Advice please

[Emilytom52]

I did write a quite long and detailed post. But it got lost in the ether somewhere ! If one of you lovely lovely friends have the energy to catch it please would you reply ? The gist of the post was do I need to up the preds until I don't feel any ache or pain in my hips and bumper or just until it's bearable. It's soooo confusing. Also if I take pred that easies the pain completely am I stopping my adrenal glands from starting up ? Cos my body thinks " it's ok we've no need to start working cos pred doing it for us " sounds crazy doesn't it ? Hope one of you lovely compassionate friends can help me understand a little more. I've got a copy of Kate's book on its way. Thaaaaaaank you xx E X

[Celtic PMRGCAuk volunteer]

Emily, when we first start taking steroids, we can usually expect about a 70% improvement in our pain levels within a few days, sometimes within hours. Much the same if we have a flare - we can expect a similar improvement, but not often a complete resolution of the pain, except for a few very lucky people.

It is generally recommended that if symptoms worsen, we increase our dose by about 3mg in the hope of dealing with the increased pain. However, in the case of a severe flair, a 5mg increase is considered by some experts to be the amount required.

Higher doses of steroids do suppress the adrenal glands, but we need to take whatever dose or bodies need to control our pain levels at any given time. There is no point at all in taking an insufficient dose for the amount of inflammation circulating, not least because, apart from being in unnecessary pain, it leaves us at risk of GCA creeping in through the back door.

I'm glad you've ordered the book - it will answer lots of questions.

[Emilytom52 in reply to Celtic]

Thank you so much for your speedy reply. I didn't realise that not taking enough pred could leave the door open for GCA. I'm so grateful to you I'm welling up now. Thank you. Time for a glass of red. Wish you could join me felt bit down today. Despite my wonderful husband and loving family I sometimes feel lonely ! But I know now I've some bril friends here 💐💐 E X

[Celtic PMRGCAuk volunteer in reply to Emilytom52]

Emily, wise words of reassurance for you from DL.

Loneliness when first diagnosed? I remember it well.

If you can let us know roughly whereabouts in the country you live, there might just be a support group nearby where you can meet up with others for a cuppa and some understanding company.

[Emilytom52 in reply to Celtic]

Thank you x I live in Kent (south east ) 💐 X

[Celtic PMRGCAuk volunteer in reply to Emilytom52]

Emily, there are four small 'meet-up' groups dotted around Kent. You will find further details on the following link:

pmrgca.co.uk/groups/

[PMRpro Ambassador in reply to Celtic]

What link Celtic?

pmrgca.co.uk/groups/

[Celtic PMRGCAuk volunteer in reply to PMRpro]

Oops! PMRpro to the rescue! Thank you PMRpro, and apologies to Emily.

I can't even put the blame on steroid brain fog. Can I use my stupid keypad as an excuse? It keeps missing letters - most disconcerting. Have replaced the batteres but guess I need to replace the keyboard......!

[Emilytom52 in reply to Celtic]

💐x

[PMRpro Ambassador in reply to Celtic]

As long as it's not the user

[pmrdec112014 in reply to Emilytom52]

Hi Emilytom52 I also live in Kent! Funnily enough there is a GCA PMR meeting being held at a hotel in Maidstone if you free......

[Emilytom52 in reply to pmrdec112014]

Hello pmr Dec Thank you. I'll keep eyes and ears open. Xx

[Lafontainepam1 in reply to Emilytom52]

Emily, please you are not alone we are all here for you. As much as your family loves you they cannot understand what you are feeling. We have all been where you are now. With the right dose of Prenisone you will feel pretty normal, do not ever be in a hurry to reduce to fast, a flare will hit you smack in the face! I've been there several times over the last 5 years! These gals and a few guys are a real blessing when your in trouble. Remember, your not alone! 💕 💕 💕💕💕

[Emilytom52 in reply to Lafontainepam1]

A www thank you soooo much for your kind words. I'm taking things slowly. Trying not to feel guilty about resting !!! Xx 💐

[Lafontainepam1 in reply to Emilytom52]

Oh my, it took me so long to not feel guilty, it's the smartest think you can do is rest. Fatigue is right up there with pain, we all hate it but it happens to all of us. Keep being smart and rest!😎💕💕💕

[Emilytom52 in reply to Lafontainepam1]

Thank you for making me feel better. E X 💐

[Doralouise77 in reply to Celtic]

Celtic, I still can't used to hearing that if the PMR is not treated well enough we are more prone to GCA. I think I asked before if there was any specific info on that anywhere as I can't seem to grasp that. 10-15% of PMR will get GCA according to the literature I've read but it doesn't say, to my knowledge anyway, that the risk is greater if the PMR is not controlled. How would you know if you had no symptoms and markers were good that it wasn't being controlled? I apologize for being like a dog with a bone who can't let go and my background in science keeps telling me I need proof.

Cheers

[PMRpro Ambassador in reply to Doralouise77]

It's a "bone" of contention

Some doctors feel it does lead to progression, others don't. We (Celtic and I) know we read a paper saying it years ago but we can't find it again! I know exactly what you mean - there is no logic is there, if you need a higher dose of pred for GCA then you have to feel that the PMR dose isn't going to prevent progression to GCA.

Personally - and I know a couple of rheumies who think the same - is that they are actually the same disease in many patients and that PMR comes in several flavours anyway, it just so happens several of them respond to pred. But there are a lot of people who "just" have what are conventionally seen as PMR symptoms but they are actually due to GCA in the larger arteries in the thorax and abdomen rather than affecting the arteries in the head and neck. Since we are rarely diagnosed as a result of the PET imaging which is about the only way to identify the inflammation in those arteries no-one ever sees it.

[Doralouise77 in reply to PMRpro]

There seems to be a controversy as to whether the two diseases are the same or not. One recent paper I read said that PMR and GCA resemble each other on two points but not on a third. I will look for the reference if anyone wants it.

As far as uncontrolled PMR leading to GCA, I might be misinterpreting your thoughts. I could believe if your PMR went untreated or you were not on enough Prednisone to keep markers down or be symptom free your high inflammation level could put you at risk for a lot of conditions/diseases including GCA. I would like to think if someone had been diagnosed properly and timely they would also be treated the same. It would be a terrible guilt trip to think you had put yourself at risk and caused your GCA.

Cheers

[Doralouise77 in reply to Doralouise77]

Interesting re inflammation in PMR:

medicalnewstoday.com/articl...

Cheers

[Celtic PMRGCAuk volunteer in reply to Doralouise77]

Animi, I'm sorry that, like PMRpro, I just can't put my finger on the paper that I read with this statistic.

I can even recall the words saying that whilst about 3 in 10 patents on treatment for PMR succumb to GCA, that figure can rise to around 7 in 10 for those not treated.

I did read this some 10+ years ago so, of course, the question arises as to whether latest research may not bear this out, BUT I spent a year with undiagnosed PMR, with 4 months of that year spent in bed and travelling to hospital rheumy appointments by ambulance and wheelchair. I recovered spontaneously towards the end of that year but it was short-lived as all the symptoms returned together with new horrendous symptoms, and 3-4 weeks and 4 different GPs later both GCA and PMR were diagnosed....by a wonderful pharmacist initially!

[Runrig01 in reply to Doralouise77]

I firmly believe that pmr not treated properly opens the door for GCA. My personal experience was having pmr symptoms for 14 months before the rheumatologist agreed it was pmr and started steroids. She gave me 15mgs for 2 weeks, then 10mgs for 3 weeks, then when I reduced to 9mgs I developed burning temples, jaw cramping and tongue pain. Further GCA symptoms developed over time. Believe it or not it took 2 yrs to get a GCA diagnosis, because at 47 I was too young. It was eventually diagnosed by 2 experts connected to the charity. My story is an unusual one but hopefully will make people aware it can progress to GCA whilst taking steroids. Runrig 😃

[PMRpro Ambassador in reply to Runrig01]

I certainly believe that poorly managed PMR leads to a lot of other vascular inflammation and problems - if you have long term poorly managed inflammation of any sort it must be causing damage.

[DorsetLady PMRGCAuk volunteer]

Hi Emily,

I think in your earlier post we suggest you increase to 15mg. Have you tried that?

As Celtic rightly says there no point in taking a dose that is insuffient to control the inflammation/pain, you get the side effects and no relief, and the possibility of it progressing into GCA - a much more ugly beast.

As for your adrenal glands, once you've taken Pred for 3 weeks anyway they've decided to go for a lie down! Plenty of time to worry about them later on down the line - but that's another story!

Once you've read Kate's book hopefully you have some more answers, and maybe help you explain to your family and friends.

I agree it's very difficult at the beginning when you think you are the only person in the world with this strange and frightening illness, but rest assured there are lots of us - all willing to help.

Enjoy your wine. Cheers!

[Emilytom52 in reply to DorsetLady]

Hi Dorset lady. Thank you soo much for your kind message. I did increase to 13mg being bit wary to take 15 mg but obviously it was not enough so from tomorrow I will up to 15mg. I did not realise that taking only the minimum to just ease the pain could let GCA come a skipping in ! Thank you for your good advice and come also and join me for glass of wine. Cheers. God bless. Xxxxx

[DorsetLady PMRGCAuk volunteer in reply to Emilytom52]

Hi Emily,

It's not a given that you will get GCA, but it is a possibility - so don't get stressed about it. But as both Celtic and I suffered/suffer from it from late diagnosis of PMR, we always point out the possibilities to newcomers.

Take care..

[Emilytom52 in reply to DorsetLady]

Thank you x

[Emilytom52 in reply to DorsetLady]

💐 X

[HeronNS]

Hi Emilytom. I know how you feel about this disease. I was really low before diagnosis, and not so happy for the first few months on pred. But as I got used to the "new normal" and admitted to myself that all appearances to the contrary I had a serious illness and needed to be kind to myself, things began to improve. I've had a few hiccups during my taper, notably at 10-9, 7 and 5 - all the classic places! I'm now at 4 and holding for a few weeks to make sure all is well. I write this post to you because ever since 9 I would say that I've had what I refer to as "niggles". I know I still have PMR because I still can be aware of "stiff pain" in my upper thighs and sometimes my shoulders and neck. I live with this. If it gets worse, then I slow my taper and wait at a level for a bit longer until it subsides again. With a very slow taper I have only had to up my dose once or twice, and then only for a day or two. But, no, I have never been pain free since the earliest days, when prednisone miraculously wiped out ALL my aches and pains, even the ones that didn't have anything to do with PMR. At my current level it really isn't so much a return of pain which is a problem, but the fatigue which arrives with each taper, as those sluggish adrenal glands have to realize that I am now demanding more of them. That's the "other story" Dorset Lady refers to. And it's not such a bad story, I'm not complaining. ⛅🌈🌞

[Emilytom52 in reply to HeronNS]

Thank you x 💐