PMR sudden horrific pain

[Ke115000]

I have been diagnosed with PMR on Dec. 14th after the horrific pain others have described here. Shoulders, hips, knees, buttocks - to the point I could barely get out of bed or move with out considerable pain. Finally saw my dr. who ran all the tests (bloodwork, Xrays) and listened to my symptoms. My markers came back high 83 on the CRP - so put on prednisone (15 mg.) that day. In two days, my pain was reduced by 70% and continued until I met with my Rheumatologist, who increased me to 20 mgs. Yesterday (2/2/23), I met with the Rheumy again, and my CRP had dropped to 16 in January, and was 3.5 yesterday. He suggested we start a very slow taper (17.5 mgs for 2 weeks and then and then reduce another 2.5 mgs in two weeks).

I had a nice day yesterday (have had some minor pain after starting the pred), but today woke up with excruciating pain in my thumbs, wrists, shoulders, thighs, buttocks - to the point that I cannot get up from a chair or move without "scream out loud" pain. My husband is helping........but what is this? I am barely into the treatment, and I don't know why this is here. I texted my dr. to see if he wants me to reduce or stay at 20 mgs. longer. The only thing I have done is quite Celebrex (was prescribed to me before the PMR diagnosis and the knee dr. who hoped it would help). But I have acid reflux and I am taking Lansoprazole to keep that at bay...........and dr. felt I did not need it. I am almost ready to take it! Sorry for the length of this, but hoping someone can tell me what is happening while I wait for my dr. to call/text with "what to do".

Amazing website and information............

[SnazzyD]

So are you still on 20mg or did you have a try at reducing?

That doesn’t sound like a “very slow” at all to me. A rule of thumb is no more than 10% of the dose you are reducing from. 2.5mg is 12.5% of 20mg, so from 17.5mg is about 14%. Although that doesn’t sound like much above 10%, it can make all the difference. The experts will be along soon.

[Ke115000 in reply to SnazzyD]

Well, maybe I did this to myself trying to do some form of movement (too much) and I am assuming my dr. will suggest not reducing the pred yet (later today when he looks at his messages). Thank you. I will run this by him........I don't underestand how a drop to 3.5 on CRP (recent blood test) could land me in this pain. I am beginning to think there is some correlation to how I feel, but clearly not to everything.

[DorsetLady PMRGCAuk volunteer in reply to Ke115000]

Re blood markers and pain…the blood markers very often lag behind the symptoms - something many patients [at the beginning] nor some doctors fail to appreciate.

[Hidden in reply to DorsetLady]

What Dorset Lady says is very true. CRP is often way behind what the patient is suffering at the time. In my case I've had low pain marker results and I've been in agony. Ive had high pain markers and been feeling fine. My advice is to taper off in very slow, disciplined manner and do that taper based on how you feel & not on the test results. I'm down from 50mg in Aug 21 to one mg today. Be patient, listen to yourself.

[Ke115000 in reply to Hidden]

Many thanks!!

[Missus835 in reply to SnazzyD]

I've only been at this since mid Aug. 2021 and not diagnosed until Jan. 2022. Went through the excrutiating part all that prior fall, not knowing what it was. Started the Pred. in Jan 2022 and had immediate relief, where prior had been completely incapacitated. However, the Neurologist I worked with understood about the slow taper. This taper didn't even begin until May 2022 when I finally got a Rheumie. She is the "let's get to 0 as fast as we can". So I had a flare...and another which left me between 11 and 14 mg. where I've been until recently, when my CRP went up very quickly and I am now getting tests for GCA and on 60 mg. Pred.

Take the lansoprazole to protect your stomach from the Prednisone. If you feel really good on a particular day...do not overdo it as you will pay the next few days. Listen to your body. In your journey you will find that most (not all) GP's know little about PMR/GCA. Rheumatlogists want to "wean, wean, wean". Prednisone has many side effects (one of them being sudden bursts of energy in the beginning, I managed to de-clutter my whole apartment), but the good far outways them. It's a roller coaster ride for sure. This forum has been my saving grace. Stick with us and never be afraid to ask any question at all. I'm so very sorry you're going through this, I wish I could say it will get back to "normal", but it will level off. Hugs my friend.

[SnazzyD in reply to Missus835]

Did you mean to reply to me?

[Missus835 in reply to SnazzyD]

So sorry. No. Ke115000.

[DorsetLady PMRGCAuk volunteer in reply to Missus835]

original poster will see it anyway….so don’t worry.

[Ke115000 in reply to Missus835]

Just wanted to report that I woke up with minimal pain today after a day that hit me so hard I was literally incapacitated. And yes, I think my Rheumy wanted to reduce to quickly, I woke up in severe pain and took only the 17.5 mgs., but after reading all this forum wrote to me, I took the other 2.5 mgs. in one hour, followed by Celebrex, and waited. It took nearly 6 hours for most of the pain to dissipate. And it did. What is confusing to me, is that I woke up in that kind of pain before I even took my prednisone. It's almost like my body knew I was going to reduce the dosage!! I know that is ridiculous but it felt that way. I thought maybe I had a good Internist (who diagnosed the disease after tests came back) followed by a good Rheumy, but I am seeing just like in the UK, they really must want more exotic diseases to treat OR they just want to lower the pred quickly to remove the havoc it can play. Thank God you all pulled me out of my hell. Bless each and everyone of you and I hope I can return the favor once I learn more about this disease. I purchased Kate Gilbert's book and it is enlightening but the Forum is even better. I will have a talk with my Rheumy on Monday see what he says. I am pre-diabetic and take Metformin and will continue to try to keep my blood sugars at bay. That said, the only thing that happened the day prior to this flareup was that I did eat more natural sugar items - tomato soup, yogurt and a pear, and the rest was very healthy. I just don't know what caused the flare, but I sure want to avoid another one. Days of torture are not on any of our wish lists............how I long to plan a trip to Italy. But I don't see that.

[PMRpro Ambassador in reply to Ke115000]

But you had not taken the Celebrex the day before - which suggests that played a big role and makes me think this is more than "just" PMR.

[Ke115000 in reply to PMRpro]

I agree......not sure whether to play around with stopping the Celebrex or taking it until Monday. Thinking I will take it, but wondering what else is going on? There are so many other auto-immune diseases and they did rule out RA quickly with one of the first tests. Beyond that, I dont' know. I think I better take the Celebrex until Monday and see if new tests need to be run, don't you think?

[PMRpro Ambassador in reply to Ke115000]

They can't rule out RA with a single test - there is a form called sero-negative and that means nothing appears in the bloods. It - and other forms of inflammatory arthritis - can also present looking just like PMR. Mean - but there it is. But I think that you appear to need a combination of steroids and Celebrex is significant.

[Ke115000 in reply to PMRpro]

Definitely want more tests..........and maybe to have another sit down with my Rheumy. He really kind and smart and I think he will agree we need to dig deeper! No wonder you are called the PMRpro!

[Hidden in reply to PMRpro]

What is Celebrex ?

[PMRpro Ambassador in reply to Hidden]

"Celecoxib, sold under the brand name Celebrex among others, is a COX-2 inhibitor and nonsteroidal anti-inflammatory drug. It is used to treat the pain and inflammation in osteoarthritis, acute pain in adults, rheumatoid arthritis, ankylosing spondylitis, painful menstruation, and juvenile rheumatoid arthritis."

It is another NSAID like ibuprofen pr Naproxen

[Hidden in reply to PMRpro]

Thanks for reply. Not a good drug I've been told for the elderly....Ibuprofen can cause strokes. I was prescribed a drug called Etoricoxib 90mg for arthritis, so obviously the same. Given that 31/08/2022. Never took it after reading the leaflet.

[Seacat30 in reply to Ke115000]

Just a side comment but I do seem to have developed a problem with tomatoes since PMR or prednisolone (no idea which). A delightful bowl of tomato soup now gives me urinary and digestive pain. I think it might be all nightshade plants and definitely anything spicy. Just tried it again this week and still no good. Not sure whether it causes muscle pain but will think about it.

[Ke115000 in reply to Seacat30]

I hope it isn't going to be that, as I already have stopped so much of the foods we love, and tomatoes (without seeds and peel) are "supposed" to be ok, but maybe not.........

[Seacat30 in reply to Ke115000]

Tomato soup was my favourite food as a child and I have slopped ketchup over things all my life. I spent 3 years in Leicester the UK home of the curry and ate spicy food every day. I cannot believe this has happened to me.

[Missus835 in reply to Seacat30]

Me too with tomato soup, which I love, but the last bowl put me thru the wringer with pains and even diarrhea. Le sigh.

[Seacat30 in reply to Missus835]

😔 It is so delicious 😋

[Rachmaninov2 in reply to Missus835]

And me, can’t have it now because of kidney problems and heartburn. I have a tin in the cupboard and it’s very tempting to take chance, but is it worth it. I know the answer to that!

[PMRpro Ambassador in reply to Rachmaninov2]

I have 2 tins in the cupboard - it used to be OH's comfort food. It is only in one shop here (tinned soup isn't a thing) so I never bought just one can. Then he decided soup had to be the proper, freshly homemade variety! As part of a 3 course meal - never done that in 50 years together either!

[Rachmaninov2 in reply to PMRpro]

I hope you’ll be able to enjoy those tins of soup.

Homemade can be great but I think tinned is good too (especially the one beginning with H).

I can’t say that I blame you. Does anyone have 3 course meals anymore. Not me, all I can manage to prepare now is one course. I’ve considered subscribing for a delivery of prepared meals but I’m not ready to give in yet!

[PMRpro Ambassador in reply to Rachmaninov2]

Oh no - detest it with a passion! Oh - I'd give in but such things don't exist here.

Himself had never eaten 3-course meals, hence I'd never bothered. But in hospital here lunch is a proper 3 course meal, so's the evening meal but dessert is just a piece of fruit ar yog. The food in the palliative unit was very good, they gave him dexamethasone and he ate everything put in front of him and decided he wanted to continue when he came home. So I obliged but it was rather hard work!

[Rachmaninov2 in reply to PMRpro]

Homemade has got to be better, you know exactly what has gone into the meal, no additives that you don’t want.

Excellent that your husband was able to enjoy his meals in the palliative unit and understandable he wanted to continue with the three courses at home. I can well imagine the hard work involved in producing those meals but only natural that you would want to anyway.

Speaking from personal experience I know that we find extra reserves at such times.

[PMRpro Ambassador in reply to Rachmaninov2]

It was was the sort of thing Waitrose or S'burys would have helped with but nothing of the like here. Get good desserts mind you! And excellent tomato sauce for pasta which is easy enough to boil up. I managed.

[Rachmaninov2 in reply to PMRpro]

I’m very partial to pasta, and could easily eat it twice a week. Not good for me though so I have to limit myself. 🍝☹️

[PMRpro Ambassador in reply to Rachmaninov2]

Eaten daily here!!!! Not by me though!

[Rachmaninov2 in reply to PMRpro]

Yes of course. 🍝🍝🍝🍝🍝🍝🍝

[Skysey in reply to Seacat30]

I love tomato soup and I used to eat fresh tomatoes but since reading that they may cause an increase in inflammation in your body, I have stopped eating them. 🙁🍅🥫

[Ke115000 in reply to Skysey]

Me too - love it. Seeing a nutritionist tomorrow to find out what I can eat. With pre-diabetes and PMR, not much left. I am hoping to be enlightened but afraid tomato soup and even marinara will be on the hit list.

[Missus835 in reply to Ke115000]

Good on you with taking the extra couple of mgs. Prednisone and Celebrex seem to be your go to for the next few days and I'm so glad the pain was alleviated. Keep track of the days and times and dosages you take so you can let the Rheumie know. Italy? Who knows, maybe the combo will make you fit to travel?

[Ke115000 in reply to Missus835]

Keeping track! Will let all know what the plan is. But for now onward……and lots of Netfix.

[PMRpro Ambassador]

Sorry. not quite clear - did you take less yesterday? Or did you just stop the Celebrex? That MIGHT suggest it isn't "just" PMR as NSAIDs don't usually do anything for PMR pain. Did you do anything different/more yesterday?

[Ke115000 in reply to PMRpro]

I only reduced this morning (was at 20 mgs since early January). I quite Celebrex (200 mg. in morning and evening) two days ago. I do have alot of osteoarthritis from past injuries/surgeries, but before PMR, I was walking 3-5 miles every other day.......all that has stopped of course. I was going for Physical therapy twice a week and trying to go to a gym to ride the recumbent bicycle twice a week and very light weights there). My doctors told me I needed to keep that up for my muscles......I just popped a Celebrex to see if it helps because this is not something I can stand.

[PMRpro Ambassador in reply to Ke115000]

Reading DL's comment - I wouldn't be surprised if the gym has caught up with you! Yes. go back to the gym, but you will need to start from scratch, building up from 1x weekly and beginners weights. PMR does a number on muscles and pred is a bit unkind to all soft tissues so you develop DOMS (delayed onset muscle soreness) with a very small amount of exercise. Frustrating but that's the way it is.

[SnazzyD in reply to Ke115000]

I didn’t have PMR, ‘just’ GCA. I convinced myself that I had PMR many times because of muscle pain after doing what I considered to be very below average activity for me and that was just the Pred. Also PMR makes your muscles very prone to strain and what’s more, it can be delayed. So I would go in the garden and do half an hour of light weeding, feel smug the next day because I wasn’t in pain but a couple of days later I couldn’t move and felt uncomfortable for a week. 20mg is not an insignificant dose and you have PMR so you really do have to lower the bar. Doctors do say you need to exercise and they are right but there seems to be a general ignorance about intolerance to exercise and the need to build up from a very easy place.

[Ke115000 in reply to SnazzyD]

I do believe my exercise caught up with me............thought I had it licked, but guess PMR has me licked. I will back down and start again - slowly. Goodness, even gardening or playing with my dog - fetch - may be too much. So hard to figure it all out. Thank you!

[HeronNS in reply to Ke115000]

One of pred's unfortunate side effects is it can weaken the muscles and make them more prone to injury. It's important to maintain fitness to the level we can, so exercise, but nowhere near what you were used to. Over time I've found doing my physio exercises once a day (instead of twice) has actually turned out to be helpful as I think both aging and pred have made the healing-from-exercise process slow down. I do walk every day, especially now that I have a treadmill which allows me to walk even when the weather is uncooperative. Today it was in the minus 20s (celsius) with a windchill for a time about minus 37. Not sticking my head out the door today, but I got 7000 steps (in two segments) on the treadmill. I also do tai chi daily for about 20 minutes and find this has helped maintain flexibility as well as improving my coordination and sense of balance. I appreciate for people who have always been athletic this may not seem like much but it's been good for me.

Incidentally, celebrex, like all nsaids, interferes with cartilage renewal so in the long run it really isn't good for osteoarthritis, if taken more than sporadically.

[DorsetLady PMRGCAuk volunteer]

Hi and welcome,

Looking at your profile/bio - you say -But back to gym 3x week for weights and bicycling.

That may be where you trouble lies, particularly the weights…PMR affected muscle do not like repetitive movement…and 3 times a week is not giving them time to recover between your gym sessions.

As you see from link- it’s not just a case of taking the tablets and everything can return to normal - you have a systemic chronic illness and it needs treating gently especially early days..You can and will return to exercising - but it needs to be done very slowly and gently building up - not bang straight into what you did pre PMR.

healthunlocked.com/pmrgcauk...

[Ke115000]

Thank you, but why would the pain kick in 5 days after the last exercise I had? Is that just the way it goes? Not going to the gym again, even though it lifted my spirits immensely when I did. So much to deal with..........but all of you are amazing!

[DorsetLady PMRGCAuk volunteer in reply to Ke115000]

Although you felt okay before, if the dose is too low, even by a little it can take time for the inflammation to build back up - so it might take a few days or even weeks before you feel the pain and realise all it not as it should be.

[PMRpro Ambassador in reply to Ke115000]

Don't not go - but modify what you do at the start. It's a bit like I was at the start of each ski season - if I had started out with 3 times a week or even tried a full morning I'd have felt like you do. I started with one expedition the first week and 3 short runs, 2 the second week and 3 the third. By after xmas I was up there 3x a week, though preferably not on consecutive days and by February it didn't matter when and I could ski all morning though not long runs, i still needed the rest on the lift! The sun and the snow were better up top ...

[Seacat30]

I am wondering what you did on the 'nice day yesterday' and the two previous days? If it was active I might suspect that to be the cause.

[Ke115000]

Grocery shopped (very light and cooked dinner); no exercise, but went to the dr. and drove on icy roads.......no more stress than usual. Day before almost the same........I am not doing very much I feel.

[Seacat30 in reply to Ke115000]

I have had a risky day. Walked down the pier, did the exercises my physio set, cleaned the toilet and then wrestled with restuffing a Remy Pod which got out of control (couldn't get cover back on solo and loose beans all over floor). I expect severe punishment for several days. It doesn't take much!

[PMRpro Ambassador in reply to Seacat30]

Any one of those would have been enough for me!!

[Seacat30 in reply to PMRpro]

My struggle with the big squishy amorphous beanbag was quite horrific!

[PMRpro Ambassador in reply to Seacat30]

Changing a single duvet cover finishes me off!

[Seacat30 in reply to PMRpro]

Oh don't even mention that

[PMRpro Ambassador in reply to Seacat30]

That's a job for the cleaner!

[Ke115000]

Will take it easy today......just took my half pill (on my own advice) back up to 20 mgs. and the Celebrex..........I am starting to feel relief..........not sure what is going on, but clearly I wasn't ready to reduce! Thank you all for help. And BTW, husband had to pull my pants up and make my bed. But thumbs are better as is neck....no relief from legs yet, but I think it is coming. Thank you each and everyone!

[Missus835 in reply to Ke115000]

Yes. My daughter had to help me with my clothing when she was here. I could not reach back to pull pants on or pull clothing up. My hand was "claw like" and I had to use a type of carpal tunnel support so I could manoeuvre the computer mouse. I had to get a riser for my toilet seat as I couldn't get up from it, nor would my arm let me reach around for the grand finale. After awhile, I was finally able to grip things, but still drop so much on the floor and ask the Universe if this their "jokes". However, they could be encouraging me to actually bend and stretch. As our learned friends have said, muscle soreness is often delayed. At present, I have what seems to be a herniated disc (again, but not since 2017) in addition to all the other junk. Booked for an x-ray for that and waiting in Nova Scotia for a CTScan (probably months). My Rheumie may finally get in touch Monday with biopsy results (after 2 weeks).Trying to work only 1/2 shifts at the moment. So movement is very limited and having to take Ibuprofen for the back /hip/leg pain; which messes up the stomach even more. Prednisone does not touch the back pain. The g-g-g-gym is not in my vocabulary at this time, but I was walking 4-5 km prior to PMR. Movement is key, but also is rest. Your body is going through many changes at this time and PMR is not "just PMR".

[piglette]

Personally I always allow four weeks for each reduction. You need that to ensure that everything is OK in my opinion.

[Ke115000]

Dr. finally came back and said stay at 20 mgs for the weekend and call him Monday. Feeling significantly better with just the 2.5 that put me back to 20 mgs. But what a setback. I can see I cannot predict when or what caused it, so I will have to pay a lot of attention to what I do every day to see if I maybe added a trigger. I do NOT want another morning like this - you all have been there, but I had hoped the original pain would never come back as it did in the beginning when I finally was diagnosed. Going to rest now!

[DorsetLady PMRGCAuk volunteer in reply to Ke115000]

Just look on it as a blip, and a lesson learnt… the original pain should not/will not come back if you taper/are allowed to taper sensibly - but don’t try and run before you can walk…

and do please ready my link…it was designed to help iron out the blips —- if you know what I mean 🤔 😂🤣

[cranberryt]

Reductions should be no sooner than every 4 weeks and only if you are not currently in pain. A slow reduction is definitely not 2 weeks. And, I have to ask… you said you were 70% better initially. Did you ever get to 100% better? If not, you shouldn’t be reducing at all yet. Also just a warning that most of us have to fight the rheumys along the way who do not truly understand this disease or the best way to manage it so the pain and flares do not occur. They relentlessly push to get off prednisone depsite returning symptoms. So just be prepared to fight back if they do. This is definitely a condition where you have to fight for yourself!

[PMRpro Ambassador in reply to cranberryt]

No - to be fair, some people never do get 100% better, that's just the way it is. Although you are right that the rheumy shouldn't reduce until they try a higher dose first and that didn't work. Then you aim for never being worse at the end of a taper step than you were at the start.

[Gigi1946]

So sorry to hear about your horrible pain. Did you taper off Celebrex? Look up "Celebrex Withdrawal Side Effects."

I feel your pain. Some days I can barely get out of bed with shoulder, arm and hip pain. This is a miserable way to live. As of 6 months ago, I also have moderate to severe skin burning literally head to toe, 24/7. My rheum says my PMR numbers have decreased a lot, and she is fairly certain the burning is long Covid. Arghhhhh!

[Ke115000 in reply to Gigi1946]

Oh no, not Covid too. I cannot imagine. No one warned us of what was to come until it arrived!

[Ke115000 in reply to Gigi1946]

No I decided to take it yesterday and will continue til Monday, when I can ask my Rheumy "what tests can we do to see what else is going on"...........since Celebrex isn't supposed to really help at all. Suspect I am grappling with more than just PMR. But pain has subsided substantially with pre 20 mgs and Celebrex yesterday and today. Blissful peace for now!

[Hosers2]

Question: Are you currently taking any medications for high cholesterol?

[Ke115000]

No, and I have the highest cholesterol I have ever had.......260! My internist wants me to go on stains (I said no, as I know the side effects). I discussed with my Rheumy and he agreed that I should go on them, but rather try to eat better (and I have been) to try to reduce. I am not sure if pred increases your cholesterol? I pray not............I am so tired of the never ending "surprises" hitting me (and all of you before me), but I am guessing this is the way it goes. I do not want to lose anymore muscle than I already lost through the Pandemic, just getting back some of my muscle and ability to workout again, and then PMR struck. My internist also wants me to have a Coronary Heart Cat Scan........not opposed to that because of the cholesterol.........not sure what I will do.

[PMRpro Ambassador in reply to Ke115000]

Pred can increase cholesterol levels - probably an effect on the liver which produces most of the cholesterol in your blood

[Ke115000]

Any more great surprises coming my way? I don't think even 2 doctors are capable (here) of keeping on top of this. I have major conflict from the Internist and the Rheumatologist here in Montana. One says get on statins and have CT of my Coronary Artery and the other says wait and neither are necessary at this time. Thank you PMRpro for insights........