Newbie at handling PMR & GP (which is worse?) Dia... - PMRGCAuk

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Newbie at handling PMR & GP (which is worse?) Diagnosed February 2018 (age 66)

saffron52 profile image
saffron52

Hi All this is my first post to the site though I have been reading posts for a while now. It has been a God send to me after feeling very lonely and at sea garnering the usual info but needed to know what it was like to feel having the symptoms of PMR, were my symptoms the norm or not? It has been a great comfort and source of info for me.

Just had to let you know I will be in need of training my GP after the last visit. All started well when diagnosed and was handed steroids at 20mg, then she wanted to drop after 6 weeks to 15mg then after one month to 15mg/10mg alternative days. Then I had my first flare up. I took an executive decision and went back up to 20mg but seeing her this week asked her if I could go back up to 20mg and she agreed but was not a happy bunny (mind you neither was I) but since I had already been taking them for 10 days or so wasn't that bothered about her input.

Now I come to the best of all during this consultation, she explained that she wanted me off Preds pronto, so, with the help of your in-house training for GP's I said, " I want to come off, you want me to come off but my PMR does NOT want me to come off". So I think to hammer home her "advice" she then said but you do not want to be taking steroids for the rest of your life (Huh) because they will make you FAT and your face will become BLOATED and who would want that. Well that cheered me up no end so went home and had a rant to hubby chucked things about, kissed me dogs, and then decided I would have a big English breakfast - so there GP!!!! I am really sensitive to steroids but in a good way, do not have so much fatigue now, no probs sleeping, just really painful in the mornings and very painful knees. I take my gastric coated Pred/one Co-codamal with cup of tea at 7.30 a.m. and find that they filter into body quicker during the day. Did originally start on uncoated Pred but they did not seem to lock in until 7.00 p.m.that day. Showed her Dead Slow schedule and she was very dismissive, it would "take a long time to come down off them" I thought that was the point.

Keep well all of you out there and take care of yourselves, hope you like my photo of me and my Rottweiler Saffron, she is 10 years old now and is beautiful.

Love to you all

Angie XX

26 Replies

The pros will be along to advise. I think you handled yourself assertively (I tend to be the meek little lamb when it comes to doctors - but I'm working on it!). Sounds very quick to me - I was diagnosed November 2017 started on 30 (bit high I learn from here) and now on 10 (reducing in two weeks - dr wants one per month down to 0/2 but I've negotiated coming down in halfs every fortnight and seeing how my body responds). Thanks to advice here I mentioned DSNS and dr had heard of it - did I detect a slight dismissive tone? - but she was happy with my suggestion and agreed I could call if I had problems around 7/8 when adrenals cut in. If not for this site I would be lost, floundering and completely at the mercy of my doctor. I am now feeling more in control and won't hesitate to contact dr if struggling ensues. Good luck saffron52! X

saffron52 profile image
saffron52 in reply to Pongo13

Thank you Pongo13 it was very early in the morning which is definitely not a good time for me, felt a bit like as wet lettuce leaf, but, I tried I really did to be civil as she has been very kind in the past, but, she seemed to be rigid about what the rules were. I did ask for 2mg & 1 mg of Preds but she said noooo until I get down to 10mg I can't have them. I am capable of bringing myself down at a good pace but we have come to a bit of an impasse. Have telephone appt with her to be booked early July so will have another go at trying to get some 1mg & 2mg tabs. There my be a miracle and she gives in - keeping my fingers crossed.

Wow, Saffron, you handled yourself well!!! Great job in replying that the PMR is driving the bus. Amazing that the doc’s reasons to get you off Pred were all cosmetic concerns. Next time you go, she may start that conversation again, but perhaps with physical concerns. If she does, whip this article out.

So proud of you for being an educated advocate of your health!

practicalpainmanagement.com...

saffron52 profile image
saffron52 in reply to Insight329

Thank you Insight but I owe a lot of it to this web site so full of useful information. Though I do have a secret weapon, I have a best friend who has been on steroids for 45 years due to Myasthenia Gravis another autoimmune disease which is some ways is like PMR (except she goes into respiratory arrest) and she is an expert in both doctors and steroids. One Professor had to agree with her that she knows more about steroids than he does! She is fine and going from 100mg steroids at the start of her illness is down to 2mg every other day, she does not have problems with her bones and has not put on weight! So she was the one who has guided me to start with, she is still alive and kicking after many years of doctors/nurses trying to kill her off and has a line in sarcastic comments to back her up - bless her. I am always civil and polite to NHS staff they have enough to cope with but not listening to what you are saying is not good enough.

Chrob profile image
Chrob in reply to saffron52

Good for her and good for you . I think training the gp and rheumatologist is part of pmr from all I’ve read .

Insight329 profile image
Insight329 in reply to saffron52

This site is such a blessing, isn’t it? Wonderful that you have someone so knowledgeable about steroids in your inner circle. And she’s a testament that not all gain weight or lose bone health while on these drugs and after being on them 45 years, she should know. Is she doing low carb? Special diet? Give you any advice that you’d like to share? Thanks for sharing her story!

PMRpro profile image
PMRproAmbassador

Oh dear - they know what PMR looks like, they know you manage it with pred - but fail to get the point: you need what you need and you will need it as long as you need it!

As for "they'll make you FAT and BLOATED" - not if you are disciplined and don't stuff your face with carbs and keep the salt down too. But I'm sure you have seen all the discussions about THAT.

What a wonderfully supportive and helpful GP - NOT! I would be seeking advice from another doctor in the practice. One who understands the meaning of compassion and the intricacies that can arise during reduction.

Next time take the Rottweiler and hope she doesn't know they are really pussy-cats in disguise. And as your first question perhaps something like "Is there something you haven't told me when you ask about not wanting to be on pred for the rest of my life? Am I going to die soon then?"

PMR has a median duration of 5.9 years, under 20% are off in under 2 years and about 75% need up to 4 to 6 years. I hope you will live rather longer than 6 years...

Insight329 profile image
Insight329 in reply to PMRpro

Good one! I didn’t catch the ‘rest of your life’ craziness. I got stuck on the doc worrying about cosmetic concerns and ignoring the possibility of PMR morphing to GCA without treatment.

Some posts ‘hits a nerve’ and periodically through the day I’ll reflect back on it and the responses. I have a feeling this will be one of those posts.

(i didn’t know that about Rottweilers. I always thought of them as mean devil dogs.)

PMRpro profile image
PMRproAmbassador in reply to Insight329

They can be totally soppy!

Welcome to the Good Ship PMR saffron52.

Just one thing....where’s Saffron’s photo?

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Soraya_PMR

In saffron52’s picture.

Haha! Was that there before? I was expecting a photo at the top of the thread. Silly me.

Don't tell anyone but I strangled my last Gp,well she asked for it! That will teach her not to know anything about PMR😡..🤣

CT-5012 profile image
CT-5012 in reply to Sandradsn

😂😂😂

There may be light at the end of the tunnel - well, in West Yorkshire anyway. Rang surgery for a repeat prescription of preds. Couple of hours later I got a call back from a very pleasant (sounded very young and very foreign) doctor, apparently new to the practice, and asking about my PMR. So after a bit of a question and answer session, he thanked me profusely for talking to him and giving him an insight into PMR which he didn't have before!! AND, would I be prepared to talk to him again should he have any further questions. Well my dears, I was gobsmacked!!!

Sandradsn profile image
Sandradsn in reply to borednow

I'm very impressed,that's encouraging!

Rugger profile image
Rugger in reply to borednow

I think you should ask for a double appointment with him asap!

What about asking Estellemac for a copy of her 'training manual'? :-D

borednow profile image
borednow in reply to Rugger

Oooh don't think I'm that brave (re training manual). Thinking I'll just rest on my laurels at the moment !!!

Telian profile image
Telian in reply to borednow

Wow!! that gives me hope if I move to West Yorkshire - we're in the very early planning stages... that's such a boost for you.

borednow profile image
borednow in reply to Telian

There you go then - I need to keep an eye on this doctor and will not be happy if he's just here temporarily. If he does disappear as fast as he arrived, will find out where he's gone and then let you all know. If he arrives in your part of the woods, he should be very useful. Always assuming of course that my training was correct!!

Rugger profile image
Rugger in reply to Telian

I'm in West Yorkshire too and my GP is a gem. Must be something in the water!

Telian profile image
Telian in reply to Rugger

I like to hear it - was/is my biggest concern as have such good health care here..

Welcome to the Forum. What a saga! I'd be looking for a new GP - unless you really do feel you have the energy each time to 'train' her. Thank goodness for your friend and this forum!

I'm interested in your comment about uncoated vs gastro-resistant pred, as it ought to be the other way around. The uncoated tablets should kick in quickly and the gastro-resistant should take several hours to release the pred. That's the reason why some of us take the coated tablets at night, so the pred is released in the early hours to coincide with the cytokine dump.

You say it was soon after your diagnosis that you took the uncoated tablets - maybe your issue with them was more to do with the build up of inflammation that needed clearing out, than the tablets themselves? Also, we can feel better in the evenings than the mornings - I did, even before I was diagnosed and treated.

I mention this because if you were to take uncoated pred, you could get a pill-cutter from the Pharmacy and chop the 5mg tablets up to get a smaller dose. I assume you have just 5mg coated tablets, which can't be cut. 2.5mg coated tablets are also available IF she'd prescribe them, so you wouldn't need to do the alternate day routine.

Pred is so cheap and she is so mean, rationing you!

Let us know how you get on.

x

Ohh bless you all for the solidarity you have shown me. I think the moral is do not tangle with anyone armed with info from this site and me first thing in the morning never a good time!

About the change in Preds after a long talk to my friend JC I decided after probably about 8 weeks to change from uncoated to gastric coated. The reason for this was I took the 20mg in morning after breakfast but I was not getting any benefit until about 7 pm from the extreme pain I was in (many trips to the toilet from bed on hands and knees). JC explained that often the uncoated swill around in the stomach thats why they are so bad for the digestive system but the gastric coated tend to enter into the bowel and absorb better and at a more even pace. My GP said yes I could have gastric coated which are slightly more costly to the NHS but as I was having the most horrendous heartburn with the uncoated she did agree it might be worth a try. I now find I can wake up do not have to gallop about to get breakfast in order to swallow Preds, but hubby brings in tea at 7 am I take them wait for Co-codamal to take effect ( 1hour) and then get up and by mid morning I find everything is coming together. I am taking Omeprazole but just 20 mg now same time I take Preds. This regime works for me and my body ( suffer from slow transit constipation - I know too much info do not read before tea) and if GP would not be so insistent about tapering dose I would be happy (well happyish anyway).

Another thing JC and I have talked about is a Dexa scan, have any of you had a Dexa scan before taking steroids, we both think that a base line scan for them to compare before and after steroids would be useful information for the treatment of PMR. It is difficult to pin down after you have been taking steroids for months/years to then blame Preds for loss of bone density if you have not found solid evidence before, this is the major thing they hit you over the head with to get your taking of Preds down quickly. Your thoughts would be really interesting.

My Saffron is the sweetest dog you could ever wish to meet. She is like a princess and shakes her paw in welcome to visitors, plays with the grandchildren 4 and 6 yrs old and has never put a foot wrong. Is terrified of small dogs, once when attacked by a little terrier she tried to jump up into my arms, dopey dog she does not realise she is 8 stone in weight. Will send you photo next time of my other two who are characters.

Love to you All - you have given me such a laugh with your comments

Angie XX

PMRpro profile image
PMRproAmbassador

Yes, get a dexascan for a baseline - though you MAY find the bone density is already low if you are really unlucky! Mine was fine about 2 months after I started pred and I refused to take alendronic acid. After over 7 years on pred the bone density had hardly changed - it is not a given that pred will damge your bones. I did take calcium/vit D supplements every day of those 7 years mind!

Usually the pred problem is felt to be the other way round - enteric coated is not so reliably absorbed. Not that I had a problem! Plain pred should be absorbed from the stomach in under an hour or so. But I had a problem with methylprednisolone, it took all day to work if I took it in the morning, by taking it at night I got a bit of benefit but needed 20mg to get any effect. Often it is the fillers in the tablets that lead to that sort of non-effect. Different manufacturers use different stuff and they don't suit everyone. Enteric coated usually take at least 4 to 6 hours to be absorbed - since they have to get much further down the gut and that takes time.

Thanks for the reply, there is so much to learn about PMR it is helpful to know how to control the illness. The way I take the coated Pred seems to work for me better than anything. I was not making headway at all on the uncoated. The flare up from coming down quite quickly from 15 mg and then 10 mg every other day was really awful, did not know whether I was coming or going. Will suggest a baseline Dexascan to the GP's as I feel it is important for maybe studies to come on PMR that they have information regarding the use of steroids. I did fill in a questionaire from Keele University who are studying PMR which came through from my GP, has anyone else had one? Hopefully in future more research will be done and better knowledge of how it can be a really complicated and unknown auto immune disease which makes coping with it so blessed hard.

Thanks for the reply

Take care all

Angie X

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