Newbie after advice and support please

[Jlml]

Hi,

I have been struggling with bad neck, aching in top of arms, under arms, down sides of body and sinus feeling in head and funny pains on top of head for a couple of months with occasional dizzy spells.

I also have hasimotos ( underactive thyroid) which I have had for 15 years.

Saw Dr for blood tests and high inflammation showed up at 13 ( 0-5) and with symptom Dr said I was likely to have Polymalagia and has started me on 15 mg of peridone.

He has also referred me to a specialist at the hospital.

It's my third day today and this afternoon a lot of my symptoms seem to be better and my head seems a lot clearer.

I have another blood test on Friday and am due to see Dr again in 10 days just before I take off to Spain for 3 weeks.

Is there anything I should be aware of and does this all seem correct?

Thank you for any advice you can give me as this was all a bit of a shock.

[Angiejnz]

You've got the jackpot with this site. There are loads of people who chat and send support, groan, send jokes and generally keep us all feeling connected and no longer alone on this weird trip on the Good Ship PMR and then ..... there are the knowledgeable people who are experienced and learned who give us serious advice or things to consider. I'm one of the former (not a learned person) more likely to be the support of a female knight in somewhat rusty armour with a tickling stick. Good luck and enjoy the posts that follow. I'm in NZ but answers come from all over the world 🤣

[Jlml in reply to Angiejnz]

Hi Angiejnz,

Thank you so much for your lovely reply and for making me feel welcome.

I am feeling a little lost and nervous at the moment so it was very appreciated.

[Jackoh]

Welcome Jlml. Yes this site is so helpful and there are many folk here to commiserate with you and show understanding and some that will give you very helpful advice. Stick with us!

[Jlml in reply to Jackoh]

You all seem so lovely, thank you.

[PMRpro Ambassador]

Welcome to the club no-one likes being a member of!!

Above all - don't assume you are "cured" with the pred however well you may feel and don't go back to your usual level of activity. The pred just manages the syptoms by mopping up the inflammation. The process that causes that inflammation is an autoimmune disorder and it continues in the background leaving your muscles intolerant of acute exercise. You will be able to do more eventually but it may take some time and a very gentle training process to get your muscles stronger.

Do check with your holiday insurance that you would be covered if anything happened - you should be if the policy was taken out before you were diagnosed but it is as well to be sure. And even at this time of year you may find you burn more in the sun because of the pred so be careful.

[Jlml in reply to PMRpro]

Hi PMRpro,

Thank you for taking the time to reply to me.

I will check with the holiday insurance company. The doctor said that after 3/4 days I should be symptom free apart from the tiredness. Is this correct?

Please can you tell me what symptoms you have on a day to day basis as at present I still ache but not as bad as I did but am suffering with a foggy head and exhaustion, although finding it more difficult to sleep?

Sorry one more question, when I get to see the Endo will he be able to confirm that I have PMR?

Thanks for your help so far.

I promise I won't be needy for too long but at present I have no idea what to expect?

[PMRpro Ambassador in reply to Jlml]

Maybe, maybe not! There is this assumption on the part of many doctors that pred is a miracle in PMR. It may be pretty dramatic - I was able to move normally 6 hours after taking 15mg pred. But it was months before I was pain-free, the bursitis and tenosynovitis took much longer to go. And some people are NEVER pain-free - that is just the way of the illness.

The foggy head and fatigue are part of autoimmune disease - and for some part of being on pred. It does improve with time but for some it may not be quick. And the pred may make sleeping difficult for some people and that adds to the fatigue quite often.

This may help understand:

healthunlocked.com/pmrgcauk......

What I experience probably isn't relevant to you - I've had PMR a very long time, an unusually long time. And everyone really is different - we aren't saying that to be evasive.

Why are you seeing an endocrinologist? It is rheumatologists who deal with PMR and GCA. Endos come in towards the lower doses of pred if fatigue becomes a problems - they aren't much use at the outset.

Don't worry about "neediness" - this is a whole new world for you. You will get the hang of it over time and there is no point us giving you too much info all at once - you will drown!

[Hidden]

Welcome Jlml 🌺

This is the best place for advice & support, the treatment plan from the GP sounds good & he’s rechecking your bloods after a week or so on the Pred, is the plan to stay on 15mg until you see him again?

He will give you advice re travel & having sufficient Meds to take with you.

Is your E111 up to date as you can still use them for now.

Depending on how you feel you could book Airport Assistance, quite a few of us have in the past & it’s been invaluable.

Try not to over do things, start packing now if possible when you feel up to it, then there’s nothing to stress you in the days before you go.

Your GP will discuss a Reducing Dose Plan with you but reducing while you’re away is not always the best plan!

Don’t hesitate to ask questions, someone will usually have an answer or can point you in the right direction.

Once Again Welcome 🌸

MrsN

[Jlml in reply to Hidden]

Hi MrsNails,

Thank you so much for your help.

I am still in shock as this all happened on Friday. I am finding at the moment that I still ache but it's not the hurting ache (like being punched in both arms etc) that I had before and my head is a lot clearer as I thought I had a sinus problem before. Obviously not!. I am also finding that my best time is late afternoon and evening since I have been taken Pred.

Trust all this to happen just as I am off for 3 weeks...

[Hidden in reply to Jlml]

It’s quite a challenging diagnosis & a lot to get your head around.

The arms will improve over a day or so, l used to describe them feeling as if l’d been on the parallel bars & my brother had given me an arm twist to boot!

My nose was also very blocked before l was diagnosed too.

We always try to look on the bright side as best we can so at least you had it diagnosed before you went away.

The sunshine will do you good & help you feel much better in yourself. I note PMRPro mentioned you may be a little more sun sensitive, so be mindful of that.

Just remember the Pred only dampens down the symptoms it’s not a cure, so just take it steady, another couple of days you won’t believe how much better you’ll feel.

Have a lovely Holiday & don’t forget if you have any questions just ask.

Take Care

MrsN

[SheffieldJane]

It sounds pretty text book to me. Pace your activities on holiday. The renewed energy is fake I am afraid, you are still ill underneath, so take it easy. I hope you get lots of lovely vit D from the Spanish sun.

Check in with us when you get back, there is a lot of very useful information and support to guide you through this.

[Jlml in reply to SheffieldJane]

Thank you x

[Liskeard]

Welcome

I too am a newby - diagnosed December. This is a great forum, with lots of lovely people and useful advice.

I overdid it without realising how much I was doing (or how little compared to what I used to do).

Be kind to yourself, enjoy your holiday

[Jlml in reply to Liskeard]

Thank you I think I have done too much in the last couple of days as I am feeling totally exhausted today. But I am not good at taking it easy x

[Hidden]

Welcome to our wonderful group,you are in the right place for help and advice.Don't overdo things a step at a time.xx

[Jlml]

Thank you, I need to slow down and except I am not well at the moment.

Are you more tired in the morning after taking pred as I am finding I am normally better late afternoon and evening?

[SheffieldJane]

Yes. I used to fall asleep on the bed after my shower with wet hair. Prednisalone must have been the culprit. Yet it keeps me awake at night!