I need encouragement...
Posted , 21 users are following.
I have read many of your comments and feel as though everyone is really supportive.
I have had PMR for about a year and a half. I started on 20 mg of Pred. And tapered down fairly quickly over the past few months. When I started loosing my hair I took myself off of the steroid.
It has been real tough... The other day I could barely walk. I am 56 and feel 90. Is there any other medication that works?
3 likes, 75 replies
james_ensor Guest
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constance.de james_ensor
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Is there no way you can change your doctor? There are some(!) out there who understand PMR.
Oregonjohn-UK james_ensor
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JanSP Oregonjohn-UK
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constance.de Guest
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Most of us have been on this pesky med anything between 2 and 6 years. Believe me, we don't take it for fun. It gives us many pain free hours during the day. Isn't that worth it? You won't feel 56 any more, but you could settle for 60.
All the best. Constance
tavidu Guest
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Whisper2003 Guest
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james_ensor Guest
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Sorry that people are being unhelpful through their own ignorance.
EileenH james_ensor
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I don't know where you live James - and I don't know what medical insurance system you are under, but there is no other generally approved medication besides pred for the management of PMR or GCA. There are DMARDs that many doctors use in combination with pred as so-called "pred sparers" but they don't always work or seem to allow a reduction in the dose until a flare happens - and they don't REPLACE pred unless you were misdiagnosed and actually have some form of inflammatory arthritis. PMR is a vasculitis - it just looks like arthritis.
I assume you may be talking about toxcilizumab (although that is an infusion, not a pill) which has just been the subject of an extensive trial for GCA and, if the rumours are to be believed, it has worked very well in the trials. However - the results are not yet published so it has not been submitted to the fundholders for approval and that would only be for GCA, not PMR. A pilot study on about 10 patients with PMR was done in the USA and all 10 patients who completed the study went into remission in under 6 months after 3 or 4 treatments with toxcilizumab. That was a PILOT study, they are always very small. There were plans a couple of years ago for a PMR study to run slightly behind the GCA one in the UK but as far as I know it was abandoned - almost certainly because it was realised that cost would make it a non-runner under the NHS system and they would never approve it for PMR so covering the costs of a clinical trial was not going to be an economic proposition for the drug company. It doesn't fit with your rheumy's description in the context of side-effects either - even the comapny website says very quickly that it can cause serious side effects.
There is another thread on this forum where a lady in the USA has been told she is to be put on toxcilizumab for her GCA. However, because of the fact it is not yet approved by the FDA for GCA, she would have to pay for it herself as Medicaid won't cover it for her. If her diagnosis were rheumatoid arthritis they would fund it, it has been approved there for some time. She has been told it will cost $17,000 a year. It isn't clear yet whether only 6 months of treatment will actually be enough to achieve long term remission so how long she would have to pay for it for isn't known. It is possible that other USA fundholders would cover it for off-label use - but since the majority of patients on this forum are in the UK and Canada or, if they are in the USA, are probably on Medicaid, that is unlikely to apply.
If there were another pill - especially one with no side-effects - that would replace pred entirely I think the research group I am involved with as a patient representative would have mentioned it to the charities who provide the support network in the UK. I would be delighted to be proven wrong - so I look forward to the result of your query to your doctor. I'm sure my colleagues will be very interested.
Guest james_ensor
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Elijo EileenH
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EileenH Elijo
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Elijo EileenH
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judy93591 Guest
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EileenH Guest
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I started with PMR symptoms when I was 51, it hit properly at 52, 11 years ago. I spent the first 5 years like you are now, not out of choice but because the doctors didn't recognise it because my blood tests were normal. Nothing on god's earth would persuade me to go back there, I lost most of my 50s to PMR, either because of no pred or, having got it under control with prednisolone being required to switch to Medrol because I moved to a country where ordinary pred isn't available. Originally I thought it wasn't too bad - I went to the gym every morning for an aqua aerobics class after which I could move fairly freely. I worked freelance so could arrange my time as I liked. But I was never out of pain. When I finally was put on pred for 6 weeks I realised how much I had adjusted my live to live with it - I went nowhere I couldn't drive to and when I was stopped driving for a few months for something not PMR related I was in the house all day and could barely get up the stairs except on hands and knees - I couldn't get to the gym, it was 2 buses and a walk away. When the 6 weeks pred ended and the PMR symptoms came back it felt even worse and I just cried.
You can learn to get on with pred - or you can live as you are now. That is the bald choice I'm afraid. I've had a lot of pred side-effects and haven't yet had one that made me feel I'd rather the pain. It also isn't a case of just riding it out and managing with the pain. The pred also controls the inflammation that is present all over your body and is what causes the symptoms - inflammation that puts you at risk of cardiovascular disease and even some cancers.
Silver49 EileenH
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tavidu Silver49
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EileenH Silver49
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Silver49 EileenH
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Silver49 tavidu
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JanSP Silver49
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EileenH JanSP
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Actrema is toxcilizumab - we use substance names over here, they are always the same, brand names aren't. There has been a clinical trial which has just finished - waiting for the results and if it worked (and the rumours suggest it did) it will be submitted for approval for GCA, currently it is only approved for RA.
There is another thread where someone in the USA is asking about funding - was it you? As I understood her, she said Medicare won't fund it because the FDA hasn't yet approved it for GCA.
JanSP EileenH
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It was me who mentioned Medicare not approving Actemra because the FDA has only approved it for RA. I also have a backup insurance called AARP Supplement which picks up extra cost but not if the drug is not Medicare approved. If I can't find other funding do you know if the drug is available in Canada at a lower cost? Under what name?
EileenH JanSP
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The substance name of Actrema is toxcilizumab and you can always find it using the substance name - it's actually quite unusual in the UK to call things by their brand name because that can vary, especially once it is out of patent cover.
I found this from 2010 from cadth, so Canada and I therefore assume the $ sign is Canadian dollars:
"The annual cost of tocilizumab is dependent on dose and patient weight ($11,348 to $17,472 for a 75 kg individual receiving 4 mg to 8 mg per kg every four weeks, up to a cost of $23,296 at the maximum dose of 800 mg per infusion for patients whose body weight is more than 100 kg) and is similar to the annual cost of other biologics: abatacept ($18,619 to $24,825), adalimumab ($18,388), etanercept ($18,942 to $20,486), golimumab ($17,364), rituximab ($9,348 to $28,314)."
The prices don't change a lot over time usually (unless the drug company decides they can get away with it). However, the Canadian dollar is a bit wobbly at present isn't it, it's fallen from 1:1 to 1:0.74 since 2011 and that may mean the price has gone up in Canada in that time. I'm not in Canada - maybe Anhaga could ask a friendly neighbourhood pharmacist to look it up for you.
JanSP
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EileenH JanSP
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The bit that gets me is when you type in a link - and the double forward slash and close bracket turn into something!