Can Anyone Please Explain this Pain
Posted , 10 users are following.
Hello All, I hope that you are all comfy this evening. I'm writing from Massachusetts and have come here a bit with my confusing questions. I'm back, with more.
Short background: 63 yo woman, with Secondary Progressive MS (since 20's) and diagnosed with PMR and GCA mid June 2019. Rheum #1 put me on 60 mg pred for one week and then went 40 for 2 week, then to 30, when I had temporal headache. Back up to 40 2 weeks. Then to 30 again.
Dropping to 30 was a few days before an appointment with him and I had horrendous bilateral hip, glute, upper thigh, lower back pain. Did not have that level of pain at diagnosis. Went to appointment, he took bloodwork, said "numbers in range," and sent me off. I'd been hawking at him all along about TOO FAST OF A TAPER. He did not listen. A week later I had my bloodwork done by my own decision and my CRP and SED were higher than at diagnosis.
I put myself back to 60 an searched out and found Rheum #2 at one of the big teaching hospitals in Boston. Saw him and he first wanted to relieve some pain so gave me cortisone shots in hips and general meet and greet. I will see him and his Fellow again soon. They are good communicators. I believe I'm with the right doctor now.
About a week or two before I saw Rheum #2 I'd had my first appointment at a pain management center, to get a hold of MS pain that just wouldn't quit.
After seeing Rheum #2 I went back to Pain Center for a test nerve block for lower back pain. Failed test, had no change. Since then, my pain level has gone wild, and all is out of control. I've got level 8 pain in hips (stronger on L than R), Left Glute, both upper thighs, all across lower back. I can barely walk. I've used a walker for years for safety, now I use it because it's the only way I can walk at all. I am presently on 40 mg prednisone for 4 weeks, on Rheum #2's slow taper protocol.
The pain persists and here's what's been done to try to stop the madness: Rheum #2's cortisone to hips did not provide relief for very long. Pain Management Center: 20 mcg Butran patch, 100 mg Tramadol, Epidural Lumbar/Sacral Spinal Injection done 8 days ago has not yet kicked in (my lower back is a mess). I can do NOTHING. A ride in the car is torture. I measure what I can do in how many steps it will take. I take Extra Strength Tylenol, it's a waste of good pills.
On top of this I came up with Laryngitis 12 days ago, finally went to Primary Care and it's likely that all of the prednisone and it's tendency to cause reflux has irritated vocal box. So he doubled my Protonix and told me to not talk or whisper for a week, and if it is still a problem then there will have to be a scope. It's ok, not talking, got no problem texting my hubby across the room.
I've had it. I feel as if I will never be the same again. The pain is at the level where every little effort makes me sweat. I can stand for perhaps 5 minutes at the most. It's obvious today that if I am to go anywhere aside from my house, it will be in a wheelchair. I do not go anywhere, as the pain is just too much to handle.
What is going on??? Thank you in advance for any insights you may have.
0 likes, 19 replies
Silver49 Guest
Posted
I am so sorry to learn of your terrible pain, Angela. I think your own idea of sending what you have posted on here to your Rheumy and possibly other clinicians would be a good idea. Hopefully, they will liaise and work out a solution that will at least ease some of your pain. It sounds unbearable and makes anyone else's pain pale in to insignificance. My best wishes for easing of your pain and symptoms.
Guest Silver49
Posted
Hello Silver and thank you for your care and advice. I never dreamed in a million years that this is where PMR and GCA would put me. But, here I am. And I am a complex case in a terrible state. I have today sent a tidy succinct message to my new Rheumatologist. At this point he's gotta be thinking "Of all the gin joints... she had to walk into mine." 😃
Peace
Silver49 Guest
Posted
I hope you get an urgent appointment with your Rheumy. He needs to action your message so that you get some relief ASAP.
Guest Silver49
Posted
Thank you Silver! I have no doubt whatsoever that I will see him tomorrow, given the precise details I shared His Fellows review weekend messages at 5 am Monday. I will be flagged.
EileenH Guest
Posted
I think your complex situation is beyond anyone here to untangle. Given your reflux problem I don't think any more pred is the answer though, and definitely not without the rheumy's say-so. When people adjust their doses here it is either at very low doses during a reduction or having agreed it with their doctor beforehand. No-one should be playing around with this level of pred.
You could ask the rheumy about the possibility of intramuscular injections of Depot-Medrone - same sort of thing as the joint injections but into a large muscle group which releases slowly over time. I do know of a lady who had to use them to manage GCA because of gastric problems and it was successful. The advantage of them is that all the steroid is available to the body - 100% bioavailability makes a big difference.
Guest EileenH
Posted
Hello Eileen and thank you for checking in. I am a terribly complex case, and each step we take just adds more layers. This morning I woke up with a mouth full of ulcers. I'd guess it's from the doubling of the Protonix, but who knows.
I have noticed that those who are adjusting their dosing are at very low levels, and that I'd get there some day. Huh! Hope so.
I have sent my new Rheumatologist a succinct summary of all of the facts in hand. He will steer me, I am sure. I'll pay attention to any mention of Depot-Medrone and ask about it if it is not raised otherwise. I will not be surprised if they start looking at biologics as being the only way to decrease what must be inflammation.... inflammations = pain. I've known pain over my life time, but none this wicked.
In the meantime, I was climbing walls this morning due to pain so put on 20 mcg Butran patch, the highest dose I've hit so far. Although they take 3 days to take full effect, at lower doses I was able to tell on the first day if good things were going to happen (never happened). Today's increase to 20 mcg has not changed the pain one little bit. With nothing changing the pain, I keep wondering, can one flare when on 40 mg prednisone? My gut says no, but I'm not a normal case.
I would expect to hear from the Rheum tomorrow and will let y'all know where this is headed. I'm working hard to not lose my mind. I'm glad we do not keep "comfort foods" in the house. That'd be a big disaster these days!
EileenH Guest
Posted
If it is GCA you have, yes you can flare on 40mg. Some people need as much as 80 or even 100mg/day as an i.v. burst to get things under control. But there is no way to know at present if that is what is happening - f2f with the doctor required. That is what he is paid for ...
Guest EileenH
Posted
Ohhhhh Eileen, I did not know this, as dumbcluck RHEUM #1 loved to say "GCA is stopped dead in its tracks the moment u start on prednisone." I have no idea why I would hold one little scrap of him in my head.
Given the precise details I today sent to Rheum #2 at MA General, I have no doubt I will see him tomorrow.
THANK YOU!
EileenH Guest
Posted
Oh dear!!! Wonder how many poor patients HE left at risk! I know a lot think that if you have PMR and are on a PMR dose that it can't progress to GCA. I fear they are wrong. I know several people with PMR and on pred who suddenly found they had GCA. It is only stopped if the patient is on enough - and that may be a pretty high dose.
ptolemy Guest
Posted
One of the first questions I asked the rheumie who diagnosed me was the chances of getting GCA. I think he said 30%, but now because I was on steroids it was 0%. Frightening how bad these doctors are!
Guest EileenH
Posted
Good Grief, that doctor is a menace! He had me on 60 mg for a week and then dropped me to 40, then 30. At 30 I had a temporal headache and called in to his office. He was on vacation (thank goodness) and his associate put me back up to 40. Headache gone. The doctor returned from vacation and was really mad that his associate had put me back up to 40 as "the priority is to use as little prednisone as possible, FOLLOW MY INSTRUCTIONS." So glad I got the heck away from him.
Heading into my Boston Rheum in a short while. This pain is relentless and responds to nothing, it's exhausting.
Silver49 Guest
Posted
So glad you have an appointment, Angela. I hope your rheumatologist sorts out as much as they can to ease your pain. Best wishes.
Guest Silver49
Posted
I'm so very new here, I don't even know who to "reply" to. I know I didn't want to reply to myself.
Thank you Silver, it was a relief to get to see him today, which is just a start.
One of his Fellows and then he checked me over and feel that I am in a PMR flair, maybe the one that started in August lingering, maybe not. His scopes and viewers saw nothing unusual in my eyes to indicate a GCA relapse, although he told does want to do a biopsy tomorrow, even though I had one in June. He believes this is lingering because of the poor Prednisone care I got at the beginning, AND because of my long standing MS. He drew blood, adding that it's really just 1 tiny piece of the 100 piece puzzle.
Tomorrow he has us booked at one of the hospital's satellite campuses, for a long consult. He will explain to me the things I do not know and need to know. He will draw out our map going forward. He could not do much for all of this pain, since I have no voice left and raising my prednisone (I'm at 40) could put something over the edge.
I am a mess and cannot walk. The pain is at a 9. I've had many rough years with MS, but right now I'm here to say that PMR is doing me in. With MS pain, I can pop a couple of Tramadol and be clumsy and stupid and useless, but pain free. With where I am in my dance with PMR, I can do a big fat nothing. But that will change soon.
Peace.
peggy_56092 Guest
Posted
I'm sure we are all thinking of you. . . to get better. Keep us informed.
Silver49 Guest
Posted
Don't worry about how the replies work out, Angela, though you seem to be doing well with them. It is often easier to do one reply to all especially when you are in such pain. Everybody understands. Your rheumatologist certainly seems to know what he is doing to try to alleviate your pain though getting it under control seems to be difficult. I hope he comes up with a solution very soon because the pain sounds unbearable. Thinking of you.
EileenH Guest
Posted
There is no point at all doing a biopsy after the dose and time you've been on pred.
But otherwise - he sounds promising!
Guest EileenH
Posted
Yes Eileen that thought crossed by addled brain. All will become clearer today.
Guest
Posted
The final chapter of this chapter.
Had a long visit with the Rheum yesterday. He had lots of time and so was able to do a longer, more detailed examination and discussion.
In the end, he felt that this is not a flair. Why? Because the pain is just too great. This is the kind of pain that makes you sweat if you walk 3 steps. He could see it all.
He has an experienced line drawn in the sand, that if pain gets beyond that line, it's beyond what PMR can do in a flair. I do know that when I was diagnosed, I was confused because my pain was not that bad at all, and I guess that can be the case.
What he does wonder is how much damage was done to the tendons in my pelvic girdle, hips, lower back, prior to diagnosis and during the two flairs I had in the few months before landing with him. So I will be having an MRI on Sunday and then next week EMG's on my left. from lower back down.
With all of this going on, he and I still didn't get going on our GCA education. That will happen.
For now, I gotta figure out what to do with this pain until he steers me to where I belong with all of this pain! I hate to "bug" him, but I need something to get me through this mess. As for my voice, I still have laryngitis, and that's just gonna have to wait. I don't have anything to talk about anyhow, and resting my vocal cords is the best medicine.