reducing

[arvine]

haven,t posted for long time, but been reading some of your reduction plans, i started at 40 mg, oct 2016, got down to 10 mg last spring, when i told my rheumy in august last yr about my 49 yr son diagnosed , with cancer, multiple myeloma, and that he would be having a stem cell transplant in januar of this yr, she advised i stay at that dose, because of stress on me, which i did until 2 mos ago, then she put me on a very slow plan, one day new dose of 9 mg, then 6 days of 10, next wk 2 days 0f 9 and 5 days of 10, on and on, until down to 9 every day, which i have been at for a month, i see her on tues, tomorrow, and expect will be having same plan to get down to 8, it,s a very slow process, i have had no issues with physical pain to speak of, once in awhile, back,hip etc, just arthritis etc, old age i think, there is no cure for my son,s cancer, only hope to be in remission for a long time, which as yet we don,t know, more bloodwork needed in nexxt week or 2, so still a llot of mental stress, and emotional , as well my other son and family in crisis, a lot of stress everywhere, but i am holding my own i guess, just wonder about being on this dose for so long, and have my first dental appt, this thurs, which i have put off for so long, not sure about increasing day before by 1 mg as i have read some of you have done, anyway, biggest concern is my son, and have many moments where i get scared, for future, just wanted to share, thank you for any thoughts,

[PMRpro Ambassador]

One top PMR/GCA group keeps their patients at 10mg for a year once they get there - and I have been on pred for nearly 9 years, a great deal of it at above 10mg. So they think it is fine - and I have no problems at all that I can identify, no diabetes or cataracts so far for example.

It depends what your dental appointment involves. I'd have thought it would really be just an examination and minor procedures today until the dentist decides what needs to be done. It is usually only bigger procedures that would require a boost of pred at that dose.

So sorry to hear about your son - do hope all turns out as well as can be expected.

[arvine in reply to PMRpro]

thank you,

[DorsetLady PMRGCAuk volunteer]

Hi,

Your Rheumy sounds a very sensible lady.

As PMRPro says, don’t get anxious about your dental appointment- and only increase if sometime bigger comes along. Don’t want to be upsetting what seems to be working well.

Good luck

[Patience47]

Prayers for you and your son.

Edward

[CT-5012]

Thoughts are with you and your family.

[Celtic PMRGCAuk volunteer]

arvine, that rheumy of your’s sounds very up-to-date and in tune with the experience of us patients who are finding that the slowly slowly approach to reducing works. Hang on to her! It worked for me from the 5mg dose and below but in even smaller decrements of 0.5mg, and it sounds very wise for you with the stress you are experiencing. I’m so sorry to hear about your son but I do hope the stem cell transplant proves successful and will see him in very long term remission. Hope your dental appointment goes smoothly - with any luck you won’t need any treatment - fingers crossed for you on all fronts.

[SheffieldJane]

You have been gone a long time. You must be agonised about your son. He’s so young to suffer all this and the uncertainty, you have my prayers for him.

You seem to be doing pretty darn well with your reduction particularly with all the stress in your life at the moment. I would increase a little if you have anything major done at the dentist and then go right back to your normal dose.

Do take care and keep us posted arvine. I had hoped that no news was good news, but you’re holding up, as ever bless you!

[stellafmdm]

Thoughts and prayers with you arvine, I hope all goes well for you and your son!

[arvine in reply to stellafmdm]

thanks so much

[Jackoh]

Your Rheumy seems very much on the ball- hold onto her!! So sorry to hear about your son - thoughts and prayers for you all. Do feel that under the circumstances you have coped and are coping so well. All the very best for the future.

[arvine in reply to Jackoh]

thanks so much

[Dee1jay2rac3]

So sorry to hear about your son. Thinking of you.

[arvine in reply to Dee1jay2rac3]

thank you so much