prednisolone how long before taper & stop

[Beau2016]

hi all, I’ve recently started cellcept and prednisolone having been on HCQ for 7 yrs.

Lupus is now affecting my skin, heart and lungs as well as joints, fever etc etc etc

I’ve been prescribed 20mg pred for 1 week, 15mg week 2, 10mg week 3, tomorrow I start week 4 on 5mg.

I felt SO good after 3 days of 20mg, but now I’m tapering down, I’m starting to notice fever and fatigue is worsening.

I’m on week 2 of cellcept up to 1000mg a day and so far side affects are not too bad, but too soon to notice improvements.

my question is, should I contact rheumatologist and ask to stay on prednisolone for longer?

I want to feel like I did 2 weeks ago, I tasted wellness for the first time in years and want it back.

Thank you for reading

much love x

[Calicoandblack]

Hello Beau2016, it may be worth asking your rheumatologist if they can extend the prednisolone a bit longer. My previous course of prednisolone (alongside methotrexate) was just like yours for a month and I felt the symptoms coming back at lower doses too. This time I've been put on a 7 week course, but again I can feel the pain levels going up as the dosage comes down. I've now been switched to mycophenolate (cellcept) btw, but for uctd not lupus.

Hope you feel better soon and hope the mycophenolate helps us.

[Beau2016 in reply to Calicoandblack]

Thank you. So I was brave and called the hospital today and they agreed to restart me on 15mg and taper down over 8 weeks rather than 4. I'm so relieved.

I so hope the mycophenolate is helpful for you too.

Much love x

[Calicoandblack in reply to Beau2016]

Glad to hear they agreed, and hopefully this will give a bit more relief whilst the mycophenolate kicks in!

Thank you🤞 🧡

[Cas70]

I do sympathise - I am in my 70’s and am determined to stay on 3mg per day for what remains of my life - coming off it is too painful. Ask for an extension and if there might be an alternative drug. Good luck

[Beau2016 in reply to Cas70]

Thank you, I find it so hard asking for help partly because I went undiagnosed for so long I gave up asking. Anyway I did ask this morning and hospital have already responded and restarted 15mg dose with taper of 2.5mg rather than 5mg. I feel very relieved.

I hope you are able to maintain quality of life.

Much love x

[Cas70]

I’m pleased for you Beau - I just know that we have to fight for everything! Under the Patient’s Charter we are allowed 2nd and 3rd opinions and to choose the Consultant/Dr we want. Worth knowing. I don’t know your age but if younger than me, then you can come on and off it and just tolerate the bad times - good luck

[Beau2016 in reply to Cas70]

Yes its a fight for sure!!

I'm 42. This is the worse flare I've had since my late 20s. I was mostly in remission during late 30s. It's an up and down journey isn't it.

I have had a referral to Bath Lupus clinic accepted after I requested another hospital, but they can't see me till next year.

Onwards and upwards...I hope.

x

[Calicoandblack in reply to Beau2016]

We're the same age :)Do you have any muscle symptoms by the way?

[Beau2016 in reply to Calicoandblack]

👭

Yes, started with constant muscle pain, mainly around hips and shoulders. This threw everyone off thinking I had AS or Fibro or UCTD.

Then muscle twitching which feels like muscles jumping (don't know how else to describe it!) around my back and ribs. I know have costochondritis most of the time. Muscles/tendons in my hands seize up and I can't use them, I've had TONs of scans as docs convinced it was arthritis, scans are always normal. My right hand gets stuck in what we call 'the claw' 😜

Over the past 12 months I've noticed weakening of my arm and leg muscles, visible changes to muscle tone in my legs which I suspect is due to feeling too ill to exercise.

[Calicoandblack in reply to Beau2016]

How are you feeling now? Any improvement from the cellcept yet and did the steroids help? I'm now on the full dose of mycophenolate (2000mg) and hoping it starts doing it's thing. The last couple of weeks have been challenging, possibly from the tapering steroids.

[Beau2016 in reply to Calicoandblack]

Hi apologies for taking ages to reply.

Tapering off steroids wasn’t great so I’m back up to 12.5mg, I’m also at 2000mg of mycophenolate which I think might be working!! I’ve done 5 weeks now and significantly less pain & fever. Side effects haven’t been awful.

How about you ? How’s the past week been?

[Calicoandblack in reply to Beau2016]

No worries :). I'm so glad the mycophenolate seems to be working for you!👏The prednisolone tapering was difficult these past couple of weeks with increased pain but I'm off it now after 7 weeks. I'm also on 2000mg mycophenolate now (into week 6) so hopefully it starts working soon 🤞.

[Calicoandblack]

I had a lot of weird muscle twitching for a while but has stopped now. However muscle weakness (difficulty climbing stairs, walking more than a few minutes) and pain continue.I'm also unable to exercise... A catch 22 as I'm sure that's leading to further muscle loss 🤷‍♀️

[michaellasmith Administrator]

Good Morning Beau2016,

My response was going to be, to tell you to contact your Rheumatologist for advice, however I was not quick enough.

So, since you have done this.... how are you feeling since amending the dose?

Keep us posted on how you are doing ❤️

Warmest regards,

Michaella

[Beau2016 in reply to michaellasmith]

Hi Michaella

Thank you for replying

I'm on day 6 of increased dose now and feel improvements especially in terms of fevers and fatigue. Even walked my dog last night!

I've another 10 days at this dose and then taper at 2.5mg which will hopefully be easier than 5mg.

xx