Still doing okay

[JulieR2]

Hi everyone I wanted to update on my progress and just think it’s important when you get off steriods not to think you’ve reached the end. I am enjoying a lovely holiday in Ibiza. I have been off steroids for 6 weeks now. Bloods are all fine but my hips sometimes don’t do what I tell them. My son describes my walk as a gangster limp! But I now think this is due to muscle wasting and the effects of the PMR. I don’t think I am cured just in the next phase. Rehabilitation! I have a sore right hip and shoulder but think this is the tail end of bursitis. So hoping to get steriod injections soon. I know it’s hard when the focus is to get off steriods but and plan for rehabilitation as my experience tells me that there is still a road to travel even when steriods stop! That said I have walked a rugged track to get to this beautiful lighthouse

[Hidden]

Great News Julie & hope you’re enjoying the sunshine 🌞 in Ibiza!

Keep us updated!

MrsN

[DorsetLady PMRGCAuk volunteer]

Well done on the walk.

You’re quite right coming off the Pred is not the end of everything - it takes the body some time to get back to normal (whatever that may be!). But every day is a step forward. Long may it continue.

[Yellowbluebell]

You sound like you are doing great. Good luck with your continued progress.

[SheffieldJane]

It sounds like you can see the rocks ahead quite clearly. Good luck. It stands to reason that these diseases have made us more sedentary and there is rehabilitation to do. This has to be just as important as zapping the original disease.

I am meeting up with one daughter sil and two grandsons in a St Juan, Ibiza, villa in August/September. My husband and I are very expensive baby sitters I think, it is sil’s 40th Birthday. They are coming from Australia.

Let us know how you get on. Rehabilitation is a whole new important topic.

[jinasc]

Explore both Bowen Therapy and Acupuncture.

I found both helped me after 5 years on GCA.

I also used Bowen when I had GCA and ended up in a wheelchair, I was out of it with 4 sessions.Just using zimmer and then dropping that and using walking stick.

Make sure you get a registered person if you do decide to give one of them a whirl.

[JulieR2 in reply to jinasc]

Thanks I can’t seem to find anyone who does Bowen’s therapy in my area. Would love to try it.

[Blearyeyed in reply to JulieR2]

If you do choose any therapies though make sure you find someone who is used to treating sufferers or past sufferers of PMR or other joint inflammation issues.

Have a shorter taster session first and build up to prevent any unwanted reactions.

Get well hydrated before and after your session , have a relaxing night , bath or shower after it just to be sure you get the most from the therapy and ensure you don't suffer any side effects that may make the therapy seem inappropriate when it just needed the added preparation.

That advice goes for those with PMR particularly as well as post PMR .

[stonecreek in reply to Blearyeyed]

very good advice

[Blearyeyed]

Well done you to getting to the Rehabilitation Level.

You are quite right , coming off the meds and no longer having PMR signs isn't the last page of the book.

Like a Sports Therapist told me , an injury or infection can take 2-3 times as long to get back to having a 100% match fit body after the problem itself has repaired and healed.

Of course , getting your body back to full working order after PMR or other long term illnesses is the same.

And having to have the odd little bit of pain management , physio and a gradual build up of activity is definitely part of the course until we have got our muscle strength back again its a positive step , not a bad thing.

Good luck with it , and if you have any tips that helped speed up your post PMR rehabilitation ( or things that didn't work ) please let us all know as you go along so we can add it to our notebooks for when we are lucky enough to hit Ground Zero.

Have a great holiday , Bee x

[Hellyowl]

Hi, I agree, I think the muscle wasting effect of Pred probably lasts a long time, I don't suppose doctors are going to own up to this and tell us what to expect.

[Jackoh]

Yes I’m sure you’re right- this is the start of a new phase of recovery.Keep in touch and enjoy the rest of your holiday .

[Hidden]

A helpful post JulieR2. I’m off steroids too, for a similar time. Pain, stiffness etc no different between 10mg and zero. Since stopping, bilateral lower back pain across both hips is slightly worse. Not so much in terms of pain, but I have problem with what, I think, is muscular weakness, causing difficulty with standing and steps. It’s difficult to know where treatment/adverse effects of same start and stop.

[Jolyn]

Hope you enjoyed your holiday and that your feeling a little better.