MEthylprendnisolone tapering?

[ifeelold]

Hello all,

I was put on methylprendnisolone after a recent blood test showed that my inflammation wasn't being controlled with regular prednisone (10 mg) and intense PMR muscle pain/swelling in knees and shoulders and back.

it was 4 days of bliss at 12mg of methylpred. then this morning, day 5, woke up stiff and pain in shoulders and back.

I'm wondering if this is a normal reaction. am i becoming intolerant of the drug. it has been 11 months of pain. but manageable with advil and lower doses of prednisone. it all out the window now. i'm in pain, advil doesn't help, and the new medication is letting me down.

Do i stick it out at 12 mg or bump up. should i talk to my doctor about a combination.

not quite sure what to do. when i had reached lower levels (5mg) i was beginning to see an end in sight, now my hopes are shattered again.

my doctor says one day i will wake up and there will be no pain. my body is just going to figure it out and it will be gone. is this true?

Sorry for the rambling on. I don't really have anyone to talk to about this. noone understands it except this amazing group. Thank you all for all you do. it really helps.

[PMRpro Ambassador]

"my doctor says one day i will wake up and there will be no pain. my body is just going to figure it out and it will be gone. is this true?"

Only if you wake up dead ... Sorry - gallows humour, my mate and I in the NE of England used to say there had to be something good about being dead!

It isn't usually quite a clear cut as that - most likely there are going to be other things that hurt and you should feel reasonable when on pred plus you have to taper off pred after that.

It didn't occur to him that MAYBE the pred wasn't working because the dose wasn't high enough? He put you onto quite a bit more methyl pred - 12mg methyl pred is the same as 15mg pred - he might have got the same result with 15mg pred. Personally I didn't get as good relief from symptoms with methyl pred, just more adverse effects that I hadn't had with pred.

Swelling of joints isn't that common with PMR - is he sure it is PMR? Especially if advil helped which it almost never does with PMR. Whatever it is, it sounds as if it is getting worse - and the dose you were on was no longer enough.

[ifeelold in reply to PMRpro]

Thank you. He has me on hydroxychloroquine (Plaquenil), just in case its rheumatoid arthritis. however he says it doesn't take effect for 4-6 months... because he is also stumped by my swollen knees. he says there are no long term side effects of that particular drug. ive been on it for a month.

[PMRpro Ambassador in reply to ifeelold]

You have had your eyes checked and will be closely monitored? It does have long term side effects - what makes him think it doesn't?

healthunlocked.com/lupusuk/...

healthunlocked.com/lupusuk/...

It is possible your doctor hasn't met it - but it happens. Make sure you get that monitoring.

[ifeelold in reply to PMRpro]

Very interesting... i had no idea.

[Wallysma]

PMRpro is right. You need to get your eyes checked annually. It is very serious. I have been on placquenil since the 90's. In the beginning my rheumy at the time started me off going to the eye doc every 6 months. I did just that until my eye doc said I could drop to annual visits. I am in the process of looking for a new eye doc now since I moved to new state last year. I never had any.issues which I am happy about. Now they think.after all these years I should be fine but still need to get annual tests done. Tell the eye doctor you are on placquenil and they should know what additional tests to do on top of the usual ones. I never had any side effects at all..but all meds have potential side effects. When I had my first RA flare we doubled the placquenil dose and added 3 mg. of pred. Which controlled the RA for years. Now I have PMR so I am doing the prednisone dance of the seven veils.

Good luck with everything. It's hard to know what is what sometimes. I struggled with that and learning from this site helped me to identify my PMR symptoms so I could know when the pred dose was off and my pain was actually PMR and not one of my other autoimmune conditions. Take care....find a good eye doc. I hope you start to improve soon.

Be well.

..

[gotthis2020]

I am also on Medrol ( methyl pred) it worked better for me over the Pred and also less side effects for me … I have PMR .

My 1st Rheumatologist started me on a lower dose( 12 mg ) to begin and had little success it would help for 3-4 days and then really bad pain again and then I would have to wait a week to even get to speak to the Rheum and all she would say is well if “I wanted” I could increase the dosage and try it and she would call me in 2 months!!! So I started increasing the dosage I had to go up to as high as 32 mg to get to no pain and then I stayed there for a few months (I ended up changing Rheumatologist to have one that was actually active in my care) …the new Rheum was shocked that the first dealt with my med that way!! Anyway she tried a few different things with dosage and different treatments to get a better understanding of all I was dealing with as my pain level was so crazy I could barely stand or sit or get in and out of bed and my knees where also very bad like yours… after we got everything under control wirh Meth pred again we then started the taper by 2mg ever 2-3 weeks until we got to 16 and then started to taper by 1mg every 2-3 weeks and now I am on 6 mg and still no pain (knock on wood!!) as this has been a few attempts and a new amazing Rhuemy to get it right. This has now been 2 years dealing with this and I lived in pain for close to a year before getting the right help and medication. I agree with the others on why your Dr has started you on low dosages and switched vs try increasing the dose… I literally remember the day I had no pain… got my life back!!

And this group has been amazing to learn from and ask questions when you need to… actually more expertise here then my first Rheumatologist… this group is why I went and sought out a 2nd opinion! We are all in this together to help each other so don’t hesitate to reach out for help or ask any questions…

[ifeelold in reply to gotthis2020]

oh my god.... this helps so much.. i see my rheumatologist tomorrow and i have lots of ammunition. i agree that this site is the most valuable site for me. So much experience and good advice on here.

[LIVEORDIEHEREIAM]

ifeelold, I hope your appointment went well and you are on the way to better times! I love your "name"! Everyone here could be using that one!

[tangocharlie]

I asked my rheumie about switching to methyl Pred as I had it by depo medrone injections a few years ago and it worked very well for me. However I know some people eg PMRPro tried it and didn't tolerate it. My rheumie is not keen for me to switch for various reasons like it is harder to calculate the dose and in her experience the side effects are often worse than with Pred. I don't know what to do for the best. I am on Hydroxy (Plaquenil) too but only 3 months so far so need to give it a bit longer

[PMRpro Ambassador in reply to tangocharlie]

"it is harder to calculate the dose" - what does she mean by that? If you are titrating the dose it makes no difference and basically 16mg Medrol is the same as 20mg pred. The tablets are less convenient, 4mg and 2mg. As for the side effects - I found it awful but many people, especially in the USA, take it without any problem, Everyone is different.

[tangocharlie in reply to PMRpro]

Not sure why it's harder, I shall ask. I think it'd be worth a try. I'm guessing if the side effects ARE worse I'd soon know and could switch back to Pred?

[PMRpro Ambassador in reply to tangocharlie]

I was switched from pred to Medrol and back to pred without any problems in that sense.