PMR, Prednisone, pain management
Posted , 9 users are following.
3+ years of PMR, Prednisone dose is 7-1/2m daily, down from starting dose of 15. I have always known that I have some arthritis, only visible in the thumb joints. In the past several days I have had a worsening of joint pain, not necessarily PMR pain (some bicep pain when awakening), but pain all over when I stop activity...moving around, walking, tennis, etc. I have taken some Tylenol today but cannot tell if it has helped because I have to continue movement. Eventually I will have to go to bed for the night...last night was awful...woke up quite a few times in pain. Have experienced this before I believe, but not since PMR and being on prednisone for so long.
Have been @7-1/2 for about 6 weeks. Common arthritis (cool weather change?), or Rheumatoid Arthritis? Thank you😊
0 likes, 28 replies
EileenH kathy67492
Posted
Doesn't really sound very PMR-ish, especially the night time pain. But what was your previous dose before reducing to 7.5mg?
kathy67492 EileenH
Posted
Ah, nothing like a review of my notes to clarify some things!
My previous dose was 8m for 35 days and I felt great...no need to put the KT tape on my foot or knee. Then I proceeded to do the DSNS method backwards/reversed!! Saved the flare quickly. Decided to try the alternate day taper, got comfortably (I thought) to 7-1/2m. Plugging along at 7-1/2m but don't feel as good as when I was at 8m.
The day/night of arthritis seems to have been of short duration.
I want to take 8m...but feel I should muddle thru the 7-1/2, limit my activity.
EileenH kathy67492
Posted
"I want to take 8m...but feel I should muddle thru the 7-1/2, limit my activity."
Why? There is no virtue in taking too little pred - you don't get the benefits to outweight the downsides If 1/2mg is the difference between being good and less good - take it!
kathy67492 EileenH
Posted
I will go back to 8m. I know you are right. 7-1/2 seemed like a "milestone", but...not a race to zero😊 Thank you again, Eileen.
BettyE kathy67492
Posted
I have had two bouts of PMR ( 3 years and 5 years with 3 years in between ) I also have OA in hands and now feet and maybe one knee. At one time my hands were very painful but the knobblier my knuckles have become the less they hurt.
I have not had to take Pred. for more than three years but recently suspected PMR might have returned. Asked for ESR and CRP tests and my GP added in LFT, kidney function, bone group ( what's that? ) FBC. U+ E's and BP The last two were a 6 monthly routine. ALL came back as normal with a very good BP and ESR of 2. so PMR did not look likely and the pain has lessened somewhat but, like you, I find first thing in the morning is the worst time.
I sleep like an immoveable log which is good in some ways but I think might contribute to the morning ultra stiffness. By lunch time I'm much better and by evening almost normal but I do need to moved frequently during the day if I'm not to stiffen up again.
At the moment and ever since stopping Pred. all I have taken is CLO and Glucosamine. Pain killers and I do not get on. Cannot even take paracetamol.
Some of this probably sounds familiar to you and I think you are right to suspect that weather has lot to do with arthritis symptom flares. An RA suffering friend was told by her GP that changes in air pressure probably account for some of her bad days.
Your Pred dose is relatively low now and it may be that it was the higher doses were helping the arthritis as well as the PMR, one of its few bonuses!
Wish I could be more help. All I can say is you are not alone. Hope the severe pain abates with weather improvement toughI ahve to say that very hot weather also affects me.
EileenH BettyE
Posted
"The Bone Profile is a group of tests that include the measurement of Calcium and Phosphate.Alterations in these levels may be associated with both bone and kidney disease."
There are other tests but I suspect every local lab has its own favourites.
kathy67492 BettyE
Posted
Thank you for the valuable information. A good reminder that the PMR has a mind of its own and can even come and go...and meanwhile we are getting older and all the other things are kicking in😊
maureen_33509 kathy67492
Posted
mark9992 kathy67492
Posted
I have mild to severe (depending on how I move) shoulder joint pain, which my nurse pracitioner (The Rheumy will only see me personally if death is on the line) says is likely osteo arthritis, and that a flavor of arthritis is not unusual accompanying PMR. I'm not quite at the 1,5 year mark with my PMR, and I'm at 6mg. My pred doesn't touch the shoulder pain, and the practitioner says even a larger dose wouldn't. I only hold this advice in medium esteem, but its all I've got. My family doctor had told me several years earlier that I had arthritis in my spine, but since it caused no pain I didn't give it much though.
What I have been told from several sources is that the best thing you can take is an anti inflamatory. Here in the States the top two are advil and Alieve, which are product names for ibuprophen, and naprosyn respectively. I suppose they might even have different drug names in the Euro zone. Bottom line, they are helpful. In my case I can only take them a few times a week because I built up a resistance to them early in life...more like an allergy...taking them for a disc issue. You may have better luck. Tylenol does nothing for me for anything, and I believe it is not actually an anti inflamatory.
EileenH mark9992
Posted
Um - officially, ibuprofen and naproxen, like all NSAIDs (Non Steroidal AntiInflammatory Drugs) are both contraindicated for regular use for patients on steroids. Both of them potentially have quite severe gastric side effects, as does pred. Both together increases the risk. If you want an anti-inflammatory in this scenario then a bit more pred is safer!
And how does the NP KNOW the pred wouldn't help? Just wondering...
mark9992 EileenH
Posted
The NP doesn't know and at one stage even said so. She's pulling her advice out of her bum. However, she has given me a script to get an x ray for my shoulders. I'd no idea an x ray could be helpful in such things, but then why would I know? I use NSAIDS rarely enough that I seem to get the benefits without negatives...so far.
EileenH mark9992
Posted
daniel08939 kathy67492
Posted
I also had pmr for three years and then I was off prednisone and no symptoms for three years. A few months ago I got pain in my shoulders and had x-rays and blood test and was diagnosed with osteoarthritis. I was sent to physical therapist and have been doing shoulder pt for three weeks. It is helping with pain and range of motion. What the rheumatologist missed was pmr returned. I knew it when my shoulders hurt so badly that sleep was difficult, my legs were weak, and I was very fatigued. I got a second opinion and the doctor put me back on prednisone and all the symptoms went away. This doctor believes in holistic medicine and had me on prednisone for only 38 days. I went from 60 mg to 5 mg and at the same time took
curamin (tumertic) 4 capsules morning, 4 capsules evening. The hope is that tumeric reduced the inflamation so that I will not need more prednisone. It has only been 3 days without prednisone. My prior experience is if pmr is going to return it will in 3 weeks or less without the prednisone. I will let the discussion know sometime in April.
EileenH daniel08939
Posted
"The hope is that tumeric reduced the inflamation so that I will not need more prednisone"
if it is PMR then it is a chronic condition and new inflammation is created every morning as long as the autoimmune cause is active. And that rarely lasts only 38 days, however much turmeric you took. If you continue the turmeric it MIGHT work. But I have my doubts - oh me of little faith.
daniel08939 EileenH
Posted
Define what you mean by chronic.
EileenH daniel08939
Posted
Define chronic?
"(of an illness) persisting for a long time or constantly recurring.
"chronic bronchitis"synonyms: persistent, long-standing, long-term, constantly recurring;"
"Relating to an illness or medical condition that is characterized by long duration or frequent recurrence. Diabetes and hypertension are chronic diseases."
compared with:
"Acute conditions are severe and sudden in onset. This could describe anything from a broken bone to an asthma attack. A chronic condition, by contrast is a long-developing syndrome, such as osteoporosis or asthma. Note that osteoporosis, achronic condition, may cause a broken bone, an acute condition."
It means that it isn't a short-lived illness (acute) that can be treated and is gone away - like a cold, influenza, measles, scarlet fever. The underlying cause of PMR lasts typically for anything from 2 to 6 years for 75% of patients. For the rest of us it can last even longer. It DOESN'T last for less than 40 days and stop.
daniel08939 EileenH
Posted
EileenH daniel08939
Posted
I suppose you can hope all you like - but I really do doubt that turmeric on its own will do the trick. Patients have enough difficulty getting to low doses of a very powerful inflammatory drug. But i'd be delighted to be proved wrong. Not that I can use turmeric alongside the other medication I'm on.