Creaky Joints!

[AshPen9]

Hello Everyone. Having had trouble going down to 4mg Pred previously, I'm nearing the end of a 6 month taper from 5mg to 4mg. Over the last couple of months I have had a really stiff neck and shoulder pain on one side. I can't decide if this is symptoms coming back, or osteoarthritis, because I definitely had a bit of that in the neck before Pred. I've got a bit of Scoliosis/Kyphosis and the back of my neck is really curved these days, which probably doesn't help. Added to this, over the last two weeks my neck and left shoulder are crunching almost every time I move.

I'm going to ask for ESR/CRP to see if there is any increase in inflammation, and will up my pred if necessary. My question is, can I do anything about the crunching? Is there a specific exercise or supplement? I take Omega 3 and Vits B, C, & D. I can't take turmeric due to Clopidogrel.

Thanks very much for being there.

[DorsetLady PMRGCAuk volunteer]

If you think it might be OA -and quite likely grumbling at lower dose of Pred -pain masked by higher doses-have you tried painkillers or Flexiseq to ease it?

flexiseq.com

It’s not always PMR -and crunching can be a sign of OA…

... but would also suggest reducing by 0.5mg from now on.

[AshPen9 in reply to DorsetLady]

Thanks very much DL. I haven't tried painkillers because it's not desperately painful, just really stiff and crunchy. Will give the Flexiseq a try though. I suspect it's a bit of OA and a bit of my Spondyloarthropathy. Would really like to get rid of the crunching though. Am definitely going to go with 0.5mg next time. I didn't argue when my rheumy told me to go from 4mg to 5mg, probably because I was so pleased that he gave me 6 months to do it!

[DorsetLady PMRGCAuk volunteer in reply to AshPen9]

That was very generous of him….but from now on 0.5mg -no matter how long he gives you 😊

[AshPen9 in reply to DorsetLady]

😁 👍

[piglette]

You could up your pred dose for a short time and see if things improve. If they don’t it probably is not the PMR causing the problem. I was watching a medical program on TV this week and they were saying that apart from vitamin D other supplements are a waste of money unless specifically subscribed. They also said that they don’t work as well as eating a good diet.

[AshPen9 in reply to piglette]

Thanks for responding piglette, will definitely up the dose if the bloods show an increase and will then see what happens. Rheumy has said that I can go back to 5mg if I need to. Just wish I could find a way to get rid of this crunching! I've realised that I'm subconsciously avoiding moving my arm fully, no doubt because of the horrible noise/sensation in my shoulder every time I do!

[piglette in reply to AshPen9]

The bloods are not necessarily the be all and end all, it is how you actually feel that is important.

If you are anything like me the crunching is there for life. In fact other people can hear it! I also get the most awful noise from my knees as well as my neck!

[AshPen9 in reply to piglette]

Another issue to add to the list! I used to have really crunchy knees about thirty years ago, but fish oil sorted that out. Not so lucky this time. I never thought about other people hearing it! Take care 😊

[piglette in reply to AshPen9]

Quite embarrassing really!!

[DorsetLady PMRGCAuk volunteer in reply to AshPen9]

Have a look at this -

health.clevelandclinic.org/...

[AshPen9 in reply to DorsetLady]

Thanks very much DL that's really helpful 😊

[Viveka in reply to AshPen9]

Not moving the arm fully can lead to problems. I shut mine down to protect a torn tendon - not frozen, just major muscles tightened up. A physio has been gradually releasing them and this has helped the tendon heal. It's gone from pain to niggle in a slow process. Best keep an eye on it.

[AshPen9 in reply to Viveka]

Point taken thanks Viveka, will try to keep it mobile! It's just the horrible noise and sensation that somehow makes you think that it's doing some damage. Glad that yours is improving albeit slowly. Take care 😊

[Viveka in reply to AshPen9]

Very unpleasant. Have you had/could you get XRay or MRI to be clearer about what you're dealing with?

[AshPen9 in reply to Viveka]

Not as yet but if ESR hasn't gone up then I will definitely ask the doc what can be done.

[Pippah45]

That's a coincidence AshPen9 or is it! I have just started 4.75 pred this week or so and noticed my neck crackling quite alarmingly. However reading Dorset Lady's great link I think Wimbledon could be part of the blame too! I have been much more inactive indulging my love of tennis! These programmes that Diss supplements annoy me! I take several for joint pain and notice a great and swift return to pain without them. MSM makes the most difference to me very quickly after running out. I know we are all different of course and I do agree that Vitamin D is hugely important.

[AshPen9 in reply to Pippah45]

I'm just as guilty as you with Wimbledon but my crackling started before that! Are you taking MSM now? Well done on the 1/4 mg drop by the way, I should probably have done that.

[Seekingasolution in reply to Pippah45]

good heavens ! I’d never heard of MSM although I do take glucosamine.. but the list of potential benefits sounds miraculous! Includes wrinkles, gum disease, lung function. I’ll be off to Boots today ! The only joints of mine that make a noise when I bend down are hips. Sounds like a couple of billiard balls knocking together and makes me wince frankly ! Probably wear and tear. I am also stuck at around 11/2 to 2 mg of pred. Although I am mostly pain free and happy, I was thinking yesterday as I walked the dog up and down the path in the local woods - slight incline - that my muscles complain as though I’m climbing something very steep. It reminded me of the feeling I used to get after climbing a mountain- something I didn’t do that often tbh but the following days I recall everything hurt a bit to move. Then it would wear off. Now I have that feeling pretty much permanently.

[DorsetLady PMRGCAuk volunteer in reply to Seekingasolution]

This from versusarthritis shows results of small trial on MSM -and shows that glucosamine & MSM taken together give best results.

versusarthritis.org/about-a....

[Pippah45 in reply to DorsetLady]

I do take a Glucosamine and Chondroitin supplement as well so that is interesting thank you.

[DorsetLady PMRGCAuk volunteer in reply to Pippah45]

Sometimes I take a mixture. Sometimes just glucosamine on its own -depends what’s on offer!

[Seekingasolution in reply to DorsetLady]

that’s very useful thank you.

[Mayadill in reply to DorsetLady]

Read the labels! Clicked on 4 at Amazon. One 450 mg MSM, one 500 mg, one didn't say, one 100 mg.

Evidence suggests that MSM is well tolerated as a short-term treatment, even with high doses. A daily dose of 1,500 mg per day for up to three months was used in one RCT in participants with osteoarthritis, but doses up to 2,600 mg per day have been used in non-RCT studies.

[DorsetLady PMRGCAuk volunteer in reply to Mayadill]

I do read the labels!

[Mayadill in reply to DorsetLady]

Obviously meant folks generally. It does sometimes get a bit complicated replying to a specific point!

[Pippah45]

My neck has caused problems for years and I have an inoperable meningioma there but these last few days the crackles are noticeably worse. Absolutely yes MSM it's over a year since I ran out and suffered. So I keep stocked up. I had great trouble reducing from 7 pred until I went down by 2.5 so have stuck with a quarter since then. Its a bit of a bit of a faff but it works for me. :))

[AshPen9 in reply to Pippah45]

Might give the MSM a go 😊

[Pippah45 in reply to AshPen9]

Nothing ventured as they say It certainly worked for me and took me a while to realise why I had gone downhill after running out. I do try out things if they make sense and MSM was suggested by a very knowledgeable person.

[Raewynne]

I have had a lot of trouble reducing from 5mg.Several months.I got 4.5 .lots of issues. Backto 5 eventually 4.5 again.Now I am alternating 4.5 one day.4 the next.See how I go.Makes me soo tired.i have a sore neck too .More old arthritic trouble showing itself.Vision very blurryCould be cataracts. I do have glaucoma as well.I know things will settle down .It's just a slow process. As others have said...It's not a race Have you tried rubbing some tiger balm or voltaren cream on your neck.Good luck.

[AshPen9]

Thanks Raewynne. I don't think I can use Voltarol due to contraindications. Am currently giving the Flexiseq a go as suggested by DL. Will move on to tiger balm if not! I think mine will be a bit of arthritis and a bit of dropping too low. I don't have PMR, I have Spondyloarthropathy. Rheumy says I might be on Pred for life, so it may be just a case of getting as low as I can. If this drop from 5mg to 4mg doesn't work I'll go back to 5 for a while and then try 4.75 or 4.5. Its annoying though when you've spent months trying isn't it? Good that you eventually made it to 4.5mg, and good luck with the Drop to 4mg. Keep an eye on that blurry vision! Take care 😊

[Gimme]

I have awful creaky neck joints too that have re-emerged as I tapered. Curiously, the re-emergence coincides with the reduction to 5 mg too. The neck thing started when I got flu in January, my trapezoid muscles and my neck became so stiff that I couldn't turn my head. All that vanished in a couple of hours when I went on 15mg pred. Now it is back. My neck makes a horrible noise. It reminds me of a ratchet.

[AshPen9 in reply to Gimme]

Just read your bio by the way, love the story about your username!

[AshPen9]

Thanks for telling me that Gimme. I'm really sorry that you've got the horrible crunchy neck, but its helpful to me to know that it seems to be something that Pred controls. I have Spondyloarthropathy, but like PMR it's an autoimmune condition and involves aches and pains and fatigue. Since the first few months, when most parts of my body hurt, the main areas of pain (when not on enough Pred) have been neck and shoulders. Somehow I have been telling myself that whilst the stiffness and pain would go if I upped the pred (even if it was plain old OA and not my AI condition), this new crunchiness wouldn't. But maybe it will! So I think I'll get my bloods done first. My ESR definitely changes along with my symptoms, so it should tell me if I've gone a bit too low. The crunchiness knocks me sick to be honest, ratchet is a good description! Like everyone, I really want to reduce my Pred, but I know that if I don't have enough then I'll eventually have a proper flare (as per PMRpro's bucket!), even if I can live with the symptoms at the moment. I don't want to go there because it takes so long to get things back under control. Good luck with your tapering. I love this forum, you do feel as if there's always someone out there 😊

[ab58sf]

I also have the creaky joints and have not been able to find a solution. It is not pain, but every movement causes the creaky sounds. No one has addressed a possible cause.

[AshPen9 in reply to ab58sf]

I'll let you know if I find a solution that doesn't involve more Pred!

[ab58sf in reply to AshPen9]

Yes, thank you!