I'm new here, but not new to PMR

[Janll]

It's encouraging to me to hear how you all are coping with PMR.

My 1st bout with PMR was 13 years ago, I was in my mid 50's. Pretty much text book case....on steroids for two years. This time starting, 15 months ago and starting taking prednisone since April last year. Taking the usual, AA and Adcal-D3 and Ametprozol and my stomach is really tired and upset most of the time. My ESR is in mid 70's and as the Steroids aren't working my Rheumatologist has suggested me reducing the dose from 12mg a day to nothing in approx. 12 ish weeks. Long story, sorry! Feeling really awful compared to just awful. ESR has gone up since last October from 40's to 70's. Getting depressed and angry. Hated the round face when on high dose as well as brusing and hair falling out.

[Hidden]

Hi Janll

Welcome 💐 So sorry to hear you have PMR again, why does your Rheumatologist want to reduce you from 12mg to zero in 12weeks it so? Isn't that a recipe for disaster? Afraid I'm not up on ESR Numbers as in my Surgery they only do CRP Levels!

I'm sure you must be very frustrated, have you discussed the Rheumatologist Report with your GP as I think you need more explanation re reducing the Prednisolone especially as you ESR has risen, does the Rheumatologist have another plan if you come of the Prednisolone?

Very Best Wishes

Mrs N 💅🏼

[Janll in reply to Hidden]

Unfortunately, getting an appointment with my Rheu is proving very difficult even tho he made that suggesting 12 weeks ago. Thanks for your reply. My husband suggests I go back up to 10 mg. and take daily notes. I guess they can't put me in jail for prescribing myself.

[Hidden in reply to Janll]

Making daily notes is a good idea especially if you can back them up with blood results, if you have a good GP it's worth an appointment to discuss your thinking/plan.

I know what the round face is like & my hair became thin at the front, when I was on high does Prednisolone not nice. Sadly I lost all my hair thanks to Chemo & it's struggling to grow back again at the front, so these days it's still a very swish wig for me but it's so much easier than doing my hair 💁🏻 Always try look on the bright side!

I do hope you can sort something out with your Meds & start to feel better soon. Do think about a chat with your GP

Mrs N 💅🏼

PS

I tried some Shampoo & Conditioner from M&S called Swell when my hair was thin from the steroids & l believed it helped, they do a Travel Pack with three products, Shampoo, Conditioner & Serum.

I'm using it again now but it's against a different enemy this time! 🙆🏻

[Janll in reply to Hidden]

Yes, it's helpful if one can be optimistic. I'm certainly not struggling with a terminal illness and yes, I'm thankful for that. This week has been a rubbish week with no let up with aches and pains. I live in Somerset and it is not easy to get an appointment when I most need it. Which is why I've decided to up my dose myself. From 3 1/2 mg to 9 1/2mg. I've been very good this time with diet and have not put any weight on where last time I put on 1 1/2 stone. I will look into carrying on with the AA as it and the Adcal does affect my stomach. MRS nails where do you live?

Janll

[Hidden in reply to Janll]

Hi Janll

I live on the North Wales Border, close to Chester, so when I had BC as I had my Surgery in Chester (from choice) then my Chemo in Wales (funding) all worked out OK though & my Oncologist was super.

My weight went up with the steroids & have just reached 6.5mg again so hopefully I'll lose a few pounds!

Hope you get relief from your increase soon.

Have you had a Dexa Scan to see if you need the AA?

Mrs N x

[Janll in reply to Hidden]

No scan, it was just a matter of course because I was going on steroids. 😕

[Hidden in reply to Janll]

As PMRpro says you could leave the AA for a couple of weeks & ask about a DexaScan. Try plain live yogurt with your breakfast to help a little with your stomach.

Best Wishes

Mrs N x

[Janll in reply to Hidden]

I do use plain yogurt at least once a day and have also started using a pro-biotic from the health food store. I'm burping all the time like a beer drinker or teenager. I don't drink beer by the way. Maybe a tablespoon of yogurt with every meal?! Can't hurt.

You ladies are so helpful and kind. Hugs to you all xxx

[Hidden in reply to Janll]

And if you fancy a slice of toast one won't hurt, nice n hot n buttery with a cup of tea!

Hugs 🤗

[DorsetLady PMRGCAuk volunteer]

Hi Janll

Sorry to hear you've been hit with PMR for a second time, that's totally unnecessary!

Your ESR is certainly high considering you are taking Pred, have you been checked out to make sure there is nothing else keeping it that high. Plus do you really need to be on AA, have you had a DEXA scan to congfirm the need or just put on by doctor? I took it for 4 yrs without a problem, and needed to, but it does has an adverse affect on lots of people, so if you don't need it, don't take it.

As Mrs Nails said, what alternative does your Rheumy have in mind?

You don't say what dose you're actually on at the moment, but reducing whilst your ESR is rising doesn't make sense to me. Of course it could be your adrenal glands not kicking in again, that very often makes you feel like you've been run over by a steamroller - did me anyway.

Think you need to see your GP about your ESR, could it be something else, and maybe put your reduction on hold until you get an answer.

[Janll in reply to DorsetLady]

The idea of reducing the Steroids while my ESR was rising was to re-assess my situation. That done, it has been confirmed that I don't have any underlying conditions to cause the symptoms other than PMR. Feeling the worst today, which is why I listened to my husband advice, which I don't usually do. He's a retired mechanic and he usually uses a banging tool to get things going again. That has made me laugh out loud! 😆 I'm starting to feel better, at least not so depressed.

[DorsetLady PMRGCAuk volunteer in reply to Janll]

In other words - an Army screwdriver! My late hubby was very handy with a hammer at times - unfortunately it's me that's got the scars to prove it!

Hopefully you can get yourself to a level which makes you feel better and then take it from there.

My mum used to say - "nobody ever told you love was easy". That's true, but it would be nice to come second sometimes! Keep laughing - best medicine there ever was👍

[PMRpro Ambassador]

I assume the rheumy is thinking this may not be "just" PMR this time? And that he feels the pred is just masking something? That is a very high ESR! Especially when you are on pred.

There is a lady on another forum who is in a similar position - the rheumies don't think it is PMR. So the second opinion one asked her to reduce from 10 to 5mg to see what happens, she waited until after xmas and is just down to 5mg and has had a blood test done. They are raised, he now suspects she may have GCA for other reasons and she is to have an ultrasound scan today.

I gather you have started to reduce and are below 10mg - how far below? And what sort of really awful do you feel?

[PMRpro Ambassador in reply to PMRpro]

And as a PS - in the meantime I'd drop the AA at least. Missing it for a few weeks won't make a lot of difference in the great scheme of things. I never have taken a PPI but do you know if that is causing any of your problems? Just stopping it may be a bit more problematic, as that can cause rebound acid production. But you could take ranitidine/Zantac instead.

[Janll in reply to PMRpro]

Good thinking.....I'm not due for another dose until Wednesday of the AA. And the Adcal? It has been problematic from the beginning, so a few changes were made. I've been very wise regarding carbohydrates, which has been beneficial regarding weight gain. Right now I just want toast.

[PMRpro Ambassador in reply to Janll]

The Adcal alone is all I've ever taken but I know some people find it causes problems and it seems to have started causing bladder problems for me if I don't take it together with food. Perhaps try another sort of calcium/vit D supplement? Or vit D plus a soluble form of calcium?

[Janll in reply to PMRpro]

Good advice ! Thanks

[DorsetLady PMRGCAuk volunteer in reply to Janll]

Then have it! They can't hang you for it!

[Janll in reply to DorsetLady]

😉

[Janll in reply to PMRpro]

I was on 3 1/3 mg this morning. Getting an appointment is almost as hard as pulling teeth. My 'really awful' today is, having not slept well and then once up my shoulders are so achey and painful I get constant pains in my head, not temporal. Shopping in town this morning was like walking with lead weights on both ankles. It's the worst I've felt this time round with PMR. I have upped my dose to 9 1/2 mg midmorning and I'm waiting for the Miracle to happen. I'm praying it will happen soon or get spiritual guidance on how to cope. My stomach feels like a naughty child refusing medicine, when I start to think about food.

Not Happy ☹️

[PMRpro Ambassador in reply to Janll]

Not surprised - and I think I might turn up at the clinic and demand an appointment! It's all very well telling a patient to stop the pred but then you have to be available to make decisions when the proverbial hits the fan.

What is he intending doing now? He can't just leave you... (Well, no doubt he can, but that's not nice).

Where do you live?

[Janll in reply to PMRpro]

I live in Weston super Mare. Usually, I don't have any problems getting an appointment. This week has been the worst. Usually I have a bad day or two and then pick up again. This week I've been down since Sunday.

[enen]

Jani sorry to hear you have it for a second time.. I had GCA 5 years ago it at into remission I slowly came off the meds and i now 3.5 years after stopping the meds i have PMR. I wonder what the percentage is of people where it is a reoccurrence? I am still in my 50s and I wonder if I will be sucespitble for the rest of my life? I was hoping once I retire from shift work then I may no longer be as vunerable.

[Janll in reply to enen]

I was under the assumption that once PMR was treated, I would be free from it. But, alas, no! I know, looking back 13 years ago what probably started it off. Stress and a drop in hormone medication. Body went into a spin, I got the horrid cold sore which indicated I was in a lot of stress and then the fatigue and soreness set in. Doctors were slow at diagnosising as I was in my mid 50's. 4 months later I was on steroids but not before I was in terrific pain. This time the pain wasn't as bad, so I questioned the doctors diagnosis even tho the blood tests were saying different. I'm not sure one can avoid a relapse. I know of a lady who was on a very low dose of pred., maybe 1-2 mg daily for two years after the initial higher doses over previous 2-3 years. She is still free from PMR now, 8 years on. To be a patient patient ..... might be a clue to full recovery. That's a hard one. Patience! Perhaps like you mentioned, once off shift work you might be more relaxed. Some bodies just don't like certain activities, where others seem to thrive. I hope you are getting good support from family. X

[PMRpro Ambassador in reply to Janll]

No - the underlying cause is an autoimmune disorder - and unfortunately once you have had an autoimmune disease you remain at an increased risk of it returning or another developing for the rest of your life.

[Mourneriver]

Hi Enen, I saw Dr Hughes last week, he says 10% of PMR patients have a recurrence . He says it is not usually so severe the second time round , which is what I am finding but I have been taking LDN for 15 months and this could be helping. As we are in remission when the symptoms go , I suppose there is always the possibility that it will pop up again.

[Janll in reply to Mourneriver]

What is LDN. I'm new here!

[enen]

My GP and Occupation health support said I will always be sucespitble to it .

[Janll in reply to enen]

I guess to hear the truth hurts but in the long run you eventually find ways to cope. I hope this is the case for you, enen.

[Robbie251]

I too have pmr I am currently on methotrexate 15mg weekly and prenisolone 3mg I also have an underactive thyroid take levothyroxine 100 mcr daily earlier in the year I was feeling very much like you are and was thinking I needed my prednisolone increased but it turned out it was my thyroid that was the problem have to have had to have med increased have you had your thyroid checked out results can even be negative when you do actually have the condition there is more than one test required I am also quite concerned about your esr numbers I know you say you don't have gca but has this been properly checked out I have a very good gp and it's thanks to her I can see today when my esr reached 86 she phoned me at work and I had to get to my ophthalmic department within 4 hours there they checked out the pressure in my eyes and it was very high they had to give me high amount of prednisone 80mg admittedly it was a bad time being on such high amount and terrible side effects then it took a long time to get them back down but it did save my sight gca is a very missed disease it has been raised in the House of Commons how many gps miss it (Google this) and there are thousands of people going blind due to condition being missed I really don't want to scare you but think it is important that you are aware of this please don't be angry with me it is only due to concern that I am letting you know I do hope you get sorted out and things improve for you

[PMRpro Ambassador in reply to Robbie251]

Can I relieve you of some of your worry: this thread is over a year old.

[Robbie251]

That's good hopefully my info will perhaps be useful to others