Too big a taper of prednisolone? What are the symptoms?

[pomeranion]

I have experienced the worst fatigue and weakness ever. I really scared myself. I tried to taper way too fast. My shoulder pain returned over a period of days and then the overall feeling of being unwell and overwhelming fatigue and whole body weakness. Slept for hours and never felt renewed. I was on such a high dose of prednisolone so felt compelled to taper quickly. Even with all the warnings from the site. I have upped my dose today. How long will it take for me to regain some relief? I know there is no easy answer or one that will apply to everyone. Possible diet modifications and hydration? But please offer some advice and suggestions to get me back on track. I value all of your expertise and experiences. Thank you in advance.

[MrsNails]

Hi, what dose were you on & how fast did you taper to what dose? This can also have an big impact…

Learning the hard way is no fun!

MrsN

[pomeranion in reply to MrsNails]

Sorry it has taken so long for a reply. My shoulders and arms have been so painful typing has been impossible. I appreciate all the responses. I really took a long look at my history for the last few months on prednisolone. I have been yoyoing so much. I am to blame for this relapse of my PMR symptoms. I have been so worried about the high dose of 15MLS (45mgs.) that I abandoned all the warnings about tapering too quickly. Starting April 23,2021 from 15 to 13mls. for 7 days. Pain returned, upped back to 15mls. for 12 days. On May 13 I began taper to 14 for 9 days per my GP. Then I really went crazy because of Dr. advice. Started spiraling after reduction to 13mls. on May 22. After that I really went off the grid. I won't relay the rest of the bad decisions I made with the tapering up to the point of my relapse. I have started back to 15mls. July 11. My pain is a little better but now the foot and ankle swelling has returned and am bruising easily. I just can't win. My diet is sure to have contributed to this flare. I haven't been very diligent for the last couple of weeks and put on about 3-5 pounds. I have taken the advice from 123-go and hope to decrease the inflammation due to more carbs intake. I'll keep adhering to the valuable advice received here and will continue to post any and all improvement hopefully.

[MrsNails in reply to pomeranion]

When you say “I have been so worried about the high dose of 15MLS (45mgs.) that I abandoned all the warnings about tapering too quickly.” ~ is that a liquid that equates to 45mg as that is a very high dose for PMR or do you also have GCA? What dose were you comfortable on? Maybe consider returning to that & from there start a gradual taper, trying not to YoYo but to move slowly through the taper & stop if it becomes uncomfortable or your symptoms start to reappear.

Forget about the past & start afresh, have a look at some of the Slow Tapering Plans in FAQ you may find them helpful.

Kind Regards

MrsN

[pomeranion in reply to MrsNails]

Good questions. I will try to bring you up to speed about my steroid dosage. I had a gastric bypass about 40 years ago. When I discovered I may have PMR my Drs. tried different dosages of regular oral prednisone starting at only 10mgs. from my rheumatologist at the time. I have since changed Drs. After unsuccessfully going up to 30mgs. prescribed by my OB/GYN my GP prescribed the 15mls. (45mgs.) liquid prednisolone. I finally realized some relief. I continued to manage the pain and like I said regained some range of motion. Both of my shoulders are fractured from 2 previous falls and I have RA. So I have a complicated medical history. So you can see why I am so concerned about the high dosage of prednisolone. No I don't have GCA.I am going to start with a slow taper and inform my GP that I need to go slower per my symptoms. I hope this answers the questions you posed. Thank you for your continued concern.

[123-go]

MrsNails has asked the relevant, important question. Are you managing tapering yourself?You must keep your body well hydrated with plenty of water. Aim for 2 litres spread over the day. You don't need to drink full glasses each time. (Tea and coffee counts in your liquid intake but I would go very easy on the coffee). If you fill a two litre bottle you can keep track of what you're drinking.

Do not eat sugary foods or add sugar as this will feed the inflammation. If you eat canned foods look at the label. No red meat, nothing with additives or preservatives, no fatty fried food-just wholesome fresh foods; green leafy vegetables, protein meats like chicken and turkey and sardines/salmon canned in brine and fruit especially berries. Plain yogurt is good and so are healthy fats like extra virgin olive oil. That's a short list but there is much more to be found on anti-inflammatory foods on the internet.

There is a saying, Pomeranian, which goes something like this, "It's not so much about what life hands you, but what you do with what you get."

So, no more tapering in a reckless way. Your body needs the dose it needs-plain and simple. Lecture over and I hope you'll be on a much more even keel very soon. 🙂

[pomeranion in reply to 123-go]

Advice taken to heart. See my reply to Mrs. Nails for my answer to the requested information about my history of my tapering experiences. I have learned quite a lot from this experience and will hopefully not repeat it. Good diet recommendations. The lecture was much appreciated and know it comes with the best intentions. Thank you.

[DorsetLady PMRGCAuk volunteer]

This post gives general advice on dealing with a flare….but the art really is not to get yourself in that position in the first place…but unfortunately as you have discovered, it’s easier said than done -

healthunlocked.com/pmrgcauk...

[pomeranion in reply to DorsetLady]

Easier said than done really sums it all up. Boy, we really have to learn the hard way with PMR. I hope I have the patience to deal with a slow taper and eventual relief of the ongoing symptoms of the steroids. Again I apologize for the neglect of my immediate responses to all the help offered. I am happy to be able to type again without the pain.

[PMRpro Ambassador]

What dose? How big a taper step? How often? All absolutely critical info ...

[pomeranion in reply to PMRpro]

Please see my reply to Mrs. Nails about my history of this stupid tapering I pursued. I have appreciated your information about the high prednisolone dosage 15mls (45mgs.) Is it true that the actual absorption might be less? I am really worried about being on such a high amount compared to all the research. I know now that is not a good excuse with all the pain I am experiencing. As I said I will really try harder, relax and monitor my diet. Thank you for all the responses to my concerns. They are extremely appreciated if not always taken under advisement. I have been known to be hardheaded. Maybe with age I will outgrow this trait. Will keep you posted.

[David4345]

Need to know your dosage and what degree of tapering you have undertaken.In general if a doctor has put you on a certain dosage then stay on it until he/she advises you to do any different.

DON’T go doing your own thing be advised by the professionals that’s what they are there for.

Keep to what you have been prescribed, Good luck and don’t get worried about tapering, that comes once you feel much better.

All the best David.

[DorsetLady PMRGCAuk volunteer in reply to David4345]

Actually the professionals don’t always get it right…..the more experienced probably do, but those who follow the guidelines come what may without regard for the patients wishes or the disease activity leave a lot to be desired at times.

[pomeranion in reply to DorsetLady]

I think you are right. I suffered many months without any help from Drs. Thank God I had my sister's experiences to finally discover what I had. She had a really rough time. Besides the PMR for longer than a year she also had to have her tendon repaired because of the high steroids she was given. She is still experiencing shoulder pain and considering surgery next year on her Drs. advice. I think sometimes the Drs. are a necessary evil. My GP finally put me on a dose high enough to relieve most of my pain and regain my range of motion.

[pomeranion in reply to David4345]

Please see my replies to Mrs. Nails for my tapering history. Thank you for your advice.