Feeling Supported

[Louisa1840]

I have been having a torrid time over the last few weeks. It's like the Pred is no longer working (diagnosed in May 2017). I stagger around like a half dead, manky penguin! I have never got below 9 mg daily and once down there have experienced flares every time. But this latest bout, whether brought about by stress or a winter virus has been awful - reluctantly I upped to 15 mgs daily. I knew I had to see my lovely GP (she has recently won an award for Best GP in Tasmania - aren't I lucky?). I went in with a list ranging from "can I up my pred?" to "is this a stye on my eye"? She was so lovely, as ever. YES, up your pred you need some quality of life - no penguins allowed here!!! So now I am trying 20 mg per day (back to where I started over 2 years ago). She has also put me onto an Extended Care Plan where I can receive 5 free appointments per year to 2 allied health professionals. So, once i am feeling markedly better, I am off to see an exercise physiologist who can hopefully give me some strengthening exercises for my hips. I find it hard to go up stairs and sometimes my legs simply give way so I think the pred has weakened my hip muscles in some way?

I guess what I am saying, is that a good medical team is imperative. I now feel I have a way forward. I have a plan, have taken some control and hope for the future. I also told her about this forum which she already knew about and said what an incredible source of information, support and encouragement you all are.

Thank You!

[Hidden]

Ah Louisa

I know how you feel, back to square one 🙁

But it sounds very much as if it needs to be taken back in control, l’m so glad you have such a great GP is she going to send you to see. Rheumatologist?

Best of Luck 🍀

Keep us posted.

MrsN

[Louisa1840 in reply to Hidden]

Mrs Nails we did discuss it but we both felt that there is no magic bullet. PMR will go when it's meant to. Rheumys here are very expensive and I feel so supported by my lovely GP and the Extended Care Plan.

[Hidden in reply to Louisa1840]

I’m so glad you have such an excellent GP whose working with you. You’re right about no magic bullet, if only there was!

I’m off to the Rheumatologist today & hoping for a small Miracle 🙏🏼

I’m taking copies of all my old letters, blood results etc & l came across a letter from my Consultant from 2013 & it’s just as l feel now! 🤦🏻‍♀️

So fingers crossed 🤞🏻 for later xx

[Louisa1840 in reply to Hidden]

Good luck dear Mrs Nails. Let us all know how you get on .......

[SheffieldJane]

Wow! Lucky you, that is just the kind of medical support we all need. So often we find medical intervention is about other imperatives rather than enabling patients to lead a relatively normal life, out of pain and other unpleasant symptoms. Your doctor is a gem and working with her makes me feel very optimistic for you. Keep us updated.

[DorsetLady PMRGCAuk volunteer]

Hi,

Glad you’re feeling better at the moment.

I know in your last post you mentioned see a Rheumatologist- and MrsNails also mentioned in her reply. Think it might be an idea. You are obviously still having problems - so maybe a second opinion might be a good idea- although you value your GP - it wouldn’t hurt to seek more advice.

I think you may have more going on, other than PMR. Or do you keep falling into the trap of trying to do too much when you feel less like a manky penguin!

Keep us informed please.

[Louisa1840 in reply to DorsetLady]

Think I do fall into that trap! I DO too much when I'm feeling well. Still lessons to learn.....

[DorsetLady PMRGCAuk volunteer in reply to Louisa1840]

Well, sorry to nag, but you do need to remember you have a serious systematic illness, and although the Pred may make you feel better -by keeping the inflammation controlled and giving you extra cortisol - it is not addressing the PMR itself. That is still chugging away underneath!

Mantra - pace yourself, pace yourself, pace yourself!

Think penguins on land not in the water. 😉

[jinasc in reply to Louisa1840]

Treat yourself like a 'Precious Princess' and learn to say 'NO'. If anyone says 'I'll do that' let them. Do not be proud. Friends ask you out and you say, like I learned, I will come if I can'. Good friends understand.

[Louisa1840 in reply to jinasc]

Good advice! I have become VERY good at saying no!! Rest , rest, rest , patience,patience, patience must be our mantra!

[scats]

Just to let you know that there is another manky penguin living in the northern hemisphere who is also hoping a physio can help. Keep your pecker up!

[Louisa1840 in reply to scats]

GO us manky peguins!!!

[scats in reply to Louisa1840]

😊🐧😊

[YuliK in reply to Louisa1840]

Louisa I'm sorry to say that over the past month I also have transformed into one of those "manky penquins"

I tripped and fell over into the street about 4 weeks ago. Landed on my left side, my boob , causing bruised ribs and a badly bruised and swollen right knee..

X-rays were taken and I was so lucky not to have broken anything.

The a&e doctor mentioned with a smirk 😏 on his young face. "You are lucky to have so much padding on your body "

In other words, that prednisone had bloated me in the right areas. Well I suppose there are pros and cons in everything. 😂

Four young men had to physically lift me to the pavement..never had so much attention for such a long time. Wink wink 😉

Anyway cut long story short, my right knee is still paining and now have joined the penguin club. 👌

I was supposed to do blood tests for my rheumatologist but I have delayed it for a month. At 76 years of age I need time to recuperate from the fall.

I'm down to 5mg Prednisone and really pleased with myself. I'll wait another week or two and drop down to 4:5mg before the bloods.

Louisa, from one manly to another, we will get there in the end.

🌹

YuliK.

[YuliK in reply to YuliK]

Manky not manly

[Louisa1840 in reply to YuliK]

Ooh - lets be manly sounds very STRONG & authorative!!!

[Constance13 in reply to Louisa1840]

?????😏

[Hidden]

My thought when I read your description was, sounds like me on methotrexate. Am no longer on it. Believe from looking back on your profile and posts that you’re on it. Might be something to consider. Your gp sounds great. Her quality of life view is 👍 . My best to you. 🤗

[Louisa1840 in reply to Hidden]

You are so right about the methotrexate! It was one of the things I needed to discuss with my GP- the fact that I stopped taking it after 3 months. It made me feel awful & increased the fatigue no end.Have been off it about 3 weeks now so it's hopefully out of my system.

[Hidden in reply to Louisa1840]

Well that should not be a concern currently then. Believe I recall reading on here that effects ( good/bad? ) can take up to a month to dissipate. Best ask your dr, my memory could be faulty —- not a surprise there 🤪 .Don’t we just seem to have to go down a check list? Hope you get it all figured out. 🤗

[PMRpro Ambassador]

Were that they were all like your GP! What a star! I wouldn't bother with a rheumy - your pattern is similar to mine and my docs are all happy enough even if I need 15mg to function at times. It is what it is - I am probably one of the 5% who stick on pred for life. So what? It means I have a near enough normal life.

[Louisa1840]

Oh thank you so much PMRpro. It is always good to hear of someone with a similar journey. I am sorry to hear you may have this for life though.

Can I ask this - after 3 days on 20 mg I am not markedly better, still very stiff and penguin - like with very weak hips and aches - should symptoms not have resolved at such a high dose as they did immediately when I was first diagnosed and put on 20 mgs? Or could it be that our bodies get used to the pred & it takes more to "zap" us?

Someone has suggested too that the mtx may still be leaving my system? I do take paracetamol /osteo in case it is OA but not much relief. My general fitness is spiralling down which concerns me but I have such low energy and am so stiff it's an effort even to do a gentle walk.

I do work performing a play for tourists on 5 days which only takes an hour but is tiring. I enjoy it though. It is our main income stream and I feel the energy required is outweighed by the mental stimulus it affords me - I am an extrovert and need people!!!

Thank you for all the sensible advice you give us all.

[Hidden in reply to Louisa1840]

Just clarifying my experience with methotrexate and a review of forum responses I received. Apparently good mtx effects can last 3-4 weeks after stopping it. Bad effects, for myself and PMRpro , at least, dissipated after one week. Don’t know of any other people’s responses to dcing it. Does seem like it’s not the culprit now for you. Others have more knowledge to advise you. But I do understand

your discouragement at feeling so badly. My best.

[Louisa1840 in reply to Hidden]

Thank you for your sympathy and this response Ipadmom.

[PMRpro Ambassador in reply to Louisa1840]

That may be what it is, yes. It is common to find more pred is required to achieve the same result at a later stage and it takes longer to get sorted. No-one knows why. I found my hip and foot pain took some time to resolve at the start - but I felt amazingly better in general so I do wonder if that is the contrast that may be missing later?

[Louisa1840 in reply to PMRpro]

Thank you PMRpro. I am feeling a little less stiff so maybe things are improving?

I also remember, long before being diagnosed with PMR, extreme stiffness after sitting and what I could only call a strange feeling of electric shocks or bee stings running through my hands and wrists. I wen to a GP who had alternative leanings. He didn't suggest anything but put me onto mega doses of zinc and vit D which I later learned he did for most patients. I have often wondered what that was? I have been getting those sensations again lately.

I think you suggested before I may have an underlying condition? If only diagnosis were simple hey?

[PMRpro Ambassador in reply to Louisa1840]

The stiffness can be part of PMR - myogelosis it is called. I also have these sensations - it would be nice to know wouldn't it!!!!

[Louisa1840 in reply to PMRpro]

Thanks PMRpro. It's comforting to know you have these sensations too. I guess that's why the Similar to Me part of this forum will prove popular? It also maybe confirms I have had mild PMR years before it was diagnosed? I am very excited at present as a new grandson was born a few hours ago -over the moon!!!

[PMRpro Ambassador in reply to Louisa1840]

If it worked it might!!!!

Ooooh - new baby cuddles!!!!!!

[Hidden]

Congratulations on the birth of your New Grandson 🎉 💙 🎊

[Louisa1840 in reply to Hidden]

Thank you MrsNails! We have many joys that outweigh the problems of PMR. Count our Blessings....

[Hidden in reply to Louisa1840]

Charlotte is almost 14months old now & she love’s it when we play bounce & l lift her up in the air, so as long as my arms can manage that l’m grateful 🙏🏼

[Louisa1840 in reply to Hidden]

14 months is a lovely age MrsNails enjoy her!!