With humility and respect, some PMR lessons learned

[Marinescience]

Hello everyone,

After about five years with PMR and following a very slow taper regime, I have been off prednisone since January, and I have had no recurrences. I have appreciated the contributions of this site so much. In return, with respect and humility, I report my own observations below in the hope that they may be useful for others.

- My Scots mom had a saying “Patience is a virtue, possess if you can. Seldom found in women but never in a man”. So I had to overcome my inherent male limitation in that regard, and adapt to a new reality for a five year long period. Patience is most definitely a virtue with this long-lasting disease.

- Keep a log of pred doses and your responses to it. Sounds obvious, but difficult to maintain over the course of years. A log of your experiences will really help your care providers, and help you better understand how your body is responding to the treatment and the progression of the disease

- Be careful not to attribute all changes you experience to PMR. PMR can be with you for a long time and as your body changes over this relatively long period, I think there is sometimes a tendency to attribute much to PMR. Having a more specific marker of PMR activity than the typical blood work CPR or ESR would help us in this regard, as those markers are non-specific, and measure inflammation regardless of the source.

- I am finding that with the cessation of prednisone, some of my osteoarthritis symptoms are a little more severe. I think prednisone, even low doses, must mask some of the osteoarthritis symptoms.

- Keep reading the posts on this site. The responses are really helpful, and I really appreciated the thoughtful comments from the regular contributors.

- With the appropriate prednisone dose and a supportive GP/rheumatologist, it is very possible to have a good quality of life while living with this condition.

Good luck everyone!

[PMRpro Ambassador]

Well done sir and long may it last!!!! Thank you for dropping in to tell your story and show it IS possible to get to a very low dose and off pred - even when it takes rather longer than some doctors would have it. Do drop in at intervals - plenty of help you can offer because your post encompasses some of the really critical points in PMR.

[Charlie1boy]

Agree 100% with your observations. 👍

[Bcol]

Excellent post, thank you.

[proactive]

Very encouraging post. Thank you.

[diana1998]

My mother always used to say Patience is a Virtue, but not the rest. Love it!

[Poshdog]

Love your mum's saying! In my 8th year of PMR and have to say, not one of the most patient of women! X

[Louisa1840]

What a wonderful, positive post! Thank you Marinescience!

[Posey1]

A great post. It will give hope and reassurance to many people.I'm sure we all wish you good health.

[montebello]

I add my thanks to the others and also wish you the best.

[Spartans1]

Thank you for sharing the thoughtful notes!

[Charlotteab]

Thanks for the info! I have been on prednisone almost a year for PMR, but have only been able to taper from 15 mg to 10 mg so far without a return of pain and stiffness. I'm going to try going down by 1/2 mg a month rather than 1 mg a month and see if that helps my body adjust. I do worry about what this long-term prednisone use is doing to my body, and want to get off it, but I also want some quality of life. It's a Catch-22 situation.

[PMRpro Ambassador in reply to Charlotteab]

I've been on pred at above 10mg for probably 13 out of the last 15 years - there is no identifiable damage we are aware of and I have had a decent quality of life. I have no diabetes, no osteoporosis, my cholesterol was raised but more now due to tocilizumab which is the only thing that has got the pred down and even with that, I am stuck at 7mg. My rheumy is satisfied that I am stable. Don't worry yet!!

[Charlotteab in reply to PMRpro]

Thanks PMRpro - that's very encouraging! I'm glad you've had no serious side effects to the prednisone. I assume everyone reacts to it differently, and that not all people get all, or any, side effects.

[PMRpro Ambassador in reply to Charlotteab]

Exactly - there are more than 82 listed adverse effects - haven't met anyone with them all (though some claim to!) but most can be mitigated or avoided altogether when you know how

[Charlotteab in reply to PMRpro]

Yes, being able to minimize the side effects is important. I take a bone medication for osteoporosis, along with calcium and vitamin D, and have cut or at least minimized my consumption of salt and sugar in the hopes of avoiding high blood pressure and steroid-induced diabetes. As a general rule, I tend to tolerate most medications well, which is a plus.

[Carver63]

i am glad to hear of your recovery, my own was similar and the group support in the difficult years was very important to my recovery. its been almost 18 months since my last medical treatment and through a long steady recovery i feel almost completely headache free. I wish you a complete recovery so that you can have your life back. I am very thankful for mine. Regards

[PEC2]

Thank you for the great post. Encouraging. Good luck.