After 9 months of Pred...

[Joseph14612]

OK... The chiropractor found something in my neck... not sure what, but he "cracked" my neck (adjusted) for lack of a better word...but the headache instantly went away...I go every week to see him...he wants me off pred too...anyway, I am at 20 mg now for 8 days...rheumy wanted me at 17.5 by now, but headache continues and they will work with me... tolerable, but bothersome still...heat helps, also worse in the morning depending on how I sleep... pain seems to originate from the neck then the headache....I am staying on 20 mg until it clears up, or will have to go back up if it doesn't. Looking for a better pillow for sleep for now...

Diagnosed in April or March 2022....PMR, then GCA...started at 10 mg pred., then 60 when they suspected GCA....biopsy was a few weeks after pred started and so was negative...in USA

Also on Actemra (#12 tomorrow) weekly epi pen, and Repatha monthly injection for high cholesterol from Actemra....also a new med for high sugar from pred., I am on a veggie diet for months now, and lost 40 pounds...

[SnazzyD]

Hello, it seems like a complicated picture. If the neck issue can be clicked into a big improvement, I’m not sure if keeping at 20mg is the right treatment for it. Especially if it goes on for weeks. When on Pred after a few months, muscle weakness can occur and any postural imbalance, bad mistress/pillow can play havoc. Have they told you about self help with ensuring your sternokleidomastoid muscles are in good shape? I had issues with these muscles in the neck and found there is a long list of symptoms which can mimic GCA that can occur, especially headaches. If this is the problem, you could end up chasing the pot of gold at the end of the rainbow, being fixed every week but relapsing because the neck muscles have suffered abuse in the meantime. It could be costly and well as ending up for a long time on higher dose Pred than you need to. Have they explained the mechanism to you and what their treatment is doing? I asked my osteopath exactly what they are working on and why. Have a read of this to see if it chimes with your problem.

healthline.com/health/stern...

My early GCA symptoms started with a dicky neck with morning headaches that cleared quickly on getting up for the day. No amount of massages, changes of pillow or osteopaths made any difference.

Are they still treating you as if you do have GCA? Doctors often do because negative biopsies aren’t fool proof. Is that why you are on Actemra?

Regards diet, Pred hammers your protein metabolism so with a vegetarian diet you need to really make an effort to get enough. Also, if you eat a lot of legumes as a result so be mindful of lectins which block absorption of certain nutrients that Pred leaches as well. Be aware of oxalates too. Have a read of this if you’re interested.

hsph.harvard.edu/nutritions...

[Joseph14612 in reply to SnazzyD]

Thank you SD...very interesting, as many of these symptoms apply to me...never heard of this before....and yes, I am being treated as PMR and GCA....should I bring this up with Rheumy? Or another specialist?....Last year I had the stiff neck and shoulders, and nothing helped...tried therapy until they saw inflammation in blood work, then put me on 20 mg pred., and it all cleared up....then they suspected GCA and bumped me up to 60 mg pred....that was last June...

[SnazzyD in reply to Joseph14612]

You could do, though the various Rheumatology doctors I saw didn’t seem to have a clue. It was as if that was the preserve of physios etc, which I thought rather bizarre. It’s worth mentioning it to the chiropractor to see what they say, checking to see if you are an offender where the SKM muscles are concerned and try the stretches to see if there is any improvement over time. Might help with the detective work. As to what you do with your dose, that’s up to your doctor really. It’s worth looking at the SKM before you muddy they were water with a Pred reduction and get withdrawal symptoms or possible flare. You might then have no idea what’s what for a couple of weeks.

[Joseph14612 in reply to SnazzyD]

For starters I just ordered a soft neck brace for sleeping because that is when i get the most pain in the morning....I sent a message to the GP as well and see what she says....I see the chiro every week so will bring it up to him too....thanks again for the info, very helpful...if I don't have PMR or GCA, I just went through a year of hell for nothing....your right about the detective work too....I can't imagine where I would be without the help of the people here on this site...thank you.

[Joseph14612 in reply to SnazzyD]

This is Tuesday, yesterday I had headache all day and thinking of upping prednisone. But last night for sleep, I used a neck brace....this morning for the first time in 2 weeks, no headache! Feel rested too. Now I'm not sure what to do.

[Missus835]

I went through so many pillows, only to find out it was not the pillows, but the PMR. Best pillow so far is a travel neck pillow which keeps your head from bobbling and your chin from dropping. I use it atop a very thin, old ergonomic pillow (the kind with the dip in it), as I find the travel pillow not quite thick enough. After all kinds of pillows, I ended up going back to the travel pillow (not too firm or soft).

[MiloCollie]

pillows??… I bought a mattress before I knew PMR was “ripping my muscles off my bones” -my analogy at diagnosis. 😂

[Joseph14612 in reply to MiloCollie]

I am still on 20 mg prednisone which should be enough to handle pmr. But I understand...when I was first diagnosed they had me go to therapy for a month, and I tried many different pillows LOL

[LIVEORDIEHEREIAM]

Joseph14612, I have GCA & PMR and have had times when I got the exact same progression of pain you describe and finally found that if I went around with a light hoody over my head, it was much less troublesome. Keeping my neck and head just a little warmer did the trick and it has stayed away up until this week, so I'm wearing the hoody now! Nothing else seemed to be all that helpful.

Hope you get good results! Wayne

[Joseph14612 in reply to LIVEORDIEHEREIAM]

thank you for your suggestion, the headache and neck pain gets better as the day goes on .. worse in bed and morning. Just in the dark about whether this is gca or something wrong in neck as Snazzy pointed out. But if it’s gca, I worry that 20 mg isn’t enough to overcome it. I suppose I can bump back up to 30 but will hold off until a few more days. I’m seeing GP on Monday the 27th to check neck and get advice from her too.

[HeronNS]

Have to say, enticing as the thought that the chiropractor wants you off pred may be, I'd be leery of attempting. That isn't their province. I'm glad you are having good results but my view of chiropractic is coloured by my childhood memory. My physician father would mention patients of his with back problems who would go to a chiropractor, only to return to him later much worse off. I'd never let a chiropractor near my neck.

[Joseph14612 in reply to HeronNS]

I like my chiropractor, been seeing him for years and has been very helpful. He knows how destructive prednisone is and is just concerned. He knows I have to wean slowly.

[HeronNS in reply to Joseph14612]

If you have been having good experience that's excellent. i just always feel the need to speak up about chiropractic. I like my physiotherapist and physiotherapy is more about teaching people how to manage themselves. I've been going to my physiotherapist a lot more often than normally I would have before PMR, but it's been for a range of issues which are not always PMR, sometimes related to osteoarthritis, and for all of them I've received exercises I do myself which help me get and stay better. I may finally be well enough to stop even the now about every six week sessions. 🤞

[Karenjaninaz]

A couple of thoughts: a chiropractor is NOT the same as an osteopath. An osteopath learns the same curriculum as a regular MD but focus is on muscular skeletal and total body wellness. My rheumatologist is a DO and I am very pleased with his care.

Regarding chiro neck maneuvering: there are small vertebral arteries which pass through foramena ( “holes”) in the neck vertebrae to the brain. If a person has any arterial fat deposits(plaque), along those arteries, those can be released into the brain and cause a stroke with neck “cracking”. I’ve seen, in my work, a patient who could no longer swallow after such a maneuver. She required a feeding tube.

My daughter in law’s father got a headache and dizziness after chiropractic neck maneuvers. I recently read, in Canada, chiropractic neck maneuvers in children are prohibited after a child became paralyzed.

( Retired anesthetist here)

[Joseph14612 in reply to Karenjaninaz]

Thank you for the info...will definitely take this into consideration...

[SnazzyD in reply to Karenjaninaz]

I’ve been through a few Osteopaths in my time and two Chiros years ago. My rule of thumb now with any of them is any sniff of an ego, run a mile, especially if they speak in tones of being the only one to save the day and slagging off the input any other professionals’ of any sort. My osteopath never clicks my neck but uses other techniques. The two Chiropractors (a tiny tiny sample of the whole!) we’re quite heavy handed nuts and bolts oriented.

[Alchemy8 in reply to Karenjaninaz]

That happened to a friend of mine. She had a serious stroke with a neck crack and took a long time to recover.

[PMRpro Ambassador in reply to Alchemy8]

Do you remember the fuss about back-washes at the hairdressers? Even they can cause a stroke in some people if the neck is overstretched.

[Rachmaninov2 in reply to PMRpro]

Those basins were so uncomfortable!

[Alchemy8 in reply to PMRpro]

My hairdresser has one of those basins. I thought they were pretty standard still.

[PMRpro Ambassador in reply to Alchemy8]

They are - it is how they are used that is key, no stretching your neck backwards over the lip.

[Alchemy8 in reply to PMRpro]

I shall make mention of it the next time I see my hairdresser!!