Saw the Dr. today and she said when she upped the prednisone to 15mg, two weeks ago, within 2 days I should have been feeling 80-100% better; which I didn't. I felt better but not 80-100%. Probably more 60-70%. So, she is looking at other things that might be the problem, like fibromyalgia. I have had fibro for 20 years, and this is not the pain of fibro.
She did order me the timed release prednisone to try as someone suggested here.
I will take 10mg at 10pm and the rest sometime the next morning.
Anyone else experience this?
Thanks a Lot
Love this site.
Lin
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Linny3
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I hope you can figure out what is wrong. These diseases can be so confusing and frustrating. I am so sorry to hear you are going through a difficult time. I will be thinking of you.
I started at 10mg. I felt better within hours, but I was still in a good deal of pain. After a month, I was given 15mg. That was better, but pain lingered, especially at the beginning and end of the day. Another month went by, and I was put up to 20mg. After a couple of week, I was doing a soft shoe routine in front of my rheumy.
I think you're supposed to feel 70‰better, but my rheumi, too, seems to think I should be as good as new.
I was started on 10mgs, nothing happened so I upped it to 15 and again nothing. I needed 20mgs to feel 70% better. I believe it depends on the patient's weight but I could be wrong, maybe on the severity of the condition, too.
Doctors who think you should feel like your old self again after starting pred make it so difficult for the patients. They mislead us into having false expectations. It made me doubt I had PMR despite all the correct information on the forums.
My rheumie said that as I was in pred I would be able to carry on as normal again. He also informed me I had a 0% chance of getting GCA now I was on pred.
Your doctor is in cloud cuckoo land. 15mg is not always enough even after 2 weeks - you might feel much better on 20mg, or even 25mg, which are the current recommendations for the starting dose:
A 70% improvement in a short time is taken as a reasonable response and that figure can be found in some of the criteria. It depends to some extent on whether you have other add-ons - myofascial pain syndrome or carpal tunnel syndrome are both often found in PMR and they don't respond as quickly as muscle stiffness for example. If you have hip or shoulder bursitis they also take much longer to resolve on oral pred. I had a dramatic improvement in under 6 hours and could move normally again but full pain relief took a few months at 15mg. The foot and hand synovitis took a good 5 or 6 months - it was BETTER sooner but not gone. Some people NEVER achieve 100% improvement, especially if you have had PMR for some time - there are other things that don't respond to pred at our age!
There is a good reason for the dose range they suggest - too low doesn't work and you run the risk of thinking it isn't PMR and too much achieves an improvement in other things so a mis-diagnosis is possible. And no-one absorbs all the oral dose: some people absorb 90% while others only absorb 50%. I may absorb 90% of my 15mg dose so have the benefit of 13.5mg, you may only absorb 50% and have the benefit of 7.5mg. YOu can't expect the same result...
Do you have any information on dose absorption? I feel it makes sense but when I mentioned it to my rheumy, as he frowned at me that I haven’t reduced below 10 in between my appointments, he looked at me as if it was complete twaddle!
I feel that I never get 100% relief over 24 hours, quite a few good hours though and there’s plenty times I can feel almost normal and that is irrespective of dose. Dropping below 10 though I sometimes feel a lot worse and even wonder if the prednisolone is actually doing anything.
I’m finding getting to 8 a little difficult so feel I might have to hang around 9 for a while. I explained to him that I increased my dose, only by 1mg, when I had to deal with another health issue before Xmas and then had a little flare around February so increased to 11mg but at the time of my appointment I was feeling pretty happy with myself settled on 9. It has gone a little awry again so his 1mg drops are never going to work with me, it’ll have to be 0.5 and dead slow. He says very little and doesn’t encourage me with my tapering but at least he doesn’t push me the other way, perhaps that’s the silver lining! And he rarely if ever acknowledges any information I bring from the forum.
My original information was from pharmacological statistics relating to pred. The bioavailabilty is generally quoted at 70% - but I know I found a study that said that that is an average figure and in fact it can vary from 50% up to 90% for oral doses. I've looked - can't find it again because many papers I have seen in the past are now behind a paywall and all I can see is the abstract which often tells me they measured what I want to know but doesn't give the result!
A lot of things can influence how quickly and how much pred is absorbed from an oral dose and today I found another factor which may well affect many pred patients: taking antacid medications influences the amount of pred absorbed. The study was done some time ago, before routine use of H2 antagonists and PPIs but there was a clear difference in patients taking antacid medication. If they have an effect - what effect does almost total elimination of acid production with a PPI have?
Thanks for that. I already split my dose and have done for some time. That really works for me but more recently I’ve been struggling with knee pain and stiffness and my knees can ache overnight. Have no idea what I should do about it as everything else feels pretty good so don’t want to increase my dose. Paracetamol and putting my feet up helps but can’t do that all day. Might ask for steroid injections??
It is a strange thing how the PMR appears to travel through the body. My arms and shoulders are ok after being very painful in the early days but now my knees are now being attacked whereas I never had any knee pain in the beginning.
It’s a weird and wonderful thing this PMR......assuming that’s what I have. My rheumy did hesitate a little at last appointment in June doubting his PMr diagnosis and acknowledging I have some sort of inflammatory condition but not sure what. I think it’s because I haven’t tapered quickly enough that he has this idea.
Do you have much "joint" discomfort as opposed to muscle problems? It might be worth asking for knee imaging while they are sore. I had a knee problem recently - was sent for an x-ray where they found nothing and it all went away a week or so later! I'd had it at least a couple of months!!!!
Hi Lin. Since you mention she upped your pred to 15mgs I assume you started on 10mgs? If so no wonder the difference you felt was minimal. Take heed of PMRpro’s advice. Since you have had 60-70% improvement I am thinking either your dosage is not right for you or your view of what constitutes 80-100% and what GP’s perception is may differ? I know I found putting a percentage in terms of improvement very difficult, engaging my Rheumy at the time in a philosophical debate about shared expectations!!! At least it helped me to assess against shared criteria. Might be worth printing and taking the info PMRpro has linked to GP rather than dismissing PMR possibility at this stage since 60_70% is still marked improvement and initial dose was nowhere near the recommended starting dose???
I started at 20 mg. 18 mos ago. got down to 6 mg. in that time. Then all fury hit me. Went back to 10 mg and then to 15mg for 2 weeks and will be tapering from there.
Just feels like I should feel better. Unfortunately I have many side affects with the pred. that are serious, osteoporosis and fractures, eye issues, headache and swelling. Sooo what is best to deal with? the 40 million dollar question. My decision is to take the 15mg or more for 2 weeks and do a slow taper, very slow and worry about the side effects as they happen. Also, am hoping to try the slow release pred. Taking it at night and midday.
Sorry Lin. I misunderstood and thought you were a newbie starting on 10mgs dose.
Since you have prior experience and you mention other issues including eye issues and headaches and say you think you should be feeling better than you are, are you thinking flare? Or are you thinking signs of GCA? Or possibly a problem with adrenals kicking in since you were previously at 6mgs?
Isn't that always the problem, knowing what is going on. I just don't know, so I am going with a flare and try and manage it. It has been so long since I felt well, I don't know what it feels like anymore. I hate the thought of making the rounds of drs. (once again) only to come back to pmr and it's management.
Unless you are finding pain relief doesn't last all day (until bedtime), I don't think you should split your dose at this early stage. Try taking the whole 15 mg (or 20 if that's what you're experimenting with) at one time, preferably the morning, and see if that single large dose really does zap the pain and last through your waking hours. It is true that some people end up with a split dose, or taking their whole dose in the evening, but it's closer to the normal body rhythm if the morning dose works for you.
When I first got diagnosed my doctor said take 20mg and if in three days you feel better then we know we are on the right track and bingo on the third day I was walking around like nothing was wrong. It has been a long process and after DSR I am now down to 4mg a day.
My rheumy and I discussed my response to pred as well, and I found it difficult to "measure" and come up with a percentage. At one point I said I felt as if I had a 70% response and she mentioned if it was any lower she would suspect I did not have PMR.
When I mentioned other factors that might influence my response (dosage related to my weight, pre-existing chronic knee injuries that have yet to be treated) she would not acknowledge them?? At my last appointment she mentioned me having something else and introducing Methotrexate (although I've only even been on pred for 10 weeks) because my tapering according to HER schedule did not go smooth and I had a flare.
Diagnosis and treatment for PMR seems complex and individual and often not definitive, yet some physicians want us to fit into the "box" that the medical profession has created.
Very frustrating to deal with Dr.'s who have a limited "textbook/narrow-minded" approach to healing from PMR.
Hi PRM CANADA. Your GP sounds like my Rheumy who also wanted to introduce Methotrexate into the equation a few months into treatment.
Having swotted up on info on this site I politely refused and told him that the pain in my knees and back of neck prohibited decrease despite low blood results.
This prompted him to do some more tests and sure enough knee probs are something different entirely, whilst neck pain is going to dealt with via injection in a couple of weeks. Once this is done, maybe, just maybe reduction from 8.5mgs will start to happen, without the need for Methotrexate!!!!!
Make her listen and if she won't request a referral to someone else who might!
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