Neck shoulders aches.

[Flosy]

Hi.its me again,I am having a lot of shoulders aches,goes up back of my neck both sides.would it be because I gone from 4mg to 3mg.what can anyone suggest.thanks.

[jinasc]

Could it be your pillow?

[Flosy in reply to jinasc]

Don't know.

[DorsetLady PMRGCAuk volunteer]

Could be reduction….0.5mg a time would be better at such low doses…..1mg from 4mg is a 25% reduction, much too much! Not more than 10% of current dose is recommended- so even 0.5mg can be pushing it.

[Flosy in reply to DorsetLady]

Thanks for that.could I good back up to 4 or 5mg.

[jinasc in reply to Flosy]

Wherever you were comfortable at 4mg or 5mg. Then slow as DL has said.

Regarding the pillow, I had problems and invested in a GX Pillow. Problem solved.

[Flosy in reply to jinasc]

OK.thanks.

[Kendrew in reply to jinasc]

I also have discovered that my regular two pillows were too high for a healthy neck position and have purchased new ones that allow me to lay flatter and in a more natural and safe position for my neck. The neck pain and occipital pain have been significantly reduced since! Obviously, pred reduction is usually one of the most likely causes of pain in these areas, but sometimes the cause of our pain is not the most obvious one, and can be something quite simple that can easily be remedied.

[jinasc in reply to Kendrew]

Kendrew, I also passed the GX pillow onto MrsNails and she loves hers as much as mine. I have bought another one.......so now have put 4 pillows into the charity bag.

As you say sometimes we put everything down to PMR and then find it is something else. It is understandable - we all fall into that trap.

[Kendrew in reply to jinasc]

Just taken a look at GX pillows and there seems to be quite a few options! Do you mind me asking which one you chose for yourself?

[jinasc in reply to Kendrew]

Medium Firm and Medium Soft. I prefer the firm one, but the soft is lovely as well particularly when I want to sit up with a 2nd pillow. BTW get a code...

[HeronNS in reply to jinasc]

I looked up GX pillows. Over $500 Canadian! Can that be right? Also it got as many poor reviews as good, stating it didn't maintain its shape (Medium-Firm). Have you found yours has lasted well?

[jinasc in reply to HeronNS]

That is £286 - that is outrageous..............I paid £27 which is $47 Canadian Dollars.......if you decide you want one - then send me a PM. I also had a code, which gave me £3.00 off so that brought the price down to £24.

The man who invented is was an engineer and his daughter had a long term auto immune illness and was struggling to sleep, so he engineered a pillow for her and bingo no more problems. The WI founded in Stoney Creek, Ontario, Canada wrote the story in their magazine.

Mine is now 9 months old and as long as you remember to turn it over every morning it is fine. You are not supposed to sleep on the same side every day.

[HeronNS in reply to jinasc]

Probably available via A****n for reasonable price. I wondered whether it was available in any stores here, but apparently not. Not very good at choosing pillows. One time my daughter and I went pillow-shopping together. Neither of us liked our respective choices so we swapped, and then we were both happy! I'm still using that same pillow and it is getting tired. I wonder if there was a misplaced decimal point on the page I found?

[Kendrew in reply to HeronNS]

They're around £30.00 here in UK.

[Bcol in reply to Kendrew]

As Kendrew says. From the big "A" £29.99 with special offer at moment of two for £45.99.

[Boss302Fan in reply to HeronNS]

My wife got this pillow from ZaMat and fell in love with it. It’s $20 cheaper via Amazon Prime.zamatsleep.com/products/cer...

[Kendrew in reply to jinasc]

Many thanks.

[Smokygirl in reply to jinasc]

Morning my friend! Do you sleep on one, or two of the GX? At the moment I’m sleeping on a goose down on top of a Dunlopilo but the goose down is old and needs replacing. Would a GX “like down” be a suitable replacement in your opinion? Xxx

[jinasc in reply to Smokygirl]

One pillow - first time in my life - do not know anything about Goose down or Dunlopilo.

The pillow is engineered, so it is entirely different - so I used the search engine and found these two links:

gxpillows.co.uk/ - this is the official site of gx pillows

youtube.com/watch?v=U8MypGL...(Not working as expected?) - this is some woman on you tube.......

Hope this helps all who are now wondering why it is different. Nearly all my life I have been in awe of engineers - the problems they solve ........

[Smokygirl in reply to jinasc]

Thank you! Xxx

[DorsetLady PMRGCAuk volunteer in reply to Flosy]

Probably best to go to 5mg.

[piglette]

I found that at 1mg I had exactly the same problem, really uncomfortable all the time in my neck and shoulders, I just could not get comfortable. I went up to 5mg when it all went away and then down to 2mg which also seems OK. It seems amazing how a small amount can make so much difference.

[Flosy in reply to piglette]

So shall I try 5mg,and see what happens.thank you.

[piglette in reply to Flosy]

Why not, it might just bang the PMR on the head. I was not sure if it were PMR or something else originally but putting up the dose proved to me it was the PMR causing the problem.

[SheffieldJane]

If it happened to me I would assume that I had overshot my ideal dose and return to 4mgs. In terms of potential side effects the difference is negligible. On the other hand , I have cervical Spondylosis that gives me neck and back of the head pain. I noticed this symptom arising when I tapered to a lower dose of Pred. As if it had uncovered old arthritic symptoms. It is amazing how much difference a single milligram can make.

[Canarylady]

Good morning Flosys,I too have the same,shoulders the back of my neck,so I ve gone up to 10mg,but it’s just taking the edge off it!

I know I m on a higher dose than you.

Pillows sound interesting,shall have a look at them.

Like you I m terrible at choosing them,so most of them go back in their bag and off to a charity shop or friends!

I find a softer pillow suits me better.

Hope your pain improves soon,we all know how it gets us down!

Take care and stay safe.

[Thelmarina in reply to Canarylady]

Just bought a couple at gxpillows.co.uk - checked for discount codes and got 25% off from love voucher. Thought it worth a whirl! 😀

[Poshdog]

That could have been me writing that! Have read all replies, never thought of pillow, automatically thought PMR. On the strength of Jinasc comments have just bought 2 GX pillows £54 from the big A, will let you know how I get on. Forgot to add they are a pack of 2, one of each soft and medium firm.

[Bling123]

This has just happened to me went from 7.5 to 6 Dr orders and neck and shoulders killing me . Went back up to 6 and not to bad will ring Dr today to see if that's OK Have tried so many different pillows could set up my own shop 🤣🤣x

[kathyrob]

Same thing happened to me, can't get lower than 4mg. Dr now left it up to me to sort it. Tried several times to reduce, last Rheumy visit said 4 was a low dose and it could help with arthritis so I am at the point of leaving it at 4. Rheumy referred me back to Dr and hasn't given me any further appointments.

[Bignorhill]

The pain in my shoulders and neck were put down to Vasculitis and had to go back on a high dose of Pred and now reducing down again. Longer term it is Methotrexate that I been told I need to be on.

[PMRpro Ambassador in reply to Bignorhill]

"Longer term it is Methotrexate that I been told I need to be on."

Only if it isn't really PMR - many top rheumies acknowledge that MTX does NOT reliably control PMR symptoms. If it did they would use it, not pred. They don't. Prof Mackie in Leeds is seeking funding for a study to answer the question once and for all - studies so far are too small and poorly powered and no two agree.

[Hildalew]

If like me you prefer not to buy from the big A, you can buy GX pillows online at gxpillows.co.uk/ or they have a Freephone number so you can telephone your order. The prices they give do vary beween standard and luxury but none of them reaches the level that Heron quoted - maybe there is a typo in the site she is looking at.

[kalimche]

I am in the same boat as you! I had been tapering and had just reached 3 mg - very slowly I thought with no side effects having started reduction from 4 to 3.5 back in May....! When suddenly I had pains in my knees and back of neck and shoulders. I know I have arthritis in my knees but the shoulder/neck pain was too similar to my original PMR symptom, so I upped by 5 mg and took 8 mg for 9 days. Knee pain went, and so did the shoulder pain, so I dropped down to 6 mg where I currently am coming up to my 2nd week. But the back of neck pain is still there - and Co-codamol doesn't seem to do anything. I think I must have arthritis (or spondylosis) in my neck, where basically (same as with the knees) the pain has been masked by the Pred over the past nearly 2 years. I shall see how it goes, but I plan to try to drop to 5mg and stay there a while. Meanwhile I have followed the recommendation and have bought a pillow!!

[jinasc]

I do so hope that all of you who have bought pillows find they work. So far no-one that I know who has bought one has had anything not positive to say. So if you do buy one please let us no whether they helped you or were useless.

I noticed that HeronNS said there were lots of 50-50 reviews in Canada which has made me curious.

[LThomas]

My predominant complaint is shoulder pain, sometimes up the back of my neck also. Sometimes one shoulder sometimes both. Its been like that for a few years now. Currently on 7mg, higher doses alleviate it, but that's bad too. So I sleep in a recliner to keep the pressure off of my shoulders. Bio Freeze helps somewhat.

[cranberryt]

My neck and shoulders are the first thing to flare when my dose goes too low. I would go back to 4 until you are pain free and then decrease slower. 1/2 mg every other day and see how you do.

[pats000paints]

If it feels like PMR then your illness is still active. Go back to the dose that kept it asleep, and stay there. I was always told that PMR goes back to sleep when it pleases and no amount of slow reducing will make it do that if it's not ready. Give it a few months, then try again. I'm on 3.5mg now and no sign of PMR, but I'm wary. After over 10 years, I don't want a full blown flare!