I've had PMR since June 1st 2013, 3 weeks before my 68th birthday. It was diagnosed in early July when my ESR was 130, and Prednisolone has made getting around normal. I've been on 5mg since February this year. In Feb I was put on Risedronate following a Dexascan. My knees became intolerably painful, preventing me from walking upstairs without great pain, or even from the road up a kerb to the pavement. I took myself off Risedronate, and most of the pain went with it. A few weeks later I was put on AA. That was in June.
The last few weeks (4 or 5?) I've noticed that rising from a seat is very difficult. I can no longer get out of my car as normal people do, that is one leg out, and raise myself up turning as I do. I have to put two legs out and then press down with my dominant hand on the door cill to press myself up. Getting out of my low bed is also difficult again, either two hands forcing down on the edge of the bed while rocking backwards and forwards to get some extra power, or kneeling on the floor , crawling to the laundry basket, pressing down on that to force myself up. It never used to be like this 5 weeks ago. All my movements were normal. To get our of bed, 2 feet on the floor and stand up.
Once up sometimes I have tautness in my lower legs, but no pains As the day wears on my knees can ache, but not when I'm walking.
I do have bad fluid retention at the moment. My left leg has always been prone to fluid retention but it's now both legs and feet. I've had one 24-hour episode of my left leg weeping a clear odourless liquid. I know Pred doesn't help fluid retention. I'm taking a 'water' tablet, drinking more water, raising my legs when in bed,and walking much more in the hope of losing the fluid.
The only medications that's changed in the last few months which could affect it are Alendronic Acid in June, and a change of an asthma inhaler, (from Symbicort 400/12 to DuoResp Spiromax 320/9) about a fortnight ago. About 4 months ago I was put on 8mg Modified realease of Doxazosin for Enlarged Prostate, replacing the 4mg I'd previously been taking.
I'd be grateful for your comments, as I suspect some of you know more of PMR than my doctor, although I will make an appointment with the one doctor in the practice who understands PMR.
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Thomas45
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I have to say, for a start I would be inclined to stop the alendronic acid for the moment and see if that improves anything. You won't fall apart in the meantime! What were the results of your dexascan - do you REALLY need bone protection medication? Were your calcium and vit D levels checked before starting either the risendronate or the AA? If either were low they should have been corrected before starting AA - and checked at intervals. Are you on calcium/vit D supplements such as Calceos or Addcal for example - if you aren't you should be and your GP should prescribe them.
One possibility is that the AA has reduced your calcium level in the blood and that is making your muscles weak. Get the GP to check it.
Another possibility is muscle wasting which can happen with pred - have a look and see if your legs look thinner, are your trousers looser than they used to be? Is it also difficult to climb stairs? If so the GP should request physiotherapy to show you ways of combating the muscle wasting. I had it with Medrol but not the other forms of pred I've been on.
That is what first comes to mind - but I'm really glad you at least have a doctor appears to understand PMR! They seem few and far between!
Thanks for all your information, PMRpro, including how to edit a post, which I've now done. I'm on Calceos, and try to drink milk often, and prefer drinking goats milk than cows. No I didn't have my calcium levels tested before the Dezascan. I don't know the results but was diagnosed with ostepenia. I understand it's common amongst my age group who don't have PMR.
Not before the dexascan, before being given the risendronate or AA. I have osteopenia - but nowhere near bad enough to need the bisphosphonates and am told here in Italy - no need for therapy.
Ask to see the full results and bring them here - you do have the right to see them. We can tell you how bad it is and then YOU can make an informed decision.
Thomas, just another thought to add to those of PMRpro, Doxazosin is an alpha blocker and, apart from being prescribed for people like you with an enlarged prostate, is also often prescribed to reduce high blood pressure. As with many other blood pressure tablets, it can cause fluid retention particularly affecting the legs and feet, and could possibly be the cause of the "tautness in your lower legs" - certainly that is something that I have experienced with many blood pressure lowering drugs.
Although before this episode you have been lucky to be able to get in and out of the car in the way you describe, it is actually far better for you to continue doing it as you are now, by swinging both legs out together with both feet on the ground before standing up - that will help to give you extra power in your weakened legs for getting to an upright position. This should be reversed when getting back in the car, ie sit sideways on the seat first and then bring both legs in together as you turn in the seat. This will also help to avoid any back problems and is recommended for those with existing back problems.
If you do decide to stop the AA, I hope that will provide some improvement, otherwise the Doxazosin could perhaps be looked at, plus repeat ESR and CRP blood tests would be a good idea if only to rule out a flare in the inflammation.
Oh, and one more thing, I have been diagnosed with osteopenia but it is not at a level that needs treatment. So if your DEXA scan results show you to be at a similar level, perhaps you don't need the AA either.
"is recommended for those with existing back problems"
Actually - it is recommended for everyone - to avoid developing problems! I have a friend in the USA and we have these conversations with others every time we both attend a particular meeting! It's the same as the right way to get out of bed: turn on your side, push yourself up with the lower arm and then swing your legs out of bed. The usual way we used as teenagers isn't at all good for us as seenagers (senior teenagers).
I asked my actual GP about a dexa scan as I would like to stop the ibandronic acid I have been taking. I am on a maintenance dose of 5 mg pred. as it has proved difficult to reduce without a return of the symptoms which the rheumy after 18 months and three consultations has conceded is/was down to PMR. She has done so reluctantly because my ESR and CR levels never showed up high and the disabling symptoms are mostly in the lower half of the body (I know, I know !!!) However it does not seem surprising to me that the levels are not high as the blood tests have been when I was on the pred. In fact my ESR level is sometimes low. I do however get the all over fluey feeling when I try to reduce. I have now developed weak quads. which do not respond to pred. and are probably because of it because a muscle/nerve test showed nothing amiss.
His answer was a flat "the guidelines advise 5 years and then stop" He did not refer to the latest dexascan which I myself got through a research project which is now defunct unfortunately. He mentioned the very slight chance of jaw cancer but not the spontaneous femur fracture . This last scan had showed I had lost bone density during the time I had been taking intermittent steroids where previously I had always been above average for my age and in spite of the fact that I had doubled my exercise to help with Parkinsons. This is why I agreed to take the bisphonate meds.
So its just a knee jerk, on steroids take these tablets as well. In fact, I am not so sure he even had in mind the steroids. Even the osteopenia dx. which I doubt he has looked at is based an a discredited assumption that bone density is fairly even whereas I have a definite weak spot in one of my femurs. I believe my mother had a spontaneous fracture of the thigh bone in the same place although she always believe she tripped so I am naturally concerned about the risk of femur fracture.
I suppose I'll have to appear to be going behind my named GP's back if I pursue this with the other doctor I've mainly seen about my hip/PMR problems. I avoided taking totally unnecessary HRT in my fifties because of the dexascans I was able to access through the research project. I need to take quite enough pills without adding unnecessary ones.
Thanks very much for that. This is the post I was thinking about I note "the right had a stress fracture caused by the Alendronic Acid which they tell me they see quite frequently" It is quite clear it is cause and effect and not just association. I think I read here that someone had doctor friends who would not on any account take this medication themselves.. My mother steadfastly refused to take any meds. on a long-term basis and lived to be just short of a hundred. Likewise her sister who died aged 103. Hard act to follow.
Does anyone know how much it is to go privately if I get no joy from the GP's?
It isn't just the consultation - it is any tests and stuff unless you are lucky and find a consultant who will add you to his NHS list - and even that seems fraught with problems because they don't seem capable of joining up the dots! Oh for the old days where a GP referred you to a named consultant...
A private appointment is usually in the realms of £250 - just for the chat. If you are unlucky you will get a rheumy who has taken your money to be dismissive of you - at least when you see the same guy via the NHS it is "free".
However - it depends where you live and there are a few who are very good.
I might try the rheumatologist when I see her in six months' time After all I have not had a single Dexascan on the NHS. She arranged with the neuro to do the muscle test and he told me the result there and then but I think the MRI results of my thighs and lower back were not in time for my last appointment with her . The letter to the GP for the January appointment did not land until July about the same time as the letters about the muscle test and scan and I suspect my file had gone walkies, not an unusual occurrence in this hospital. However write ups of my appointments are pretty accurate so she does listen. The number of inaccuracies in letters from other consultants to the GP are such that I often delay opening my copy until I am in the mood to deal with their version of what I said. I would not mind if interviews were recorded. After all no one can be expected to be 100% all the time.
Yes - familiar with THAT! Their version and mine were rather different.
You can get a dexascan privately for £55 in some places - Southamption for example and possibly Bristol is a similar price. Google is a very useful tool...
I saw our Medical Practice's Nurse/Practitioner on Friday. The only score she could find was T = -1.7. After some problems with English defintions of words, (Smart meaning Sting, and graze meaning to break the surface of the skin by rubbing against something rough do not appear in the Texan dictionary, from which state she hails), she agreed for me to come off Alendonic Acid for 4 weeks to see if there was any improvement in my physical problems. If there is, then I shall have injections of something to strengthen my bones. If there isn't then it will be deemed that my physical problems are not caused by AA. I shall report back on how I get on.
Reporting back 4 weeks later. Today for the first time in those weeks I raised myself off the toilet seat without pressing down on the seat. Having received advice to 'phone the Osteporosis Society help-line, I found that my readings showed that the porosities of my hip and femur bones are denser than an average 30-year old, and an average person of my age, but part of my spine is more porous. Of course what no-one knows is how porous my bones were before starting on steroids. What I have to think about is whether I need the 'protection' of a bisphosphonate (other than Risendronate and Alendronic Acid which have caused problems), or whether to reject them. My spine may be more porous but am I more laible to fractures now than before I started on prednisolone. I've only ever had 2 broken bones in my life, one a Colles fracture to my right wrist, caused by falling over days before I was due to write my A level Exam answers, when I was 18 (I had to dictate them to a younger student to write out for me). The other was a broken little finger, when a ferocious dog took a fancy to my hand.
I've fallen twice in the last 5 months, (I'm 6' 7" tall). The first time I tripped over a cat-scratching board and landed heavily. I thought I'd broken my hand and leg, but x-rays showed no problems there. I had somehow cut open my leg with a 5" x 2" wound. I have a dent in my leg where that happened. The second time I overbalanced while putting my mobile phone on charge. I have a badly bruised shoulder.
The advisor from the Osteoporosis Society said there should be some improvement within 4 to 8 weeks, and the first signs are positive.
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