Began today.: Hello again my lovely gurus! Well I... - PMRGCAuk

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Smokygirl profile image
33 Replies

Hello again my lovely gurus!

Well I started my Pred this morning for the very first time ,15mg as proscribed because I had such a painful night and couldn’t procrastinate any longer. I have had a headache all afternoon and I don’t suffer from headaches. Is this normal and will it wear off?

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Smokygirl profile image
Smokygirl
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33 Replies
Smokygirl profile image
Smokygirl

Sorry prescribed, not proscribed!

Hi Smokeygirl,

I well remember holding those three little tablets in my hand & wondering if it was the way forward?

The headache may be a bit of anxiety, so you can a simple pain killer to see if it goes.

It’s not severe, or your vision affected in anyway?

Kind a Regards

MrsN

Smokygirl profile image
Smokygirl in reply to

Dear Mrs N—— you have described the dilemma exactly!

But no, the headache is mildish and no vision change. My head feels top heavy as well—-the only way I can describe it

Thank you for your suggestion of a painkiller, I was nervous about trying that. I shall take 500mg of Paracetamol—- half the recommenced dose!!!

I’m hoping my body will get used to the pred over the next few days.

Thankyou so much for your kindness xxx

in reply toSmokygirl

Good Idea! You’ve probably been waiting for side effects or whatever, so relax, maybe a cold compress on your head & hopefully it’ll be gone overnight. If not, please check in with us again but l’m sure it’ll go after a good nights sleep.

And, Welcome 🌷 please ask us anything you want as you start along your journey.

Kind Regards

MrsN 🌷

Smokygirl profile image
Smokygirl in reply to

Going out for dinner —— probably the wrong thing to do!!

Thank you again —- you are truly wonderful xxxxx

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toSmokygirl

No it’s not the wrong thing.... you still have to enjoy life...and it will hopefully take your mind off it! Enjoy!

I met the family for breakfast this morning by the sea! Fantastic! Just like being on holiday.

Smokygirl profile image
Smokygirl in reply toDorsetLady

How lovely! Do you live in UK?

Smokygirl profile image
Smokygirl in reply toSmokygirl

Silly question! You must live in Dorset🤣🤣🤣🤣

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toSmokygirl

Yes, and yes 😉

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Hi,

Don’t think is a usual side effect, but as MrsNails says could be anxiety. See how it goes, and obviously if you still have it come Monday ring GP or pharmacist.

Smokygirl profile image
Smokygirl in reply toDorsetLady

Thank you so much. It is so comforting to be able to consult you wonderful ladies who are so experienced and knowledgeable in PMR and pred.

You all calm me down and are so helpful and informative and so quick to answer too!

I can’t thank you all enough! Xxxxxxx

in reply toSmokygirl

I had a few stress headaches having never been a headache person. Someone said there is a PMR headache which probably occurs when PMR still active or flaring. So unless vision issues just take painkillers and enjoy, and relax for your dinner out.🌻

Blearyeyed profile image
Blearyeyed

Could be a headache from stress , or even the relief from stress as the tension in your head lifted after making the big decision.

It could just be unfortunate that you started steroids at a time when the country , and therefore you , have been very hot , so you might be a little dehydrated.

You could try upping your fluids and that might help.

If it's mild it should go as you body balances , just keep an eye on it .

Noosat profile image
Noosat

I found in the beginning I had headaches either from PMR/prednisone. My GP said I could take up to 4,000mg of Tylenol (I cannot tolerate Ibuprofin and the like) a day without harm. My dose per day is always lower, perhaps 1300mg, and not every day. Whatever you take check on internet for interactions. Now I've tapered to 5mg per day, the headaches are very rare.

Smokygirl profile image
Smokygirl in reply toNoosat

The headache and fuzzy ness is only the last two days , since I started Pred. I’ve had PMR for 10 weeks and just the horrid upper arm/ shoulder pain at night and stiffness in morning. No headache at all —ever—— never got them until Pred.

Did you feel thick headed too and fuzzy? I’m a keen bridge player—— don’t know how I’m going to play tomorrow! My poor partner🤪🤪🤪🤪.

Thank you so much Noosat for your kindness and info. If it is still with me tomorrow night I shall take a paracetamol. I think that is the UK equivalent of Tylenol. Xxx

Noosat profile image
Noosat in reply toSmokygirl

Yes, felt very thick headed and fuzzy, sometimes found myself grasping for a name or just a word. As I tapered on the prednisone, I became more myself. Also I split dosage between morning and evening. Now that I am down to 5mg. I take half with my coffee, toast with vegemite at about 6a.m. and the rest at lunch about 11-noonish. I am always stiff in the morning, but find that I move better as time goes on. After lunch fatigue hits and I slow down, usually read or play bridge on the computer (this is worse some days than others) However, If I need to go somewhere in afternoon, I find if I have a hot shower, water pounding on my back, I can brighten up and do the necessary. Part of this may be that I am a "morning person" I love the early cool mornings with the birdsong and the sun rising. Hope this is not too long a post for you, and there may be some encouragement in it. Have an absolutely wonderful day!

:)

Smokygirl profile image
Smokygirl in reply toNoosat

Loads of encouragement—- thank you so much! I am a morning person too! I Have always gone for a mile walk at about 8:30 am and still do. It does loosen me up. In the last few months before Pred I have been very stiff in the mornings and have to roll out of bed. Also I flake completely in the afternoon and sleep for two hours in bed —-so strange! Then I feed hubby & then go to the bridge club but have to be a moving pair otherwise I get stiff again—- find the seats hard too!! I was hoping that Pred would stop the afternoon fatigue.

Did you split the dose when you were first diagnosed and how does it help? You are so kind—- thank you again xxx

Noosat profile image
Noosat in reply toSmokygirl

I am not sure if I remember correctly, but I do believe I split the dose when I was about 15mg. By doing this, I didn't get as groggy feeling in the mornings. I wish my gait were better, I walk like a rusty tin man But I am walking without pain. This afternoon I applied to join an exercise group starting in September at a local facility. I'm hoping to strengthen the legs and become more flexible. As an ex competitive runner it has been extremely frustrating to lose so much strength in those strong limbs. On thinking of all the problems I might have in growing old, I never thought those strong leg muscles would let me down. Oh well, they are still working and may improve. Lots of smiles, enjoy your Bridge. Hope you have terrific hands.

Smokygirl profile image
Smokygirl in reply toNoosat

You are such a lovely warm person Noosat. I’m sure you will succeed with your exercise group. It’s very daunting for me to hear that long term pred /PMR can cause muscle weakness.

I suppose we all just have to keep going on the ride whatever it entails. It’s a steep learning curve for me.

Huge hugs for you xxxxx

in reply toSmokygirl

Whilst muscles do get weaker from under use you can keep walking up even if a bit less than you used to. You will hopefully find your own equilibrium as you go. It's all about finding the balance, listening to what your body needs and adjusting pred dose if you get PMR symptoms during tapers. Lots of time for that. I am sure someone will have already linked you to this but it's worth remembering that pred is not as bad as the Dr will make out.

practicalpainmanagement.com...

Smokygirl profile image
Smokygirl in reply to

Thanks so much P. Yes I read some of that article and was a bit depressed to hear that pred doesn’t clear all the pain. I had hoped it would. I have age related extra bone shards growing in my shoulders which add to the pain —- thought pred would help with that but apparently not! It’s my arms that are so weak, so I thought I would start Tai Chi classes—- do you think it’s too soon to do that? xxx

in reply toSmokygirl

Just start with a quarter or half session and build up. PMRpro recommends using water bottles with water in for strength training. Start with small bottles with 1/4 full and again build it up.

I have got to say your shoulders sound very painful...yikes. pred might not help with that pain but if you can build some muscle it should help. I use an exercise band so if I am sitting watch TV or something I stretch my arms and legs with it.

Smokygirl profile image
Smokygirl in reply to

Thanks again P. Well, I have just cleaned my cooker —- I have no doubt that I will pay for that in the wee small hours! Did it without thinking cos it’s Monday. I guess I’ll learn soon! I’m lying down for a few mins now! Xxx

in reply toSmokygirl

Yikes again. No that won't help. Leave it and pay someone to do it. Apparently these people make it look like new 🤣🤣🤣

Smokygirl profile image
Smokygirl in reply to

🤪🤪🤪

Linny3 profile image
Linny3

Hello and good luck on your pmr journey

Unfortunately, I have had a headache from day one of taking prednisone. (3 &1/2 years) It has never gone away. It is mild but annoying, also my ears ring. I am prone to headaches so I figured that is my weak spot and was not surprised to get headaches.

Smokygirl profile image
Smokygirl in reply toLinny3

Oh I am so sorry Linny , that’s not good! I have never suffered from headaches ever so I’m not used to this feeling. After three years you must be on a minimal dose? Are you near to coming off altogether?

Big hugs xxxx

Linny3 profile image
Linny3

Unfortunately, I have not bee able to come down very much. I started at 20 mg. and can"t seem to get below 12mg. I am now at 13 mg. and have started methotrexate to see if it helps me reduce a little better.

Smokygirl profile image
Smokygirl in reply toLinny3

Oh I wish you all the luck in the world Linny. This PMR seems to affect everyone differently. I am on a steep learning curve. Xxx

Linny3 profile image
Linny3

My sleep was disturbed in the early days of pmr. Not so much anymore. Good luck hope you find some relief. Stay Strong and persevere.

Smokygirl profile image
Smokygirl in reply toLinny3

You are so lovely! Best wishes to you too xxx

Clickangel profile image
Clickangel

I have been on prednisone since March. I am not prone to headaches but I did have headache for a month. Nothing horrible and it was always in the back of my head. I think a lot of it was worry about getting the GCA. As the days have gone on I don't have them much.

Smokygirl profile image
Smokygirl in reply toClickangel

Thank you so much for your kind reassurance! It means a lot to me as I too am a worrier! Every good wish on your pred journey too! Xxx

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