but undiagnosed, dry eye and dry mouth, raynauds. About a year and a half ago started having sternoclavicular pain, then started costochondroitis pain. Took forever to see doctor and finally decided Sjorgens with some overlap of possible RA, non erosive. I have zero pain except my front shoulders and the costochondroitis. Easing off prednisone and plaquenil 400mg seems to be working, just nervous about tapering off prednisone, but I’m hopeful. I’m pretty sure I’ve had Sjorgens for over 10 years but not diagnosed and no joint pain initially so I just figured out tricks with my symptoms. My first doctor thought PMR due to my shoulder pain and stiffness but the Rheumatologist says no. He also says your diagnosis can be tweaked as you go along. Appreciate the information from your journey. Good luck to you as well.

Stephanie