Newly diagnosed with PMR. This is awful!
Posted , 11 users are following.
My doctor started me on 40mg of prednisone which was a magic bullet for my symptoms but I had some unsavory side effects. He dropped me to 20mg and I am managing on this dose. My mornings are pure hell though. My husband wakes me up an hour before I have to get up. He gives me my prednisone and a water bottle with a long straw so I don't have to move much. An hour later, he lifts me out of bed and stands me on my feet. From there, I start moving and eventually can manage the rest of my day. I have to walk to keep the pain down in my thighs & butt. I'm currently logging 5 miles per day.
Last week I had the sed rate blood test and it had improved some so he dropped me to 15mg. Immediately my symptoms exploded. I had to go back up to 20mg. It took 2 horrible days for the pain to get back to manageable. He gave me some pain medicine which does absolutely nothing for the PMR; it just added nausea to the list of complaints.
1 like, 17 replies
tavidu kathy61958
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kathy61958 tavidu
Posted
I was amazed at how the initial 40mg dose completely took away all of my pain! Being new to PMR and prednisone, I wasn't aware of the nasty side effects. I'm happy lowering my dose but it has got to be 1mg at a time. I'm sure you know what I mean when I describe my pain as someone ripping my muscles to shreds from the inside. I'm certainly ready to be over this.
tavidu
Posted
Hi Kathy, sorry but there is no quick fix with PMR, I have had it for over 3rd years now and am still a relatively newcomer and have only just got below 10mg for the first time. It does have it's bad times but get your dose and pain level right and you can live with it, just. All the very best.
ptolemy kathy61958
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kathy61958 ptolemy
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Thank you. It is so nice to talk to people who understand what I'm going through. My neighbor said "put Icy Hot on it" absolutely nothing but prednisone helps me.
EileenH kathy61958
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Warmth used properly probably will help for the same reason your walking probably achieves pain relief - except at a cost. The exercise leads to vasodilation (the blood vessels widen) and imroved blood flow in the muscles and part of the pain is a build-up of lactate in the muscles from your 5 mile walks which isn't cleared normally. Many people found that using an electric blanket in bed BEFORE getting up did the same sort of thing so they could move enough to get out of bed and into a warm shower where they could do GENTLE stretches - which aslo helped get going. In my days of "PMR no pred" I fell out of bed, literally, got into a swimsuit and joggers and crawled to the car - to get to the gym which had a warm pool (29C) and a daily aquafit class. I couldn't do it at the level most people could - but I did it at my level. By the time I had finished I could move more freely - even well enough to do a Pilates or yoga class AT MY LEVEL and adapted for me. The steam room and sauna were also bliss. I assume that an infrared cabin would help too though I have never tried it. The earlier in the morning I had the aquafit class the better day I had and the weekends with no classes were less good.
I'm sure you are saying "she isn't as bad as me" - but remember it was all done with NO pred. Not out of choice and I don't recommend it as an approach but it did allow me some life as long as I had a car! I couldn't go anywhere without one - I couldn't walk more than a few hundred yards.
amkoffee kathy61958
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I wish doctors would think a little bit. Of course your sed rate was down, you were taking prednisone. He should never have dropped you down to 15mg when you weren't functioning on 20mg. See if he will let you go back up to around 25. Then take the extra 5 mg at night, preferably before bed. But some people have trouble sleeping on it, so if you do then try taking it a little earlier in the day. Good luck on this. Next month will be my 1 year anniversary and in May I had to go all the way back up to 15 mg.
kathy61958 amkoffee
Posted
Exactly! I had been on 40mg prednisone for the first week and then dropped to 20mg for the next 3 weeks, of course my sed rate was lower! Initially my sed rate was 54 and had gone down to 33. Who would have thought that a 5mg drop would devastate me? Sweet Jesus, the pain seemed almost worse than when I was first diagnosed. I honestly don't think the 20mg is enough because I'm fighting pain throughout the day, but it's a lot better than 15mg!
Rimmy kathy61958
Posted
Hello Kathy
That sounds like a dramatic drop in your Pred dose - which is taken primarily as many others here will attest - to lower the inflammation level in your body - and it is this - and finding the right level for you - which reduces your pain and stiffness. Many doctors have the odd idea that getting you 'off' Pred is the main objective - almost as soon as they have prescribed it - regardless of the returning pain people experience.
The way you describe getting moving in the morning sounds like your inflammation levels are not being adequately dealt with at all. Yes some side effects can be a problem - but depending on their severity and type - many can be adequately dealt with - and will also diminish as you (slowly) reduce your steroid dose. 'Slowly' is the optimum word though and effective methods of tapering your dose are discussed frequently on this and similar forums. Also - if you are clocking up '5 miles a day' this sounds like FAR too much at this point in terms of dealing with associated fatigue and stress on your body - PACING yourself and getting rest as very important - and you will also find lots of discussion about this here.
Apart from the many very informed responses you will soon get here it is also helpful to do some keyword searches here to read some older threads on some of these subjects - well I have found that very useful to get a broad perspective on the experiences of others.
Best wishes
kathy61958 Rimmy
Posted
Thank you, Rimmy
You're right in so many points you made. No, my pain isn't adequately controlled. I fight pain all day long. I have no choice but to keep walking; it's the only way to keep the pain in my thighs from overwhelming me. Mornings are horrible for me. My husband bought a padded toilet seat because sitting on the backs of my legs was excruciating and tearful.
I actually felt the need to apologize to my doctor for having to go back up to 20mg after two days of agony. He wants me off of it yesterday. I'm learning so much here and I truly appreciate everyone's input.
I initially came here because someone suggested deep tissue massage. Now, perhaps I do have a low pain tolerance, but I can't imagine someone kneading my already inflamed muscle tissue. I though I might find some guidance.
Rimmy kathy61958
Posted
Feeling you have to keep moving to avoid pain must be utterly exhausting and totally counterproductive - and this just shouldn't be happening. Nor should you feel the need to apologise to any doctor for being in pain that they haven't been able to assist you with ! You do however need to have a supportive doctor who understands how this drug works and how that can best benefit you with management of any side effects. It is vital that you take a sufficient dose to get the inflammation down and then taper very slowly so you find the level which manages your pain - by the sound of it you will likely have to taper 'up' a few mgs for awhile to achieve this. If you aren't happy with the attitude or knowledge level of your doctor try another one if you can. Things can and will improve.
Best wishes
EileenH kathy61958
Posted
Massage of any sort won't help PMR - and in fact it may make it feel worse as it releases more of the inflammatory substances that cause the problem.
Where massage may help is later if you realise that there are muscle problems left over that the pred isn't dealing with 100%. Something called myofascial pain syndrome is common alongside PMR and that leads to muscles being tight and even in spasm.It does respond some to higher doses of pred but then returns at lower doses. A good massage therapist can target these tight muscles and use techniques of manual mobilisation which ease the tightness. I have just had a series of 12 massages by a physiotherapist at the local hospital - wonderful! It cost me 53 euros in total for my co-pay! It isn't entirely gone - but the difference is palpable. Yes, it hurt at times as she worked on the knotty bits - but I knew that the long term result would be worth it. I used to have Bowen therapy during the 5 years I had PMR with no pred - that doesn't hurt and did help too.
But neither massage nor Bowen will do much for PMR itself - except Bowen is very relaxing and uplifting therapy in itself so often makes you feel better in that sense.
kathy67492 kathy61958
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I am genuinely sorry that you are. Member of this club!...but a great group of folks and lots of support😊 First off, please take more than water with the prednisone...yogurt, or toast or something...you will destroy your stomach otherwise. Hard to imagine that the 5 miles a day is ultimately helping...you need to REST...even just 20 minute increments. Pain meds usually don't help with PMR, but prednisone should manage the pain if you are on the right dose. Others wil have dosage suggestions for you.
You are at the beginning of a journey that could take quite a while, but you will start to feel better. Take care...
celia14153 kathy61958
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I also think that this is your illness, your body. A lot of us find that we know more about this than our GPS. I agree that you should find the dosage that manages the pain - I had to be on 25mg for a while, some need more initially. Then you can start the pacing and rest you need. It was the fact that my normal resources didn't work - physio, massage, chiropractice - that alerted me to the fact that this was an illness not normal response to exercise. My advice is sort the pain, stabilise for 5/6 weeks then slow tapering. Rest, short walks, pace. Talk to your GP and if he or she insists on these sudden drops try to see someone else in the practice. And the very best of luck!
EileenH kathy61958
Posted
I suggest for a start that you cut the amount of walking you are doing. And perhaps your husband could wake you 2 hours before you want to function - because that is how long it takes for pred to get into your system and start working.
To explain my first comment - the pred is to manage the inflammation and so the symptoms. It does nothing to the actual underlying autoimmune disorder that is making your immune system unable to recognise your body as self so it is attacking body tissues in error. That continues to rumble away in the background and makes your muscles unable to tell you when you are asking them to do too much and when DOMS (delayed onset muscle soreness) develops it takes far longer to recover because your muscles are unable to repair themselves normally.
40mg is a very high dose to manage PMR - it is the minimum dose used for GCA. The maximum recommended starting dose for PMR is 25mg and then you need to remain there for 4 to 6 weeks until the symptoms have improved as much as they are going to improve and your blood markers have fallen to a stable and normal level. Only then should you start tapering - and by not more than 10% of the current dose, so abslutely not more than 2.5mg at a time - which usually works down to 15mg in fact though for some people it is still too much. The level of relief you have achieved on that starting dose is your guideline and you will be looking for the lowest dose that allows that without an increase in symptoms. You might be lucky and be pretty much pain-free but most people don't manage perfection. And YOU have to do your part by pacing and resting appropriately.
But your doctor and you also have to understand that PMR is not a short term illness, it is a chronic autoimmune vasculitis that produces rheumatic symptoms and it takes anything from 2 to 6 years for it to burn out and go into remission in 75% of patients. It is like rheumatoid arthritis without the joint destruction - and at present the only way to manage the symptoms is pred. Yes, pred has side effects and they scare most doctors and patients silly. But most of the side effects can be managed when you know how: for example, weight gain can be limited by cutting carbs drastically and that also helps reduce the risk of steroid-induced diabetes; changes in bone density are NOT inevitable, my BD has barely changed after over 7 years on pred. I have no apparent side effects - but I do have a good quality of life. There are things I can't do - but I have found other occupations and some of the things would have stopped anyway as I aged. I can't walk for 3 hours without payback - but I can walk for an hour, have a rest over lunchtime and walk another hour without killing myself.
This is a link to the home page of this forum. In the third pinned post you will find our "reading list" - you (and possibly your doctor) will benefit by reading the "Bristol paper" which was written by a top UK rheumy in the PMR/GCA field to help GPs understand how to manage them. And in the replies section you will find the Dead Slow and Nearly Stop tapering approach which many people on the forus have used successfully.
https://patient.info/forums/discuss/browse/polymyalgia-rheumatica-and-gca-1708
At the bottom of the reading list are a couple of links to excellent resources about pacing, the second is particularly good. Also google "the spoons theory by Christina Miseriando", "gorilla in the house by batsgirl" and "13 types of Sjogren's fatigue" for articles that will help you understand what is happening in your body. They aren't labelled as "for PMR" - that doesn't matter. The principles are the same for all sorts of autoimmune disease. And when it comes to autoimmune disease, PMR isn't a bad one to have. It doesn't kill or permanantly disable and can be managed pretty well for most people by pred and lifestyle adaptations - and some of them are not too onerous. But there is one basic fact: don't go at this with the attitude that you are going to "fight" this tooth and nail. That wastes energy you can use better elsewhere.