Keeping in touch

[Blossom20]

Hi, I haven't posted for a while as I'm not on pred any more - pmr in remission! I hope it's gone for good!I do read the posts most days and like to feel I still belong!

I'm a bit sorry for myself ATM as I've pulled muscles in my back and sides from coughing! It's very sore. I have asthma/ copd so I need to cough up stuff mainly morning and evening. It's agony! The doctor was dismissive and just said take paracetamol. It hardly does anything.

I put ice on at first but now I find heat helps more.

Has anyone got any tips about how to manage this? I guess that every time I cough I'm tearing the muscle again...

[123-go]

Hello Blossom20. Good to hear you’re in PMR remission.

You may get replies here but you would, I feel, benefit from joining the Asthma/COPD forum where there will be wider discussions. Best wishes.

[Blossom20 in reply to 123-go]

Yes, but this forum is better! And I feel like I know you all!

[123-go in reply to Blossom20]

That’s a lovely compliment to pay your friends here, Blossom.🌸

Forgive me for harping on- I mean well- but I’m sure you’ll find the Asthma/COPD forum equally friendly and helpful. To illustrate what I’m suggesting I’ve taken the liberty of finding replies to a question similar to yours. You may want to save this and read at some time down the line. It’s absolutely your choice whatever you decide to do and, of course, you must come back to PMRGCA whenever you wish. Here goes:

healthunlocked.com/asthmalu...

[sondya in reply to Blossom20]

😀 Know the feeling. Use the other and drop in here to catch up with old mates.

All the best.

[Nextoneplease]

Good to see you Blossom 🌼

Glad to hear that you’re off pred - and by the way I think it provides some balance to the forum to have some members, like you, who can point to light at the end of the tunnel!

That said, I’m sorry to hear about your current problems. I can’t suggest anything to help I’m afraid - I can only hope you are better soon x

[PMRpro Ambassador]

We love to see people back - and replying when they can help from their experience. You do still belong to this community. We keep TELLING newbies that people recover but you are the living proof! We need you - even if you don't need us as much.

One of those doctors that I hope experiences themself what it's like!! Take paracetamol - yeah, right, not the most effective of painkillers for pulled muscles is it!! Icing or heat often helps more and holding the area that hurts while you cough might make it less agonising.

[Blossom20 in reply to PMRpro]

Aww, thanks Pro! Glad I'm wanted!Yes, tried ice. Heat and Epsom salt bath helped most. Also homeopathy.

I do hold the area when I cough ....and am black and blue there! Bruised! A bit scary - if it's like that outside, what's it like inside?! It's cos of the aspirin I take I suppose.

Anyway, it's day 4 now and I am much better

How are you?

[PMRpro Ambassador in reply to Blossom20]

Seems strange to bruise with pulled muscles!

I'm OK - plugging along!!! Toasting myself on Lake Garda this week - better than summer was when I was in the UK!!!

[random901]

Hi Blossom20! Agree with PMRpro re holding area when coughing. I have COPD and have just damaged what I think is intercostal muscle by stupidly moving some furniture around. Arnica helps but also reaching for the codeine atm which, taken with paracetamol, is the business! Great to hear PMR's (hopefully) over. I'm still battling on 13mg pred.

[Blossom20 in reply to random901]

Oh, I didn't think of codeine...but don't fancy it much! I'll bear it in mind for future reference! Thank you.Good luck with the pmr..

[pmrdec112014]

Hi Blossom20I have PMR and also difficult/ severe asthma and previous diagnosis of bronchiectasis which has seen me start biological therapy for it up at Guys, London which has been life saving and life changing so belong to both groups as it were but having now had PMR for nearly 10 years in December I too feel the PMR group is much more

Have you tried ?

Active Cycle of Breathing

NHS University Hospitals Plymouth Physiotherapy

Type that in on Google ( as no idea how to copy and paste the link into this group)

It's a video on YouTube which they talk you through. I was advised to follow it during periods of illness when lungs infected of which the last three years have been many)

You are meant to sort of huff all the mucous etc up from your lungs as opposed to coughing it up. It does work and saves the strain of coughing.

I totally get what you are saying about this group as having had PMR for 10 years next month the group is so comforting with all their knowledge and supportive comments! And I have learnt so much about PMR from this forum.

And the relief when PMR Pro and Dorset Lady check in with their advice!!!!

In fact only the other morning I felt myself getting teary after reading some ones post and the replies as it brought back all the memories of those early very hard years when I felt like a bomb had just blown up my life!!!!!

I am still on pred but down to 3 / 2 mgs daily so GETTING THERE!!!

Best wishes anyway.

[Sophiestree in reply to pmrdec112014]

youtu.be/XvorhwGZGm8?si=Wk6...(Not working as expected?)

[PMRpro Ambassador in reply to Sophiestree]

You just beat me to it!!!

But here's the written version

plymouthhospitals.nhs.uk/di...

Which says at the bottom NOT to use it unless assessed and advised to do so by a physiotherapist.

[Sophiestree in reply to PMRpro]

ha

[Blossom20 in reply to PMRpro]

Thanks Pro!

[Blossom20 in reply to Sophiestree]

Thank you!! That's so good!

[Blossom20 in reply to pmrdec112014]

Aww, thank you! Yes, you will get there! Slowly does it ...Thank you for the advice. Your treatment at Guy's sounds great - what does it involve?

[pmrdec112014 in reply to Blossom20]

Well apologies to PMR/ GCA people as its not relevant to them but basically an injection every 4 weeks. The idea is that it disrupts the inflammation pathways in the lungs.Unfortunately it is very expensive and so the criteria to be eligible is very strict and it took almost 6 months from being referred by my consultant at local hosp to actually receiving the first injection and there were many soul destroying times with in that period constantly having to go up there to be assessed and times when I thought I wouldn't be eligible as my asthma classed as difficult does not fit the usual types of asthma or respond in the way it should!!!

I have not only lived off high dose steroids for the past three years but also had lots of infections too.

Anyway as I said been a lifesaver and life changer as been 7 months now since I had to take any steroids for my asthma!

Anyway best wishes on journey!

[PMRpro Ambassador in reply to pmrdec112014]

Having had a granddaughter with severe brittle asthma I can imagine the relief for you - and I have a niece with cystic fibrosis and she is on one of the vastly expensive things for that, hasn't had a winter infection stay in hospital since!! The grandaughter solved her "in the ED every 3 weeks" and almost constant high dose pred pattern by going vegan! Only has "normal" asthma now.

[pmrdec112014 in reply to PMRpro]

Hi PMR Pro!These injections work like magic eh!!!

I am so pleased your granddaughter is more stable now.

Now that I haven't needed the high dose steroids and the fact I am down to 3 /2 mgs for PMR I feel a bit better and can cope with short bursts at the gym ( totally wacked after and for the rest of the day though) and am losing some weight!!!!!! I am becoming even more conscious of my diet for other reasons too so it's all had a knock on effect!!!

Long may it last.

Best wishes.

[PMRpro Ambassador in reply to pmrdec112014]

"Long may it last." - indeed!!!

[PEC2]

Blossom20, it is so wonderful to hear from someone who has made it to the other side. There really is light. Good luck with COPD. Please check in again. Would love to hear how things go.

[Blossom20]

Aw, thanks....'made it to the other side' sounds like I've become enlightened! Not yet! But yes, seriously, I'm so pleased to be off the pred. I don't want to jinx it by saying that!