MrHave PMR currently reducing am on 8mg...now have shingles should I increase pred?

[Devon21]

PMR and Shingles

[SheffieldJane]

You poor thing! Some more information will help you to get more specific advice, such as the length of time that you’ve had PMR, your current dose of Prednisalone, your symptoms currently etc.

[PMRpro Ambassador]

Unless you need more pred for pain relief - it is sometimes used with acyclovir in shingles - I don't see why unless you start to experience any adrenal insufficiency problems. You are on acyclovir I take it?

[Devon21 in reply to PMRpro]

Hi, sorry new to this site! Diagnosed with PMR in Aug 19...responded well initially, but has taken me a long while to accept I have to pace myself! Had a few setbacks, chest infections (have asthma), 10 or relationship break up so had to move back end of last year ...big flare plus headaches like I've never had, jaw aches and very tender scalp...went up to 40mg from 30mg in Dec..saw new Rheumatologist 11th Jan, wanted me to reduce down to 10mg over 6 weeks, to do TAB ...have been doing more resting, using painkillers to help with reducing...had chest xrays (normal) bloods whilst on 40mg (all within range)CT scan and TAB 10 days ago ...when I'd just got down to 10mg....now on 9mg but diagnosed last Friday with shingles 🙈

Now on 5x800mg Acyclovir ... helping shingles, but I'm so stiff, everything hurts, shoulders, hips, neck...jaw really hurting, tinnitus a pain...walking upstairs feels like Everest! Trying to stay really positive and thankfull for everything I do have in these difficult times, but just dont know what I should be doing and is feeling like this normal? My rheumatologist is trying to get me off pred completely by September!! The lowest I've managed on this journey is 7.5 last September for 16 days then had chest infection! Would love to hear your thoughts!

This is such a great site, thanks for all the tips...

😊

[PMRpro Ambassador in reply to Devon21]

The first thing I'd do is find another rheumatologist who knows what they are doing. This one doesn't! The likelihood of getting a positive TAB after that time on pred is low at best - and it being negative doesn't mean it isn't GCA, it means they didn't find what they were looking for - only about 40% of TABs are positive even when the suspicion for GCA is high.

You are showing all the signs of the PMR at least having flared with the current dose and there are worrying symptoms of GCA - jaw pain and tinnitus - as well. Even if you have "only" PMR, the likelihood of getting off pred by September is very small, PMR is a chronic illness and only 1 in 5 get off pred in under a year, only a third by 2 years.

Could you put those details onto your profile page? Just copy and paste them into the introduction bit where you say "I'm Devon21". Are you really in Devon? What hospital?

[Devon21 in reply to PMRpro]

Hi thanks for your reply. Yes I am in Devon, hospital is Torbay. I feel the chances of positive TAB is unlikely due to reasonably high doses certainly over last 4 mths! Am talking to doctor tomorrow so will hopefully get results...but such a disadvantage not seeing him face to face....I'm sure having shingles isn't helping, with how exhausted I'm feeling!!

Will complete my profile! Thanks again...

[DorsetLady PMRGCAuk volunteer in reply to Devon21]

Agree with PMRpro - find another Rheumy who knows about GCA- not easy I realise!Maybe have a read through this as well - won’t help on shingles front, but hopefully will on PMR /GCA -

healthunlocked.com/pmrgcauk...

Thus will give a bit more info on GCA - healthunlocked.com/pmrgcauk...

[Devon21 in reply to DorsetLady]

Hello, Thank you for that information, very useful and can relate to pretty much all of it, at the beginning I did buy the book by Kate Gilbert and still regularly dip in and out of it...I think because she has the condition she is much more understanding and realistic...am sure most GP's and Rheumatologists have never experienced PMR or GCA and the effects of long term steroid use so what might look ok on paper doesn't always work in reality! Will see what my GP suggests tomorrow ...think I will also ask for more blood tests, not had any since I was on 40mg on 11th Jan.

Thanks again.

[PMRpro Ambassador in reply to Devon21]

Kate isn't a medical doctor - just another patient like all of us.

[DorsetLady PMRGCAuk volunteer in reply to Devon21]

You’re quite correct, most doctors might know the theory of the illnesses ( although some comments on here do make us wonder!) but living through them creates the real experts.

And don’t get too fixated on blood tests, they are good for your info if you’re that way inclined - but how you are feeling is much more important. Another thing doctors hone in on erroneously at times.

[Devon21 in reply to DorsetLady]

Thanks for that, the blood tests I had in January certainly didn't reflect how my body was actually feeling...just nice to know that there's nothing else lurking!! Does anyone here get a bit fed up of people saying 'but you look so well'?? I try and be outside as much as possible, guess with any sun and the steroids plumping up my face, I probably do look well, but certainly not how i'm feeling!!

[DorsetLady PMRGCAuk volunteer in reply to Devon21]

Oh yes!!!! Thing to reply is “yes I might look good on the outside, but you should see what’s going on inside!”

If they still look at you with disbelief - just say -

“My immune system has stopped working correctly so my body is in effect fighting itself - and it makes me feel rubbish”

[Devon21 in reply to DorsetLady]

Will do, thank you!!

[Meggsy]

Hello Devon21, I have just completed a course of Famciclovar for shingles and did not increase my pred. However I do not have your other problems with PMR. Just coping with severe shingles pain is enough for me. I hope things get sorted for you soon preferably with a rheumatologist who knows what he/she is talking about.

[AdoptMeow]

With any sort of nerve damage and pain, it's likely there are B vitamin deficiencies. You can try taking a good quality B-complex with all 8 essentials 2-3 times a day.