Undiagnosed : symptoms for 2 months looking for advice
Posted , 8 users are following.
I am 63 and approx 2 months ago I started to experience symptoms which mimic the same symptoms those of you have been diagnosed with PMR have. This was sudden and a few days after receiving the flu shot. Extreme pain getting out of bed, walking down steps, unable to raise shoulders, buttock and hip pain. I saw a nurse practicioner who did blood work. I had an elevated ESR. She started me on a steroid and symptoms seemed to get better. Symptoms returned so I saw a doctor for my next visit. He did more blood work and put me on a 20 day regimen of prednisone : 40 mg for five days, then 30, then,20, then 10. I did have an elevated CRP rate. After I stopped the 20 day regimen, the symptoms returned so back to the doctor. This time, he orderes xrays of neck, shoukders, back and hips showing so e degeneration in the neck area. He did not say anything about a follow up visit. I think he is calling it muskuloskeletal pain and thinks it will go away. I have scheduled another appointment with another physician who has more experience in this area but cant see him for 3 weeks.
I will be off prednisone for approximately a week before I can see new doctor. Rheumatologists are booked for at least 9 months. if anyone could give me some recommendations on further tests, mri,s scans etc. I would greatly appreciate it. i have never experienced anything like this before. I am usually stiff and in pain for approximately 3 to 4 hours in the am, feel better rest of the day, start to get stiff at night, can't sleep through the night because the pain wakes you up, then it starts all over again. The pain never goes away, just gets tolerable during the day.
0 likes, 16 replies
bob73443 Duffer55
Posted
same thing happened to me about 4 years ago. found this forum. copied some key posts about pmr and took them to my GP. he agreed that I am suffering from pmr and has allowed me to self medicate with prednisone. after almost 4 years I'm down to 1.5 mad. bottom line is to do your homework and then find a gp that will support you. rhumis have been worthless for me. best wishes to you
Duffer55 bob73443
Posted
thanks, i just want to make sure everything else gets checked out too to rule out anything else. i have had blood work and xrays so far.
ptolemy Duffer55
Posted
The normal check for PMR is to take 15mg or 20mg for a few days and if you get a magical improvement it probably is PMR. Have you taken any other painkillers? If so did they work? PMR tends to only respond to steroids. If you have been taking steroids for over two or three weeks you should not just stop, but taper down as otherwise you could get adrenal problems.. The adrenal glands stop working after that time as the steroids are producing cortisol too, so they don't bother. It can be dangerous to just stop and can lead to nasty symptoms. It is very inadvisable and all doctors should be aware of this.
Duffer55 ptolemy
Posted
i was started at 40 mg five days tapering to 30 mg for five days and so on. initially i did take 800 mg of ibuprofren but that was before i went to the doctor. i did take some tylenol 1000mg every 6 hours with the second round of prednisone. i have not taken any painkillers with this third round of prednisone because i wanted to see if it was helping. i was also prescribed flexiril 5 mg but didn' t think it was helping. doctor said i should take 10 mg. in all fairness, i did take 10 mg last night to see if i would sleep better. i will say that taking the prednisone dose seem to help. it does not take all the pain away but at least i can move to do things.
yes i am concerned that the doctor i went to has not suggested a follow up visit and i will be off prednisone for about a week until i see a new doctor. he also has not recommended any follow up bloodwork. i am tapering by 10 mg every 5 days but again i hope being off for a week doesnt cause me a problem.
thanks for your help
lynda62707 Duffer55
Posted
tapering by 10mg at a time is ALOT!!
I'd really question that with your new doc!
EileenH Duffer55
Posted
Although it is good he is investigating other things to be sure it isn't the other potential causes of the symptoms he does seem to be a bit blind to the elephant in the room!
You say "She started me on a steroid and symptoms seemed to get better" - what dose, how long and how much better and how soon?
Your doctor seems to be stabbing in the dark and not thinking a lot. What you are describing is pretty typical of PMR - but could also be typical of a reactive arthritis in response to your flu jab as I explained on the other thread.
A PET-CT scan might well be helpful but it tends not to show much when the patient is on pred (it damps the signs of the inflammation a lot even at 10mg) and is pretty expensive - I don't know how US insurance views that sort of diagnostic tool when it is not cancer that is being considered. There are not really other tests that will confirm PMR - just rule other things in or out.
The taper you are on means it is safe to stop the pred - and that does have the advantage that the new doctor will see your symptoms in all their glory! I lived with PMR/no pred for 5 years so I know how you feel but I also think that, given your first doctor's lack of interest, you may have to put up with it.
Duffer55 EileenH
Posted
I went to an internal medicine doctor and he thinks it maybe PMR an d started me on a 30 day dose of 20 mg. and is making a referral to a rheumy. He is aware of PMR , however seemed rather dismissive of my concerns of things I have learned from doing my own research. I have been on pred for approximately 60 days now and have not had any additional blood work done. Should I be concerned.?
EileenH Duffer55
Posted
I've just posted this on your other comment:
Why on earth can't they go about things properly? And understand the way PMR works?
What time do you take the pred dose? Every morning the body sheds a new batch of inflammatory substances about 4.30am-ish. They cause inflammation and new symptoms - and the sooner after that you take the pred the less it has to do and the sooner you will get relief of the symptoms. Pred takes a good couple of hours to work in anyone, it may take longer in others. Some people are never totally free of pain and it also depends what pain it is. If you have tendonitis and/or bursitis it will take longer to fade - my hip and foot pain took a good 5 months to go away. In some people the anti-inflammatory effect of steroids doesn't last a full 24 hours - it varies from 12 to 36 hours. If you are at the shorter end of the spectrum you will have pain in the morning before the new dose of pred kicks in. It is very common.
If it were me, I would try the 20mg split into 15mg in the morning and the rest later so the effect lasts longer - and that may improve the morning pain. Try it before telling the doc...
This describes a fair approach to managing PMR:
http://www.rcpe.ac.uk/sites/default/files/quick.pdf
and this:
https://www.rheumatology.org/Portals/0/Files/2015%20PMR%20guidelines.pdf
recommends a starting dose of up to 25mg, exceptionally 30mg.
So you need to stick at 20mg for at least a month, possibly 6 weeks. And, to boot, you need to rest in the meantime. As long as there is inflammation it will worsen if you use the affected areas - especially the bursitis in hips and shoulders.
Were your blood markers (ESR and CRP) raised initially? If so, then you need them checked to see if they are falling with the pred.
The fact you have been put on repeated 20-day tapers won't have helped - it often makes it harder to get the inflammation properly under control when they allow the inflammation to flare up again and again. Yoyo-ing the dose is the worst thing to get into.
Duffer55 EileenH
Posted
Thanks so much for your advice. I did print off the two sites you mentioned. They look like they will be helpful. I don't sleep well at all. I figure I average about 5 hours a night and with my new fit bit it is tracking at least 1 of those hours awake randomly. So I can easily take it around 4. I thought I had read somewhere that is when your adrenal glands would kick in, but there probably laying dormant anyway.
Both of the blood markers were elevated. I am hoping that taking the 20 mg consistently will get me more regulated. He did say to let him know in a week how it was going. I do have another appt with a different doctor who has a better understanding of joints and muscles so keeping my fingers crossed that he will be able to help me and I can drop this one.
I tried to see if i could go on a short medical leave until I can get this figured out. I have to say that initially I wasn't feeling fatigued, but after two months of this, it is catching up. He would not let me. He was aware of PMR and GCA but I know he doesn't get it. I currently work in health care in therapy and I swear I am in worse shape than my patients.
Every time I read a post, I say to myself "thats exactly how I feel". Thank god for this forum. I only wish I knew how to navigate it better.
EileenH Duffer55
Posted
Haha - navigating the site will improve (maybe) once they sort out THIS hiatus. But I wouldn't hold my breath ...
"He wouldn't let me..." - not much of a doctor then.
What sort of therapy?
Duffer55 EileenH
Posted
occupational therapy
EileenH Duffer55
Posted
Mmmm, yes - can imagine they are in at least as good a place as you if not better at present! At least you know what to do to help yourself though. And it does get better.
Duffer55
Posted
first visit was a nurse practioner who gave me methlprednisone 4 mg pack for 21 days. symptoms decreased but returned hence, second visit to a doctor who started me on the 20 day dosage. symptoms got better, but came back. third visit was xrays and another 20 days of prednisone. i wish i would have known about pmr when i saw him because i would have brought it up. not to say if i went back to him he would maybe pursue it. but in my opinion, it bothers me that he put me on steroids without any
scheduled follow up.
when i say symptoms got better, my mornings are painful and stiff, but gets better around 10:00. i never feel great, there is numbness and achiness all day. shoulders seem to be the worst, so i am careful in what i do.
hoping new doctor will be of help. i know him personally and have had a working relationship until he left my clinic. i just happened to think of him and his skill set, so i was able to get an appointment. i do hope he orders mri or cat scan to rule out anything else. the one that worries me is cancer. my family has been hit hard last year with three siblings being diagnosed with bladder, lung, and pancreatic cancer. thanks for your advice
marian-colorado Duffer55
Posted
From 20 you have to go down by 2.5 mg per months . So it will take you 4 months to get down to 10. (or slower if this does not work) From 10 mg you go down 1 mg per month.
Duffer55 marian-colorado
Posted
Thanks for advice. The problem I have is I have no diagnosis yet. I was only given prednisone for 2 rounds of 20 days, both starting at 40 mg for 5 days; then 30 mg; 20 mg; 10 mg for 5 days each. The doctor I saw did not schedule any follow up to see how it was going. I made the second appointment with him because symptoms came back. I have an appointment with a new different provider but that is not until Dec 11. I will have finished with the prednisone a week before i can see him. I am keeping my fingers crossed.
In the mean time, I am trying to keep as much data as I can to take with me tracking the dosage and pain levels, etc. This forum has been very helpful. I get the feeling from reading these posts that the medical field may not be up to speed with this diagnosis.
i am curious about acronym DSDN (not sure if that is right) in regards to dosing down on pred. I appreciate any advice on what questions or tests I should be asking for.
EileenH Duffer55
Posted
Dead Slow and Nearly Stop - a slow approach to reducing based on the experiences of a lot of patients (and me personally) over years of PMR which really does seem to work to avoid flares and steroid withdrawal problems. It is being used in a clinical study in the north of England and is approved of by many rheumies.
This is a link to the homepage of the forum, the second post listed is the DSNS reduction alone, the third is our resources post with a lot of useful and reliable links plus DSNS in the repllies:
https://patient.info/forums/discuss/browse/polymyalgia-rheumatica-and-gca-1708
The Quick and Kirwan paper is a useful quick introduction for inexperienced GPs and even rheumatologists in how to identify and manage PMR and GCA. It's long term - repeated short courses of pred just store up problems for the future.