Local group

[Whatgrange]

Hi everyone! I’m new to this - it’s the first time I’ve posted anything anywhere! I am 77 and was diagnosed with PMR in September 2018. Can’t remember what my initial dosage of Pred was (possibly 20) but have been tapering for a few months at about 1 every couple of weeks which seemed to feel reasonable. However got to 3 and symptoms have started again with a few extra! On reading the posts I could understand what was happening and my GP has anyway suggested 10 which I have been on for a couple of weeks with a little improvement but not much. I’m going to suggest I go up to maybe 15 to try to knock it on the head!

However the main reason for this post was that I came across an Ilkley group and have lost it again! It seemed about 2 years old and I wonder if it still exists? Can anyone out there tell me?

My best wishes to you all. Love the sense of humour that really resonates with me!

[DorsetLady PMRGCAuk volunteer]

Hi,

This link may help with Ilkley group -

pmrgca.co.uk/group-pages/il...

As for you, as you’ve realised reducing every 2 weeks has taken you below the level you actually need. So suggest you go back to 15mg, stay there for a week or two to get symptoms properly under control - you should then be able to drop back down to the 10mg your doctor suggests.

From then on monthly reductions- not 2 weekly, that doesn’t give you time to know each level is okay before you taper again.

Good luck - and maybe have a read of this as well -

healthunlocked.com/pmrgcauk...

[Whatgrange in reply to DorsetLady]

Thank you for such a prompt reply! Yes, I’ll follow that tip and continue to read posts.

[PMRpro Ambassador]

As DL says - reducing at that speed will have probably meant you missed the point you were looking for: the lowest dose that managed the symptoms as well as the starting dose did. It can take a few weeks for the inflammation to mount up to a level causing symptoms again and there also seem to be signs that the activity of the underlying autoimmune disorder varies over time, sometimes calming down a bit and then increasing again. If you happened to be reducing in one of the quieter periods it is all too easy to get to a lower dose and then be shocked when it flares up again.

Have you also modified your activity level? It isn't unusual to find it more difficult to get a flare under control, especially when it is due to an increase in the disease activity rather than just overshooting, but often we don't feel as bad as we did originally and are trying to do more. Which doesn't always help!

Rugger is the member to contact for the Ilkley meeting

healthunlocked.com/user/rugger

[Whatgrange in reply to PMRpro]

Thank you for your very helpful reply. I am at a stage of increasing my activity! I’m an impatient person about my personal health and expect and illness etc to be over with within 48 hours at the most!! My OH is good at bringing me down to earth! However after reading all the info available from the forum I’m trying to be very realistic! My diagnosis last September was immediately followed by one of ovation cancer! Which then has resulted of course in surgery and just 2 hours of chemo which literally nearly killed me - so the pmr was put into the background ! Cancer prognosis very good, by the way! But I am impatient to get back to normal life. Silly me!

[PMRpro Ambassador in reply to Whatgrange]

We had a wonderful surprise this week: our younger daughter had had a Ca125 of 200 and we knew there was an ovarian cyst (6.5cm in Dec, now 9.4cm) so were expecting the worst. No, no cancer, endometriosis!!! The blood test had been done on the first day of her period and the endometriosis is everywhere, also causing the renal problems they have been messing about at for 2 years. Had the urologist done the MRI he muttered about before he did the first surgery he woud have known his other suspicion which he rejected was the right answer! Would have saved that surgery and the 2 stents since - and the one op she now needs would have been done and dusted a long time ago. I just can't imagine the idea of going in blind - he'd decided the blockage was somewhere, it wasn't. Wasn't that the moment to have a detailed look? Rant over ...

Just one lot of chemo?

[Whatgrange in reply to PMRpro]

Yes, 2 hours worth! Hysterectomy ++ was very positive, no spread to lymph nodes, all cancerous cells removed, everything biopsied, all fluid negative Was very much against any chemo but was persuaded by the‘ belt and braces’ advice of surgeons and oncology. Not necessary they said but better to have it, just in case! One of the drugs was not indicated because of another condition so only had the first session of one drug. Big mistake!! 3 days in I had 3 pulmonary emboli, DVT and atrial fibrillation! I refused any more chemo, was lucky to survive and now have anti coag daily injections for the rest of my life and reduced lung capacity ! That’s why pmr got put on a back burner!

[PMRpro Ambassador in reply to Whatgrange]

I have a/f - probably due to PMR but made a lot worse by i.v. diazepam so that brought on the anticoagulant +++. They gave me another lot 8 weeks ago - apaprently it asn't on my allergies list, it is now - and as a result they gave me a pacemaker to sort out the 7 second asystoles I was having after the a/f episodes. Not complaining though - I knew I probably needed one but they couldn't catch an episode on an ECG.

OH had a belt, braces and velcro oncologust - chemo, surgery AND r/t. It worked - that was 25 years ago for a teratoma that was rugby-ball sized when found, all tangled up with a lung ...

[Blearyeyed in reply to Whatgrange]

Not silly at all , it's keeping that strong fighting spirit that gets us through these awful health issues , we just have to remind that spirit that the body is weak even if the mind is willing and force ourselves to pace our recovery.

You have been through alot already and I am amazed by the strength I see in those forum members who have to suffer such intensive treatments and disease stress to cure things like Cancer or Heart Issues on top of their PMR.

So , glad that the Cancer news is positive , and hope you can find the road travelled with PMR can get a bit smoother now too.

Good luck and take care , Bee x

[Whatgrange in reply to Blearyeyed]

Don’t you just love 4 o’clock in the morning? If I get to 4 I think I’ve done well! 3 isn’t bad but 2 is ridiculous !!

I’m very lucky and managed to afford an adjustable electric bed. With massage!! I love it! It has made the long night hours much more comfortable! That, with audible books, has really altered my nights! Now all I need is an electric switch to get my brain into gear! Hmmm....

[Whatgrange in reply to PMRpro]

Meant ovarian cancer, of course!!

[CT-5012]

Ilkley group contact by email is [e-mail] we have just had a meeting but I don’t know when the next meeting will be but if you send them your email address you will receive an email notification. Look forward to seeing you there. 😊

[Whatgrange in reply to CT-5012]

Many thanks. Have emailed!