Update on pmr and osteoporosis

[Mitziecat]

Hello everyone.

I have not posted anything for awhile but have been thinking of you all & hoping that things are going ok with you. As for me, time has just flown due to various things including non pmr issues. The good news is I did my final taper at the beginning of November and now going into week 4 of being steroid free. I was tempted to carry on for a few more weeks but knew it would be due to confidence and not a necessity to do so.

I had some withdrawal aches for about a week but it did get better. My only concern was backache but felt it was due to increased exercise with weights to help my bone density’. It did improve with analgesia so knew it wasn’t pmr. I am still cautious and worried in case the symptoms flare up again,especially as the weather is cold, have had some stress and pending busy December. Also being realistic that some of it could be just the aches and pains experienced before pmr.

Regarding the Osteoporosis, my GP would still prefer that I take AA and asked me to contact my Rheumatologist. I emailed him with my reasons to try natural methods first. He responded and agreed that I should do so for a year and then have another follow up appointment with him and another bone density scan. However, he did emphasise that if I was on steroids there would be the risk of further bone loss. I can only see how it goes and try to do the things slowly, especially build up my exercise at a sensible pace. It has been hard at times to do any exercise due to being busy and working in a busy job. Even worst now the cold dark evenings are here.

I can’t thank everyone enough for the support given on this site and I wish you all well. I hope I can continue to keep in touch on the site. I don,t think I will feel completely pmr free until I have not needed pred for some time.

Good wishes to you all.

[Irldino]

Best of luck. Am off Pred 7 months now. Takes time for the body to recover from it all

[Mitziecat in reply to Irldino]

Thank you. So reassuring to hear a positive outcome. Long may it continue for you.

[Sandradsn]

That's great Mitzicat,how long did you take pred?All the best to you x

[Mitziecat in reply to Sandradsn]

Thank you. I was was diagnosed very quickly and treatment started straight away followed by a Rheumatologist referral the following week. I was on Pred for just over 17 months. The Rheumatologist advised monthly tapering by 1 mg and even slower from 5 mg. with a reviews 3 monthly. I did alternate days of reduction from 5 mg & it seem to work for me. The Rheumatologist did say it can return but advised to try and return to normal activities but listen to my body.

I am approaching this new phrase with an open mind but hoping it will be all good.

[SheffieldJane]

Wow! That is amazing news. We need something weight bearing in the home really. I wonder if there is a DVD?

It must be scary but rather wonderful being off Pred. I can’t wait. I have low back pain - the x-ray showed arthritis.

Wishing you the very best of everything! Xxxx

[Reader7 in reply to SheffieldJane]

Youtube has a variety of videos to prevent osteoporosis.

[Mitziecat in reply to SheffieldJane]

Thank you so much Sheffieldjane. I found lots of good exercises on YouTube. Just have to be consistent with doing them but so hard. Would love to be retired but a few years to go yet. I will feel better if I can get through the winter, busy Xmas period general issues without problems. Stress will be my main issue. Will keep you updated.

[Jeannie29]

Congratulations on coming off Pred, hope things stay good for you, and try to stay stress free. I wish you well xx

[Mitziecat in reply to Jeannie29]

Thank you Jeannie29. My best wishes to you also.

[Pym1]

I was interested in your post and looked back at a few of your others. I have some similar experiences and empathy. I’m trying to build up my exercise routine and strength for the ski season, plus I’m working gently on coming down from 6mg to 5. It’s not easy. Been here before and had a flare so went back to 7.5 for a while to stabilise.

Went to see an orthopaedic consultant yesterday to get advice about treatment for a long standing knee injury. This guy is highly rated, also a skier with a dodgy knee so has ‘walked the walk’.

He questioned the AA and was quite surprised. Said it wasn’t directly his field, but that he personally wouldn’t want to be on it for long.

Happy for me to take Adcal until the cows come home. Can’t do any harm and could be doing some good.

Was surprised that I hadn’t had a bone density test and suggested I find out more about AA. What we’re your findings?

He was great with suggestions to help the knee. NOT surgery! Lots of ways to protect it and build muscle. Really helpful.

Good luck with your journey.

Must get up, do my exercises and stretch!!

Thanks for listening. Ha - you had no choice, but thanks!

Pym

[Mitziecat in reply to Pym1]

Hi Pym1.

Like you I have had an interesting journey. I have had very good care from my GP and Rheumatologist but my only regret was not pushing for a bone density scan at the outset. I took AA without question until June when I was on a lower steroid dose. There is a possibility that my bone density may have been low due to the menopause and then further compromised by the steroid treatment. Difficult to prove if the AA stopped it from getting worst.

I just didn’t feel right on the AA. Never really had side effects but worried about the risk of ulceration and risk of cancer. Also read that when you have a break from it, bones can become brittle and lead to fractures anyway.

I did a lot of exercise pre diagnosis but hardly any during treatment due to fatigue & anxiety that I would increase my symptoms. I am trying not to get too bogged down with it but do what I can in moderation. Trying to be holistic & improve diet, exercise and stress factors.

Good luck with your journey

[Pym1 in reply to Mitziecat]

Thanks for your interesting reply. I’ll ask for a bone density scan. Taking enough stuff without unnecessary pills.

I find it really helps doing some exercises, even though it might hurt a bit. Then some stretches or yoga.

Thanks again and good luck.

Pym

[bunnymom]

Good for you! Long may your health continue to improve ❤️

[Mitziecat in reply to bunnymom]

Thank you bunnymom. Good wishes to you.

[Grants148]

Hello Mitziecat,Thankyou for your kind thoughts and well done for coming off the Pred .,long may it continue.Take care and give yourself plenty of TLC,and please keep posting to let us know how you are getting on x

[Mitziecat in reply to Grants148]

Thank you Grants148. Will keep you uplated.

[Telian]

Congratulations on being pred free! - I'm sure the longer you are off the more your confidence will grow, plus we all get aches and pains as we get older that are not PMR. Just don't overdo the exercise. Think there's a lot on here pretty jealous of you right now. Hope your health continues to improve.

[Mitziecat in reply to Telian]

Thank you Telian for your kind words of encouragement. Yes we do forget about the aches and pains pre diagnosis. I am sure that my confidence will grow if the symptoms continue in remission. The support given has been much appreciated. Good wishes to you.

[Hidden]

Hi Mitziecat

What Wonderful News! Look after yourself especially with Christmas coming up. There’s hope for us all 🙏🏼

Best Wishes

MrsN x

[Mitziecat in reply to Hidden]

Thank you Mrs Nails. There’s always hope and I am a great believer in positivity, even though it is hard at times. You take care of hourself also.

[dartmoorlass]

Great news Mitziecat and thanks for posting which has given us all some very welcome encouragement as we continue our GCA/PMR journeys. It must be wonderful to know you'll be able to start slowly rebuilding your former life. Very best wishes for your continued progress.

[Mitziecat in reply to dartmoorlass]

Thank you for your kind words dartmoorlass. Best wishes to you.