reducing pred with slow method

[Linny3]

Not sure if I can make myself understood, but here goes.

I started the slow method about 1&1/2 months ago. Everything was going good with 1/2mg decreases. I have stated getting the old pain in hips and neck. I have gone from 15mg to 13&1/2mg in that time. 14mg is the old level and 13&1/2 is the new level for two more days. I usually take prednisone in the evening. I decided to take 3&1/2 mg early in day and take remaining 10 mg at usual time in evening. It seems to have helped the new pain.

I am unsure if I should make the drop to13&1/2 mg as the old level and drop to 13mg as new level.

Hopefully those who have been thru this will have some insight😊

Hope that was clearer than mud😕

[DorsetLady PMRGCAuk volunteer]

I would be saying at 13.5mg for a couple of weeks - ot longer if necessary (how/when you take it is up to you) just to make sure it really is okay.

Once you are sure, then you can commence the next step down from 13.5 to 13mg.

Slower tapering regimes might make it easier to get from higher dose to lower dose...but it's not a magic bullet - if lower dose is too low, it's too low.

[Linny3 in reply to DorsetLady]

thank you for your reply. That is what I was thinking. It looks like at this rate I will die still on prednisone. It is so frustrating.😲😢

I finally resorted to trying thc to help with pain. It didn’t work.

I am trying so hard to remain patient

[DorsetLady PMRGCAuk volunteer in reply to Linny3]

You have been on Pred a long time looking at your previous posts -but unfortunately some are. As we know there does seem to have a wide variety in how PMR affects different people.

..and yes, patience is required😊

[PMRpro Ambassador in reply to Linny3]

I've been on pred for 13 1/2 years - even on Actemra my rheumy doesn't expect me to get lower than 5mg pred. I also need medication for atrial fibrillation and one of those (anticoagulant) I will probably be on for life. So what? They keep me alive and kicking, albeit perhaps not as energetically as I'd like - but alive and able to enjoy what I do.

[Linny3 in reply to PMRpro]

I guess the "so what" for me is 9 fractures, rising blood count and rising eye pressure and begining of cataracs..It feels like time is of the essence. Also developed 7 cysts on my pancreas,who knows if that is from the prednisone? If I remain on pred for another 7 years?????

I shudder to think what I will be like

[PMRpro Ambassador in reply to Linny3]

Eye pressures can be controlled with drops, cataracts develop as we age anyway - and actually not always due to pred - and can be removed easily. And if you have cataracts removed, they can deal with the raised eye pressures at the same time.

Have you not been put on bisphosphonates for the fractures? And I think in 13+ years on the forums, you are the first to mention pancreatic cysts though everything is probably possible. It is so difficult to know whether this might not have happened anyway. But when you need medications - you need them

[Linny3 in reply to PMRpro]

I know ,on one hand I thank God for the pred. On the other hand I am just so tired of it all.

Yes I am on forteo for the fractures, however in 7 months it has not changed my dexa scan nor has it helped to relieve pain as the literatures says it will. I am 74 and showed no signs of these eye problems. My dr, thought I might make it thru life without them. Then a month ago I was told I have the beginnings of them.

[perceptual63 in reply to PMRpro]

I'm 59 and it was found last May '22 that I have pancreatic cysts.

These cysts were found incidentally 2 months after I initially started on a low dose (10 mg) of Medrol and I really don't believe steroids have caused my pancreatic cysts, but this is just my opinion.

I go for a follow-up MRCP this coming June to check on the cysts to see if they have progressed or not.

[Linny3 in reply to perceptual63]

I went from 1 cyst two months ago to 7 the other day. I will need a special endoscope that only a few drs do, to find out what they are.

Good luck with yours.

[perceptual63 in reply to Linny3]

They are finding people who are older tend to develop pancreatic cysts but they still don't know early on which ones would develop into cancer so a lot of us are just being observed for "worrisome features". There is certain criteria that needs to be met to warrant pancreatic surgery such as type of cyst, worrisome features, rapid growth in size, main duct dilation, and/or cancer. PanCan.org is located in the US and is a great resource for all things related to the pancreas. Reach out to them as I have. They are truly wonderful. 🙏

[Linny3 in reply to perceptual63]

thank you for the info

[agingfeminist]

Dear Linny, this is definitely not the way we thought we would be at 70. I am the same age as you and I no longer feel any connection with my former healthy self (and my journey so far is only 3 years). Severe muscle myopathy from the steroids has left me unable to walk far...despite gentle daily exercises (thanks to this forum I discovered qi gong).

Changes in bone are slow, 7 months is not enough to show any difference I'm afraid, even though changes are taking place.

Your doc was irresponsible to use his crystal ball to tell you what changes would happen in your eyes during your life. But the changes in your eyes really are easily remedied and could just be due to age.

I do owe my life to the steroids...I was totally paralysed without them. But this isn't the life I wanted/want. However, as is said, it is a whole lot better than the alternative!

Can you get any help with the pain management for the bone fractures?

Wishing you some respite from this cascade of suffering.

[Linny3 in reply to agingfeminist]

thanks for the reply. I know if not for pred and its side effects, I would be a pretty healthy 74 year old. I agree , as I said, I am thankful to have pred but bummed out that I need to take it at this level. I haven’t had a lot of help with pain management. I just had 2 mri’s and my drs appt is in a week. I vow not to leave his office until I get some concrete help. Wish me luck

[PMRpro Ambassador in reply to Linny3]

It depends what the pain is due to - if it is PMR then the pred is the pain management, which is something many doctors don't appreciate, nor how debilitating pain is when it is there all the time. I am under the pain clinic - but by far the best effects come from my physiotherapy sessions. She encouraged me to join aquafit classes from the local rheuma charity - they were off over xmas and boy, can I feel the difference! Back on Wednesday though

[nuigini]

No problem understanding at all. After almost 8 years on pred my current .5 creep on DSNS is from 12 1/2 to 12. After many flares, I began the .5 reduction from 17 mg. I still have glitches at times and sometimes have to back up on reductions or repeat DSNS steps.

Like PMRpro this approach is keeping.. "me alive and kicking, albeit perhaps not as energetically as I'd like - but alive and able to enjoy what I do." I'll be 74 in March and intend to enjoy my remaining days as much as possible.

I started developing cataracts about four years ago, but they are not caused by pred.

Haven't had a DEXA since 2021, but the previous three showed osteopenia, which had not increased significantly from 2014.

In your position I would stay at the 13 1/2 until the new pain has been resolved before doing another .5 drop. If it doesn't resolve I'd go back to 14 for a week of ten days, then drop back to 13.5.

[Linny3 in reply to nuigini]

good suggestions, thank you

[Missus835]

Hi Linny3. I'm at that same level (14 mg.) I have started back on the CBD oil. It doesn't help much with any pain, but does help with the mood swings. I tried to drop to 13, but 1 mg. was a bit too much. So 14 it is for a bit. Best of luck with the slow taper. I find .5 increments works best for me. Cheers!

[Linny3]

good to know I am not the only one who has to drop by 1/2 mg